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Hi Morgan-Morgan! I was just thinking about you and wanted to tell you how much I love and miss you! Xoxoxo

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Hi Morgan-Morgan! Happy Groundhog's Day!! Last night it hit me that today was Groundhog Day... and all I could think about was you! I remember how we made our little groundhog puppets 4 years ago. It was so much fun! I just loved it! I miss you so much, sweetie. Clayton has been sick for the past two weeks, and I have been so grateful that Jackson did not get what he had ~ I think that he has had an angel watching over him. Thank you so much. Morgan ~ I love you so much! I wish I could just pick you up and give you a BIG HUG! That was the best feeling in the world, baby girl! Please stay close to us ~ we love you and miss you so much! xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox

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Hi Morgan~Morgan! I hope that you are doing well, sweetie bird! I woke up around three this morning, and all I could think about was you! I have been having these wonderful dreams this week where I wake up and I just know that I have just been with you. It's hard though to wake up and realize that you aren't there. But I love it! Every second I have with you ~ even in my dreams ~ I treasure! I love you so much, baby girl ~ and I miss you always!

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I woke up this morning having a dream about Morgan, again. I am so thankful for these dreams, because I feel like I get to spend time with Morgan. This morning I dreamed that I was in the white van with Morgan, while Zeke and Clayton were going into the doctors office. Morgan was having problems breathing, so i was trying to cough her, and give her nebulizer treatments to stabilize her. I think that I wanted Zekie to call an ambulance so that I could get oxygen for Morgan. The ambulance came, and they took Morgan. They weren't anything like the paramedics that we really met. They wouldn't let me get to Morgan, and removed the ladder to get up to the back. I remember just jumping up and down trying to find out what they were doing, and trying to tell them what she needed. I heard one of the paramedics say, "I don't care if you have to trach her, just get an airway open." That's when I woke up. It was a good dream, though, because she was here, and Zeke was 13, and Clayton was 5, so that means that Morgan was 4, and she was here, and I knew that she was going to be okay. Oh well, that was my dream. I just want to remember them all.

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December 04, 2006

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Everyday that we had with Morgan was just wonderful ~ she made sure of that. She was the happiest little girl I have ever known. Even though, Morgan couldn't walk, she could dance. She danced with her eyes, she danced in her seat ~ she just danced! Morgan was so much fun to be with ~ I loved every minute that I spent with her. And I was so proud of her ~ always. Not because she had SMA and found so many ways to do things, or because she was so smart, or because she was so beautiful, or because she was so funny. I was always so proud of Morgan, just because she was Morgan.

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December 02, 2006

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This morning I woke up thinking about Morgan... thinking about the way that she woke up the first Saturday in December, last year. She was grumpy ~ and she was never grumpy. She didn't want to say, "It's a beautiful day!" like she normally did. Finally, she did it for me. Today's been hard ~ I have tried to keep busy ~ I cleaned bathrooms, the kitchen floor ~ I just wanted to keep my mind occupied. For some reason while I was cleaning the floor in the kitchen, I looked at the clock ~ it was 1:14pm ~ last year on this Saturday at 1:14pm I still had my little girl... and I had no idea I was about to lose her. It hurts just as much today ~ maybe, probably even moreso. I didn't realize that today was going to hit me so hard ~ I thought as it loomed in the future, it's just another day ~ and it is, but it's another day without my baby girl, my Morgan. Oh, I miss her so much!

Date:

November 22, 2006

Today

Morgan is working overtime right now, and what appropriate timing... right before Thanksgiving, and I am so thankful for all these dreams! Last nights dream was different. She wasn't here from Heaven. She was just here ~ not gone. She had never gone. December 3, 2005, had happened, but she was okay ~ it was just a close call. In the dream, I was thinking about how lucky we were to still have her here. She was asleep in her pink and yellow pj's, and I went into her room, and just held her ~ I just held her and held her. It was wonderful... until I woke up abuptly and just started moaning. Moaning that it was a just a dream. Those are the hardest dreams, and also the best. The feeling of her being here is so wonderful, but then I wake up and lose her all over again.

Date:

November 21, 2006

Today

One thing that I forgot about my dream about Morgan from the night before last (entry 11/20/06), was that Morgan was so excited and told us that her new puppy was going to sleep with her every night. The first thing I thought of was the little silky terrier's hair getting into her bi-pap mask! I can't believe that's what I thought! So silly!

Date:

November 20, 2006

Today

That Morgan really knows when I need her. This morning I had another vivid dream about her. I dreamed that my Aunt Debbie (that passed away this past summer from cancer) brought Morgan to us for a visit. She flew Morgan here in a helicopter?!? Morgan walked in the house and Sissy was downstairs. Sissy started called me (I was upstairs). She told me to hurry because Morgan could only stay for an hour. I stayed upstairs ~ hoping that if I waited, we could keep Morgan here. Before too long, I didn't hear Morgan talking anymore, so I ran downstairs. Sissy said that Morgan had gone to see her girl cousins, and mine. After a few minutes Morgan walked back in the kitchen. She had a silky terrier in one hand, and a Daytimer (I always have a Daytimer) in the other. She wanted to show us ~ Daddy, Zekie, Clayton, Sissy, and me ~ her new puppy. She put him on the floor and he licked her face ~ she just laughed and laughed.

Date:

November 18, 2006

Today

This morning I woke up just after having a wonderful dream about Morgan. We were all in our den, and Aunt Debbie came by with some people that she worked with (the people in this dream weren't really people that Debbie works with, though). Debbie was being her normal sweet self saying to the other three ladies, "Well, I'm ready whenever you all are ready to go." But they weren't getting the message. Then all of a sudden, Morgan appeared sitting on a desk in our den. I saw her and immediately went over to the desk. She looked a little bit older than she did when I last saw her (maybe she was four years old). She was taller, and a litte bit thinner, but not skinny. Her hair was longer, and was more strawberry blond than before. It was still straight as can be ~ just like her mommys! I stood before her and said, "Hello!" (We use to have a little dialogue that we repeated everyday in her home schooling, and it started with "Hello!") She said "Hello!" back to me, and I was about to prompt her with the next line when she raised her hand to my mouth to stop me from saying it (this was such a Clayton move), and then she said it, "How are you today?" I said, "Fine, thank you. And how are you?" she said "Fine, thank you." And then I said, "I love you, Morgan" and she said, "I love you more." Then I woke up ~ I was so happy, and so sad. I felt like I spent time with her, but I also felt like I had missed a year of her growing up. All in all, it was a great dream.

Date:

October 28, 2006

Today

Yesterday I took Zekie and Clayton to the pediatrician. They both have an upper respiratory virus going on. I was thinking about last year when I took Zekie, Clayton and Morgan in for their flu shots. I remember we were driving to the office, and they all started singing "Flu Shots! Flu Shots! We're going to get our flu shots!" They sang it all the way there. Then, we went in, and they quickly assigned us to a room, and they were still singing away! Finaaly the nurse came in with the box (with the shots inside) and she said said, "Okay, whose first?" Morgan started crying, and Zekie said, "Clayton!" I thought it was so funny! So Clayton was first, and he didn't even flinch. Next was Zekie, and he did great also. Finally it was Morgan's turn, and she cried, but only for a minute ~ all in all they were terrific!

Date:

October 22, 2006

Today

This afternoon, I started looking through some drawers in our living room, and I found some pictures of Morgan from when she was about 18 months old. Oh, she was so beautiful. But she was so sweet and so smart, too. She was the whole package. It's hard to look at the pictures ~ it is just so painful, but at the same time ~ it's impossible not to look at them. I miss her so much ~ I miss her jokes, her hugs, the things that she would say. Sometimes it is easier for me to just not think about it, because it is just so overwhelming when I do. It is just one week until Morgan's fourth birthday ~ I just can't believe I've missed so much time with her...

Date:

October 21, 2006

Today

This evening Clayton's voice sounded a little bit raspy, and I told him that it sounded like he had a frog in his throat. Of course, he was extremely concerned that I thought a FROG was actually in his throat! Once I explained to him that I was just talking about a cough, he said, "Oh... Morgan used to get a frog in her throat every morning." I said, "Some mornings she did." That is when I remembered how we taught her to cough. I would turn Mo-mo upside down with her legs over my shoulder, and pat her back. Then I would say, "Let's get those frogs outs!" and Morgan would kinda of growl/cough. But it worked.

Date:

October 20, 2006

Today

For the past few days, I have felt so close to Morgan. It was beginning to feel like I was forgetting things about her. I was waiting in line one day, and I almost couldn't picture her face ~ her real face. All I could envision was that "angel picture" of her. That is a good picture, but I don't think it captured the real Morgan. My Morgan had an easy smile ~ the Morgan in the "angel picture" did not. Sissy, and I tried for a half an hour to get her to smile. Finally, Zekie came in and quickly had her smiling ~ she never could resist her big brothers. Anyway... lately, I can picture every detail of her face, her smile, her teeth, everything ~ and I am very grateful for that.

Date:

October 19, 2006

Today

Yesterday when I wrote to Morgan, I wrote that she had sent me some special signs this week. And these are really incredible... Well, first, on Monday I was thinking about how much I thought about Morgan while I was flying. Just being up in the clouds ~ just made me feel closer to where she is, so I asked Morgan to send me a sign in the sky. Of course, then I told her to forget it ~ I don't like to ask her to do things for me. Anyway, after I boarded the plane, I looked out the window, and I saw the biggest rainbow I have ever seen. It was huge, and the sun was right in the center of it. It has been years ~ at least 15 ~ since I have seen a rainbow... and it was in the sky... so I think it was a sign from my little angel. The next thing that was pretty incredible was that I was talking to a gentleman as we boarded the plane, and he ended up sitting right in front of me. We talked a bit. I felt good because I told him about Morgan. Sometimes I can't talk about her ~ I just shut everything off and close up, but I am very thankful when I can talk about her. It turned out that he thought I looked familiar ~ he recognized me from CHKD (3rd Floor ~ where the PICU is) in December. He even remembered that I was wearing blue sweatpants, and when he saw me, he thought I must be going through the worst possible thing. Of course, it had to be me ~ and I was. Very strange, that we would be on the same flight, and he would recognize me. One other thing that happened... I had an appointment and as I walked into the building, I saw a guardrail with graffiti on it. That’s not really a big deal, but as I got closer to the guardrail I could make out a M... then an O... then a R, the next letter could have been a G (but it was not as clear as the other letters)... then an A... and finally a N! I walked past it ~ thinking that was really neat, but then I turned around and walked back to it ~ just to make sure my eyes weren’t playing tricks on me ~ they weren’t. I am so grateful that Morgan is always so close.

Date:

October 10, 2006

Today

Tonight ~ after Clayton's bath ~ he pulled out his "Silly Golf" game. About a year and a half ago, MJ (www.mjthesmaqueen.com) asked some of the parents for information about our SMA children and recreation. She was writing a paper for school. I instantly thought about Morgan and this golf game ~ I know it sounds strange, but here is what I wrote to MJ, and what she used in her paper: This golf game was actually a gift for Clayton (I would never have thought to buy it for her). We were going to throw it out, but Clayton found it in the garage and started playing it. Of course, Morgan said, "My turn, my turn..." so I held her up and tried to putt, but that did not work very well. So I told Morgan "Let's just try throwing it into the hole spot." It is really cool, because there are these three little golphers that stand around the hole, and she likes to "whack" them down (with her hand), and then throw the ball into the hole ~ then the ball is shot back out of the hole, and she sits at this little table where the ball (for some reason) always lands in a little holder. She really loved that game and had so much fun playing with it.

Date:

October 08, 2006

Today

Today I was looking at Morgan's Halloween costumes ~ she had more than any three year old should have had (especially when she didn't even dress up for her first Halloween). Her first costume Aunt Debbie bought her ~ it is a Barbie Ballerina costume ~ and it was perfect for Morgan. Morgan was (and really still is) always on Aunt Debbie's mind. She would come by after work ~ to see Zekie, Clayton, and Morgan ~ but Morgan was always pretty sure that Aunt Debbie was really only there to entertain her for as long as Morgan could get her to stay. First, she would have to have Aunt Debbie's sunglasses, then she would request that Aunt Debbie blow bubbles with her chewing gum. Morgan could come up with all types of things to keep Aunt Debbie here. Morgan and I (well, our whole family) is so fortunate to have Aunt Debbie in our lives.

Date:

October 07, 2006

Today

Today was miserable, weather-wise here ~ lots of wind and rain. So, Clayton worked on perfecting his spin art skills. Then this afternoon we decided to frame his work. I also remembered that Zekie had painted a panda bear last spring. After framing Zeke, and Clayton’s work, and hanging them on our “wall of art” I felt... sad. So. I went looking for some of Morgan’s artwork. I found her hand print wreath, candy cane, and gingerbread man That we made December 2nd and 3rd. I used her favorite sparkly red paint (paint that she had under her fingernails in the hospital the night of Dec 3rd) to paint the background, and glued her pieces to the background. I finished it up and hung it with the boys work ~ I love it. I was starting to worry that her art would fade ~ so I feel better now that it is preserved (a little bit).

Date:

October 06, 2006

Today

I woke up in the middle of the night last night ~ thinking about Morgan. I hope that I had a dream about her, and that is what woke me. If is was though, I don't remember it. I was thinking about her sleeping. I remember that when she was in the hospital (the first time ~ March, 2005) I noticed that when she was sleeping sometimes her eyes were open just a little bit. I learned that this was when she was in that deep REM sleep. Later, I noticed that when her heartrate dropped (and the brady alarms went off), she was always in this REM sleep. I rationalized that her heart rate being lower in REM sleep was normal. I even researched it online, and found a study that showed the heartrate does decrease during REM sleep. I really wanted everything to be okay ~ I was so happy, and I would have done anything to keep Morgan here.

Date:

October 05, 2006

Today

Tonight I was trying to think of some sort of craft for Clayton to do ~ he is very excited about Halloween ~ like he is every year. I remembered that last year Clayton and Morgan made finger puppets. They were perfect for Morgan because she could move her fingers so well. All I could think of was making a ghost. BUT, Morgan thought we should make a black cat, and a witch also. Clayton thought we should make Frankenstein. And we did ~ we made them all. Morgan and Clayton would make up dialogues (or repeat dialogues from Sponge Bob episodes). It was so much fun to watch them play and interact with each other. I still love to talk to Clayton (and, of course Zeke) ~ to know what he is thinking, to see how his mind works, to listen to his ideas, and jokes (that are so not funny, it's funny). But afterwards, I always think, "What would Morgan be thinking about now?" "What kind of jokes would she have?" (I know they'd have to be funnier than Clayton's ~ or at least I hope so!) I try to be grateful for what I have ~ it is just hard sometimes, because I know what I don't have. I hope that makes sense...

Date:

October 04, 2006

Today

Today I was thinking about last year when Clayton played soccer. Zekie, Morgan, Bill, Sissy, GrandDaddy (sometimes), Aunt Debbie, Uncle Billy, and I would all go to Clayton's soccer practices and games. That's a lot of cheerleaders! I remember Morgan was the biggest cheerleader of all ~ she would say, "Yeah! Clayton!!" She was always so proud of both of her big brothers.

Date:

October 03, 2006

Today

This is Morgan's journal, and I believe that what I write here should be about Morgan ~ and it is. But I know that Morgan would also be very sad about what happened to the Amish girls in Pennsylvania yesterday. My heart breaks for their parents, their siblings, and their community, so please keep them in your thoughts and prayers.

Date:

October 01, 2006

Today

Today I found one of Morgans snack bags. Last summer (2005) I made Zekie, Clayton, and Morgan each their own “snack bags” everyday. They each had their favorite foods and drinks in the bags, and they could choose their own snack when they wanted snacks. Morgan loved her “snacks” which were actually Cheese Doodles. ~ This is kind of a funny story ~ Another SMA mom told me that Cheese Doodles were really good for getting our children to open their mouths really big (stretching), so I started giving Morgan a few Cheese Doodles everyday. I didn’t want my 15 month old baby going around saying that she wanted Cheese Doodles, so we called them snacks instead. So, today I found the bags ~ they have her name printed in hot pink with a flowery pink wreath above her name. I printed the wreath on her bag so that Clayton could find it in the fridge. That was before he could read (not that he can now, but he does recognize names). I have thought about those bags all day, and how much Mo-mo loved them.

Date:

September 30, 2006

Today

This afternoon, Bill, Zekie, Clayton, Sissy, Aunt Debbie, Uncle Billy and I all went to the Neptune Festival to see the Sand Castle Contest. The sand sculptures are truly amazing ~ it's hard to believe that they are made out of sand. My mom and I were walking by the last two professional sculptures and the second to the last one was, "The Angel of Grief." Under the sculpture it said, "Never Forgotten." I have never seen that type of sand sculpture in the Neptune Festival ~ but I kind of feel like it was there for a reason. Of course, Morgan will never be forgotten ~ not by anyone who knew her ~ and even some that never met her.

Date:

September 29, 2006

Today

Today I took the van in for inspection ~ at the last minute ~ 9/29! (much better than last year though... last year my inspection sticker was for 06/05, and I didn't get it renewed until 09/05 ~ I guess I had other things on my mind). I dropped off the van, and then ran home (I started running again a few months ago) ~ and when it was done I ran back up there. I had my FightSMA t-shirt on, and my tags say FGHT SMA, so naturally the inspector said, "Okay! I gotta know. What is SMA?" I told him about SMA, and about Morgan. He was very quiet... and then I told him about how happy Morgan was, and how funny she was, and then I said, "She was just a crazy little nut!" laughing ~ and he started laughing, too ~ laughing hard. That is the way Morgan would want people to be ~ happy and laughing. That is the way I want her remembered ~ as being funny, and happy. It was great to see someone who never knew her laugh because she was a crazy little nut! :)

Date:

September 28, 2006

Today

Today I organized our TWO junk drawers in the kitchen. I found these "junk drawer organizer kits." Amazingly enough when I looked at the labels in the kit, we had almost every item in our junk drawers ~ batteries, scissors, glue, lip balm, push pins, etc. So I organized everything and threw away the things that we didn't need (not that we really NEED anything in those drawers). I was about to throw away three broken toys ~ Morgan's toys. There was a polly pocket knock-off whose head was detached (compliments of Clayton), a hot pink Polly Pocket chair that the base was broken off of (I think that Clayton may have broken this one, too), and the Polly standing umbrella that was broken (this one I think Morgan actually broke herself). I remember when the umbrella broke, Morgan asked me to fix it. I said, "Morgan, I don't know if I can fix it." She said, "You can use glue!" I laughed ~ she laughed and I glued it back together ~ then it broke again. It was still in the drawer waiting to be glued back together. So I thought to myself, I don't need to keep broken toys ~ we have so many toys in this house ~ I just need to throw them away ~ and I did throw away Zeke's and Clayton's ~ but when it was time for me to throw away Morgan's... I thought, Clayton and Zeke will probably have more broken toys ~ Forget it! I am keeping these broken toys! And I did ~ I made a little spot in the organizer just for her broken toys...

Date:

September 26, 2006

Today

When we moved into our home three years ago, I was pretty overwhelmed ~ Zekie was in 5th grade, Clayton wasn't even two, and Morgan was only 10 months old, and had just been diagnosed with SMA. I made sure that Zeke, Clayton and Morgan were settled in their rooms with their toys and clothes, but I never really did anything to our room. We pretty much just threw the boxes in, and pulled clothes out as we needed them. I made a pretty pathetic effort last fall to "move in," by hanging some pictures on the wall (that had been sitting on the floor for two years!). So this week, I decided that I am going to get rid of the things we don't need or use (apparently that is quite a bit). Tonight I was cleaning the top shelf in my closet and I found some things from when Morgan was born ~ the letter that stated we had applied for her birth certificate, her first pair of little pink socks, the tiny hat they put on her head when she was born. I was so happy ~ I remember it ~ I was really happy and I was happy everyday that Morgan was here ~ even the day she was diagnosed with SMA. I am still happy ~ I have a wonderful family, the best friends and buddies (Morgan's Buddies) ~ I just miss my Morgan so much.

Date:

September 25, 2006

Today

Today I found the top half of one of Morgan’s bikini’s ~ or as she always called it her, “zucchini.” It was the one that Sissy and Grand Daddy brought her back from Hawaii. It’s neon green with bright blue, yellow, and pink designs ~ with a little hot pink “grass skirt.” Morgan wasn’t wild about the grass skirt, but she loved that “zucchini!” I remember how her eyes would just light up and dance when I would ask her if she wanted to go swimming ~ Of course, she did ~ she always did!

Date:

September 24, 2006

Today

Today I was going through some toys in our den, and I found the Aqua Mat that Daddy bought Morgan for her birthday last year. Clayton had been playing with it, and had apparently hidden it under our sofa. I hope he doesn’t think that he isn’t allowed to play with it ~ we will have to have a talk about that tonight. It is a huge mat! She had a smaller one that she liked, but we always had to wait for it to dry before she could create another masterpiece. I just miss how she much she loved to do things ~ I miss her.

Date:

September 22, 2006

Today

Hi Morgan~Morgan! I hope you have had a great day, sweetie! I was cleaning the dining room today, and I could almost see you sitting on the chair ~ poking you little hand under the arm ~ trying to make me crazy!! It made me smile... I just wish that I could see you do it again. I read an article last week about “If you could spend one more day with someone who’s gone.” The truth is that I don’t think I could do just one more day with ~ YES, I would love it ~ but knowing that is all I had would break me. I love you sweetie ~ I know that you know that ~ I’m just going to keep telling you everyday (just like I do with Zekie and Clayton). Big Hugs!!

Date:

September 22, 2006

Today

Earlier this week, something strange happened. I had taken Clayton to school, and was getting into my car. That’s when I noticed a little blond girl ~ about 2 ½ years old ~ running... and then she fell. Her mommy was right there, and instantly picked her up and kissed her, but... for just a split second ~ just in the beginning of her cry ~ she looked like Morgan. Those terrified eyes ~ the mouth pursed where you could only see the top and bottom four teeth. All the way home, I just sobbed ~ I had no idea that something like that would affect me. I think that I felt more "maternal" when Morgan was upset, when she needed me ~ I wanted to make her feel better, I want to make her feel better now ~ No ~ that’s not right ~ I want to KNOW how she is ~ I hope she is okay, I pray she is okay ~ but, I'd really like to know for sure. I am afraid that she is upset ~ that she needs me to pick her up and kiss away her boo-boos.

Date:

September 20, 2006

Today

Today something interesting happened. I took Clayton to his swimming lessons. We ~ the moms ~ sit outside the pool area and watch the children. Today one of the other moms asked me how many children I have. I must’ve looked like an idiot, because I didn’t answer her immediately. I was thinking... trying to figure out how to answer. I could just say three, and leave it at that. Or I could say two, and leave it at that. But... what I said was, “ I have three children, but we lost our daughter this past December.” I really hated saying that ~ first, because I still hate that Morgan is gone, and secondly, because of all the sadness that fell over her face. We talked for quite a while ~ I told her some of the wonderful things about Mo-mo, and some of the awful things about SMA. She was very understanding and compassionate. I don’t usually tell people about Morgan, but I think that something (or maybe a little angel) told me it would be okay. I’m glad that I told her ~ the truth, the whole truth, and I am thankful that she was so interested in Morgan.

Date:

September 19, 2006

Today

I'd like to thank everyone who comes here and read's about Morgan and learns about SMA ~ it means so much to me that Morgan can still touch peoples lives. Today I worked out in the yard for a little while, and a big lady bug just crawled right out of the weeds I was pulling. I didn't really think much of it, and moved her to another part of the flower bed. I pulled some more weeds, and something was flying around my head ~ I thought it was a bee or a wasp ~ and it landed on the trashbag. It was the lady bug. Of course, I instantly thought, "It's a sign!" I know that I *want* to see things for more than they are ~ and maybe I do. All I know is that it helps me find a little peace if I feel like Morgan is still close.

Date:

September 17, 2006

Today

Yesterday, Clayton pulled all of his Hot Wheels cars out of the basket of cars we have for him. Last night ~ before he went to bed ~ I asked him to put away the cars. Apparently, he had only taken out the "Hot Wheels" car ~ not the "Matchbox Cars." So he asked me if he could keep them out so that he didn't have to seperate them again in the morning. I'm a push-over, so I said okay. He only has 84 Hot Wheels cars ~ I know because we counted them several times ~ and I must have stepped on them five times today. I started thinking about his cars and how much he has played with them over the past five years ~ he has ALWAYS loved his cars! I remembered how he would share with Morgan ~ if I gave her one of his cars, he had to come over and look at it ~ I think to make sure it wasn't one he wanted ~ but while he was looking at the car she had, he would always give her some other car to hold while he was looking over the one I had given her. Then he would give her the car back. I really hoped that this was encouraging him to share his toys. Of course, after quite a few of these encounters, Morgan realized what was going on, and she didn't want him to "approve" what car she could play with. She started asking for the ones that he liked ~ and yes ~ she liked them, too. Then one day, I took Morgan to her pulmonologist, and after the appointment they told Morgan she could pick anything she wanted out of the treasure chest. Morgan usually picked flowers, or butterflies ~ and I even saw a very pretty ladybug ~ that I know was tempting to her... But Morgan decided what she really, really wanted was a yellow pick-up truck! It was very neat ~ if you pulled it back a little, it would zoom forward ~ Morgan (very quickly) learned how to do it herself. She held that little truck in her hand for days ~ she even slept with it one night ~ and it drove Clayton CRAZY! Finally, he started offering her his other cars ~ his favorite cars, and she was happy to share her truck with him. I just can't help but laugh when I think about that day when she said, "No, Mommy. I don't want the ladybug. I want that yellow truck."

Date:

September 16, 2006

Today

Today something funny happened... Bill went out a few weeks ago and bought gas for the generator (before Ernesto came through). Well, the gas ended up spilling all over back of his truck. He has spent the past few weekends airing out the truck, and last weekend he used the steam cleaner to help get the smell out. The gasoline smell is not easy to get rid of. So today I asked him to go to Costco to get some of my favorite laundry detergent, the mega-size Tide, and some fabric softener. Apparently, the top of the fabric softener was not on very well, and... it spilled all over the back of Bill's truck. The gas smell is completely gone ~ and it smells like Morgan ~ well, Morgan's clothes anyway. Bill and I laughed about how Morgan "helped" him get rid of that gas smell. What a sweetie!

Date:

September 13, 2006

Today

This is an update from MJ about the 2007 SMA Support Calendar (Morgan's picture appears in October, and Erinne's picture is in May ~ their birthday months) I have great news! I'm very proud to announce that the 2007 SMA Support Calendar is now available to purchase at the B4SMA store for $20 each. You can order the calendars directly from CafePress for $20, plus shipping and handling. The web site for the calendar is -- https://www.cafepress.com/b4sma/1826918

Date:

September 12, 2006

Today

Today something kind of neat happened ~ it wasn’t like one of Morgan’s great signs that I love. It was something in me. Since December 4th I’ve noticed that whenever I talk (to someone that doesn’t know Morgan) about Morgan I have been referring to her as my daughter or our daughter. But today I noticed that I was calling her Morgan, again ~ like I did before December 4th when I told people about her. It was like I was really introducing them to her, not shutting them out. I hope it continues ~ I want people to know her, know about her, know about SMA.

Date:

September 11, 2006

Today

Today I was thinking about 5 years ago from today. Wow! So much has happened in five years. Clayton wasn’t even two weeks old, and Morgan wasn’t even on the way. It’s just so hard to believe all that has changed since then. My most memorable “patriotic” memory of Morgan is her flag. I always tried to buy little American flags for her and Clayton each year. Morgan loved to wave her flag around. Last year, I think that she was the one who started a “sword fight” between her and Clayton with their flags (she had be doing that for Occupational Therapy with April and chop sticks). Morgan would start the jousting with her famous, “Hiya!” She was always so much fun.

Date:

September 10, 2006

Today

Today I was going through the baskets of toys in our den. I left a lot of Morgan’s toys in there because Clayton likes to play with them, too. Morgan loved her Polly Pockets, and she had one “boy.” She called him “motorcycle guy.” We lost him ~ and his ATV last fall. Today I found them ~ BOTH of them I couldn’t believe it. Of course, the first thing I thought of was the way that Morgan always made her Daddy play “motorcycle guy.” I can almost hear her say (for her favorite Polly Pocket ~ the one with the blond pony tail, wearing a hot pink sweater, bikini, and snow boots), “Hi Guy!” Then they would go out on a “date.” Usually they just walked around Morgan’s table and talked. Morgan always liked to have her Polly give Motorcycle Guy hugs. She was always so sweet. Umm... I really miss that sweet little girl.

Date:

September 09, 2006

Today

Clayton and I were looking at pictures of him with Morgan from about two years ago. I have about four pictures of Clayton kissing Morgan’s head. The first one, he was just walking by her and just kissed her on the head. I tried to get a picture, but I didn’t think that I was quick enough, so I asked him to do it again. He did, and I snapped two more pictures. He walked away and walked back over to Mo-mo and said, “Mommy, I’m going to kiss her again. Don’t you want a picture?” By this time Morgan was really over it! In the first picture she looked a little surprised, but happy. In the next two, she looked a little bored. By the time I took the last picture, she was looking at Clayton like he had lost his mind. So, when Clayton and I were looking at the pictures, we were saying what we thought she was probably thinking from her expression. I said “She’s probably thinking, “Um, Clayton don’t you have something else to do?” then he said, “She’s going, “Dude, you need to find someone else’s head to kiss.” He said it in his deep voice, and it was so funny to think of Morgan talking that way.

Date:

September 08, 2006

Today

When we were at The Great Wolf Lodge in July, Zekie won a stuffed animal for Clayton in the game room. It’s a racoon ~ RJ ~ from the movie, “Over The Hedge.” Well, Clayton dragged it all over ~ by it’s head ~ for about 24 hours before the seam in the neck ripped. He asked me to sew it back up when we came home. Well, it’s head wouldn’t fit under the sewing machine, so I used the glue gun and glued it back together. Clayton was not happy that I didn’t sew it like he wanted me to, so he just left RJ downstairs in the kitchen. RJ, eventually moved to the laundry room and he now sits on the window sill. I was cleaning up in the laundry room, and I tried to adjust RJ’s head which had fallen backward (so all you could see was his neck). So, I straightened his head, and it floppy backwards. I tried over and over again to balance his head just perfectly so that it would fall over, and it just wasn’t working. Suddenly, I just started laughing. It was acting like Morgan! When she was tired, she would just not hold her head up ~ it didn’t happen very often, but when it did that is how she did it ~ with the cutest little smile on her face that just said, “Mommy, I’m not going to hold my head up right now.”

Date:

September 07, 2006

Today

Hmmm... today I was thinking about raising awareness ~ my goal at one time was to tell three people a day about SMA. I could get a telephone call from a telemarketer, and end up talking for 5 minutes (or more) about SMA. Zekie always teased me that if we were in the grocery store, someone could ask me the price of milk, and I could turn the conversation around to being about SMA. He’d make up these little conversations like, Stranger: Do you know how much this ½ gallon of milk is? Mom: No, but did you know that children with SMA shouldn’t drink milk? Oh you don’t know what SMA is... Within the past few months, something has changed. Maybe it is too painful for me to talk about ~ maybe I don’t want any one to feel sorry for me ~ maybe I just can’t tell the story anymore with hope and promise of something wonderful for my Morgan. I wish I could, because sometimes I feel guilty. Guilty that I’m not telling people about Morgan. I think that she understands though ~ she probably understands everything much better than I do, she always has.

Date:

September 06, 2006

Today

Tonight I made a presentation about SMA at the Lions Club Board of Directors meeting. They are great ~ the Lions ~ they make it a lot of fun. Bill and I really enjoyed the meeting. We played the FightSMA DVD ~ which was hard for us to watch ~ we just miss her so much. Afterwards, the Bayside Lions Club presented us with an extremely generous donation to Morgan's Buddies. It was a nice evening, and I am very grateful that we had this opportunity to help raise awareness.

Date:

September 05, 2006

Today

Well, Clayton goes back to school tomorrow, and I started thinking about when Morgan was evaluated for preschool last fall. She really did great ~ they had three teachers asking her questions ~ one after another. One of the people evaluating her was going to be her teacher, Miss Ellen. She was so nice, and I know Morgan would have loved her. They showed Morgan a lot of pictures and asked her questions about them. One of the pictures had a bicycle, and a chair (that really looked an awful lot like the overstuffed chair we had in our den). The lead to the question was, "Little Suzy fell down, and hurt her arm. Which one did she fall off?" Well, I knew immediately what Morgan was going to say before she answered. The only people she ever saw riding two wheeler bicycles were Zeke and Daddy, and they never fell off. Morgan may not have even known it was possible to fall off a bicycle. But she had seen Clayton fall off (jump off, fly off) of our chair MANY times. She picked the chair, of course ~ but I always though of that as a right answer ~ because for her, it was right. That was what she knew.

Date:

September 04, 2006

Today

I'm going to be doing a FightSMA presentation Wednesday night, so I have been thinking back to the days before Morgan was diagnosed. I was thinking about the day that Morgan, Clayton and I first walked through our house. Zekie was still in school, and Bill was at work, but our realtor had arranged for me to look at the house. We had been looking for a house for over a year, and several had fallen through. I knew as soon as we walked through the den that this was it! I saw that the brick fireplace had a protective bumper around it to protect little people (that fall a lot). The owner told me that they were planning on leaving the padding. I remembered thinking that Morgan would be starting to walk soon, and that it would be so nice to have that there. The same day that we found out that our offered had been accepted, was the same day that first heard the words Spinal Muscular Atrophy. A lot of our visions for the future changed, but I always thought that we would have a future. I never really thought that we would lose her...

Date:

September 03, 2006

Today

This weekend is the MDA telethon. Erinne (Suzanne’s daughter) along with Liz (Suzanne’s right hand) and Olivia (one of Erinne’s best friends) will be on the telethon in Detroit tomorrow morning. I think that this is their third year! I know they will be great! Last year, Stephanie Harris with Channel 10 ~ here in Virginia Beach ~ did a kick-off story to the telethon weekend about Morgan. It was that weekend that we were driving over to Sissy and GrandDaddy’s for a cook out, that Clayton said (I think just out of exasperation that Morgan had been on the news so much), “Morgan, you are just on the news all the time because your feet don’t work.” And that is when Morgan said as defiant as possible, “My feet do too work!” and she wiggled her little feet in her AFO’s, to show him that they did ~ in fact ~ work perfectly. That is definitely one of my favorite memories.

Date:

September 02, 2006

Today

Well, I seem to do better when I stay busy. Yesterday I did not even leave the house (with the storm). This morning I was thinking about what Morgan and I would do when we had a storm ~ we would have a "make-up day." We would take a long hot (but not too hot) bubble bath, and then put make-up on. Morgan always knew exactly what make-up she wanted ~ eyeshadow, and lipstick! She was so cute when she would close her eyelids for me to put the eyeshadow on her... She would say, "My eyes, Mommy! Get my eyes!" and close her eyelids ever so gently. I really miss her...

Date:

September 01, 2006

Today

The Spider Hole! Three years ago when Hurricane Isabel came through Virginia Beach, we discovered we had a leak in the ceiling of our bay window next to our kitchen table. Bill put a small hole in the ceiling so that the water would drip out. After Isabel, that was one of those things that we just forgot about. Every once in a while though, Morgan would look up at the ceiling at dinner and say, “Ahhh! It’s a spider hole! I’m afraid!” The first time she said that, I think she really thought it was a spider hole. After we explained to her what it was she was ALWAYS teasing. But she had the perfect little terrified voice to go along with her little joke, and she thought it was so funny. This morning, the first thing we noticed was that “the spider hole” was leaking ~ it was the first time it has leaked since Isabel. I am so grateful to have so many great memories of my silly little girl.

Date:

August 31, 2006

Today

Today I took Clayton to the library for the first time. He loved it, and was very good about using his “library voice.” Clayton was in awe of all the books, and books, and books. I know that Morgan would have loved it, because she just loved reading. As Clayton and I walked around, I thought, “I wish I had brought Morgan to the library.” But I was so afraid of colds and germs... I thought the only thing that could hurt Morgan was a cold... Boy ~ was I wrong. But, I do know that we always did what we thought was best for her. So maybe she didn’t go to the library. She always had more than enough books to read. And I was able to spend more time focused just on her and Clayton. I’m grateful for every minute I had.

Date:

August 30, 2006

Today

Tonight we went to orientation at Clayton's school. When we walked into the Activy Room it was very crowded ~ standing room only. I remembered last year when we went, I was so nervous about Clayton touching anything and catching a cold. I was just so nervous that Morgan would get sick. Last year the Director even said, "One of the children in the school has a sibling that can not catch a cold, so if your child is sick, please keep them home." It was nice enough that they did not have me hauled off to the looney bin, but the fact that they were so conscientious really impressed me. Tonight, I was still nervous about colds and germs ~ old habits die hard. I kind of like it though ~ remembering my sweet baby girl when I'm not expecting it.

Date:

August 29, 2006

Today

Well, this morning while Clayton and I were making his birthday cake, a little lady bug crawl up the screen of the kitchen window over the sink. She hung out there the whole time we were making the cake. So, Clayton and I think we had a little helper with us. He changed his mind at the last minute, and decided he wanted a light blue dinosaur cake. It was a nice day, and Clayton is very thankful for everything and everyone that came to visit him.

Date:

August 28, 2006

Today

Tomorrow is Clayton's birthday ~ he will be 5! Naturally, he is very excited about it ~ he has been counting down days since the 19th. It's a happy occasion, but it's another milestone Morgan won't be here for. Even his first birthday, she was here for (kind of ~ she was in my tummy). Clayton is obsessed with these dinosaur cakes. When he turned three, he knew exactly what kind of cake he wanted ~ a dinosaur cake. Not a cake with dinosaurs on it ~ a cake shaped like a dinosaur. I found a recipe and template online, and we proceeded to make the first dinosaur cake. That one had to be blue. When he turned four, all he wanted was a dinosaur cake ~ just like the year before, but it had to be green. This year he wants a dinosaur cake ~ RED! We always made the cake together ~ Daddy, Zekie, Clayton, Mo-mo, and me. Zekie, Clayton, and Morgan always put "spots" (M&M's) teeth and spikes (candy corn) on the dinosaur cake. This year will be different ~

Date:

August 27, 2006

Today

I know that I have probably mentioned this before, but I was thinking about it today, and how funny it was. Last March (March, 2005) Morgan came down with an awful cold while we were in Nags Head. She had picked it up from Clayton who was pretty sick, also. I knew that she needed to wear her bi-pap 24/7 if she was sick. So we hooked her up to the bi-pap, and laid her down in our bed while we (Bill, Zekie, and I) just watched her monitors. Up until that time, Morgan and Clayton had no idea that anything came on television besides Sesame Street (and their Baby Bach videos). Since they needed ~ especially Morgan ~ to rest, we turned on Nick Jr. Dora the Explorer was on, and it lead right into Blue's Clues. My children instantly turned into TV junkies. Within each 30 minute show, they knew all the characters, the songs, and when they were supposed to say, "Swiper! No swipping! Swiper! No swipping!" Then they looked at me like ~ I can't believe you never told us about this wonderful world of cartoons! I'm glad that Morgan had the chance to watch Dora ~ she just loved Dora, and it always made her smile, laugh and sing.

Date:

August 26, 2006

Today

I was looking through some of pictures of Morgan on my computer. I have some video clips, but I have been very careful not to play them since December. It is hard to see her so... so here. Anyway, I accidentally played one and while I closed it quickly the sound continued to play... I could hear her sweet little giggles laughing at me. I didn’t need to see the video ~ I saw it in my mind. I knew exactly what she was doing, where she was sitting, and why she was laughing. Morgan was laying on her back on our island in the kitchen, and she was kicking... me! It wasn’t hard kicking ~ just a light tap, but she did it all by herself. We were always trying to find new ways for her to exercise. I just thought that anything she could do voluntarily was good for her. She thought it was so fun to kick at me, and I would laugh and cry out “Morgan! Don’t kick your mommy!” Morgan and Clayton thought it was so funny ~ but she just loved being able to do it ~ and I loved that she was so proud of herself.

Date:

August 25, 2006

Today

Tonight Zeke was playing basketball, and he landed on his foot wrong. It was a little swollen, and he was pretty wiped out from his first few days of school. So after he held an ice pack on it for a while, I suggested that he might like to take a warm bath ~ just to relax. I told him that I would draw the tub. I went into the upstairs bathroom ~ Morgan’s bathroom ~ and I started the water. When I went to close the drain, I realized that I had not drawn a tub in that bathroom since Morgan was here. And when she was here, I did it every night. She loved her baths. She loved that bathroom. The wallpaper in that bathroom is very busy ~ it’s like a Monet print, gone wild! Morgan always called it the “crazy bathroom.” She learned her colors from that wallpaper ~ sitting on the potty every night before she took her bath. I had wanted to change the wallpaper. I even had a person come out last November to give me a quote, but I think that I would like to keep it the way it is ~ just a little while longer. I just have so many fun memories of Morgan in that “crazy bathroom.”

Date:

August 24, 2006

Today

Today I was thinking about the way that Bill would brush Morgan’s hair after her bath. Whenever I brushed her hair she would complain that I was hurting her head. Bill had the magic touch, though. He would brush her hair and talk to her like a hairstylist at a salon would talk to their customers. “So, are you dating anyone new?” Morgan would play it up with him, and say, “Yes! I have a new boyfriend!” and then Bill would say, “Well, what does your Daddy think about that?” I loved to just listen to them play.

Date:

August 23, 2006

Today

This is how I make it through everyday ~ it's because I have such a wonderful and funny family. Clayton was talking about Morgan, and why she went to Heaven. He was thinking about her, and what happened to her, and he said to me, “Mommy, did you know that Morgan went to Heaven because she was weak?” I thought about what he said, and he was right. Basically, it was because she had SMA, and SMA made her weak. I would have thought that this concept would have been too difficult for a four year to grasp ~ but maybe I was wrong. Maybe he really did understand it all much better than I thought he did. So, I said, “Yes, Clayton. That is why Morgan went to Heaven.” Then he said, “She was just getting weaker and weaker.” I thought about that ~ well, I did not see that she was getting weaker, but maybe her heart was getting weaker. So rather than argue the point with him, I said, “It could be.” Then he said (much to my surprise), “Morgan was eating way too much junk food!” Of course! She did love her carbs ~ cheese doodles, french fries, mashed potatoes... He is so funny ~ I tried to explain that it wasn’t because she ate too much junk food, but he’s still pretty sure that was it.

Date:

August 22, 2006

Today

Today something (kind of) funny happened. Last week, I took my engagement ring into the jewelers to have the setting repaired, because the diamond was a little loose. Today they called and said that it was ready for me to pick up. Morgan loved my diamond ring, or as we called it “her diamond ring.” When she worked with Judy (her physical therapist), Morgan would always ask Judy for her rings, earrings, or bracelets, and she worked better once Judy handed over her jewelry. About two years ago, I found a big cubic zirconia ring that I bought for Morgan to play with. It was actually very pretty, but Morgan would have nothing to do with it. She was only satisfied with “her diamond.” Anyway ~ back to the jewelry store ~ when they pulled the ring out, it was the wrong one. I was pretty upset and confused. The manager told me that they would find my ring, and that the assistant manager would call me tomorrow. She said the assistant managers name is “Morgan.” I almost laughed ~ of course, her name is Morgan... I feel much better now. I hope that my little Morgan just wanted to play with me and her diamond.

Date:

August 21, 2006

Today

I was talking to Morgan's Aunt Cathy about how Morgan would wake up in the middle of the night wanting to be rolled onto her other side. I slept with Morgan most of the time, BUT she would always call out for "Daddy!" Even if I was already awake and rolling her over, she was calling Daddy! And Bill would jump out of our bed, and run into Morgan's room the second he heard "Daddy!" She really had him wrapped around her little finger, and I think she knew it.

Date:

August 20, 2006

Today

This morning I was in church listening to Will give the sermon. He is just a wonderful minister. After the sermon, I was thinking about all the times he came to the hospital to sing to Morgan, pray for Morgan, or just visit with Morgan. I remember him coming to our house several times during the nine days that Morgan's SMA test was out. He comforted Bill and I ~ he always did, and he was always there. He will be leaving our church next month. I am sad to see him go, but I hope that it will be positive for him.

Date:

August 19, 2006

Today

Today Terri & Mike Sawyer (Samuel's parents) came over to bring the SMA Support coins they had made. They are very nice. Mike and Terri did a terrific job designing the coins. To see them, please visit: http://www.our-sma-angels.com/samuel/sma_support_coin.htm It is really an awesome coin ~ they did such a great job!

Date:

August 18, 2006

Today

In the SMA community, many of us believe that butterflies are symbolic of the SMA Angels ~ in Heaven, and here on Earth. Today Zeke had invited a few friends over to go swimming at Uncle Billy’s and Aunt Debbie’s. When we left our house, there was a butterfly fluttering around the front yard. When we arrived at Billy and Debbie’s there was a butterfly (that looked identical to the one in our driveway ~ a mile away) fluttering around their driveway. One of Zeke’s friends said, "I think that is the same butterfly that was at your house." This butterfly just hung around the backyard while the boys were in the pool. When they came up to the porch, the butterfly came to the flower garden right in front of the porch and just jumped (?) from flower to flower for about 10 minutes. I was so surprised (and intrigued) that I *just about* ran out of the porch to watch this butterfly. Naturally, I am a klutz (I think it's genetic) and I ended up face first on the bricks. But the butterfly stayed... just flying around. Today has been difficult ~ our hearts ache for Kelly and Keven. I hope that Morgan sent us that butterfly to let us know that Grace is okay.

Date:

August 18, 2006

Today

In the SMA community, many of us believe that butterflies are symbolic of the SMA Angels ~ in Heaven, and here on Earth. Today Zeke had invited a few friends over to go swimming at Uncle Billy’s and Aunt Debbie’s. When we left our house, there was a butterfly fluttering around the front yard. When we arrived at Billy and Debbie’s there was a butterfly (that looked identical to the one in our driveway ~ a mile away) fluttering around their driveway. One of Zeke’s friends said, "I think that is the same butterfly that was at your house." This butterfly just hung around the backyard while the boys were in the pool. When they came up to the porch, the butterfly came to the flower garden right in front of the porch and just jumped (?) from flower to flower for about 10 minutes. I was so surprised (and intrigued) that I *just about* ran out of the porch to watch this butterfly. Naturally, I am a klutz (I think it's genetic) and I ended up face first on the bricks. But the butterfly stayed... just flying around. Today has been difficult ~ our hearts ache for Kelly and Keven. I hope that Morgan sent us that butterfly to let us know that Grace is okay.

Date:

August 18, 2006

Today

Grace flew to Heaven last night at 10:30 (Texas time). Words cannot express how we feel right now. Our hearts are just broken. Please keep her parents, Kelly and Keven, in your thoughts and prayers.

Date:

August 17, 2006

Today

Please keep Grace Coggin and her family in your prayers and thoughts. Grace is two and a half years old and has SMA. She is just so sweet and adorable. It appears she aspirated while in her car seat today and went without O2 for a significant period of time. Right now, the situation is very grim. Grace's web site is: http://www.our-sma-angels.com/grace/

Date:

August 17, 2006

Today

Today I cut up our "Sugar Baby" watermelon ~ it is definitely the best watermelon we have had this year. When I finished I said, "Wow! I cut up the whole thing!" to myself... out loud (is that a sign of insanity???). I laughed when I said it, because that was one of Morgan's sayings ~ "the whole thing!" "I drank the whole thing" ~ when she was taking about her "latte" (Vivonex mix) or "I ate the whole thing!" when she was talking about her food ~ usually her grilled cheese sandwiches. With her "latte" she usually did drink the whole thing, but she never really ate the whole thing. Zeke and I would look at her when she would say that, then we would look at her plate (with half a sandwich left on it), and then we would look at each other ~ like "are we missing something here?" She was so funny, and brought so much happiness and laughter to our lives.

Date:

August 17, 2006

Today

Announcement: SMA Support is holding an online auction from now until August 30, 2006. For more information, visit: http://www.our-sma-angels.com/smaauction/

Date:

August 16, 2006

Today

Warning! This is a heart breaking entry. We are all doing pretty well. I think this shows how much Clayton loves Morgan ~ and how much he still misses her. She was, and is his best friend. Last week when we were on the Eastern Shore, we stayed in our good friends (and awesome Morgan's Buddies), Bill and Becky's cottage. Bill has started a new business ~ he paints stars on the ceiling. You can't see them at all during the day, but at night, you feel like you are really sleeping under the stars ~ it's amazing. Zeke wants to get some in his room. The first night we were there, Clayton went into the room where Zekie was sleeping, and he looked at the stars. There is even a shooting star painted on the ceiling. Clayton looked at the shooting star and said, "Starlight, Star Bright, the first star I see tonight, I wish I may, I wish I might, have this wish I wish tonight. I wish for Morgan to come back from Heaven." Then he ran out of the room and yelled, "Morgan! Morgan! Where are you?" He went back into the room, and said, "I guess it didn't work." He really loves Morgan, just like Zeke, and the rest of us do.

Date:

August 15, 2006

Today

Last night after I wrote my journal entry, Zeke asked if I had written it yet ~ he had an idea that I should write about. We had mashed potatoes last night ~ I know that I have already written about how much Morgan loved her mashed potato balls ~ but he wanted me to write about one night specifically. I had a potato ball on her spoon, and I was trying to get her to eat it. Morgan did not always want to eat ~ perfectly normal for a two year old, so I sometimes had to "play" around with getting her to eat. This one night I was bouncing the ball on the spoon, and I dropped it, and it hit the wall. Zeke, Clayton, and Morgan laughed so hard, and Zeke still thinks it is one of the funniest things he has ever seen. Last night, when he was talking about her and her potato balls, he said, "Morgan would not eat potatoes unless they were potato balls. I mean talk about picky eaters..." I'm glad the boys have so many good memories of Morgan.

Date:

August 14, 2006

Today

Today Zekie and I were talking about... Barney! Barney the purple dinosaur. Zekie loved Barney when he was a toddler, and he was asking me how I could have let him watch such a ridiculous show. I told him that Barney was fun, and happy. He said, "Well, I think that Barney is just a little too happy." What a cynic I have raised! Just a few years ago he was dancing around singing with Barney ~ now he thinks he's TOO happy. In a last ditch effort to try to swing Zekie's opinion of Barney, I said, "And he's PURPLE! That's Morgans favorite color!" He said, "Well, I thought her favorite color was GREEN!" And then we both laughed ~ remembering Morgan would say, "Green! That's my favorite color!" "Purple! That's my favorite color!" "Red! That's my favorite color!" Every color was her favorite color ~ It was nice to remember good things about her, not just how much we miss her.

Date:

August 12, 2006

Today

Well, we are back home from our vacation on the Eastern Shore. It was nice to get away together. We read, played in the water, looked for shells, laid on the beach, and had a lot of quality "family" time. Where we stayed, the sun sets over the water, and we watched the sun set every night ~ it was just beautiful. We also met two of the artists that always contribute to our auction ~ Mr. Burton, and Capt. Jack. Mr. Burton gave us a tour of his wood carving shop yesterday, and showed us how he turns a piece of wood into a beautiful bird or butterfly. He is such a kind and thoughtful man, as is Capt. Jack. He made us a set of his signature hounds in honor of Morgan. I thanked Mr. Burton for all of his support, and he just said that little girl just stole his heart. That is just how Morgan is. Tonight was the SMA Awareness Candle Lighting ~ we lit our candle for Morgan. Laura is posting the candle lighting pictures: http://www.smasupport.com/candlelighting06.htm

Date:

August 04, 2006

Today

Well, it seems that we just can't escape a power outage when Bill is out of town ~ we lost power for a few hours tonight. I took the boys out to dinner ~ they were both so good, even Clayton! I saw a little girl at the table next to us ~ and tried to imagine what we would have done if Morgan had been here. I think that we would have all gone out to dinner ~ it would have been nice. And I know that she would have eaten more than Clayton did. He had grilled cheese ~ one of her favorites. And Daddy's was the best! I will be off line for the next week, but I will update when I can.

Date:

August 03, 2006

Today

Today while the boys and I were out playing in the pool, I remembered last summer about this time. Morgan loved for me to spin her around in the pool. But, her "MORGAN" bracelet would always fall off. I think that it needed to be tightened. She would say, "My bracelet! My bracelet fell off!" Then I would look for it. I would look and look, and she would say, "It's right there" or "It's right here." She always knew exactly where it was, and I was amazed. She is and was such an amazing little girl.

Date:

August 02, 2006

Today

Well, I read Morgan's guestbook and saw that Carol had written. Thank you for writing, Carol ~ I've missed you. Carol is just one of the nicest people. She wrote about the "Morgan's Sunset" photograph that Mr. Grigsby donated for the SMArgaritaville auction. It really was beautiful, and our auctioneer, Col. Buddy had the winning bid on it. He stood by the auction sheet right up until the bid sheet was collected ~ he REALLY wanted it. After the auction, he asked Mr. Grigsby to write, "Morgan's Sunset" and sign the back of his work. It was nice to see how much it meant to Col. Buddy.

Date:

August 01, 2006

Today

Tonight we went over to Sissy and GrandDaddy's house, and we were talking about ultrasounds ~ Tory is having her baby in the next few weeks. I remembered Morgans first ultrasound ~ we had a perfect profile of her face ~ and her adorable little turned up nose. When she was born, one of the first things that I noticed was how her nose turned up ~ my mom said it was one of the first things that she noticed, too. I just love that little nose.

Date:

July 31, 2006

Today

Tonight Aunt Debbie came by, and I started thinking about how much Morgan loved it when she would come by after work. Morgan knew when Aunt Debbie was here ~ just by her footsteps. And she knew that Aunt Debbie was there to see her ~ just her! She loved to wear Aunt Debbie's sunglasses or as Morgan would say, "glasses." And I think that Aunt Debbie would stop at 7-Eleven just so that she would have gum when Morgan would ask her to blow bubbles.

Date:

July 30, 2006

Today

The past few weeks have been extremely difficult for me. This morning I was working in the yard and I needed an extension cord. The last time I pulled out that extension cord was when our power went out in the middle of the night, Bill was out of town, and Morgan was sick. I ran to the garage to turn the generator (thanks to Sissy and GrandDaddy) on. I needed to turn on Morgan's bi-pap. It just hit me very hard, today. Morgan is on my mind every minute of every day ~ awake, asleep, reading, watching TV. She is always right there. I must have pushed it out of my mind for the first several months ~ it must have been some sort of survival defense. But, I can't do it anymore. I see her little dimples, I hear her sweet voice ~ and I miss it so much. When Morgan was born, I was full of hope ~ hope for her ~ I wanted to see her grow up, I wanted to see what she would become. Even after being diagnosed with SMA, I still had hope. She was so sweet, and so smart, I just knew that SMA would not stop her. But, now she's gone and I just can't accept it. I feel like I am walking around in a daze, I just wish that I could wake up from this awful nightmare.

Date:

July 28, 2006

Today

Today the boys and I were still in Nags Head, and we went to the beach. Zeke and Clayton just love the water, the waves, the dolphin swimming 20 yards away from them, the pelicans diving for fish. Today the water was much colder, than it was yesterday. Clayton likes for me to hold him under his arms so the waves can crash into him. Morgan couldn't stand it. She did not like the salty water. She did not like the sand. She did not the heat. She had her own ideas. I just love the fact that she always knew exactly what she liked.

Date:

July 28, 2006

Today

July 27, 2006 ~ Today the boys and I went down to Nags Head. This evening we were walking on the beach, and Clayton said, "I saw a peach. I saw a peach on the beach!" He laughed at his rhyme, so did Zeke and I. Then he said, "Peaches on the beaches." It reminded me of how Bill sometimes called Morgan, "Peaches." It was usually after her bath ~ she always smelled fruity ~ honeysuckle, cotton blossom, gardenia. I can hear him say, "Hi Peaches!" when he came home from work, or when he came in after her bath. We love our little peachy girl.

Date:

July 26, 2006

Today

Today I was cleaning our room, and I found a hanger under my dresser. It was a childs outfit hanger, and size 3T. It was one of Morgans. I think that it was the hanger that her purple Dori (from Finding Nemo) jammies came on. We bought the purple Dori ones for Morgan, and the blue Nemo ones for Clayton. We would have bought one for Zeke, but they only went up to size 8, and Zeke does not like to wear "jammies" anymore ~ just t-shirts and shorts. Bill usually would get Clayton ready for bed, and I would get Morgan ready. If Clayton came into her room, and she was wearing her Dori's, he would HAVE to change out of the jammies he was wearing, and put on his Nemo's. They were so cute together.

Date:

July 25, 2006

Today

Tonight I was giving Clayton a bath and washing his hair. I usually use his "baby shampoo" when I wash it, but tonight I used Bill's shampoo ~ Dove Shampoo. When I rinsed his hair, I could smell the fragrance that reminded me of washing Morgan's hair with that shampoo. She always wanted her hair to smell good (so did I). She was more concerned with how her hair smelled than whether or not soap got in her eyes ~ which is Clayton's main concern. You'd think that washing her hair would have been more difficult than his ~ BUT it wasn't. She was so easy going ~ Clayton just fights getting his hair washed ~ BOYS! I love her so much ~ I love remembering her ~ I just wish I had been able to wash her hair toinght, also.

Date:

July 25, 2006

Today

July 24, 2006 ~ Tonight I was thinking about how much Morgan loved to lay down (on a blanket) on the lawn with Daddy. They loved to look at the stars, and clouds. Morgan had great vision, so she was always the first one to spot a jet Flying high above. Morgan loved to just hang out with her Daddy.

Date:

July 25, 2006

Today

July 23, 2006 ~ Today I was thinking about how much Zeke, Clayton, and Morgan loved to play pretend. They had so much fun. They would pretend to be different characters from Sponge Bob, or they would play "house." It was so wonderful to see them all play together.

Date:

July 22, 2006

Today

Tonight we went for a bike ride. It reminded me of so many nights that we went out last summer with Morgan driving her wheelchair. Clayton is just learning to ride his two wheeler (with training wheels). He is so much like Morgan. He goes around the corner (out of our cul-de-sac) perfectly. When he sees a car (no matter how far away) he stops and pulls over to the side of the road until the car is gone. She did the same thing. Tonight we also noticed that he kept looking in the sky ~ just like Mo-mo. She was always looking for airplanes ~ always. I think that Clayton was just looking at the sky ~ but everytime he did, he would fall off the bike. Thank goodness Morgan never wrecked in her chair ~ or as she always called it, her "bicycle."

Date:

July 21, 2006

Today

This afternoon I was walking down the stairs, and I suddenly felt so empty ~ I wasn't carrying Morgan. I carried her up and down the stairs so many times, and suddenly today I realized I wasn't carrying her. I miss her so very much ~ her weight, the feel of her back (and spine), her legs ~ everything.

Date:

July 20, 2006

Today

Today, a friend of mine (Kathie) called me. She has a little girl with SMA, also. Her daughter is also three years old. We talked about water therapy, and how much Morgan loved being in the water. I had a neck floatie for Morgan, and I made a "weight belt" and "ankle weights" for her. Since Morgan had SMA, she did not have enough muscle (which weighs more than fat) to keep her body and legs down in the water. They (her legs) would float ~ not always, but enough to where is was frustrating for Morgan. I used rip-stop nylon, and decorative marbles to make the belt. We tried to use some standard ankle weights, but they were just too heavy for Morgan. So, one afternoon I had her in the pool and had opened up the seams on some wrist sweatbands, and just kept adding the marbles until it was just the right amount of weight ~ enough to keep her legs down, but not too much that she couldn't move her legs. I told Kathie, after that, the second Morgan hit the water, she would say, "Let me go!" and she would. She loved to chase Clayton around the pool ~ he would, of course, just scream and run away. She loved to "walk" around the pool, and go wherever she wanted. Her smile was always the biggest when she was in the water ~ she could walk, she could play with her "action figures," she was just like Clayton and Zeke, and she loved it. It was great to talk to Kathie about Morgan today. I have been extremely down for about a week, and talking about her cheered me up. Why ~ I don't know, but I'm sure that Morgan had something to do with it.

Date:

July 19, 2006

Today

I had a dream about Morgan ~ I think that I dream about her a lot ~ I just don't remember them all. In this dream, she could not move as much as she did when she was here. Something had happened to her ~ December 3rd. We were at the hospital, and were just happy that she was still with us. I know she is still with us ~ it is just so hard not to be able to talk to her, to see her. I love her and miss her so much.

Date:

July 18, 2006

Today

I saw that Aunt Debbie wrote about seeing the video of Morgan in the Caymans. It was wonderful to see her ~ not hard ~ not like seeing video of her from last fall. It felt just like seeing video of her from when she was a baby if she was still here. With my children, I always miss their younger years when I go back and look at old videos. I think that I miss three year old Morgan more, mostly because I won't have a four year old Morgan here. She was such a little baby doll back then ~ so tiny, but very alert, and moving like crazy ~ kicking her legs, raising her arms, lifting her head. I'm glad we have it on tape.

Date:

July 17, 2006

Today

Tonight Clayton pulled out our Charlotte's Web book. Last summer I read that to Morgan ~ while we were laying out in the sun on our deck. She loved it when people read to her. Clayton never stayed around to listen ~ he was always off exploring our backyard. I think that Morgan would have stayed and listened ~ even if she could have walked away.

Date:

July 16, 2006

Today

Friday night when Aunt Beth, and Aunt Jamie arrived, we all ate dinner together. They were telling us about their trip down from Michigan, and how the air conditioner broke down, and then a bird almost flew into the windshield. That is when it started... Sheila started laughing, then Zoey, then Zeke, then Rachel and Clayton. They were all giggling and laughing. It was wonderful. It reminded me of the dinners that we had when Morgan was here. Zeke, Clayton, and Morgan always found things to laugh and giggle about at dinner. That just doesn't happen anymore ~ I'm not sure why ~ maybe it takes at least three children to have a giggle fest at the dinner ~ I don't know, but I do miss it.

Date:

July 16, 2006

Today

Friday night when Aunt Beth, and Aunt Jamie arrived, we all ate dinner together. They were telling us about their trip down from Michigan, and how the air conditioner broke down, and then a bird almost flew into the windshield. That is when it started... Sheila started laughing, then Zoey, then Zeke, then Rachel and Clayton. They were all giggling and laughing. It was wonderful. It reminded me of the dinners that we had when Morgan was here. Zeke, Clayton, and Morgan always found things to laugh and giggle about at dinner. That just doesn't happen anymore ~ I'm not sure why ~ maybe it takes at least three children to have a giggle fest at the dinner ~ I don't know, but I do miss it.

Date:

July 15, 2006

Today

On Thursday afternoon when the girls were here, we had some thunderstorms. So, I suggested that we do what Morgan and I always did on rainy days and "hurricane" days ~ makeovers! We had fun together ~ Rachel even painted my fingernails. Morgan and I would do pedicures on rainy days. She always picked the "butterfly" stickers to put on her toe nails. She was so amazing ~ she could paint her own finger nails before she turned three years old. Bill and I were ~ and are ~ so proud of her. She was determined to do everything that she could do ~ she has an incredible spirit ~ I love that little girl so much.

Date:

July 12, 2006

Today

Today I was thinking about a night about a year ago. All five of us were watching a movie (not sure, what movie), and in the end the girl got married. I said to Bill that we needed to start working on designing a wedding dress for Morgan. He said he was thinking the same thing. We always hoped that she would walk, but even if she didn't, we knew that she would get married. She just had such a great personality, that we knew a wonderful man would come along, and realize what a treasure she was. Today, I was thinking that we aren't going to need to worry about a wedding dress ~ now. It just made me very sad. I miss her so much.

Date:

July 10, 2006

Today

Hi! Our nieces (Zoey, Sheila, and Rachel) are in town so I am going to be spending a lot of time with them this week. I did want to let you all know I had an update on Erinne from Liz today. She is doing well ~ here is the update from Liz: Just wanted to let you know that Erinne came out of her spine infusion surgery and is doing well. She went straight to the PICU and Suzanne is in with her getting her all set up. I am going to get the in/ex soon so that we can start coughing her, and they are going to try extubation tomorrow. It seems to have gone as well as planned, and I am sure that we will be out of here in a week without a hitch...although we could still use your prayers. Thanks to all of you who have been so supportive for Suzanne and I along the way. I know I certainly appreciate it, especially since there has been so much drama. Anyway, Suzanne and I will be trading off between Erinne's room and the Ronald McDonald House, so if Suzanne doesn't get a chance to post later, I will. Lots of love, Liz

Date:

July 02, 2006

Today

Today I took a dress upstairs ~ to Morgan’s room. It was an authentic Mexican dance dress. It is beautiful ~ a white lace skirt, and blouse, with a black and red cover, and red sash. It was a gift to Morgan from some of my mothers good friends in Mexico. They also sent a beautiful, healing CD. We planned to listen to that when Morgan did her cranial sacral therapy with Judy. Once I reached the top step, I knew it was going to be hard ~ going into her room to put something away that I would never have to put away again. So, I decided to pretend that Morgan was just downstairs in the den, and I was just putting clothes away. It was the happiest 30 seconds of my day. Just being in “denial” ~ helped.

Date:

July 01, 2006

Today

Yesterday was my aunt’s funeral, and it was a very difficult day for me emotionally. I was thinking about Morgan ~ Morgan’s service. It is a hard place to revisit. Last night I tried to write a journal entry, but I just couldn’t. I couldn’t think of anything positive. I just thought about how wrong it is that she is not here. I wondered what I have done so wrong to have her taken from me. I love that little girl with all my heart. I know life’s not fair, and I really never expected everything to be perfect. But it was ~ for a little while, it was.

Date:

June 29, 2006

Today

As most of you already know, Erinne's mom Suzanne taught me everything I know about SMA. When Morgan was sick, Suzanne wanted me to call her in the middle of the night, at work ~ whenever. When Morgan was in the hospital, I sometimes talked to her every hour. She was my cheerleader, and advisor ~ she always gave me the encouragement to keep going. Now, I would like to help her, and Erinne. Erinne is in need of a little help with a quick turnaround time. Their van broke down on the way home from MDA camp last Saturday and it was a major one. After it was towed to a repair shop, Suzanne learned that the transmission needed to be replaced along with the drive shaft, yolk and U joint. The tab is about $3,200. Unfortunately, that is not something Suzanne has. This comes on the heels of Suzanne going on an unpaid leave of absence starting July 6th -- the date of Erinne's scoliosis surgery -- for as long as she needs to be off to take care of Erinne. So a few of her friends are putting together this mini-fundraiser to help them out. If you'd like to participate, you can send in a donation to SMA Support, which is a 501c3 organization that has helped Erinne out several times in the past. (www.SMASupport.com) You'll receive a charitable tax deduction for your donation and be helping Erinne out at the same time. If you'l just mark your donation "For Erinne Williams" it will go right to her. If you know of others who know Erinne or her mom, and might be willing to help, could you please copy and send this on to them, so that as many people as possible can help Erinne get back on the road again? Thanks for your help. Also, if you want to keep tabs on how Erinne's surgery and recovery are going, please be sure to visit her website or you can e-mail me directly for an update : www.our-sma-angels.com/ErinneRose Please mail donations to: Erinne Williams c/o SMA SUPPORT P.O. Box 6301 Kokomo, IN 46904-6301 Phone: 317-536-6063 (Call for credit card info) Fax: 801-460-2813 Thank you for helping the Williams!

Date:

June 29, 2006

Today

Tonight my mom and I were talking about how Morgan would dance in her seat. Her favorite chair was a little yoga seat that Judy (Morgan’s Physical Therapist) brought over. It sat right on the floor, but gave her just the right amount of support. She would rock back and forth, and side to side and say, “Look at me, Sissy! I’m dancing!” Sometimes I find myself rocking like she did ~ my mom does, too. I hope she is having a ball dancing.

Date:

June 28, 2006

Today

This morning I was listening to the radio, and they were talking about dreams, and what they meant. I started thinking about two and half years ago ~ when Clayton first started telling us about his dreams. He always said, “I had ALL the bad dreams!” They usually involved some BIG dinosaurs, and a HUGE fire breathing dragon. Well, Morgan picked up on EVERYTHING! She was just so smart, and she started waking up telling us that she had ALL the good dreams. She would say, “The princess threw me in the trash can.” I remember telling her that if that was her good dream, I’d hate to hear about her bad dreams. I wonder what she would be dreaming of now.

Date:

June 27, 2006

Today

Today Zekie, Clayton and I cleaned up Morgan’s room. I have just been putting things into her room, so it was a mess. Oddly enough, her room use to be the cleanest room in our house. I looked at her Polly Pockets, and thought about how much she loved to play with them. I looked at her little vanity ~ with the lipstick that she would pretend to put on, the plastic clip earrings, the nail polish she would paint her nails with. I miss her so much.

Date:

June 26, 2006

Today

Today Zekie and I were talking about how Morgan was scared of the movie, “Dinosaurs,” which just so happens to be Clayton’s favorite movie. I have to agree with Mo-mo ~ it is a pretty scary movie. Huge dinosaurs that look real! Clayton has just always loved dinosaurs. When Clayton wanted to watch that movie Morgan would say, “Cover my eyes!” and, “I don’t like this movie. I’m scared of dinosaurs.” Morgan and I would always find something else to do together. It was nice to have “girl time.” I really miss it.

Date:

June 25, 2006

Today

The other day Zeke and Bill were gone, and Clayton went up to Morgan’s room and brought down her tea set. At first I said, “Clayton! Where did you get this?” knowing that it had been in Morgan’s room. I was a little bit upset, because I did not want him to break her things. Then I thought about it and said, “Let’s have a tea party.” I am happy that he wants to play with her things ~ that he remembers playing with her. The toys that she loved the most I put in her room (to keep them safe). And I hope he will want to play with them from time to time ~ I bet it makes her happy to watch him playing like he did with her.

Date:

June 24, 2006

Today

The past few days have been very difficult for my family ~ for me. My aunt waited for her son to get in last night before she flew to Heaven. This morning ~ even before I knew that she had gone ~ I just cried. I miss my Morgan. I’m going to miss my aunt. I hope she knows how much I love her. I have been blessed with the best aunts. Thank you, Aunt Frances and Aunt Betty Anne for all that you are, and all the support you have each given me throughout the years. I love you both dearly.

Date:

June 23, 2006

Today

Last night I was just emotionally drained, and I could not write a journal entry. I went to bed shortly after I came home, and then I had a dream ~ about Morgan, and my Aunt Debbie. I dreamed that they were both fine. They both looked beautiful ~ just like they did here on Earth. The strange thing was that they were both in wheelchairs. Morgan had her purple power chair, but she really didn't look like she needed it ~ she looked so strong. She was leaning over in the chair, reaching things and picking them up. My aunt was in her manual wheelchair, and she looked beautiful ~ just like she did a few weeks ago. Her voice was as strong as ever, and I heard her say, "Hey sweetie." She has a raspy voice ~ like Demi Moore from Alabama, and I don't think that I will ever forget what her voice sounds like. Morgan and Aunt Debbie were talking about a time period ~ 12 weeks or 12 months ~ it was kind of confusing, but it had something to do with a period of time and the number 12. It was comforting to see them doing well ~ even after everything they have been through. I need to hang on to every ounce of Faith I can find, right now. I just don't understand the plan...

Date:

June 21, 2006

Today

Today Clayton and I went to Bath and Body Works to get some more Cotton Blossom lotion ~ Morgan’s favorite, and the scent that will always remind me of her. Debbie told me that she heard they were going to discontinue the line, so I wanted to get some more before it was gone. I bought a body creme, and shower gel (the last one). Once we were home, I started unpacking the bag, and I couldn’t find the shower gel. I figured that I must have left in the shopping bag. I was a little upset because I knew that it would probably be gone if I went back for it. After I started making dinner, I moved my purse from the floor in the kitchen to the floor in the laundry room. I noticed that my purse was heavier than usual. I looked inside, and there was the shower gel. I thought, “Oh no! I must have dropped it into my purse instead of the bag!” I immediately started planning how I was going to turn myself in ~ should I call the store, and tell them? Or should I go there in person and tell them? Then I started adding up what I had bought in my head ~ the total seemed about right. So I started looking for the receipt, which I had already thrown out. I found it, and luckily, I did pay for the shower gel. So, now I have to wonder, how on Earth did that shower gel end up in my purse? I pulled out my cell phone when we got in the car, and it wasn’t there then. I came from the car to the house, dropped my purse on the kitchen floor and took the bag upstairs. I may never know what happened, but I’d like to think that someone who really loves that Cotton Blossom had a good laugh this afternoon watching her silly mommy.

Date:

June 20, 2006

Today

Well, I have been very depressed for the past few days ~ I miss Morgan so much. She is the first thing I think about when I wake up, and then I realize (all over, again) she’s gone. How am I supposed to break out of this cycle? How am I supposed to try to be happy (for my family) ~ when I wake up depressed? Well, this morning, to try something different ~ I turned on the radio. Good news! My favorite morning DJ is back on the radio ~ she is funny, and cheerful ~ a great way to start the day. Then this afternoon, I had a piece of chocolate (I really don’t eat chocolate that much) and Clayton ran up to me and said, “Are you eating chocolate?” I know I’ve mentioned this before, but Morgan ALWAYS knew when I had chocolate. Today, Clayton looked just like Morgan. He smiled that little knowing smile (just like Morgan always did) ~ knowing that I had chocolate, knowing that he was going to get some ~ just like Morgan. I love to see her in him ~ it makes me feel closer to her. So, all in all, today was much better.

Date:

June 19, 2006

Today

Today I received yet another home preschool package. I have not had the nerve to call and cancel the program. It’s just hard for me to have to tell them why. So, I have just avoided it. I thought that June would be the last month, but I guess I was wrong. When those boxes first started coming, they were full of promise, and hope ~ now they just remind me of the one thing I miss more than anything on the planet. Morgan loved her preschool program ~ maybe that is why I haven’t cancelled it ~ I don’t know. I remember her sitting in her little desk just singing away, coloring, painting, trying to cut, spelling her name, Zeke’s name, Clayton’s name. It was the best time I think I have ever had.

Date:

June 18, 2006

Today

Happy Father’s Day! Today I was thinking about the past few Father’s Days we have had. I can’t remember what we gave Bill for Father’s Day last year, and I can’t remember what we did. I do remember Bill sitting out on the deck holding Morgan for at least an hour last year. She usually liked to play, or read her books when she was on the deck, but last year she let him hold her ~ what a wonderful gift.

Date:

June 17, 2006

Today

Tonight Zeke was talking about Morgan, and he said he remembered everything about her ~ except KITE FLYING! One day when Zeke was off doing something with his friends, Bill and I took Clayton and Morgan to Mt. Trashmore to go kite flying. It was a beautiful day here in Virginia Beach ~ the first Sunday, this past November. Bill figured out a way for her to hold the kite, and then he taught Clayton how to tie a piece of grass onto the kite, and the grass would fly up to the kite. They had the best time, and laughed every time a piece of grass would go to top. It was a wonderful day ~ I wish Zekie had been with us.

Date:

June 16, 2006

Today

Today I was talking to my friend, Tonya. She has a little boy, William (who is just a few months younger than Morgan) with SMA, also. We were talking about the Vest ~ also known as, “The Shake and Bake.” We used it on Morgan to break up any mucus she might have in her lungs. William likes his mommy to hold his tummy when he does his sessions. That is the only way that Morgan tolerated it, also. Although, she preferred her daddy’s hand ~ I think that is because his hand is bigger than mine. Zeke would hold her tummy sometimes, too. We would sing, “There’s a hole in my bucket,” and then we would do a countdown ~ 30, 29, 28...3,2,1 ~ DONE! She was so funny, because she would usually ask for the countdown within a minute of starting the session ~ that’s when we added the song to keep her distracted for a while. I miss her so much, and I would do anything to have the opportunity to do cough and “shaky vest” sessions with her.

Date:

June 15, 2006

Today

Tonight Zeke and Bill went to a Tides Baseball game. Clayton really wanted to go with them. I considered it for about two seconds, and quickly decided that was not a good idea. Even Zeke (who loves baseball) gets bored by the fifth inning. So instead Clayton and I went to Bayville Park. The last time we were there, we were there with Uncle Billy and Aunt Debbie... and Morgan. We played on the same equipment that we had played on with Morgan, and we even walked around the “Volcano Mountain” that Morgan had driven her wheelchair around. Once we were half way around it, Clayton sat down on a bench. It was the same bench that Morgan sat on after she drove around the mountain. She said that she needed a rest, and wanted to get out of her chair. Aunt Debbie and I sat on the bench with her, and she looked at me and said, “Mommy, you look sad. You need a hug.” Then she gave me a hug, and we said together (like always), “Big Hugs!” I love to think about her. I love that she is in so many memories ~ I just wish I had more.

Date:

June 14, 2006

Today

This year for Christmas, Bill gave me a new mixer. I love it ~ really! It was the perfect Christmas gift, because my old mixer was about 20 years old. It was terrible ~ the on/off button didn’t work, so to turn it on you had to plug it in ~ to turn it off you had to pull the plug out. It only had one speed ~ SUPER FAST! And it was loud ~ it sounded like a freight train coming through the kitchen. From the first time Morgan became aware of it, she always called it “The crazy mixer!” I laughed so hard when she said that, but I had to agree she was right, it was a crazy mixer. Tonight I was using the mixer, when Bill came home. I told him that I really loved that new mixer. He said it was definitely an improvement over the “crazy mixer.” We both laughed and talked about how Morgan came up with that name. It was nice to laugh about her together ~ and I’ll bet it made her happy, too.

Date:

June 13, 2006

Today

Tonight I was walking upstairs to put towels away in our linen closet, and I walked by our bathroom. The bathroom that Morgan loved to go potty in ~ the bathroom where she took her baths every night. I looked at the bathtub, and I could almost see her in the tub ~ laying back in her bath seat. We ordered her a bath chair when we ordered her wheelchair ~ but she really needed something else to sit in ~ ASAP. So I bought two mesh laundry bags, and PVC piping and connectors. Three hours later, we had a bath chair. She liked it, but she also liked to lay down in the tub, and wiggle. She was like a little mermaid ~ she could do so much in the water.

Date:

June 12, 2006

Today

Well, I have been dreading returning to the dentist with Clayton ~ without Morgan ~ since December. Today we went. I worried about it all weekend. I thought that it would be so hard for me, because of my memory of her going to the dentist. Like most things that I think will be difficult, it was not as bad as I had imagined it would be. This weekend I was thinking about her laying back in that chair ~ she was wearing a denim dress, with a white shirt ~ she was so upset her legs had broken out in red “hives” marks. I feel so bad that I put her through that experience ~ she was so upset. But like everything with Morgan, right after we left, she said she liked the dentist. She was always so positive.

Date:

June 11, 2006

Today

Today Clayton wanted to go into the pool ~ and it was COLD! While he was in there, I remembered how much Morgan loved to go in the pool. She really liked the pool water warm, but she would have gone in today. After about 15 minutes his lips were almost blue ~ her lips would have been pale blue after ten minutes, and then she would have come out. I would have wrapped her up in a towel, and held her until she was warm (or until she tired of me holding her). She’s still ~ and I hope always will be ~ in everything we do.

Date:

June 10, 2006

Today

Today I learned that Cassidy ~ Cassie ~ Swanson earned her angel wings. Cassie and her twin sister, Skylar ~ both affected with SMA ~ have been an inspiration to the SMA community. They were the first children with SMA that I heard about. We saw Dr. Bach two weeks after Morgan was diagnosed, and he told us about the Swansons and their parents who are devoted to the girls care. He gave us a video about SMA, and in particular, Cassidy and Skylar, “Welcome to our World.” In fact, Brain Weaver perfected the cough machine settings (40/40) with the Swanson twins. Although I have never met the girls, I have met their grandmother, Ann. This past April, I had a chance to really talk to her, and find out more about the girls and how incredible they are. My heart just aches for Skylar. Twins have a special bond, and I would imagine that SMA would make that bond between them even stronger. Their web site is http://www.believe-miracles.com/

Date:

June 09, 2006

Today

Just about every night before I write my memory about I go out on our deck in the back yard. I do after Clayton and Zeke have gone to bed, and it just gives me a few minutes to “decompress.” I sit on the bench right under our kitchen window, and from there I can see the brightest star in the sky right in front of me. Tonight I could not see the star because the clouds were too thick, so I watched the fireflies instead. For the past few nights, I had noticed that there seemed to be one firefly at the tops of our trees. It was different ~ this firefly did not have the usual yellow glow to its light, it was more of a florescent light, and instead of blinking just once ~ it would blink twice. Tonight I looked for “two blinks,” high in the trees, but I did not see it. I looked closer to the ground where most of the fireflies are, and I noticed that there were several that blinked twice. I don’t remember seeing fireflies that blinked twice before this past week. Maybe I have never paid that much attention to fireflies. Maybe I was just looking for a sign from her. I just can’t let go of our relationship. I can’t stop trying to be her mother ~ trying to find out if she's trying to tell me something.

Date:

June 08, 2006

Today

Today I realized that three years ago, my life was perfect. I had a wonderful husband, and three beautiful, healthy children. Bill and I had just placed a bid on the perfect house for us ~ the house we live in now. I had no clue that the following day, my life would change forever. Morgan wasn’t catching onto “sitting up” as quickly as Clayton had. It took him about two weeks to really get the hang of sitting up, but Morgan was still teetering after three or four weeks. June 9, 2003, we had a well baby check up with Dr. Mink. I figured I would just ask him about it, and like always, he would reassure me that everything was fine (I have a tendency to worry about everything, and thankfully, the doctors at TCA are very patient with me). I remember the appointment so well. He checked her reflexes ~ they weren’t that great ~ he checked again, and again. He looked me in the eye and said, “I think that we will refer her to Neurology.” Just to rule out anything serious, he reassured me. I was a wreck. I took her home that day, and decided that she was going to sit up. I looked back in my daytimer, and that day she sat unsupported for three minutes. At first, we were unable to get an appointment until September, but ~somehow~ Dr. Mink was able to get us an appointment for June 11 with the CHKD Neurology group. I have never really gone back and replayed the period between June 9, and June 20 (the day she was diagnosed). I have been too busy, and too happy to go down that road. I think I need to now, but it will have to be in limited doses.

Date:

June 07, 2006

Today

Tonight I was remembering how much Morgan loved fireflies. Last summer, just after the fireflies started coming out at night, we would all go out to the backyard. Morgan ~ seated in her lounge chair ~ held a plastic mayonnaise jar, and Zekie and Clayton would run around the yard and collect fireflies. It took Clayton a few days to learn not to “hold” them too hard, but he quickly became a pro. The boys would bring their fireflies back to Morgan, and put them in the jar for her to hold. They would collect about 20 fireflies. Then we would put the jar on a little table and open up the jar. When they flew out, it looked like fireworks ~ it was just beautiful. And it was so nice ~ it felt so good ~ that Morgan could do something so “normal” as collect fireflies.

Date:

June 06, 2006

Today

Tonight I made dinner, alone. It may not seem that strange. Lots of people make dinner alone. But, when Morgan was here there were very few nights that I made dinner alone. She always wanted to be in the kitchen with me. She and Clayton would play on the computer, watch music videos, or help me add ingredients to our meal (for some reason they both always wanted to crack the eggs ~ even when we didn't need eggs). They were always together and always right there with me. I’m grateful that I had so much time with Morgan ~ with Morgan and Clayton together ~ with Morgan and Zekie together ~ with all three of them together.

Date:

June 05, 2006

Today

Today my Nana came over, and we started talking about nicknames. Her name is Frances, but her sister could not say that so she called her, “Fa-fa.” Then her daughter was Frances Blair, and they called her, “Ba-ba,” in fact, my grandmother still calls her that most of the time. When Morgan was born, Clayton just could not say “Morgan” (he was just 14 months old the day she was born). He called her “Mo-mo,” instead. We all do ~ still ~ except for GrandDaddy, and he has always said, “Moo-moo,” (like a cow sound) and I love it. It really never occurred to me until today that the nicknames in our family were so similar ~ I love the fact that our Mo-mo (unknowingly) followed the “Ba-ba” and “Fa-fa” tradition.

Date:

June 04, 2006

Today

Today was better than yesterday ~ although it has now been 6 months. I can’t believe it. I miss Morgan so much, and it doesn’t feel at all like time is helping. I loved to lay in bed beside her with my hand on her tummy and feel her breathe in and out ~ I miss that. I miss her being awake and telling me what she wanted to play with, what she wanted to eat, what she wanted to do ~ and of course, what she didn’t want to do. I miss washing her hair, brushing her teeth, sitting in front of her when she went potty. I miss my best girl.

Date:

June 03, 2006

Today

I don’t think I have ever felt more heart broken than I do tonight. Losing Morgan was the worst, then telling Zeke was even harder ~ I felt all of my own pain of losing her, and his. I have been very down for the past week ~ for a lot of reasons. I have been on auto-pilot, just trying to take the next step in front of me. Today it rained all day here in Virginia Beach. I didn’t feel like getting up, getting dressed, or going anywhere. Tonight I read Clayton his good night stories, and then we snuggled. He likes to tell me that he’s my “snuggle bunny.” He is. Tonight just after his stories, and just before he fell to sleep ~ where his eyes are closed with a content grin on his face ~ he suddenly opened his eyes. He said, “Morgan was a nice girl.” I said, “Yes, she was.” He said, “She was perfect.” His little voice was cracking as he said it, tears welled up in his eyes, and that mouth that had been a smile just seconds before was trying so hard not to frown. He talked about the day that “WE” were all trying to save Morgan, and the firemen that came to help, but they just couldn’t save her. He then said, “But Morgan is in my heart, and I can’t miss her when she is in my heart.” His voice quickly changed to a more upbeat one, he rubbed the tears out of his eyes, and smiled one of his big Clayton smiles. It amazes me how much he understands, how much he feels at just four years old. I wish that he didn’t understand so much of it ~ I wish there was something that I could do to protect him from the hurt and pain he feels.

Date:

June 02, 2006

Today

I had two dreams about Morgan last night ~ I must have been dreaming about her all night. It’s kinda nice though ~ it’s like she is still here. In the first one, she was sick and Bill and I were doing everything we could to take care of her. When Morgan was sick, it reminded me of finals week in college. There was so much work (breathing treatments every four hours that lasted an hour), almost no sleep, but at the end of the week, Morgan was better and with us. (Although, an A on a final exam could never compete with getting Morgan off her bi-pap machine for a few hours.) In the second dream, we were outside on the deck, blowing bubbles. Zeke, Clayton and Morgan loved to blow bubbles. Zeke would blow them, Clayton would pop them, and Morgan would laugh her little head off at her silly brothers.

Date:

June 01, 2006

Today

I can’t believe it is June already. Now that SMArgaritaville is over, I needed another project. So, I am sanding and staining the deck in our back yard. Today, I was putting the stain down, and I thought “Would I be doing this if Morgan was here?” Yes ~ I would (not the sanding ~ too much dust for her little lungs) and she would be right there beside me talking to me the whole time, or wanting to help me like she did in our den.

Date:

May 31, 2006

Today

Today I was thinking about last summer. Our niece, Erin came to help me out last summer during the day. I was thinking about how she french braided Morgan’s hair, and how sweet it looked. Morgan had really thin, fine hair, and I just could not french braid it ~ I could barely braid it at all. When Erin did it though, it looked just wonderful, and kept her hair out of her face.

Date:

May 30, 2006

Today

I think that I have just had it with SMA! I can’t stand it! SMA won ~ SMA beat us on December 4th. From the time Morgan was diagnosed I always had hope ~ hope that Morgan would be here, and that she would be okay ~ even if she never did walk. Morgan is/was the most perfect little girl I could ever have, and I am very thankful for the three years that we had with her ~ it just wasn’t enough. I am really trying to stay positive, and enjoy each day with Zeke and Clayton. Childhood is so short, and I want to make theirs as good as possible ~ they have both been through so much already.

Date:

May 29, 2006

Today

Hi Morgan~Morgan! I hope you have had a great day, sweetie! Well, what started off as a pretty bad morning turned into a beautiful day ~ thank you so much for teaching us how to be happy with what we have. Zekie, Clayton, and I spent the afternoon playing, “Hide and Go, Zeke!” (as Clayton calls it), Simon Says, Mother May I?, and football (I have no idea why Clayton loves this game). It was a gorgeous day here in Virginia Beach. A day that you would have wanted to spend out on the deck, swimming in the pool, and just being outside. And it would have been just perfect! We all miss you so much, sweetie. Life is so different without you here everyday ~ you are the piece of the puzzle that made our family complete. We love you so much!

Date:

May 29, 2006

Today

Bill has been working on opening the pool. It has really been too cold all month long to even think about it ~ which I think I am grateful for. The pool was just such a big part of our daily lives for the past two summers. We bought an above ground pool, so that Morgan could “walk” through the entire pool, and she just loved it. She loved to walk the pool with Zeke or me beside her. But her favorite was to walk and float around without us right there ~ of course, she was never out of arms reach, but she just loved her independence. And I was so happy (most of the time) that she wanted it.

Date:

May 27, 2006

Today

Today I found some old pictures. They were unopened ~ I don’t know how they could have been, because I usually look at pictures in the parking lot at Walgreens. They were from June 2004, so I knew there were bound to be some pictures of Morgan. The first pictures were of Zeke’s graduation from the Lower School. As I looked through them ~ I saw one picture that had Morgan in her stroller in the background. Then I hit the pictures of her. She was wearing a white sundress sitting on the “cold blanket” in our back yard with Clayton. He had given her some flowers. He is so sweet about giving flowers to his girls ~ Morgan and me. In one picture it is hard to tell who had SMA ~ because Morgan was sitting up so nice, and Clayton was laying down. In another, Clayton was kissing her on the head. They just looked like they were having the best time ~ I think that these are my new favorite photos. I’ll try to get them up on the web site within the next few weeks, or I can e-mail them. She is my baby doll.

Date:

May 26, 2006

Today

Today Clayton graduated from pre-school. It was a celebration ~ but, as I sat there waiting for him to come walking through the doors ~ I thought about Morgan. I thought about the fact that I won’t see her walk through those doors ~ or even roll through. I miss her so much.

Date:

May 25, 2006

Today

I know that I have mentioned this before, but today I was thinking about when Morgan was in the hospital last March. I was remembering when the Respiratory Therapist were coughing Morgan, and each time they were done, Morgan would say, “Thank you.” She's the sweetest little girl ~ Oh! I just love her so much!

Date:

May 24, 2006

Today

Today we drove by a carnival, and I remembered last June when Sissy, Zeke, Clayton, Morgan and I went to a carnival at Mt. Trashmore. We had a wonderful time walking around the carnival looking at all the rides and games. Of course, Morgan was not very interested in any ride except the Dragon Roller Coaster! I can't believe it, but I actually took her on it, and she loved it! It wasn't a big coaster, but everytime we went down, or around a corner she would scream, "Ahhhhhh!" with delight. My mom took a picture, and I looked at it today when I came home ~ she was just thrilled, and I am so glad that I took her on that roller coaster.

Date:

May 23, 2006

Today

This morning when I woke up, I was thinking about Morgan’s little face ~ she would sometimes smile this silly little smile ~ where her eyes would get squinty, and she would smile one of those huge smiles where you could see all of her teeth. Then, she would drop it ~ back to her normal expression, and then smile that smile again ~ and again ~ it was so sweet, and so adorable.

Date:

May 22, 2006

Today

Last week I was talking to one of my best friends, Tonya (William’s mom). I heard William in the background, and he was kind of fussing ~ just like all three year olds do. Tonya said, “William, what is it? What’s wrong?” He said, “I don’t need you.” When I heard that, I remembered that I had had several conversations like that with Morgan, although, her answer was always, “I need you!” It was so great to hear him say that ~ it made me laugh thinking about Mo-mo.

Date:

May 21, 2006

Today

Well, SMArgaritaville was great! Last night, I was going to say something before we played the FightSMA video, and unfortunately, I was derailed. I could hear the song, “Angel” by Sarah McLaughlin playing, and I tried my best not to just break down. I wanted to thank all of our volunteers for all the hard work they put into making SMArgaritaville a success ~ organizing, decorating, obtaining auction items, transporting all of the auction items to the hotel, selling raffle tickets. I also wanted to thank my family and Bill’s family for all of their support, especially throughout the past five and a half months. Then, of course, our supporters ~ without our supporters we would not have been able to raise all the research funding that we did. Bill and Zeke helped me organize everything ~ checking everything, and updating the web site. Even Clayton has had more patience with me, and he knows that I have been busy working on SMArgaritaville. I asked him, “Do you know why we are having SMArgaritaville?” and he said, “Yes ~ to fight SMA.” That ‘s exactly right. Without my mom, and my sister-in-law (more like a sister) Debbie, there is no way we could have even attempted having this event. They went out and asked for auction items donations, sponsorships. They bought decorations, auction items, office supplies. I couldn’t have picked a better mother, and “sister.” Thank you all for supporting our efforts to help treat and find a cure for SMA!

Date:

May 21, 2006

Today

Well, SMArgaritaville was great! Last night, I was going to say something before we played the FightSMA video, and unfortunately, I was derailed. I could hear the song, “Angel” by Sarah McLaughlin playing, and I tried my best not to just break down. I wanted to thank all of our volunteers for all the hard work they put into making SMArgaritaville a success ~ organizing, decorating, obtaining auction items, transporting all of the auction items to the hotel, selling raffle tickets. I also wanted to thank my family and Bill’s family for all of their support, especially throughout the past five and a half months. Then, of course, our supporters ~ without our supporters we would not have been able to raise all the research funding that we did. Bill and Zeke helped me organize everything ~ checking everything, and updating the web site. Even Clayton has had more patience with me, and he knows that I have been busy working on SMArgaritaville. I asked him, “Do you know why we are having SMArgaritaville?” and he said, “Yes ~ to fight SMA.” That ‘s exactly right. Without my mom, and my sister-in-law (more like a sister) Debbie, there is no way we could have even attempted having this event. They went out and asked for auction items donations, sponsorships. They bought decorations, auction items, office supplies. I couldn’t have picked a better mother, and “sister.” Thank you all for supporting our efforts to help treat and find a cure for SMA!

Date:

May 21, 2006

Today

Well, SMArgaritaville was great! Last night, I was going to say something before we played the FightSMA video, and unfortunately, I was derailed. I could hear the song, “Angel” by Sarah McLaughlin playing, and I tried my best not to just break down. I wanted to thank all of our volunteers for all the hard work they put into making SMArgaritaville a success ~ organizing, decorating, obtaining auction items, transporting all of the auction items to the hotel, selling raffle tickets. I also wanted to thank my family and Bill’s family for all of their support, especially throughout the past five and a half months. Then, of course, our supporters ~ without our supporters we would not have been able to raise all the research funding that we did. Bill and Zeke helped me organize everything ~ checking everything, and updating the web site. Even Clayton has had more patience with me, and he knows that I have been busy working on SMArgaritaville. I asked him, “Do you know why we are having SMArgaritaville?” and he said, “Yes ~ to fight SMA.” That ‘s exactly right. Without my mom, and my sister-in-law (more like a sister) Debbie, there is no way we could have even attempted having this event. They went out and asked for auction items donations, sponsorships. They bought decorations, auction items, office supplies. I couldn’t have picked a better mother, and “sister.” Thank you all for supporting our efforts to help treat and find a cure for SMA!

Date:

May 21, 2006

Today

Well, SMArgaritaville was great! Last night, I was going to say something before we played the FightSMA video, and unfortunately, I was derailed. I could hear the song, “Angel” by Sarah McLaughlin playing, and I tried my best not to just break down. I wanted to thank all of our volunteers for all the hard work they put into making SMArgaritaville a success ~ organizing, decorating, obtaining auction items, transporting all of the auction items to the hotel, selling raffle tickets. I also wanted to thank my family and Bill’s family for all of their support, especially throughout the past five and a half months. Then, of course, our supporters ~ without our supporters we would not have been able to raise all the research funding that we did. Bill and Zeke helped me organize everything ~ checking everything, and updating the web site. Even Clayton has had more patience with me, and he knows that I have been busy working on SMArgaritaville. I asked him, “Do you know why we are having SMArgaritaville?” and he said, “Yes ~ to fight SMA.” That ‘s exactly right. Without my mom, and my sister-in-law (more like a sister) Debbie, there is no way we could have even attempted having this event. They went out and asked for auction items donations, sponsorships. They bought decorations, auction items, office supplies. I couldn’t have picked a better mother, and “sister.” Thank you all for supporting our efforts to help treat and find a cure for SMA!

Date:

May 21, 2006

Today

Well, SMArgaritaville was great! Last night, I was going to say something before we played the FightSMA video, and unfortunately, I was derailed. I could hear the song, “Angel” by Sarah McLaughlin playing, and I tried my best not to just break down. I wanted to thank all of our volunteers for all the hard work they put into making SMArgaritaville a success ~ organizing, decorating, obtaining auction items, transporting all of the auction items to the hotel, selling raffle tickets. I also wanted to thank my family and Bill’s family for all of their support, especially throughout the past five and a half months. Then, of course, our supporters ~ without our supporters we would not have been able to raise all the research funding that we did. Bill and Zeke helped me organize everything ~ checking everything, and updating the web site. Even Clayton has had more patience with me, and he knows that I have been busy working on SMArgaritaville. I asked him, “Do you know why we are having SMArgaritaville?” and he said, “Yes ~ to fight SMA.” That ‘s exactly right. Without my mom, and my sister-in-law (more like a sister) Debbie, there is no way we could have even attempted having this event. They went out and asked for auction items donations, sponsorships. They bought decorations, auction items, office supplies. I couldn’t have picked a better mother, and “sister.” Thank you all for supporting our efforts to help treat and find a cure for SMA!

Date:

May 21, 2006

Today

Well, SMArgaritaville was great! Last night, I was going to say something before we played the FightSMA video, and unfortunately, I was derailed. I could hear the song, “Angel” by Sarah McLaughlin playing, and I tried my best not to just break down. I wanted to thank all of our volunteers for all the hard work they put into making SMArgaritaville a success ~ organizing, decorating, obtaining auction items, transporting all of the auction items to the hotel, selling raffle tickets. I also wanted to thank my family and Bill’s family for all of their support, especially throughout the past five and a half months. Then, of course, our supporters ~ without our supporters we would not have been able to raise all the research funding that we did. Bill and Zeke helped me organize everything ~ checking everything, and updating the web site. Even Clayton has had more patience with me, and he knows that I have been busy working on SMArgaritaville. I asked him, “Do you know why we are having SMArgaritaville?” and he said, “Yes ~ to fight SMA.” That ‘s exactly right. Without my mom, and my sister-in-law (more like a sister) Debbie, there is no way we could have even attempted having this event. They went out and asked for auction items donations, sponsorships. They bought decorations, auction items, office supplies. I couldn’t have picked a better mother, and “sister.” Thank you all for supporting our efforts to help treat and find a cure for SMA!

Date:

May 21, 2006

Today

May 20, 2006 ~ Well, Clayton has been sleeping with us since he has been sick. Last night, I crawled into bed with him and Bill. Sleeping with Clayton can be... dangerous. He kicks, and throws punches all night long. The only way I can sleep with him in our bed, is to face away from him (to protect my face ~ eyes, nose, teeth). Last night before I rolled away he somehow managed to connect his elbow to my eye. When I rolled to the other side, I thought about all the nights I spent sleeping with Morgan. She liked to fall asleep without her bi-pap on. About an hour after she went to sleep we would put it on her. When I slept with her (which was almost every night from last March until December) she would face me, and I would face her. The bi-pap mask has vent holes, so I could feel air blow in my face when she would exhale. I loved being able to feel her breathe, and it helped me sleep better.

Date:

May 19, 2006

Today

Tomorrow’s the BIG day! SMArgaritaville! It’s been a pretty emotional week for me. I keep thinking about Morgan, how I wish she were here, and how much I miss her. As I mentioned a few weeks ago, they are having a memorial service at CHKD for the angels of 2005. Today was the deadline to RSVP. I have been very conflicted about whether or not I should go. Today I ran into our minister, and talked to him about it briefly. His wife is the chaplain at CHKD. I told him that I wanted to honor Morgan, but I do not think that I am ready to share my grief with other parents that were mourning ~ I’m just not there yet. He said, “Morgan’s Buddies is wonderful way to honor Morgan.” That’s true ~ it is. SMArgaritaville will give us an opportunity to honor Morgan (the way that Morgan would have wanted us to ~ with a party), help raise money for research treatments for the other children with SMA, and celebrate the advances made in the Fight!

Date:

May 18, 2006

Today

Today I was thinking about the music they are going to play at SMArgaritaville. Then I started thinking about Morgan, and how we danced almost everyday in the kitchen. Morgan would listen and watch her videos and say, “Dance with me, Mommy!” I love that little sweet voice, that I can still hear. “Dance with me, Mommy!”

Date:

May 17, 2006

Today

Today I was talking to Debbie, and I started thinking about when we were in Nags Head ~ two years ago. Aunt Debbie and Uncle Billy came and stayed with us for a few days. I remembered that we were sitting at the dining room table ~ Morgan was sitting next to Billy in her high chair. I had been stretching her feet a little bit, and Billy asked me what I was doing, I explained to him that I was having a problem keeping Morgan’s AFO’s on her (the ones that she could take off herself), and that I tried to stretch and massage her feet as much as possible. He instantly ~ and without even thinking about it ~ put one of her feet in his hands and started to stretch and massage it. After about 10 minutes, he moved to the other foot. Billy is very gentle and kind ~ I don’t know if anyone else even knew that he was doing it, because he is so subtle. I’ll never forget that, and I don’t think that Morgan ever did either, because she LOVED her “Uncle Baby!”

Date:

May 16, 2006

Today

This morning I woke up, went downstairs and started to make breakfast for Zeke. I usually go back upstairs to make sure he’s awake. This morning, though, I had about 2 seconds of thinking that I was going to get Morgan. I was so happy ~ I felt just like I did when she was here. I didn’t realize how happy I was, but I was, and I felt it again today. Of course, it was heartbreaking when I realized that I wasn’t going to get her. On a brighter note, a special guest arrived at our house, just in time for SMArgaritaville. Mr. Bear arrived safe and sound all the way from Canada. Mr. Bear has been visiting SMA families all over the US and Canada. In fact, when we were in Michigan in December, we saw him while he was staying with the William’s family. You can visit his web site at: www.our-sma-angels.com/mr_bear.htm We have a busy week planned for Mr. Bear. I will be telling Morgan all about our adventures with him over the next few days.

Date:

May 15, 2006

Today

This morning, Clayton and Morgan were scheduled to have their dental check-ups. I knew it was coming ~ I have known all along ~ I just didn’t want to deal with it. Friday the reminder call came in. They called my cell phone and left a message. I called back and told them that we needed to cancel / reschedule. I explained that Clayton was sick, and Morgan was ... lost ~ that’s all I can say, “We lost Morgan.” I looked up the word “lost” and here are some definitions: 1 : not won, 2 a : no longer possessed b : no longer known 3 : ruined or destroyed physically or morally : 4 a : taken away or beyond reach or attainment :5 a : unable to find the way b : no longer visible. I think lost is the right word. We lost ~ we lost Morgan. This afternoon, I was still thinking about the appointment. I don’t know which is harder; the fact that I had to cancel the appointment for this morning, or the fact that I don’t have another appointment that needs to be cancelled.

Date:

May 14, 2006

Today

Happy Mother’s Day to all the mothers out there! I hope that you all have had a great day ~ especially my own Mother! I thought that today would be difficult, but it was actually pretty nice (Thank you, Mom). This morning Bill and I talked about Morgan, and the funny things she did and said. Clayton is still not well, he has had a high fever (almost 103) for the past 24 hours, so that has been where most of my attention has been focused. Last year, a week before SMAsquerade, Morgan was the one that was sick. I don’t know why I don’t allow myself extra time for these types of things, you’d think I’d know by now. Morgan came down with her first "little" cold on October 28, 2004 (SMAsquerade was November 6, 2004). Some dates are just etched in my mind. I remember that Bill and I tried all night to keep Morgan’s O2 (saturated oxygen) above 94. We coughed her, did CPT (Chest Percussion Therapy), nebulizer treatments, everything. Finally, we put her on her bi-pap for the first time. We really had no idea what we were doing (the respiratory therapist had not come out to show us how to use it), but we knew that it helped other children with SMA. Finally after a half an hour on the bi-pap, her O2 went up to 94, and stayed there. Thirty minutes later, she was at 95. She wore the bi-pap all night, and around 3:30am she was between 98-99 ~ her normal O2 levels. I was still a wreck, though. I didn’t know Suzanne that well, and I was a little bit hesitant to call her at work (of course, now I wouldn’t give it a second thought), but another mom e-mailed me and told me that I could call her. I had only met this mom one time, and now she is one of my best friends: Kim McAdams. Kim talked me through everything, told me what equipment we needed, looked up part numbers, and helped me get all the equipment delivered the next day. All this while taking care of her own three children, including one with SMA, Skyler. Kim has always been very generous ~ spending numerous hours working with parents on diet issues, sugar issues, NIV care, trach care, and trouble shooting. She and her husband also recently started a chapter of SMA Support. You can visit their web site at www.planetsma.com ~ Then there is Suzanne ~ Erinne’s mom www.our-sma-angels.com/ErinneRose/ Bill and I began "stalking" Suzanne for information. I tried to copy everything she did with Erinne, and committed everything she said to memory. She knows it all ~ and she learned it the hard way. Erinne spent 101 days in the hospital, and 85 days intubed. I have called Suzanne in the middle of the night (several times), at work, in her van, at hockey games, and she has always taken the time to help me, and give me advice. When Bill and I would review treatment options for Morgan (when she was sick), Bill would always ask, "What does Suzanne say?" I am so grateful for all the support, help and advice we have had for the past three years, and it is all because of SMA Support, and Laura Stants. I just want to thank them, and let them know how they helped make Morgan’s life as wonderful as it was.

Date:

May 13, 2006

Today

Today Bill and I were talking about how funny Morgan was. Many of you may already know this, but Bill always read to Clayton and Morgan until they fell alseep. Morgan quickly out grew falling asleep while Daddy was still reading, although Clayton would be out by the time Bill finished the first book. After four or five books, Bill would say, “Okay, Morgan. It’s time to go to sleep.” I would hear her (over the monitor) whine, “No Daddy.” Then with a sweet perky voice, she would ask, “Just one more, please!” She got him quite a few times ~ but just one more was rarely, just one more. She really wanted two, three, or four more. I’m glad that she loved stories so much ~ I’m glad that she was so happy.

Date:

May 12, 2006

Today

This morning I was about to give Clayton his cough medicine, and he said, “I don’t want that cough medicine. I don’t like it.” He tone and inflection sounded exactly like Morgan. She was so good about communicating with us ~ the things she did not like, especially. I remember the day of her last Synagis injections, she told Sissy, “Let’s let her give the shot to Clayton.” She wanted to move out of our den to ANY other room in the house ~ she just did not want that shot. I don’t blame her though. If you let the alcohol dry before the injection it doesn’t sting (as bad) as it does when you don’t let it dry. I learned that from the nurse that gave me my Flu shot this year. He worked at a children’s hospital, and he said that made the biggest difference. This year we tried it out, but Morgan just knew she was supposed to cry for a second or two ~ she was such a funny girl. I am so thankful that I know her personality so well ~ that we were ~ and really still are ~ so close.

Date:

May 11, 2006

Today

Wow! Thank you to everyone that responded today ~ we have almost 30 more people coming to SMArgaritaville! The more the merrier!

Date:

May 11, 2006

Today

This morning I noticed the big, soft, furry pink blanket in my room. I made it last year for Morgan when we came home from the hospital. Bill and I had learned to cough Morgan laying her down, and the best place to do that (at home) was on the floor. I didn’t want to lay her on the carpet ~ it just didn’t seem clean or soft enough. So I found the softest fabric I could find and made her a blanket. It worked perfectly, although it was always too hot for her to sleep with, and she did not like to lay on it while she was reading (because it was too “fuzzy”).

Date:

May 10, 2006

Today

I would like to thank all the people that are coming to SMArgaritaville ~ and the people who are going to be there in spirit. If anyone reading this is planning to attend (and even if you are not certain), please e-mail me at fightsma@cox.net ~ Mahi Mah’s needs to have the head count by Monday, so that they can order and plan the food for the event. A lot of people have asked me what type of food Mahi Mah’s is going to serve, so I am going to answer that here. We are calling it “heavy hors d’oeuvres,” but it really is enough food to be considered dinner ~ a big dinner at that. We will have: Petite Dessert Mirror, Domestic and Imported Cheese Display, Fresh Vegetable Display, Scallops wrapped with Bacon, Grilled Red Curry Chicken Satays, Mini Crabcakes (that are huge), Coconut Fried Shrimp, Top Round of Beef, Whole Roasted Pig Chef Carved with Rolls and Condiments, and Jumbo Cocktail Shrimp on Ice. So, you can see it is a ton of food (not to mention drink tickets) ~ and Mahi Mah’s is one of the best restaurants in Virginia Beach! The auction is going to be great also ~ the businesses around Tidewater have been so generous ~ just tonight we received a mini iPod (1 GB) from Circuit City, and another restaurant gift certificate. We are also planning on playing the National FightSMA Awareness DVD, that features Morgan. It is a great DVD, (how could it not be with Morgan featured??) and shows all the different aspects of having a child with SMA.

Date:

May 10, 2006

Today

Today I was working on the SMArgaritaville Program, and I remembered that last year as I was doing this I had Morgan sitting on my lap talking to me. She was the best little helper ~ even at two years old. I’m sure that she would not have had a lot of patience with me this year. She was at a point where she wanted to do what she wanted to do ~ play on the computer, listen/watch her music videos, or play with her Polly Pockets. I would not have had SMArgaritaville right now if she was here, but we (Sissy, Aunt Debbie, Aunt Betty Anne, Bill, and I) needed to do something for Morgan. I hope that the money we raise this year will help fund research on the heart issues ~ the issues that took Morgan. That is why THIS event is so important to me. I want to make sure that what happened to Morgan doesn’t happen to any other child with SMA. This research will make a difference ~ a difference that we will see within the next year (and in some cases immediately), not three years from now, not five years from now. I miss my girl ~ I want to keep fighting for her.

Date:

May 09, 2006

Today

Tonight I was on the phone with Debbie (Morgan’s aunt ~ my sister-in-law, that is like a sister to me) and Clayton was playing in our bedroom. He went under our bed and pulled out a green and purple baby quilt, and a memory box. I have not mentioned this box to anyone ~ mostly because I have not even had the courage to open it myself. It came from CHKD. It has Morgan’s hand print, a lock of her hair, and possibly her footprint. I still don’t know for sure, because even though Clayton pulled it out, I did not look inside. I already know it’s sad ~ it isn’t a happy hand print like the one we made the morning of December 3rd. I’m not ready yet, and it’s okay, because Bill isn’t ready yet either. I saw the blanket, and that night just came rushing back. I couldn’t even talk. Debbie kept asking me what was wrong, and I tried to speak, but just stumbled over the words. Finally, I was able to tell her what he had pulled out. I took the box and the quilt away from Clayton, and put it in Morgan’s room ~ up in the top of her closet. I did not even know that it was there ~ under our bed. I never asked Bill where he put it. I didn’t want to think about it. But, now I know where it is, and when (or if) I am ready to open the box, I will know exactly where it is.

Date:

May 08, 2006

Today

Today I was driving back from NCS with Zeke and Clayton and we drove by a huge bush. Zekie said, “Is that a honeysuckle bush?” I said, “Yes, it is.” It reminded me of last spring. We were at my cousins (and aunts) house for his son’s birthday party, and Sissy took Morgan over to their honeysuckle bush. Sissy showed Morgan the honeysuckle, and let her smell it. And then, she let Morgan taste it ~ she just loved it! Naturally, she wanted to do it again and again! It is so funny ~ and not so funny ~ that almost everything we do reminds me of Morgan. I thought that might decrease over time, but I’m glad it hasn’t ~ I want her to be a big part of my life ~ always ~ even if she is not here.

Date:

May 07, 2006

Today

Today I was thinking about one of Morgan’s therapies ~ I think that we started it in Physical Therapy with Judy (before Morgan started formal Occupational Therapy sessions). I remember it was fun, and challenging. Morgan had a little purse that zipped up. Well, zippers are hard anyway, but even harder if you have SMA. We worked with Morgan to grasp the “pull” on the zipper, and then unzip her bag. It was tough going. But I remembered that I had bought a “zipper pull” for Morgan that had her name going down on it, so it extended the zipper pull about an inch and a half. This made the biggest difference for her. I’m not sure why, maybe it was because she could wrap her whole hand around it. The zipper was still pretty “tight.” So I tried to loosen it up by pulling the zipper back and forth. The zipper just was not going to get any looser, so I found another little bag that had an easier zipper for her, and she was able to zip and unzip the bag. She didn’t do it a hundred times in a row like Clayton would have, but she could open it and close it, and I know she loved having that feeling of control. I loved it when we could find things that gave her independence.

Date:

May 06, 2006

Today

This afternoon I went to our mailbox and opened a letter from our children’s hospital. We have been invited to a memorial service for the children that became angels in 2005. This is so difficult. Of course, I want to remember Morgan ~ I do everyday anyway. It is just hard for me to go through a formal service. As strange as it may sound, I don’t know that I am ready to share my grief with anyone. I know, I know ~ I do it here! But, here on Morgan’s Journal ~ it’s all about her, and right now I am just so wrapped up in my own pain, I don’t know that I could even sympathize with someone else’s. I hope that one day I will be able to lend support to other parents that have lost children ~ but I can’t right now. If I don’t go to the service, I know that I will feel guilty ~ I think that it would feel like missing a school play or program ~ of course, a memorial service is very different, but lots of things were different with Morgan. I just figured I would adjust to whatever was going to be normal for her. This kind of service though, is NEVER normal for your child. Well, I don’t have to make a decision right tonight. It’s just difficult...

Date:

May 05, 2006

Today

Today I was thinking that I haven’t spent much time in the yard this year. I love my yard, I love to plant flowers, water the plants, pull weeds, all of it. But this year I just can’t seem to get into it like I usually do. I tried to reason that it is because I have been busy planning SMArgaritaville, but I don’t think that is the real reason. I think that it is because we (Clayton, Morgan, and I) spent so much time outside in the spring. Last year, I was weeding a flower bed one day. I had Morgan playing on the deck (I was always afraid that if I put her down in the yard, bugs would crawl on her, and she wouldn’t be able to get them off) in her bouncy chair, and she called me, “Mommy! Come here!” So, I went up to the deck, and sat down beside her, and said, “Yes, Morgan.” She looked up at me and said, “What are you doing?” I said, “I was weeding the flower bed.” She said, “Can I help, too?” I thought ‘Oh no! She is going to get bugs on her, and itchy ~ what am I gong to do?’ but as soon as I thought that, I thought ‘This is something that she wants to do. I have to let her.’ So I said, “Of course you can, sweetie.” I took her over to the flower bed with me (with a lot of towels to out under her), and I asked her if she wanted to sit up or lay down. She wanted to lay down, so she could “look at the dirt.” She picked up dirt, leaves, sticks, and even a WORM! She loved it ~ and it was the best time I ever had weeding a flower bed.

Date:

May 04, 2006

Today

Today it’s been five months ~ it’s hard to believe ~ sometimes it feels like forever, and other times it feels like it was just yesterday. Today I had an interview with Jim at 92.9 The Wave ~ the best radio station! He does the Hampton Roads show on Sunday mornings. Thanks to Jennifer, we had our first interview with him a little over two years ago. From that interview he produced a Public Service Announcement (PSA) about SMA. The PSA raised a lot of awareness of SMA here in Hampton Roads, and one little boys parents had their son tested for SMA after hearing it. Unfortunately, Samuel was diagnosed with SMA just three days before his second birthday. He is doing well, and is enrolled in the clinical trials that Morgan was going to be involved with. It was nice to talk about Morgan ~ about how smart she was, how happy she was, and how beautiful she was. I said something to Jim that I have thought several times since December 4th, but I don’t know if I ever wrote it here. When Morgan was here, I wanted to see my little girl stand up and walk, now that she’s gone, I just want my little girl that doesn’t walk. She was perfect, and part of what made her perfect was the fact that she had SMA.

Date:

May 03, 2006

Today

First, I want to wish my niece, Zoey and her mom (Bill’s sister), Jamie a “Happy Belated Birthday!” Zoey's birthday was last week, and her mom's was yesterday. Zoey ~ you are so sweet, and I know ~ and Morgan knows ~ how much you love her. Last night I had a dream about Morgan ~ well, really about all of us ~ BUT Morgan was there! I dreamed that we were going to Busch Gardens, and we ended up on a tram that went no where. Somehow, we ended up on an RV, and I fell alseep with Clayton next to me. I woke up (in the dream) with a big blue parrot on me (SMArgaritaville must be getting to me). It was so big that it’s tail feathers were hitting my feet. Then a huge eagle swooped into the RV (somehow) and grabbed the parrot. So, I rolled over and my hand fell over the side of the bed. Suddenly a lion cub started swatting at my hand. At first it was playful, but it quickly became much more aggressive. I was worried about Clayton and Morgan. I knew that Clayton was okay, because he was right beside me, but I had no idea where Morgan was. I started looking for her, and I found her on a crib mattress. My mom had barricaded her on the mattress with all these other crib mattresses protecting her. I peeked over the side, and I just watched her sleep ~ she was safe. She was on her side, with her hands together under her chin ~ just like she always slept. Of course that’s when I woke up. I tried to go back to sleep to continue the dream, but it was gone. I felt so happy when I woke up, like I had spent the entire night with her ~ it was wonderful.

Date:

May 02, 2006

Today

Sometimes it just hits me ~ out of the blue. Today, I was driving down Independence Blvd., and I saw an ambulance. I was okay until I saw them pull the stretcher out. Then it took me right back to December 3rd. I was almost sick. I remembered the ambulance ride from our house to Bayside Hospital. I remembered how the EMS coordinator told the driver to slow down ~ it must have meant that she was not doing well. I was in the front, but I could see her stats ~ her heart rate was so low ~ 32, 28, 35. The EMT’s were pumping her heart for her. Every time I hear a siren, I go back there. I get that same anxious feeling in the pit of my stomach. My heart starts racing. It is exhausting. I wish that there was something I could do to forget that day. I can live with what happened ~ and all the wonderful memories from before that day ~ it is just that one day ~ that feeling of total helplessness and hopelessness that is so hard for me.

Date:

May 01, 2006

Today

Today I was cleaning our den, and I found one of Morgan's Polly Pockets. It was an older one. Morgan had two older ones ~ this girl (that I found), and the "motorcycle guy." Morgan always called him the "motorcycle guy" and we never knew why. Daddy always had to be the motorcycle guy, and Morgan would say, "Hi guy!" He was always the boyfriend to whatever Polly she was playing with. Today when I saw the other Polly, all I could think of was, "Hi guy!" with that sweet little voice.

Date:

April 30, 2006

Today

Today (after the dedication at Buff’s Garden) we were talking about how Morgan just loved to make Clayton crazy! She did ~ she would sing, or her favorite thing to do was to poke at him while they were in their car seats. Clayton would say, “Morgan! You are making me crazy!” It has been a long hard day, and I am emotionally drained. Hopefully, tomorrow will be better...

Date:

April 29, 2006

Today

Today I noticed that Zeke was working on coping pictures from our computer to his iPod. He told me that now I don’t have to worry about losing the pictures, because he would always have a back up copy. I saw one of the pictures, and it was Zeke and Morgan. She was touching his face ~ almost three years ago. They both looked so little ~ she was bald, and his hair was still blond ~ my sweet babies. She always loved him so much ~ I think it was because he paid so much attention to her. Of course, Zekie just adored her, too. They loved to be together. I hope that he is okay ~ I know this is so hard for him. I am thankful that they have such a special relationship.

Date:

April 28, 2006

Today

This week in Washington was nice, because I was able to talk to a lot of the parents about Morgan. I was talking to Patrick’s dad about how Morgan would wake up every morning just so happy, and ready to go to “school!” He said that his son also woke up in the greatest mood, although it wasn’t because he loved school that much ~ he just woke up happy. That is the thing about children with SMA, they are so happy, despite all the limitations they may face. I am so thankful that I was able to know Morgan, to see that she was so much more than just a little girl in a wheelchair (not that she was in it all that much).

Date:

April 27, 2006

Today

Today I was thinking about the way that Morgan wrote. This morning I was sitting with Tonya and William, and he had his business cards that he was autographing. He is just too adorable ~ William signed a card with a “W” and said, “Here this is for you to keep.” I loved William’s “W” ~ it reminded me of the way Morgan wrote her “M’s.” We had started working on writing her name ~ “M - O.” It was nice to see William. He did not remind me of Morgan, in fact he is actually a lot more like Clayton. I am grateful that I was able to see him, Samuel, Iceis and Patrick. I really love the children (with SMA), and they don’t make me feel sad, or make me miss Morgan anymore than I do anyway.

Date:

April 26, 2006

Today

Today I went to some research meetings and "Thriving with SMA" presentations afterwards. The research meetings were very exciting, and the presentations were awesome. Brian Weaver (RRT at UMDNJ) mentioned suctioning with SMA children. He said that the SMA children had tongues like Billy the Kid. Morgan did not at all like suctioning ~ she even broke the skin on my finger (with her teeth) when she was in the hospital last March. And she could divert the suction catheter every time I put it in her mouth. Finally, we reached an agreement, where she would just spit for me. She was so wonderful, and knew exactly what worked and what did not work for her.

Date:

April 25, 2006

Today

Today I was thinking about when Morgan was first diagnosed with SMA. We made an appointment to see Dr. Bach within two weeks of Morgan being diagnosed. He is an amazing doctor who has given parents so much hope for our children with SMA. I remembered telling him that I was so worried about Morgan having SMA, and he said that if I was going to worry about anything, I should worry about how we were going to pay for college, because children with SMA are extremely bright. It was just what we needed to hear.

Date:

April 24, 2006

Today

SMArgaritaville Update! The invitations to SMArgaritaville have been mailed. If you have not received one (I am sorry ~ I seem to have lost quite a few addresses when my computer crashed in March), please e-mail me your address at stacysaville@cox.net I need to turn in a head count to Mahi Mah’s by May 10th, so they can plan accordingly. We have received over $11,000.00 in auction item donations from area businesses, restaurants, and artists (not to mention a few celebrities). If you have not had a chance to check out our auctions items, please visit http://members.cox.net/fightsma/pages/SMArgarittaville2006.htm I am going to be going to Washington DC in the morning for the annual FightSMA research conference. I am not sure how much computer access I will have over the next few days, but I will post when I return on Friday. Have a good week!

Date:

April 24, 2006

Today

Well, it happened again today... Apparently, there is a little girl that lives behind us named, “Morgan.” Last week, I heard an older sibling yelling at her, “Morgan!” Today, I heard her mom. I have not made a decision as to whether this is a good or bad thing. I suspect that it may be a little bit of both. I’m sure that I will have days that I just can not deal with hearing my baby’s name screamed over and over again, but today I liked hearing her name every couple of minutes. There is a little boy that lives across the street from us, and he has the same birth date as Morgan ~ I like knowing that I will always be able to see someone (little Matthew) who is exactly the same age that Morgan would be.

Date:

April 23, 2006

Today

First, I want to thank all of you that read about Morgan, and those of you that are just getting to know her. I know this is hard to read ~ especially for those of you that have children with SMA. But, I want to thank you, and tell you how much it means to me that Morgan is still apart of this world. Today Zekie and I were talking about Morgan ~ he brought her up ~ he said, “I think Morgan’s first word was positive.” I said, “I think that you are right ~ that was one of the first words she said.” He said, “I think that she taught Clayton all of the big words ~ you know 3 syllable words, and he helped her with the little words.” She loved her big words! Tonight Clayton was eating a strawberry popsicle, and he said, “This is delicious.” I just heard her voice ~ I can’t even begin to count the number of times I heard her say those exact same words.

Date:

April 22, 2006

Today

Zekie and I have been talking a lot about life and death. It is a confusing time for me, so I imagine it is hard on the boys. I think that we all want some assurance that there really is something beyond this ~ some hard evidence. I think that Zeke gave me a message directly from Morgan a few days ago. He said that he would hate to know that he was going to die. He would want to have a heart attack, something quick, so he wouldn’t have to suffer. He wanted to live and be happy, happy, happy until he was gone ~ that is kind of what happened to Morgan ~ she was happy, happy, happy and then gone. I have heard that called the “death of kings.” Since Morgan and Zekie are so much alike, I like to think that if she had a choice that is how she would have wanted to go. It makes it easier for me to accept, if I can believe that she did not have to suffer, and would have chosen that path. ALTHOUGH, then I think why should a three year old have to think about that kind of stuff at all? I’m really all over the place with this. I hope to reach some sort of peace, but it may take a while, until then it does help me to remember, think about, and write to Morgan on a daily basis.

Date:

April 21, 2006

Today

Tonight we had pizza for dinner. Ever since I can remember, we have always had pizza at least one night a week. It was the first food my brother learned to cook ~ and it may actually be the only thing that he can cook to this day. I like pizza, but if I never had it again ~ it would not be the end of the world. Two of my children, however, must have inherited this love of pizza from their Uncle Billy. Zekie and Morgan love pizza. Morgan could easily eat two pieces of pizza at one sitting! When she was in the hospital (last March), she was taken off all oral feedings for over a week. When Dr. Chris said she could go back to a normal diet he said, “I hear she likes pizza ~ I know someone can find that girl some pizza!” And they did! Tonight, Bill and I just looked at each other ~ and we knew ~ we were both missing our girl. Nothing happened to make us think of her ~ we just missed her ~ missed her eating her pizza ~ watching a movie with her brothers. Everyday, ordinary things were just so much better while she was with us...

Date:

April 20, 2006

Today

This morning I sat at the kitchen table looking out the window that overlooks our deck. We have a little bird house out there, and every year we have these little wrens that move in. The first set comes in mid April, and they have their babies sometime in mid May, then the baby birds and the parents usually leave between the first and second week in June. We always have a wonderful time watching them. This year (we always refer to them as tenants) we had a couple move in for a few days, and then they were gone ~ they even left all of their sticks (furniture). Now we have a new couple. Morgan would have loved watching these birds, they are so funny. We don’t know the difference between the male and female, but we think that the female goes out every morning and brings back more sticks (furniture) ~ it’s like she’s thrift store shopping. The little house has sticks coming out of the front hole, the back hole, and the bottom. On Saturday morning, she came back with more sticks (must have hit a garage sale) and the male jumped off the roof when she tried to make it into the house ~ she ended up dropping the stick. Morgan would have had the greatest time watching that. This morning, I almost cried ~ happy tears, knowing how much Morgan enjoyed simple things in life like these birds, and how she taught me to enjoy them. What an amazing little girl.

Date:

April 19, 2006

Today

Tonight after dinner, Bill and I went out on the deck in the back. It was beautiful outside ~ but not an airplane in the sky. Morgan loved to watch the airplanes. There was a picture of her in the newspaper in August that shows her looking up in the sky ( http://www.our-sma-angels.com/morgan/inthenews3.htm ). I remember when the article came out, I said to Bill “I wonder what she was looking at...” He said, “Why don’t you ask her?” So when Morgan woke up I showed her the picture, and said, “Morgan, what were you looking at?” She said, “I was looking at the airplane, Mommy.” She was so funny ~ she was always the first one of us to hear them or see them. I remember thinking how good her hearing was because she always heard airplanes long before I did. Sometimes, I forget how hard this is for Bill ~ I get focused on myself ~ but it is so hard for him, too. This week has been very difficult. A young man he works with lost his daughter this week. I believe that she had a heart defect, and only lived a few days ~ it is just so hard to a lose a child ~ whether it is a week, three years, nineteen years ~ it is just the hardest thing that a person could ever go through.

Date:

April 18, 2006

Today

I’d like to write a little bit more about the Synagis injections. These shots were very expensive. The series was from October until April (or May) with a set of shots each month. Each month the injections ran about $3,000.00 (so the entire series ran somewhere around $18,000.00). Synagis is a vaccination against RSV, one of the most common cold viruses. It is very dangerous for infants, and especially premies. In fact, the main reason that Synagis was developed was for premies. RSV is a respiratory virus, and can be deadly for a child with SMA. Most insurance companies will pay for the injections, but only until a child has reached the age of two years. With premature babies, they have normally “caught up” by then. A child with SMA though, really needs these injections even more so after the age of two (as the theory is that they get weaker as they get older). We had to “fight” with the insurance company for the last two years for Morgan to be approved for the injections. This past October, I researched the internet and found five articles that had been written in 2005 that advocated the shots for children with neuromuscular diseases. I knew that Morgan hated the injections, and she did have some minor side effects with them ~ occasionally an ear infection, and usually a lot of excess secretions for 5 to 10 days after the injections, but I really thought they were in her best interest. I also wanted her to have these injections in our home as opposed to the doctors office. I really did not want to risk taking her into the pediatricians office every month. Our pediatricians (and their entire staff) are the greatest. They always supported my wishes with Morgan. I don’t know that any other pediatric group would be so willing to listen to a parent ~ a parent without any kind of medical training whatsoever ~ that thinks they know what is best for their child. I know that Morgan would not have been as healthy and happy if it were not for Tidewater Children’s.

Date:

April 17, 2006

Today

I know that these entries have been awful lately ~ I am so sorry ~ I have been extremely depressed. I think that my "new normal" may just be like that ~ some days will be better than others. Tonight I cut my finger (on the peanut butter jar ~ I am such a klutz!) ~ it wasn’t too bad, but I needed a band-aid. Zeke pulled out the “First-Aid” container, and found a band-aid for me. It was a Barbie band-aid ~ with the pink background and the purple, pink and white hearts. Of course, Morgan did not sustain many (well, any) injuries where she needed band-aids, but she did get the Synagis injections each month. It was a shot in each leg ~ and they never sent band-aids. It worked out well, because Morgan did like her Barbie band-aids ~ although I am sure that she would have much preferred not having the shots. I always just wanted to make sure that she had the best care ~ I don't know that I would have made her suffer with the injections every month if I had known that we would not have her with us forever...

Date:

April 16, 2006

Today

Happy Easter to everyone! Holidays are difficult ~ I think that it is because you remember holidays with more clarity than other days. Morgan loved Easter. She loved pulling the grass out of her Easter basket. She loved looking for eggs that the Easter Bunny left. She would look around, and tell Zekie where they were. She had a head start ~ then Clayton, then Zeke. It was always fun ~ and now it seems like it is an effort ~ not even just for Bill and me ~ but for Zeke, too ~ even Clayton. We are all trying to go on, but like I said, even Clayton will mention how he misses Morgan, or how we need to have something for her. It makes me feel good that he always includes her, but at the same time, I wonder if he thinks that she is coming back.

Date:

April 15, 2006

Today

Today we went over to Sissy and GrandDaddy’s house. I was thinking about the last time we were at Sissy and GrandDaddy’s with everyone there ~ Morgan was driving her chair all around the driveway and yard, and we were all so proud of her!

Date:

April 15, 2006

Today

I just found out about a very cool and EASY way to raise money for SMA Support.

Now you can raise money for SMA Support just by searching the Internet at GoodSearch.com.

You use GoodSearch.com like any other search engine - the site is powered by Yahoo! - but each time you do, money is generated for us. Here’s how it works:

1. Go to www.goodsearch.com.

2. Type "SMA Support" into the “I support” box and click on “verify”

3. From now on, just search the Internet just like you would with any search engine! Just go to www.goodsearch.com instead of say google.com!

Since GoodSearch shares its advertising revenue with charities, every time you search the internet at GoodSearch, you will be earning money for us! Each search will generate approximately $0.01 for the designated charity or school. If you think about how many times you search the Internet each year, and then add in all the searches from the supporters of your organization, it quickly adds up. 100 people searching twice a day will average out to about $750 per year-and the more people who use it more often, the higher the numbers go!

GoodSearch also has a toolbar you can download so that you can search right from the top of your browser, at www.goodsearch.com/toolbar.

You can keep track of our estimated earnings by clicking on “amount raised” once you designate us as your organization of choice. The more people who use the site, the more money we’ll earn, so please spread the word!!

SMA Support is the organization that supports all of the "SMA Angels" web sites, and is dedicated to improving the lives of children living with SMA. To find out more, please visit www.smasupport.org. Thanks!

Date:

April 14, 2006

Today

Today I was thinking about Morgan playing with her Play-doh. It was kind of difficult for her to shape the Play-doh, but we used it to get her to strengthen her arms by pulling things out of the Play-doh. One of the things that I put into it was one of her Polly Pockets. She was so funny. Morgan would pull Polly out, and then bang her back down into the Play-doh ~ the first time she did this, she called me and said, “Look, Mommy! I made footprints!” She did! I am so proud of her and how smart she was.

Date:

April 13, 2006

Today

Well, the past few days have been difficult, but today is much better. I did not really explain the significance of Morgan’s umbrellas yesterday. During the spring and summer, we (Zekie, Clayton, Morgan and I) would spend almost every day in our backyard. We have a table and big umbrella on our deck, that the boys liked to eat lunch at. Morgan liked to sit in her bouncy seat, with her feet in the baby pool when she ate her lunch. The big umbrella covered her ~ but not enough. So I bought a little lounge chair for her that had an umbrella attached to it ~ but she really liked the bouncy seat the best. Clayton took the lounge chair, and I found a big “golf” umbrella to put over Morgan and her bouncy seat. I had to tie the umbrella to our deck ~ because it would blow away every time a breeze came through, but Morgan LOVED it. She sat out on the deck for hours. Last summer I read Charlotte’s Web to her. She was so smart, and so attentive ~ and so demanding ~ every time I would stop to get something for Clayton or Zekie she would say, “Read to me, Mommy! Read to me!” I love her so much!

Date:

April 12, 2006

Today

I don’t know what is wrong with me right now ~ I am just going through a very difficult period. Today I worked on cleaning up our back yard ~ I found the “little” umbrellas that I used to keep Morgan out of the sun. I found her little pink Barbie ball ~ and I just cried, and cried. I know that when I am upset or sad everyone gets upset, and I am sorry for that. Sometimes I just need to have a breakdown. I just want to be with my sweet little Morgan ~ I miss her so very much...

Date:

April 11, 2006

Today

Last night before I went to sleep, I was thinking about Morgan and how happy she was here ~ with us. She was so funny, so smart, so talkative. But, when she was around new people, she was very different. She was quiet, shy ~ maybe even a little apprehensive. She, of course had a right to be ~ it seemed like every time she turned around there was a new doctor for her to see, a new machine to get use to. I really tried to limit her doctor visits ~ they were so hard on her ~ especially at CHKD after her hospitalization. Last April, we had to see the pulmonologist for a follow up after she was released from the hospital. Morgan did great the whole way there ~ she was talking, and singing in the car. As soon as we entered the waiting room, she completely stopped talking. Bill and I thought she was just nervous ~ little did we know she was planning her next move. The nurse called us in to get Morgan’s vitals. Morgan could not stand getting her blood pressure taken ~ they always told her, “We’re going to give your arm a little hug.” It didn’t fool her. As soon as the nurse started to put the cuff on her, she opened her mouth, and let all the spit just drain out of her mouth. That was why she had been so quiet, she was collecting spit to provide a diversion. It was a “trick” she had learned in the hospital ~ she knew that we would take care of the drool first. As soon as she did it, I knew that it was something she had done on purpose, and while I wasn’t exactly thrilled that my precious little girl was spitting, I was happy that she was finding ways to manipulate her environment. I always wanted her to have that independence.

Date:

April 10, 2006

Today

Today was better than yesterday ~ I’m so sorry. Sometimes, I just feel sorry for myself ~ not that it’s a bad thing. I would feel sorry for anybody else that was going through what I am. Anyway, today I was thinking about Morgan’s “Polly Pocket’s House of Style.” Clayton was at Sissy’s house one day, and the commercial for “Polly Pocket’s House of Style” came on. He said, “Sissy! We have to get that for Morgan!” He knew she loved Polly Pockets, and he knew this was a “NEW” must have item! So, for Morgan’s birthday, Sissy bought the “House of Style.” She kept it hidden in her living room until Mo-mo’s birthday. Of course, Clayton was over there one day, and in his quest to know exactly what was where in the house (this amazes me about children ~ how do they know where everything is???) he found the “House of Style!” Sissy talked to Clayton, and said this was a surprise for Morgan’s birthday, and he could not tell her about it. Well, when he came home, he did not mention it ~ and Sissy thought he would keep the secret ~ but, NO! The next time we saw the commercial, he turned to Morgan, and in his most excited voice, he said, “MORGAN! Sissy is going to give you that for your birthday!” Morgan was very happy to hear that ~ but, I don’t know if she was certain he knew what he was talking about. When she opened it on her birthday, she was thrilled!

Date:

April 09, 2006

Today

I still can’t believe that she’s gone. I just can’t ~ denial, probably... I expect to see her every morning, every night, every second of every day. Sometimes I wonder if I thought about her as much when she was here, as I do now ~ it is so hard to remember back then ~ it seems like it was a lifetime ago. No, I know (in my heart) that I thought about her, every bit as much as I do now ~ probably even more. I just miss her so much, it doesn’t get any easier ~ it just gets harder. I feel like I just can’t breathe sometimes ~ how could this happen? Why Morgan? She was just perfect ~ I really couldn’t have loved her anymore than I do even if she didn’t have SMA ~ she’s my best girl ~ and I just want to hold her again ~ I want her to know how much I love her, and need her.

Date:

April 08, 2006

Today

Today I was thinking about how Morgan just loved to watch (and sing) music videos! Of course, I did not let her watch MTV (that's too "mature" for me), but I let her watch the Yahoo videos. We first found out that she liked videos when we bought the Alan Jackson / Jimmy Buffett DVD, “It’s 5 o’clock Somewhere.” She loved to watch the “story” that went along with the music. Then, Zeke found Yahoo videos. Every night while I made dinner, Morgan, Clayton and sometimes Zeke (when he had finished his homework) would watch videos and sing along. I was amazed with how quickly she picked up songs ~ she must have inherited that music gene from her Daddy and Uncle Billy! I remember so many nights Daddy would walk into the kitchen, and they were just singing away to the music ~ Bill would get the biggest smile on his face ~ what a wonderful sound to come home to!

Date:

April 07, 2006

Today

This morning I was thinking about how much Morgan loved to have her toe nails painted ~ she did ~ she just loved for me to paint her toe nails! My mom ~ aka Sissy ~ found her some hot pink sparkly nail polish ~ it was called “Wet Shine Diamonds” ~ perfect for Morgan! One day I was looking for some new nail polish for Morgan, and I saw these tiny little stickers ~ for your nails! The ones that I picked up had butterflies on them. The only toe nail she had that was big enough for them was her big toe, so I put them on her big toes. She was so cute, she would ask to see her butterflies (“Mommy, I want to see my butterflies!”) if she was sitting in her high chair, or if she had socks on. I would lift her feet for her to see them, and she would get the biggest smile on her face! Or I would have to take her shoes (DAFO's) and socks off to see them ~ that may have just been a technique to get her shoes off. I found Christmas, snowflake, and Valentine’s stickers ~ it seems like we did a lot of toe nail painting in the winter (when we weren't outside all the time). But for the summer, she always wanted her butterflies.

Date:

April 06, 2006

Today

Today I was thinking about the day that we won the bid on our house. We had been looking for a house for about 14 months, and we just could not find the right one. We only looked at a few two story houses, and this was one of them. The day we made our offer, we also had Morgan’s six-month well baby check-up (although she was 7 months old ~ we were running a little behind). That morning I had mentioned to Dr. Mink that I was concerned that Morgan was just not picking up sitting up without support as quickly as I had thought she would (Zeke was walking at 8 months, and Clayton was walking at 7 months!!). Now, every time I go into the office, I always have a list of questions and concerns ~ I always have, even though I have had three children ~ you’d think that I would have retained some of it! Dr. Mink is (in fact, all of the pediatricians at TCA are) very patient with me. He said that if I was concerned he would refer her to Neurology. The first appointment was not until September (it was June), but I think that he must have known I would lose my mind (and drive him crazy) if I had to wait that long. They did manage to get us an appointment just two days later. Bill and I were worried ~ after some quick research that afternoon, we learned that most “floppy babies” did not walk. We had just won a bid on a two story house ~ we thought that our biggest concern would be Clayton or Morgan falling down the stairs... So, that night we starting planning modifications (elevators, ramps, etc.) ~ we just always wanted Morgan to be happy, and for everything to work for her.

Date:

April 05, 2006

Today

This morning as I walked out of Clayton’s preschool, I saw a little girl standing by the water fountain. I try not to avoid looking at little girls Morgan’s age, and then there are times when I try to avoid looking at little girls Morgan’s age ~ kinda strange, hmm? This little girl had her hair done in pony tails ~ like I sometimes did Morgan’s hair ~ and it was that same fine, strawberry blond hair like Morgan’s. I just wanted to touch her little pony tails ~ I didn’t, of course (I didn’t want to get arrested or anything!). I hurried out of the church to the van, and started the engine. The song that was playing on the radio was, “More Than Words” by Extreme. The first time I ever heard that song was at the NCS talent show in 1990. My brother sang and played it on his acoustic guitar ~ and it was beautiful. It was not until that moment that I realized what a talented musician he is. I fell in love with that song ~ and him playing it. I thought about “more than words,” ~ that’s what I have with Morgan. One line from the song is, “What would you say if I took those words away.” I think that the little signs I get from Morgan are her way of saying, “I love you” ~ I hope she knows how much I love her...

Date:

April 04, 2006

Today

Tonight I was brushing Clayton’s teeth, and I was thinking about Morgan’s teeth. I remember back in May 2003 (before I had ever heard of SMA). I was so worried that her second bottom tooth had not come in yet ~ she had the two on top, and one on the bottom. The second one finally did come in, but it was fused to the one next to it ~ which is why it was delayed. Our dentist told me that a lot of children had fused teeth, so it wasn’t really a big deal, although they might need to pull it when it was time for the tooth to come out. She had her first dental appointment in November. She hated having her teeth cleaned. She was just so upset and scared ~ even though I was right there. I remember her legs getting splotchy red marks because she was so upset. I am so glad she did not have a cavity. As soon as it was over though, she was fine, and even said that she had liked going to the dentist ~ she was such a little nut ~ and could always make me laugh!

Date:

April 03, 2006

Today

Tonight I am going to write about something that I am grateful for. I am thankful that I never had to wait outside an operating room while Morgan was inside. I am also grateful that Morgan never had to have a surgery ~ she would have hated being in the hospital. I already had fears of her spinal surgery she would need later. I would have been a basket case ~ and possibly even kicked out of the hospital asking questions every five minutes. Today while my mom has been in surgery I have been a wreck (and she has had this procedure done before), so I imagine it would only be worse if it were Morgan. Don’t get me wrong, though ~ I would have gladly gone through the surgeries with her than not.

Date:

April 02, 2006

Today

Tonight Clayton came up to me after his bath with “something” behind his back, and the biggest smile on his face. He said to me (trying very hard not to laugh), “Would you like a piece of peppermint candy, Mommy?” and then he pulled out the “peppermint candy” box from behind his back. I played along, and said, “Oh, yes, Clayton, I would LOVE a piece of peppermint candy!” I then pulled the handle, and a big black spider came out, and grabbed my hand! He laughed so hard, and said, “April Fools!” Morgan loved the “peppermint candy box.” Zeke bought it one weekend, and when he showed Morgan and Clayton (after the initial terror) they both thought it was the funniest thing. Morgan said, “We have to show Judy!” (Her physical therapist). When Judy came that week, (I had forgotten about the peppermint candy box) Morgan said to me, “Mommy, we need to give Judy some peppermint candy.” I laughed, because I couldn’t believe that she had remembered that she wanted to give one to Judy. I brought it over, and Judy knew there was something a bit “off” with this peppermint candy, but she said, “Oh, peppermint candy!” and pulled the handle, and out popped the spider ~ Morgan thought it was so funny, and laughed just like Clayton did tonight.

Date:

April 01, 2006

Today

Today I was thinking about Morgan’s sense of humor. Gosh ~ she was so funny! She knew so many knock-knock jokes! One of her favorite knock-knock jokes was the banana one ~ you know ~ “Knock-Knock!” “Who’s there?” “Banana!” “Banana who?” “Knock-Knock!” “Who’s there?” “Banana!” “Banana who?” “Knock-Knock!” “Who’s there?” “Banana!” “Banana who?” Well, Morgan would always say the next part a little bit different from the rest of the world, and Zeke thought it was the cutest thing, so he would try to get her to tell this joke all the time. She would finally say “Knock-Knock!” “Who’s there?” “Orange Juice!” “Orange Juice who?” “Orange Juice you glad I didn’t say banana!” I don’t know why, because I told her about a million times it was just “Orange” not “Orange Juice!” She would not change it ~ maybe because she knew how much Zekie liked it that way. Oh, she was so funny ~ I miss my baby so very much...

Date:

March 31, 2006

Today

Our good friend, and one of our biggest Morgan’s Buddies supporters, Bill Schmidt has been helping us gather items from local artists for the SMArgaritaville Auction. One of the artists that he has contacted is Mr. Samuel Grigsby, a local photographer. Mr. Grigsby has taken some beautiful photographs of landscapes and nature throughout the Tidewater area. Mr. Grigsby has donated a beautiful large framed photograph of a sunset with a small boat in the foreground. I spoke to him yesterday, and learned that he has health concerns of his own, but is eager to help the children with SMA. This afternoon, he called me to tell me that he woke up this morning feeling poorly. He walked to his kitchen window, and looked out over the water to see a beautiful sunrise. He instantly thought of Morgan, and how her attitude was always, “It’s a beautiful day!” He also thought about the photograph of the sunset that he had donated. He has decided to name that photograph, “Morgan’s Sunset.” His work is often on exhibit throughout the Tidewater area, and he believes that he can help spread the word about SMA. I thought that it was so nice that he wanted to name this beautiful photograph after Morgan, and I am so happy to know that she continues to touch people.

Date:

March 30, 2006

Today

Tonight I was looking for something, and I found a pair of Morgan’s socks. They were still in the package. I bought her socks to wear with her DAFO’s online at HealthyLegs.com. When Morgan first started wearing her DAFO’s (her "shoes") her feet would get so hot, and she would always want to take her shoes off. Suzanne told me about these socks ~ they are 100% cotton and do not have any seams so they made it easy for her to wear her shoes all day. It made the biggest difference. I always tried to have an extra pair just in case we lost her socks (or the dryer ate them). It’s kind of funny, but we actually did lose socks (and even the DAFO’s) from time to time. Morgan and I would always blame Clayton, but the time when I lost the DAFO’s ~ it was actually my fault! I usually took her shoes off downstairs, and then we would go up for a bath. One night, I took them off of her upstairs, and put them under her bed. The next day I spent hours looking for them!

Date:

March 29, 2006

Today

Today I was thinking about how much Morgan loved peanut butter. I would give her a spoonful of peanut butter with raisins or celery ~ because she really loved to “dip” her food into the peanut butter. She would eat the raisons, but she just sucked the peanut butter off the celery. She just would not eat celery ~ maybe the strings bothered her, but I know that she could bite through it. She had the strongest jaw muscle I have ever seen (another story). She also loved to dip her finger in the peanut butter ~ Bill would say, “MORGAN! You're not dipping your fingers into your food, are you?” Of course, he would make a big fuss, and she would get the most adorable little smile on her face, and stick her finger right into the peanut butter ~ she just loved to tease her Daddy. I think it may have been one of her favorite things to do.

Date:

March 28, 2006

Today

Today I was thinking about Morgan’s bright eyes. Her eyes were so expressive. She was always so excited to do anything new! I remember for Clayton’s third birthday, Sissy and Grand Daddy gave him a ride-on fire truck, and she wanted to ride it, too. I sat her up on the fire truck, but she did not want me to hold her or support her ~ she wanted to "do it herself!" Once I let go of her, her eyes just danced with so much excitement ~ they actually twinkled. Morgan was always so happy, and so proud of herself when she was able to do something that she wanted to do. It was wonderful to watch her grow, and develop her skills ~ I was and am still so proud of her!

Date:

March 27, 2006

Today

Now that I have finished the wall with all of Zekie, Clayton, and Morgan’s work on it ~ I have decided that I really need to paint the hallway. Every time I start a painting project, I somehow always manage to get Bill totally involved with it (meaning that he ends up doing most of the painting). This past October, I decided I wanted to paint our den. The children spent most of their time in the den ~ it is really a big play room ~ all their toys, books and games are in there. So, Bill and I started painting one Saturday afternoon. Of course, Clayton and Morgan wanted to be in there with us. Clayton helped Daddy lay out drop cloths, and tape the doors, windows, and molding. Morgan was pretty content just to tell us what we needed to do ~ for a little while. Then she wanted to help paint. I thought that she would be like Clayton ~ just go up and down once or twice with the brush, and then want to do something else. But ~ NO! Not Morgan ~ she sat there painting up and down, and up and down for about thirty minutes. I sat behind her, and helped support her head so that she could look down to get paint on her brush, then bring her head back up to paint the wall. The den walls look great, and I really like the color ~ it’s a good thing, too, because I don’t think I ever want that wall ~ Morgan’s work ~ painted over.

Date:

March 26, 2006

Today

Well, today I finally did it ~ I worked on framing Morgan's artwork. It was very difficult going through all of her work ~ last week by myself. Today Zeke, Clayton, and I picked out the things to frame. It was nice to do it with them, and not sad like it was when I went through her work alone. I found a pumpkin that she made in October. It made me smile ~ she colored the stem green ~ the ENTIRE stem green ~ she colored and colored and colored that stem! She was so funny ~ I said, "Are you done yet, Mo-mo?" and she had said, "Not quite." Then she colored it some more, and I said, "Is it ready?" and she said, "I have to get one more spot." It was just a stem! She was very detailed with her coloring ~ not that she colored a lot, but the things that she colored were very specific. She colored a gingerbread man (on December 3) and he only has two lines of brown on his body, but hie entire buttons are colored green and red. She wanted to color "the buttons," but she didn't really care about coloring the rest of him ~ what a funny girl!

Date:

March 25, 2006

Today

Thank you to everyone who bought the butterfly night lights! We sold a total of 120! That is $540.00 to help bring SMA Support families to the FightSMA annual meeting! The butterflies were packed, and sent out today. Thank you all for your support!

Date:

March 24, 2006

Today

Last night I was pretty groggy, so I didn’t post an entry. I was thinking about it though. A year ago (from last night), we came home from our (first) stay at the hospital. It seemed kind of strange that on the same day ~ I came home from the hospital, again. We were so happy to be coming home ~ all of us ~ but Morgan most of all. I remember she kept saying to me the last few days in the hospital, “Let’s go home now.” I remember thinking how wonderful it was that she had this idea that was all her own ~ I was so proud of her for it, for having her own ideas. I was still nervous about driving with her in our van, so I requested ambulance transport home. They put Morgan on a stretcher and into the back of the ambulance. We drove from CHKD to Virginia Beach, and when we passed Bayside High School, Morgan (who was laying down looking at the sky) said, “We are getting close to our house.” I figured that she was just guessing, because we had been driving for about 20 minutes. We turned into our neighborhood, and she said, “We’re almost home now.” I remember looking up to see what she was looking at, and there were trees above. I thought to myself ~ could she really know the trees in our neighborhood? I think she did, because after a few more blocks, she said, “We’re almost home!” She was getting very excited. I remember bringing her in, and laying her down on the sofa in our den. It was the best feeling in the world to be home with my baby girl.

Date:

March 22, 2006

Today

Today, my mom and I went to one of our favorite jewelry stores, asking for donations for SMArgaritaville. The jewelry is just gorgeous! I thought about Morgan, and how much she would have loved to look around the store at all the jewelry ~ she just loved JEWELRY! I always thought it was so funny, because I really don’t wear a lot of jewelry ~ but Morgan would have! I remembered the Fall Fair this past year at NCS. The Fair was in October, and Morgan still had a little bit of a cold, so I just took Zeke and Clayton. After three hours of going non-stop, Clayton was ready to go home. Zeke asked me if he could stay for a while, and have dad pick him up. I took Clayton home, and Bill went back for Zeke. Zeke had bought a necklace for Morgan ~ a dolphin charm with some dark green beads around it. It was very pretty, and $10.00 of his own money. It was so sweet of him to think of her, but he felt bad that she had not been able to come to the Fair, and he wanted to make her happy. Well, he ended up placing the necklace down somewhere, and he lost it. He looked for it for about half an hour, and then went and bought her another one. He was just not going to come home without something special for her ~ and he knew that she would love the necklace ~ and she did! I’m glad that I have so many happy memories of her.

Date:

March 21, 2006

Today

Today I went into our doctors lab for a blood draw (I can’t believe this ~ but I am having outpatient surgery on Thursday). Well, she stuck me with a very small butterfly needle, and my vein rolled away ~ it reminded me of Mo-mo because her veins always rolled ~ they were so small. When we were at CHKD in June, they had three people in her room trying to get a vein. It is a strange thing to remember about your child, but it was part of our life with Morgan. I don’t know that Clayton or even Zeke has had more than a finger prick ~ if they have, it was not traumatic for them (or me). I am thankful that she doesn’t have to have any blood draws.

Date:

March 20, 2006

Today

Well, the butterfly fund raiser is almost over ~ we have sold 115 butterflies! Wow! Now, I can really start focusing on SMArgaritaville! If you have any ideas about auction items, please feel free to send me your ideas. A partial auction item list can be seen: http://members.cox.net/fightsma/pages/SMArgarittaville2006.htm I have been very depressed for the past few days, and tonight I feel like I really need to write something positive ~ instead of how depressed I am. So here it goes: Morgan loved to sit on the steps ~ she just loved it. I have no idea why, and I really don’t know where she even got the idea in her head to sit on the stairs (maybe from a picture of Erinne when she was little sitting on the steps), but she did. Clayton is so funny ~ after dinner he sits on the steps in our kitchen ~ he always sits on “his step” ~ the first step, and he always remembers that the second step is Morgan’s. I am so glad that he remembers so much about her.

Date:

March 19, 2006

Today

Well, today was a hard day. I have been wanting to put up some of Morgan’s artwork on the walls ~ I had put away most of the work she did in the fall, because I figured there would be so much more throughout this year. So, I went into the attic, and I pulled out the box from the beginning of the year. I saw all the paintings, drawings, the things she cut out, the things she glued ~ even her hand prints in paint. I put Clayton’s work back, and kept out her stuff. I crawled back into the attic to put back the other boxes I had taken out, and I just sobbed. This is just so hard ~ but, I can’t not look at her things, or pretend like she did not exist ~ I felt guilty that I had framed some of the boys work, but not hers. I want to celebrate her life, and remember her ~ I just wish that I could do it with some grace.

Date:

March 18, 2006

Today

Last night we watched “The Pacifier.” Morgan really liked that movie. There is a part in the movie where Vin Diesel says to the children, “Do you copy?” and Lula (whose real name is Morgan) starts to copy him. Zeke would always play the Vin Diesel part and Morgan would play Lula’s part. Tonight, he reminded me that I should write about that. He also said that I should write about the part where after the "Panda Dance," Peter says, “AGAIN!” and he sounds just like Morgan did. Zeke does not usually give me suggestions for what I should write about. I think that there are things that he wants to remember to, and I am more than happy to write about them.

Date:

March 17, 2006

Today

Today I was thinking about how fast, and how much life changes. Four years ago, I was about 6 weeks pregnant with Morgan (but I didn’t know it yet). Three years ago, I was so happy ~ everything was just perfect in my life. Two years ago, Morgan had been diagnosed with SMA, but everything was going great ~ she had never been sick, and she was so happy. One year ago, (St. Patrick’s Day, 2005) Bill and I had just had a conversation with Dr. J in the PICU at CHKD. She told us that Morgan was not any worse than she was when we came in (on 3/12/05), but she wasn’t any better either ~ so, essentially she was worse off. We decided to transfer her to the University of Medicine and Dentistry in New Jersey so that they could intube Morgan, and extube her according to Dr. Bach’s protocol. We had to wait three days before we could be transferred though. Friday morning, Mabel ~ one of the awesome respiratory therapists at CHKD came in and wanted to try Mucomist to break up the congestion in Morgans lungs. It worked ~ and worked great. By Friday night she was off her bi-pap for an hour and a half, and on Saturday she was off four hours at a time. Sunday she was transferred to the Step Down unit, and off the bi-pap completely, while she was awake. It was AMAZING!

Date:

March 16, 2006

Today

Morgan’s seat at our table was in between Zeke and me. Now, dinner is different ~ it is so quiet ~ Morgan always talked through dinner. After the blessing, she would always ask Daddy, “So...how was your day?” she sounded so grown up. Then, she would ask me, “Mommy, what are you eating?” (she was obsessed with what I was eating) I would tell her, and ask her if she wanted a bite. She was so good about trying new foods. When Morgan learned the “dropsie game,” she had the best time dropping food next to Zeke. He always picked it up for her, although he did make a big fuss about it. She thought it was so funny to see him get worked up. She and Clayton were just like a comedy routine. He would do something to get our attention ~ he is famous for taking the food he doesn’t want to eat off his plate, and putting it on someone else’s ~ why he can not just leave it on his plate is beyond me, but that is what he does. While we would all look over at him, Morgan would do something like put her hands in her food, and start finger painting. Clayton would start to laugh, then we knew she was up to something. Every night, dinner was like that ~ it lasted an hour (or more), but we all had the best time. I hope it won’t always be this quiet, although I know that it will always be different.

Date:

March 15, 2006

Today

Butterflies! Butterflies! I’m sure that everyone already knows about our Butterfly Nightlight Fundraiser, and I would like to thank everyone who has ordered one (or more)! This morning, I worked on printing the packing slips for the butterfly shipments (which are going out next week ~ Yeah!). Then, this afternoon I was in our living room talking on the phone with someone about SMArgaritaville, I looked down at our oriental rug, and I noticed that there are two butterfly designs woven into the rug. I have looked at that rug for three years, vacuumed it hundreds of times, laid Morgan down on it, opened Christmas presents on it, and never noticed it until today. I don’t even think that Sissy has noticed it, and she helped me pick it out. I really like and need signs from Morgan that everything is okay ~ I may be grasping, but I just don’t know what is on the other side. I have always believed in Heaven, but when you have a baby there, you just want to know more about it. Morgan always did everything she could to make my life better, and I would like to think that she still is.

Date:

March 14, 2006

Today

Tonight, Zeke was talking about Morgan. He thinks about her a lot, but I think that sometimes it is just difficult for him to talk about her. He reminded me of how Morgan always wanted people to talk to her (or read to her) when she was falling to sleep. From the day she was born, she could not go to sleep in a quiet house. As a newborn, if the boys were running around, making lots of noise she was fast asleep. The second the house did get quiet, she was wide awake. I guess that happens by the time the third one comes around. Over this past summer, Zeke wanted to be the one to get her to sleep at nap time. It was so funny, he would read book after book to her, and she was still wide awake. After a few days, Zeke decided to read a book that she did not want to hear ~ she must have thought it was boring, because by the third page she was always asleep. He was so proud of himself ~ for being the one with the “secret weapon” to get her to go to sleep. She did catch onto this pretty quickly, and when he picked up that book, she would say, “No! No! Zekie! Not that book! Let’s read something else.” Sometimes she would pout, as he started to read, and sometimes she would turn her head away from him, but she always feel asleep before the end of that book. They have had such a special relationship, and I am thankful that I was able to watch them interact and develop the bond they share.

Date:

March 13, 2006

Today

Well, it seems like we are all going through a tough time here. Maybe it was going on that vacation that we planned with Morgan ~ maybe it is just something that is normal after three months. The initial shock has worn off, and it the finality of it all has started to set in. Limited doses ~ that is all I can handle ~ limited doses. Slowly accepting. If I think about it too long, or too hard it is just way too overwhelming for me. Carol, and everyone, thank you so much for your support, and prayers for our peace. I know that they are helping. Now, I will share my memory of Morgan that popped into my head today. Today was just a beautiful day in Virginia Beach. Clayton and I went out today, and bought a few things for the yard. I saw those iridescent hanging ornaments, so I bought a couple. I looked all around the front porch, and the back deck for a place to hang them, but I just could not find a spot. Finally I decided to hang them from the deck rail. They look great, and I stared at them thinking, “Morgan would have loved these!” I wish I had thought of getting those last year ~ And where I placed them, they would have hung right at her eye level when she would sit out on the deck. She loved to sit in her lounge chair, her bouncy seat, her yoga seat ~ any chair ~ she just loved to be outside!

Date:

March 12, 2006

Today

Tonight, Bill was reading a story to Clayton after his bath. It was one that we have not read since October. The book was, “No More Chores!” It was part of a set of ten books I bought for Clayton and Morgan last May. It was one of the preschool reader books. She just loved it (it really is a cute book) and within two weeks she had the entire book memorized. I know that most children do this. All of my children, loved to “read” books (that they had memorized). Last June when we took Morgan to CHKD for her heart rate dropping, I forgot to pack any books (or toys) ~ but, that was okay with her, she started reciting the “No More Chores!” book. I knew that she knew the entire book, but I really thought that she needed the pictures to jog her memory ~ apparently not! She was just amazing! She remembered the whole book (even parts that I had forgotten). Bill and I were just so impressed with her ~ like always. It was always hard to miss that she could not walk, when she had so many other accomplishments. She always made things so easy for us. She is our baby doll.

Date:

March 12, 2006

Today

Saturday ~ March 11th ~ Today we spent 14 + hours driving back from Florida. For all that driving, it really was not a bad trip ~ thank goodness for DVD players! After about 7 hours, Clayton decided that the car seat was not comfortable for him anymore, and that he needed a “rest” (right!). He is old enough, and big enough to not use a car seat anymore, but I like him contained, and he sits up higher, and can see more from his booster seat. I went to the very back seat of the van with him, and he was able to lay down (buckled in, of course) between my legs, and watch a movie. I laid there with him, rubbing his hair, and thinking of how Morgan always liked to lay like that when we were watching movies in our den. I thought about how if she had been with us, we would have used the EZ-on vests (a seatbelt system for people laying down) for her and Clayton to lay down in the back. She probably would have wanted me to read to her, or just talk ~ talk about our trip, talk about the traffic, or talk about whatever popped into her mind. I also thought about our trip coming back from Nags Head last year ~ about almost losing her then, and about how much we have all been through in the past year. Oh my gosh ~ this is just so hard. It hurts to think about her, it hurts to not think about her, everything just hurts. I’m tired of trying to be positive ~ this is awful! There is nothing positive about this. I would have gladly gone instead of her. I know that I would still be without her, right now, but she would have had her Daddy, her brothers, her grandparents and, her aunts and uncles who love her here. She wouldn’t be alone, and that would make me feel better. Why did this have to happen? Why? I am so lost. I want to hear her sweet voice. I want to hold her. I just want my baby back.

Date:

March 10, 2006

Today

Today I was thinking about how much Morgan would have loved Discovery Cove. We went there today. Last fall when we were planning this trip, Clayton, Morgan and I got online and looked at their web site. Of course, they both wanted to swim with the dolphin, but they were too young. We swam/floated through the Lazy River, and I know that she would have liked that. The water was warm ~ like she liked it, and there was a little bit of a current that helped you float along the river. I can picture her face ~ her hair all wet, those big excited eyes, and her beautiful smile ~ so vibrant!

Date:

March 09, 2006

Today

Today I was thinking about how accessible everything is now (now that I notice) for people in wheelchairs. It is really wonderful. I saw people going up to the simulated space shuttle in wheelchairs, and I remembered Morgan driving her chair. She was so good at it (once we had all the right equipment for her). She could turn, and avoid parked cars on the street, from the first time she really drove on her own. I was just amazed that she had so much control, especially for someone who had not really moved on her own before. I know that she would have done great driving up to see the space shuttle, and I imagine that she would have driven away from the alligators (that Clayton ran toward). Bill and I may have been going in opposite directions all day ~ of course, Zeke would have followed Morgan and me ~ but we would have loved every second of it!

Date:

March 09, 2006

Today

Wednesday ~ March 8th ~ Today I was thinking about how much Morgan loved for me to read to her. From the time she was born, she always loved to hear me read. One summer day when Morgan was about 20 months old, we were swinging on our swing in the back yard, and I was reading a John Grisham book. She asked me what I was reading, and I told her that it was a grown up book, and that she would not like it. She said, “Read to me, Mommy!” So, I started to read to her. I stopped after a paragraph, and asked her if she wanted me to get something else to read, she said, “No. Read to me!” I must have read to her for an hour (or more) from John Grisham, and she just loved it. Zeke was so funny. He said, “You are not reading John Grisham to a baby, are you?” I said, “Well, she wanted me to read it to her.” and Morgan said, “Read to me, Mommy!” I just love the way that she would say, “Read to me!” What a doll!

Date:

March 07, 2006

Today

Today I was thinking about a day last summer when Morgan wanted to wear her “body jewelry.” She just has always loved diamonds, and sparkles, and I found a “body jewelry” sticker with hot pink, light pink, and white “jewels.” I asked her where she wanted to wear it, and she said on her leg. I started to put it on her left leg, but she said she wanted it on her right leg, and then pointed to the exact location ~ her thigh. I think that she just wanted to be able to see it. I don’t think that she would have liked temporary tattoos though. I think the only reason she was able to tolerate the body jewelry (on her sensitive skin) was because it was JEWELRY! What a funny girl!

Date:

March 06, 2006

Today

Today I was thinking about a day in the Spring of 2004, when Morgan was about 18 months old. It was one of those beautiful spring mornings, before Zeke went to school. He found a lady bug on the front porch, and brought it in for Morgan to look at and play with. She was sitting up on our white over stuffed chair, wearing her hot pink (there is that color, again) tank top onesie with little strawberries on it. SHe let that lady bug, crawl all over her hands and fingers, but I don't think that she liked it that much. She had this look on face her face like she had just bit a lemon, but she was very intrigued by it. In the SMA community, ladybugs and butterflies are thought of as visiting "angels." Once Morgan and I were settled in the van for our trip (last March) from Nags Head to CHKD, Morgan said (out of the blue) to me, "I'm nervous." I said "Morgan, what are you nervous about?" She said, "I'm afraid of lady bugs." I never quite figured that one out. I told Suzanne about it, and she said that Erinne was afraid of butterflies ~ although she has a reason to be afraid of butterflies. One (a big one) landed on her nose once, and she could not get it off ~ can you imagine how traumatic that would be? Today I also remembered that I had taken a picture of Morgan with the lady bug, and Zeke was playing with some photo software, and he cropped, chopped and pasted that lady bug into her teeth. Morgan and I thought it was so gross, but still funny (although we never told him). Here is the original picture of Morgan with the lady bug ~ it is on the bottom left side. http://www.our-sma-angels.com/morgan/spring04.htm

Date:

March 05, 2006

Today

Today I was thinking about Morgan when she was about 8 months old ~ in the swimming pool at Uncle Billy's and Aunt Debbie's. We had a round baby float that she liked, but she really did not like the sun in her eyes, or on her face (I think she got that from my grandmother, who has beautiful skin that has never been touched by the sun). Aunt Debbie found a float that had a canopy on it, and Uncle Billy was in charge of putting it together for Morgan. She loved it ~ she could be in the water, kicking her legs, and still be covered. I have seen a lot of babies here in Orlando ~ I miss here so much.

Date:

March 04, 2006

Today

Today I heard a song on the radio that reminded me of something funny that Morgan did. Morgan usually did her morning workout (the stretches we did to keep her flexible) to the radio ~ listening to our favorite station 92.9 The Wave. One day, after Morgan had finished her workout, she was sitting up in her back jack (a yoga chair) with her table in front of her, and the song, "Twist and Shout" came on. I was walking into the kitchen, and Morgan called me, "Mommy! Look, I’m dancing!" and I turned to look at her and she was to "Shake it up baby, now!". She was wiggling her whole body, moving her arms around, her head side to side ~ I was so excited that she had found a way to dance. After that, she would dance in her high chair, in her car seat, anywhere, anytime there was a song she liked on. I had started thinking that there should be a "chair dancing" video for children in chairs ~ she just had the best time doing it!

Date:

March 03, 2006

Today

Today I was going through the suitcase. I guess it was about time, since we are leaving in just a few hours. I had completely forgotten that I had started packing for our trip to Detroit. So, I opened the suitcase, and there were all of Morgan’s travel size toiletries (her lotion, soap, toothbrush, toothpaste and shampoo). The worst part was the diapers ~ I had twelve diapers packed. I saw them, and thought these diapers should have been worn by Morgan. They should be in the trash by now. But they aren’t! They are here ~ brand new. I was so mad at the diapers ~ what else could I be mad at? ~ I took them upstairs to Morgan’s room and just slammed them down on her bookcase ~ 3 at a time. Diapers really make a loud noise when you slam them down, so it was pretty gratifying for me. I felt much better after my little meltdown, so I once again decided to try to tackle that packing list. I found that I don’t actually have to delete Morgan’s column. She was on the end (because the list is in chronological age order) ~ so all I had to do was change my print settings to not print her column. Some psychologists might think that I am in denial. I am not ~ I know that she is gone ~ I just don’t want to completely accept it yet. That is a decision that I have made I think just for some sort of self preservation. If I completely took everything in that happened on December 3rd and 4th ~ I think that it would be too much for my mind to handle. So, I take it in piece by piece. I hope that I am doing the right things.

Date:

March 02, 2006

Today

Last year when we were in Nags Head, I started our laptop, and it crashed ~ not just crashed ~ “blue screen of death” crashed. It never even powered up after that day. Bill and I kind of just forgot about it ~ that was the week that Morgan was so sick, and ended up being transported from Elizabeth City, NC, to the Pediatric Intensive Care Unit (PICU) at CHKD in Norfolk. In November, I was looking for Morgan’s baby pictures on the back-up disk I had made, but I was still missing from October 2003 to February 2004. I took a lot of pictures of her during that time ~ her first birthday, her baptism ~ all gone. I must not have backed them up. Well, yesterday, my wonderful and very smart husband bought a new laptop. Did I happen to mention how smart my husband is?? He bought the same make and model of the one I blew up. Last night he opened the new computer, pulled out the hard drive, and replaced it with the hard drive from the old computer ~ AND guess what!?! I have all of her baby pictures back! I am so thankful ~ they are so precious to me. This morning I spent about two hours looking through her pictures. In some of the pictures, she is so alive and vibrant I almost felt like I can just pick her up, and give her a big hug. Thank you, Bill!

Date:

March 01, 2006

Today

Today I was thinking about something, and in my head I was thinking, “I’m a little nervous.” As soon as I thought that, I remembered something that Morgan would sometimes say, “Well, actually I’m nervous.” I repeated that to myself, and then tried to remember what I had been nervous about, but I had totally forgotten it. It was so cute to hear Morgan say these big words, like “actually,” and “nervous.” I would ask her what she was nervous about it, and she usually changed the subject, so I figured that she just knew the words, and liked to say them, because they were big words. Of course, today I had to completely analyze what she had said and why she had said it ~ was her heart rate dropping when she said she was nervous? did she have a premonition of what was going to come? was she suddenly worried that she couldn’t walk? maybe she was having a hard time breathing? did I miss some signs? I think that it is probably normal to analyze and scrutinize everything that ever happened ~ maybe, it was just as simple as I thought when she was here: She just liked to say big words. I hope so...

Date:

February 28, 2006

Today

Morgan was diagnosed with SMA when she was almost 8 months old. We took her to see Dr. Bach, in New Jersey two weeks later. Dr. Bach is one of the best doctors treating children with SMA. She could not crawl, but she was sitting pretty well on her own. One of the things that he recommended was AFO’s (Ankle Foot Orthoses) for Morgan. Our pediatric office ~ which is AWESOME ~ immediately wrote the prescription, and she had an appointment within days. We took her to have her feet and calves cast, so they could make the AFO’s. None of my children had ever been cast before, so it was a pretty emotional event for me to watch my BABY get a cast on each of her legs. I thought I was going to have heart failure when they went to cut them off. To cut her cast off they used something that looked like a utility knife, with a piece of rubber between her leg and the knife. I kept asking, “Are you sure that is not going to cut through to her leg?” I even stopped him at one point when I was convinced (because Morgan was fussing ~ which was probably because I was so upset) that he had cut her leg ~ of course, he hadn’t. Now I know that it is impossible to cut through the material they cut against. They proved that to me the next time she had to be cast ~ I think they just didn't want me screaming, “Stop!” in the middle of it. A few weeks later, her AFO’s were ready. I took Morgan down to get her new “shoes” or “boots.” I was so excited that she was getting something to help her! It was her first piece of “medical equipment.” They put them on her, checked to make sure she did not have any pressure spots, or redness, and we were on our way home. Within 10 minutes, Morgan had those shoes off ~ I couldn’t believe it ~ here I had this baby that couldn't crawl or move, but she could get these boots off her feet. We went back a few days later to have them adjusted. They added extra padding, notches, velcro strips, and then they tried to pull them off of her. They could not get them off her without undoing the straps, so we figured these would work. She made it all the way home with the AFO’s on, but within a week, she had learned how to wiggle out of them, once again. I continued to put them on her each day, just so that she would get them off... I really liked the fact that she could do that ~ it gave her independence, and in the back of my mind ~ I thought this is probably really good exercise for her ~ moving and wiggling her little legs and feet. I showed Judy (Morgan’s Physical Therapist from the beginning) how Morgan could wiggle out of her AFO’s, and Judy agreed that it was probably good for her. This was the first of many “unconventional” physical therapies Morgan and I found together.

Date:

February 27, 2006

Today

I am a “planner.” I like to have my exact plans outlined, I'm just not real spontaneous ~ I’ve always been that way, and with Morgan I really perfected my planning skills. We have been planning a trip to Orlando next week since October. I found this wonderful condo that has handicap accessible fish and duck feeding ramps ~ I thought that Morgan would just love it. I also requested a handicap accessible unit, so that she could drive her chair around in and outside our condo. I bought her a few spring outfits, bathing suits and cover-ups from CWD kids. The outfits arrived two days before her funeral. So, they are sitting at the bottom of our hall closet, and I suspect they will stay there a little while longer. Anyway, I have delayed and postponed making my packing list. I have a column for each of us, with the days of the week listed, and what clothes, and supplies we will need ~ when we are packing up to return home, I have the list of items we brought, so that I can make sure we take it home. I learned to do this after I left ALL of Zeke’s clothes in Nags Head one year. It has worked really well for us, so I just copy the spreadsheet and make any necessary changes. Today I opened the spreadsheet, and I realized I was going to have to DELETE Morgan’s column ~ delete??? that is just so permanent, and I don’t think that I am emotionally ready for a “delete.” I don’t want to remove the Cough Machine, Pulse Ox, DAFO's, TLSO, Blanket, Pillow's, Baby Doll, Polly Pockets, Bi-Pap, and her Leg Immoblizers. So, I just closed the spreadsheet ~ I decided that I can’t do it today ~ maybe tomorrow, maybe not ~ if we forget to bring something, or if we leave all of our clothes down there, it really isn’t a big deal, everything can be replaced ~ but for me, for now I can’t make this list without Morgan included.

Date:

February 26, 2006

Today

This is not a memory, but it is truly amazing. This afternoon, Zeke was going upstairs to his room, and as he reached the top step, he screamed, “Mom!” I was not concerned or worried, because most of the time when he wants to say something to me he waits until he is upstairs (or I am on the phone). Then, he yelled, “You have to see this!” That was out of the ordinary, so I ran up to the top of the stairs, and saw what he had called me about. There was a rainbow ~ created from the sunlight passing through a window ~ and it was huge! It was about two feet high, and three feet wide, and the colors were so vivid and big. I looked around to see where it was coming from ~ Zeke and Clayton’s rooms are about three feet away from the top of the stairs, and our room and Morgan’s room are at the other end of the hall ~ maybe 15 or 20 feet away. The light was coming through one of our bedroom windows ~ it was the window that Morgan’s crib, and then her bed were under in our room. I was amazed, not so much at the rainbow, but at the fact that I had just written to Morgan about rainbows the night before. When I wrote to Morgan last night, it was the first time that I have ever thought to ask her to send me a sign, but I didn’t. I didn’t want to put any kind of pressure on her, and I was afraid that if I asked, I might not get one ~ and quite honestly, I like believing that she is sending us messages. I know that I have received a lot of signs from Morgan ~ but I am one of those people that needs constant reassurance ~ it may be a form of Attention Deficit, I’m not sure, but I do seem to need a lot of it. Daily signs would be nice ~ as nice as I can hope for right now.

Date:

February 25, 2006

Today

Saturdays are just not the same anymore ~ they are just a reminder of what happened on a Saturday ~ 12 weeks ago! I can’t believe it ~ 12 WEEKS! I try to stay busy, but I am always drawn to the events of that Saturday. This afternoon, I took Clayton and Zeke to the grocery store, and we drove by Bayside Hospital ~ it was 4:45pm ~ I automatically thought 12 weeks ago at that exact same moment, my world was just beginning to fall apart. I really thought that Morgan would be okay. I thought she would pull through ~ like she did on our way back from Nags Head. She was breathing against the ventilator, and they had to sedate her to get her to stop trying to breathe on her own and rest. Her eyes were opening and closing to the sound of my voice, and I swear that I heard her say, “Hi” when I was talking to her. I miss her just as much today, maybe, no, definitely more. She is farther away from me. Last night, I couldn’t sleep. I felt like I was forgetting things about her ~ I remembered how her skin felt, the way her toe nails grew, the way her nose turned up, the way she smells, so I wasn’t forgetting ~ I am just getting farther away. Sometimes it is hard for me to think about her ~ I guess that is why I try to fill my life with distractions ~ it feels like I will just be swallowed by the pain, the hurt, the unfairness of it all. I never complained about taking care of Morgan ~ I loved doing it ~ I love being her mommy. I miss my girl, my Morgan girl. It reminds me of that quote, “ I never wanted memories, I only wanted you.” It’s true, all I ever wanted was her.

Date:

February 24, 2006

Today

Please check out our Butterfly fund raiser to help SMA Support families come to the FightSMA annual meeting in April http://www.our-sma-angels.com/morgan/butterfly.htm

Date:

February 24, 2006

Today

Today I was thinking about Morgan’s first Occupational Therapy appointment with Steve. He (like April) was great. He was the Occupational Therapist that came out in July of 2004 to evaluate Morgan for OT. I think that he had figured her out that first day, because when he came back for her first visit, he brought her jewelry to play with. It was great! Big, colorful, plastic jewelry ~ she loved it! He helped her put her necklace on, but she wanted to put the earrings on herself. They were hot pink (of course) circle shaped earrings. And my little girl that would rarely lift her hand up to her head, just whipped that hand of hers right up to her ear and popped that earring on. Same thing with the other side, although it was the left hand, so it took her just a little bit longer. She was so proud of herself, and I was so proud of her, too. I had no idea that my little girl (only 21 months old) even knew what earrings were ~ but she did. She loved her earrings, her bracelets, her necklaces ~ She’s such a girly girl!

Date:

February 23, 2006

Today

Today I ran across six soft foam kick boards (the kind you use in the pool) that I had bought for Morgan. The first one I bought, I found worked perfectly to give her a little bit more back support. Before long, I was buying these foam kick board everywhere I could find them, because they worked so well for her. I would cut them, shape them, glue them together, cover them with fabric, and use them every where that Morgan might need a little extra support. She had two that we used with her stander (we used them like wedges), four that we used with her desk, one for her tray on the highchair, and another that she used when she would put her head face down on the ground. Each one was a different size, and they were perfect for her. I loved the way that she could lay on the ground, and still keep her head up, so she could see what she was playing with ~ usually a tiny little fuzzy that our carpet seems to collect immediately after vacuuming. She was so adorable using her delicate pointer finger to move the fuzzy around. She is such a doll!

Date:

February 23, 2006

Today

February 22, 2006 ~ I am working on a project with FightSMA, that will be unveiled next week (sorry for that teaser). Anyway, I have been trying to come up with some ideas for this project, and today I started thinking about Morgan’s “boots” (I promise, this will make a lot more sense next week). They weren’t really “boots” or “shoes,” like she referred to them as. They were her Dynamic Ankle Foot Orthoses or DAFO’s ~ pronounced daf-o’s, which kept her Achilles tendon from shortening (or tightening), and her feet from dropping. The first pair of DAFO’s Morgan had, she picked out everything on them herself, and she was only 20 months old! She picked out the lavender velcro straps, the dark pink padding on the inside, and a pastel heart ribbon/strap that went over the velcro. There is a picture of them in the top right corner of this page http://www.our-sma-angels.com/morgan/fall04.htm ~ you can’t really see the hearts, but she knew they were there. I am so glad that Cascade Designs (the company that makes DAFO’s) has so many options for children with disabilities. Disability or not they are still children ~ boys and girls ~ that like boy or girl things. In November, we ordered Morgan her next pair, and she wanted the exact same ones that she had before ~ lavender, pink, and hearts! What a little girly girl!

Date:

February 21, 2006

Today

Zeke and I have started doing the SuDoKu puzzles in the newspaper together at night. It is somewhat frustrating for me, but he is AWESOME at it. For the past three Tuesdays, I have noticed the “Ways to Grow!” column by CHKD under the puzzle. The first two that I saw were written by doctors that had attended Morgan when she was hospitalized there. First, there was Dr. Johnston, the PICU doctor that was there with us in March, and again this past December. She is just a wonderful doctor. I remember before Morgan was hospitalized in March, I was just afraid (scared to death ~ more like it) to take her to the hospital. I had heard that children with SMA are immediately trached when they are hospitalized. Not true. Dr. Johnston was wonderful, listened to all our concerns, and explained everything that was going on with Morgan at great length. She was very patient with our never ending questions, and we learned so much more about how to care for Morgan from her. The next doctor was the cardiologist that Morgan saw in June. He did several cardiac tests on her, which came back as normal. I think that he may have suspected some type of autonomic dysfunction (problems with her nerve system). So tonight when I looked at the column, I almost expected to see another one of her doctors, but it wasn’t. I am glad that it wasn’t ~ I am happy that she did not know every single doctor there, she was here at home with us where she wanted to be most of her life. She did not like being in the hospital, she wanted to be home with her brothers, and parents, and I am so happy that she was.

Date:

February 20, 2006

Today

Slowly, Morgan’s things are moving out of our room. Her machines were the first to go. They weren’t really the things that defined Morgan, so I did not having a problem letting go of them, at all. Last week, Bill moved the table (that we placed her machines on) downstairs. We still have her crib in our room, though. Today I cleaned our room, and I just don’t want to move it back into her room, put it away in the attic, or give it away. I just can’t ~ not right now anyway. I vacuumed under the crib today, and apparently it sucked up the top to a saline bullet (these are just little one-time use capsules filled with saline solution, that loosen up thick secretions ~ like Morgan had in October). I heard it rattle around in the canister, and when I looked I saw it. It reminded me that two years ago for Christmas (the Christmas after Morgan was diagnosed), Bill and I gave each other the vacuum. It was the top of the line vacuum with Hepa filter. We wanted to do everything to help Morgan breathe easier, and Bill researched all the vacuums for months before we bought this one. He bought it from (his FAVORITE store) Costco, and while he was there he also found the Honeywell Air Purifier that he had his eye on. He gave that to Morgan for Christmas. It was so funny ~ she was only about 14 months old, and she just looked at it with a very confused look on her little face. Bill, of course, was just thrilled that he had found the perfect gift. It was perfect ~ he is such a good daddy!

Date:

February 19, 2006

Today

One year ago today, I came up with this wonderful idea of making casseroles, so that I wouldn’t have to worry about making dinner during the week. I made 20 (or more) casseroles that day. Morgan helped me, but by the ninth casserole, she was over it. She liked to make fun food ~ like cookies, pudding, or smoothies. She decided she would just go ahead and play with her play-doh, instead. She still wanted to be with me in the kitchen, just doing her own thing. The casserole idea was okay, but almost everything ended up being a little bit watery after we froze it and then microwaved it. It did give me more time to focus on Zeke, Clayton and Morgan during the week, and that worked out very well. I remember the date, because the labels that I printed had the date on them ~ they were also a constant reminder of the date that our friend Baby Jacob ( http://www.caringbridge.org/canada/babyjacob/ ) flew to Heaven. Jacob had been through so much ~ hospitalizations, trying to find a doctor that would follow NIV protocol, and he had so many things happen to him, but he always came through. The day that he became an angel, he was not sick, and had had a wonderful day with his mom, sister, and uncle. It was a huge shock to me, he always seemed to bounce right back, and his mom would just “work on him” until he came back. When Morgan crashed on the way back from the Outer Banks, I had no idea what to do, but I remembered that Ange had “just worked on him.” Something (a guardian angel ~ maybe) told me what to do. When the episode was over, I knew what Ange meant when she said she just “worked on him.” If you do not understand what that means, thank your lucky stars ~ it is something you really don’t want to ever learn about. Morgan had always said, “Hi Baby Jacob!” to his picture that was on our fridge. The day after Ange posted that he had joined the angels, I had not thought about her saying that to him. We walked downstairs, and she said, “Hi Baby Jacob!” I put her down in her high chair, and quickly ran to the bathroom. I did not know what to do or say ~ what to tell her. So, I moved the picture to the other side of the fridge ~ where you couldn’t see it when we walked in. She looked for it in the mornings, but did not ask. After a few months, I put the picture back where it had been. It did not hurt so much anymore to hear her talk to him. We were fortunate enough to meet Ange, her daughter Alyssa and her mom this past summer at the SMA Support Gathering in Virginia Beach.

Date:

February 18, 2006

Today

My dining room is a mess ~ it’s become SMArgaritaville Central. Today I starting working on the sponsorship and auction donation packages (in my dining room), and I started thinking about how funny Morgan was in the dining room. She loved our family room, and kitchen, but every now and then she would want a change of pace. She wanted to go to the living room or the dining room, and just hang out or play. She loved to sit in the dining room chairs “all by myself,” she would say. She liked the chairs that didn’t have armrests, but she would want me to go away (she just wanted her independence without me right on top of her). I would only move away from her when I put her in the chairs with the armrests. She rarely fell over without warning, but I knew that it could happen, so I was (probably overly) cautious. She loved to sit in the arm chair at the “head of the table,” and I would slowly move away from her. Once I was about 6 to 8 feet away from her, she would take her hand off of the armrest, and move her hand under it and wiggle her fingers ~ just to make me CRAZY. I would run back to her, and she would pull her hand right back up to the armrest. I would say, “Morgan, I would like for you to hold onto the armrest, please.” And she would smile her beautiful smile, with that little twinkle in her eye that told me she was going to do it again. Sure enough, she would do it again. By the second time, all I had to do was raise my eyebrows, look at her, and say, “Mooorgan” to get her to put her hand back in position. I love the way she just loved to play ~ her own games with me. Even then I was so happy to see her lift her arm, and move it around. And with that smile...

Date:

February 17, 2006

Today

Three years ago today was Morgan’s first boat ride ~ well, ferry ride. We were in the Cayman’s (thanks to Sissy and GrandDaddy) and we took the boat over to Rum Point for dinner. Sissy was so funny all week that week ~ all she wanted to do was get a hold of Morgan. On the boat, she sat down ~ away from everyone else ~ and just kept Morgan all to herself. They both loved it! Mom (aka Sissy) had not yet retired, so I think that she really appreciated being able to spend so much quality time with her grand babies. Since Morgan was only 3 ½ months old, Mom felt like she had not really had a chance to get to know her yet ~ by the end of the week she knew every thing about Morgan ~ when she needed a nap, when she needed to eat, when she needed a diaper change, and when she needed to be held by her Sissy ~ which seemed to be most of the time! I am so glad we had that trip together, because for the next two years, Mom was extremely busy and under a lot of stress. Mom retired last January, and she was able to spend a lot of time with Morgan this past year ~ I’m so glad they had that time together.

Date:

February 17, 2006

Today

February 16, 2006 ~ Today I was thinking about the night that Morgan was born. My OB doctor had scheduled Morgan to be induced on October 29th. For some reason, I have never gone into labor with any of my children. Zekie was two weeks late, and I was beginning to think that he had remodeled, and had cable installed. I decided to “fake it” on a weekend, knowing that once I was in the hospital, they weren’t going to send me go home. When I arrived, they said that I was not in labor, and they decided to induce ~ Yeah! Fast forward 9 years: With Morgan they started to induce around 9:00am, and by 6:00pm, I was only dilated to 5cm. Now, I had the benefit of having had two other babies, and I know for a fact that I am going to deliver my babies when there are absolutely no restaurants open (including the hospital cafeteria). So for weeks before Morgan’s delivery, I had planned exactly what I was going to eat after her delivery ~ and I even had their phone number written down with the other important numbers. Remember, I was 200 lbs., and going for 3 or 4 hours without food was difficult ~ 12 to 18 hours was unthinkable! So, at 6:30pm, I very nicely asked Bill (okay, I sent Bill) to go pick up our food. He was wonderful about it. I had called in the order so that it would be ready, and he would only be gone for a half an hour. Well, the food wasn’t quite ready yet, so he had to wait a few minutes. At 7:10pm, the nurse came into check me again, and I was at 10cm! My doctor was there within 5 minutes ~ but no Bill! The doctor put on his scrubs ~ still no Bill! The doctor checked all his equipment, and finally Bill walked through the door looking very confused. He put on scrubs, and we were ready to go ~ Morgan was born at 7:26pm. I really felt awful that Bill almost missed it ~ but everything worked out. The nurse put Morgan in the crib, cleaned her up, and gave her back to me. Zekie had told us for months before she was born that he wanted to be the first to hold her. Sissy, GrandDaddy, and Zekie were there within a half an hour, and he was the first (besides me) to hold Morgan. He was thrilled! They always shared a very special bond. I worry about him so much, because he doesn’t talk a lot about how he is feeling. I have tried to tell him that anything, and everything he feels is the right way to feel. I don’t cry or get upset every time we talk about Morgan. I’m afraid that if every time they mention her name it makes me cry, they will eventually just stop talking about her. But, I think he (and Clayton) also need to see that I am in pain, occasionally ~ just so they know it is okay to be sad, too. I don’t know how to help them through this, but hopefully we have a little angel guiding us through all of this...

Date:

February 15, 2006

Today

Today I was thinking about something funny (and gross) that Morgan loved to do. Aunt Debbie comes by after work a few times a week. Well, when Morgan was about 14 months old, she decided that Aunt Debbie was really there to entertain Morgan when she came over. At first, Morgan always had to have Aunt Debbie’s "black glasses" (picture link: http://www.our-sma-angels.com/morgan/spring04.htm ~ top picture on the left). After a few months, and a few pairs of shades later (Clayton liked them, too), Aunt Debbie decided to get Morgan her own sunglasses ~ Pink Strawberry Shortcake glasses ~ Morgan loved them! But, now she didn’t need to get Aunt Debbie’s glasses anymore ~ so Morgan had to find some other entertainment that Aunt Debbie could provide. I think that Morgan was the first one of us to notice that Aunt Debbie always seemed to have gum. At first, she asked Aunt Debbie, “What are you eating?” (I think she was looking for chocolate). Aunt Debbie explained to her that she wasn’t eating anything, it was, “Gum. You just chew it, you don’t eat it.” Morgan was a bit confused ~ like what’s the point of chewing something that you aren’t going to eat?? I think that Aunt Debbie knew what Morgan was thinking, because (in an attempt to show Morgan the special features gum has) Aunt Debbie quickly said, “Here ~ watch this,” and she blew a bubble! Morgan’s eyes grew wide as she watched the bubble get bigger and bigger ~ and then it POPPED! Morgan laughed so hard, but it wasn’t long before she said, “Do it, again!” Within a week, Morgan wanted to blow her own bubbles. Naturally, I wasn’t about to let my not even two year old chew gum (I don’t even like for my twelve year old to chew gum), so when Aunt Debbie came over Morgan would blow “spit bubbles” while Aunt Debbie blew her bubble gum bubbles. It was awful and wonderful to see her blow those bubbles. She was just so thrilled that she could do it, and anything that made her happy always made me happy. Being her “mom,” I just couldn’t tell her how wonderful it was.

Date:

February 14, 2006

Today

Today, Clayton's school (which is the preschool at our church) had a "Mother's Tea" for Valentine's Day. I am trying to still be a mom to the boys, but I just desperately miss Morgan ~ I just want to put her Valentine's ribbons in her hair, I want to let her play with the roses that Daddy gave me, I want to let her eat chocolate ~ but I can't! So, I keep trying to breathe in and breathe out, to take the next step in front of me... The children in Clayton's class stood up to sing "Mother's are for hugging!" It took everything I had just to hold back the tears that welled up in my eyes. It was such a wonderful moment for me to hear my child singing ~ Clayton even knew all the words ~ it was beautiful. Then the children gave us pins that they made ~ I couldn't even speak, except to say thank you to Clayton... This morning Bill gave me a dozen red roses. I have never cared much for flowers, but Morgan did ~ she always did. She loved the roses, so I always thought of them as being for us ~ me and Morgan. Today as Clayton and I were running out of the house for school (our church), I grabbed one of the roses. Morgan's remains are there in a sweet, little garden where the column burial is. I'm sure that I must have known before I left here that I was going to go to the garden today. I did, after the tea. I placed the rose in front of her stone. It now has her name engraved on it. I have not been back there since December 8th ~ when I found it almost impossible to let go of her ... Before the tea this morning, we (the mother’s) waited in the hall for the children to get ready. I overheard another mom say she had two children here ~ and I just thought, so do I, but I’m not going to bring one home this afternoon, make her dinner, give her a bath, or tuck her in her bed tonight. I feel like I just can't relate to anyone anymore, and I can't even fake it. I know that some days are harder than others, this was a difficult one. Aunt Debbie has a sense of when I need her (almost like Morgan has). I almost wish she didn't have it, because I know how much it hurts her to see me in pain. Today she was here immediately ~ I'm so thankful to have the best "sister" ~ Love you, Deb! I hope tomorrow will be better.

Date:

February 13, 2006

Today

I have no idea why I thought of this today, but it just popped into my mind. One day when I was about 8 months pregnant with Morgan, I took Clayton to the bank. I must have been trying to open a bank account for him, because we were talking to a Vice President of the bank. Of course, Clayton was 13 months old, and wanted to get into EVERYTHING on this poor man's desk. So, I found the only way I could control him was to hold him ~ standing up. This was difficult in and of itself, because I was... HUGE! Not just the normal end of pregnancy huge ~ I was probably close to 200 lbs. (I just gain a lot of weight when I am pregnant). So, I’m trying to hold Clayton, bending down to sign forms, and I guess that he must have kicked my tummy (Morgan). She had been pretty low key that day ~ she liked to get active the second I laid down to go to sleep. All of sudden, she kicked and (I'll never forget it ~ I was wearing a white cotton shirt) my shirt flapped out right next to Clayton’s leg. Clayton was not wild about the rumble he felt, so he decided to kick it back. The next thing I knew, my shirt was flapping, again. I put Clayton down. I looked at my tummy, and at Clayton and told them, “This is not going to start right now. If you want to kick at each other, you are going to have to at least wait until Morgan is here.” I turned back to the banker, who looked like he had seen a ghost. Then he smiled and said, “Sibling rivalry, already?” I guess it was. It was so neat that Morgan was making her presence known ~ and not just to me ~ before she arrived.

Date:

February 12, 2006

Today

Today Clayton and I went to the grocery store ~ he was just tired of being at home, and he is feeling better. We walked by the Valentine’s display. I haven’t been able to do much for Valentine’s Day this year ~ it is just something that I want to avoid. But it is still going to come, just like Christmas, New Years, Martin Luther King, and Groundhog’s Days did. I wasn’t even looking at the display, but out of the corner of my eye, I saw it. I saw the Valentine Barbie I bought for Morgan last year. She did not like to play with Barbie’s ~ mostly because they were too big and heavy for her to hold, lift, and play with. She did like to have me play with them for her ~ she would tell me what clothes to put on them, and where she wanted them to sit, or stand. She only had one Ken doll, and he was always (wheelchair) Becky’s “boyfriend.” I asked her about him being the boyfriend (mostly because I just couldn't figure out how my two year knew about boyfriends), saying, “Morgan, are you sure that is not her brother?” “No, Mommy!” “Is he her husband?” “No, Mommy!” “Maybe he is her Daddy!” “NO, MOMMY! He is her BOYFRIEND!” She was always so funny, and always knew so much more than I thought she did. She is everywhere I go, in everything I see ~ she is always in my thoughts.

Date:

February 11, 2006

Today

Last year, Morgan really got into Valentine’s Day, and she loved it! She (with a little help from Zeke) picked out her own Barbie Valentine’s to send to her friends. We had so much fun getting our Valentines together for all of our SMA friends, that they wanted to make even more ~ for Sissy, GrandDaddy, aunts and uncles, and their cousins. Morgan loved to finger paint so she finger painted five or six pieces of paper with red finger paint. After they dried, we cut heart shapes out of the paper, and glued them onto some blank note cards. She loved that she had made her very own Valentine cards, but she wanted to do more to her cards. I asked her if she wanted stickers or ribbons. She wanted ribbons. Her Valentine cards were just beautiful. Last year, we also made heart shaped cookies, and chocolate candies. Handmade cards, and homemade candy are not things that I ever thought I would be doing. I am not creative, at all ~ but Morgan was, and Morgan wanted to do the things she could do. Those were the types of things that she enjoyed doing. We had so much fun, and I am so thankful that we did so much together.

Date:

February 10, 2006

Today

CAROL!! Thank you so much for the pictures! We met Carol this summer in Virginia Beach at the SMA Support Gathering. Carol somehow (I’m not sure of the details?) became best friends with Ange, Baby Jacob’s mommy. http://www.caringbridge.org/canada/babyjacob/ Carol is such a caring and thoughtful person, and she does not even have a child with SMA. Today I received some pictures that she had taken at the Gathering ~ of Morgan. In one of the pictures, I am holding Morgan upside down. I don’t know why ~ other than the fact that Morgan was just a normal two year old ~ but she loved to be turned upside down. She would say, “Upside down Morgan!” when she wanted me to turn her upside down. She loved to swing herself from side to side when she was upside down. I think that is the only picture of her upside down, and you can just tell from the HUGE smile on her face how excited she was. She was just so vibrant and full of happiness! Thank you so much, Carol!

Date:

February 09, 2006

Today

Today I took Clayton to our pediatrician. We saw Dr. Mink, and he was wearing a Sponge Bob tie. Morgan would have loved it (so would Zeke ~ for that matter). Morgan and Zeke loved to watch Sponge Bob together ~ Zeke has not had much interest in it since she has been gone. Morgan and Zeke were planning on watching the new “Where’s Gary?” episode on November 11th, but Zeke had other obligations that night so Morgan and Clayton (and of course, Bill and I) watched it. The next day, Morgan was teasing Zeke by saying lines from the show like, “That’s enough boogey woogey for Grandma.” I knew what she was doing (so, I just laughed at her every time she said that), but he had no idea what she was talking about as he had not yet seen the show. Morgan loved to "play" Sponge Bob. After Morgan’s bath at night, she would say to me, “Okay, Mommy, I’ll be Sponge Bob, and you be Patrick!” She always made me be Patrick (he’s not very bright, and talks really slow). I would say, “Morgan! Why do I always have to be Patrick?” She would completely ignore my question and say in her best Sponge Bob voice, “Hi Patrick!” and then her imagination would take over. She came up with some really great stories. When Daddy came in to her room, she would say, “Hi Mr. Crabs!” and Daddy would clamp his fingers to his thumbs (like a crab) and say, “Money! I love money!” in a great Mr. Crabs voice. When Clayton walked into Morgan’s room, she would say, “Hi Squidward!” Clayton was an awesome Squidward, and he would say, “Hello Sponge Bob.” When Zeke would come in, Morgan would say, “Hi Plankton, I didn’t see you there.” Zeke would say in a BIG Plankton voice, “Sponge Bob, will you please make me a crabby patty?” and Morgan would say, “No, I don’t feel like it, why don’t you ask me later.” Everything we did was fun, and she always included everyone! She is just the sweetest baby.

Date:

February 08, 2006

Today

Tonight, Bill said something to me, and I replied, “Because...because is a reason.” I know that it doesn’t seem to make much sense, so I will try to explain it. My precious little Clayton occasionally (like 12 to 100 times a day) will get into trouble for something ~ I know it is hard to believe, but it happens. I read a lot about raising children when I was pregnant with Zeke, and everything worked out beautifully. Unfortunately, these same concepts rarely work with Clayton. I read that when your child exhibits an undesirable behavior, you should talk to them, try to find out why they did this, and explain why it is not a behavior that they should repeat. I would talk to Clayton, and ask him, ”Why?” he did something, and his stock answer was always, “Because!” I would say to him, “Because, is not a reason.” Amazingly enough, I sounded exactly like my mother. He would then give me a long detailed story about why he did whatever it was he did, and it usually boiled down to, the devil made him do it. Morgan rarely was in trouble, and when she did get in trouble it usually involved teasing Clayton, or arguing with her daddy. One day, Morgan was teasing Clayton, and he was just so upset (she kept telling him that he was in time out). So, I asked Morgan, “Why?” she was upsetting Clayton, and she said, “Because!” I said, “Morgan, because, is not a reason,” and she looked right back at me and said, “Because is a reason!” She caught me completely off-guard, and I made the big mistake of smiling (almost laughing), but that was all it took. From then on, every time I asked anybody “Why?” I knew that Morgan was going to say, “Because is a reason!” So tonight, when Bill asked me what he did, I started to say “because...” and then I didn’t hear it (not out loud anyway) ~ her sweet little voice, so I said it for her. She is so smart, so funny.

Date:

February 07, 2006

Today

Today I was thinking about the way that Morgan sneezed. She had the cutest, daintiest little sneeze I had ever heard. It was just so feminine! When she was a baby I thought it was so adorable, but after she was diagnosed with SMA, I knew it was a sign... an awful sign of her weaker lung capacity. It was still the sweetest little sneeze though, and I couldn’t help but smile when I heard it. She was so funny when she would sneeze (which was not very often), she would sneeze two or three times her adorable little sneeze, and then she would do a pretend, “AAAACHOOOO!” Oh, I just love that silly little girl!

Date:

February 06, 2006

Today

Last night, Clayton was really feeling bad. He wanted me to sleep in his room with him, so I did. He likes to talk to keep himself awake (this is a trick that I think he learned from Morgan, she always outlasted him just jabbering away). He gets very sweet, and says, “I love you so much.” over and over again (I think he says that because he knows I can’t resist saying, “I love you so much, too.” back). Then he said, “I want to kiss your nose.” It was a very strange request, but it reminded me of how Morgan would always say, “I want to kiss your eyes, Mommy!” When she sat on the potty, I would always sit right in front of her, just to be sure that she didn’t fall ~ the only times she did fall over was when she was trying to be funny. She would laugh so hard, then I would prop her back up, and she would do it all over again! Silly girl! But sometimes, she would just look at me ~ staring, and say, “I want to kiss your eyes!” I would close my eyes, lean toward her as she was leaning over to me, and she would kiss my left eye. Then she would say, “And the nother one!” And then, she would kiss the right eye. Those were some of the most precious kisses. It was all her idea ~ it was something that she wanted to do. I know that Morgan loved me, and trusted me ~ and I was supposed to protect her... And now, she’s gone! I would have done anything to keep her here... I miss her so very much

Date:

February 05, 2006

Today

Today I was working on our taxes (ugh!), going through our papers, and I found my prior years day planners. I picked up 2004, and looked at February 5th. That was a very special day for Morgan, and for us. We were able to meet a woman that has been one of our greatest supporters and friends since she first read about Morgan in the newspaper in January, 2004. More than wanting to help in the fight against SMA, she has always wanted to know everything about Morgan, and her progress. Even being a new mom ~ who was experiencing all the firsts that her baby was having that first year ~ she was always excited about the things that Morgan was learning. Jennifer helped arrange Morgan’s first (and only) radio interview with Jim, which was two years ago from today. He is also a wonderful and caring person, and even took parts of the interview to make a Public Service Announcement. Morgan did not say much during the interview ~ just a few little noises, then she promptly fell asleep. In the interview, I heard her breathe her little sleeping sighs ~ "aaah" ~ the sweetest sound. About eight months after the interview, I met a mom in Virginia Beach, whose son was diagnosed with SMA. She told me that the reason they had their son tested for SMA was because her husband had heard a radio commercial about SMA. It was a great day, and I am thankful that Morgan (and SMA) brought so many wonderful, thoughtful, and caring people into our lives.

Date:

February 04, 2006

Today

Today I was outside, and talked our neighbors, Jack and Jackie. They are both just wonderful people, in fact, all of our neighbors are great. They have all been so supportive ~ they have brought delicious meals, brownies (yum!), and other goodies to us. And, when Morgan was here, they were wonderful to her ~ they treated her just like any other child ~ they never saw her disability, only her abilities ~ just like we did. Today I was thinking about the first time that Morgan ever “drove” a wheelchair. We had ordered her chair in April, 2004, but by August it still was not in. Morgan was growing impatient (like any almost two year old would), and really wanted to move by herself. We had an adult wheelchair that our friend, Paul had given to Morgan, so Bill started thinking... maybe, just maybe she could drive that adult size wheelchair ~ with a few modifications. He set her infant car seat in the wheelchair, and strapped her in it. Then he adjusted the position of the joystick, then he realized that she needed to be upright just a little bit more, so he added a pillow for extra support. AND, it worked! Morgan was thrilled! At first she just moved forward and backward a foot or so, but soon she was driving down the driveway, through the front yard, and over my flowers (I was thrilled!). Amazingly enough, seeing your child drive a wheelchair for the first time, is just as wonderful (maybe even more so) than watching them take their first steps. There is a picture of Morgan that first day that her Daddy had her rolling, on this web page ~ it is the bottom left picture ~ you can see that she is just so excited! http://www.our-sma-angels.com/morgan/summer04.htm

Date:

February 03, 2006

Today

Today I was cleaning our kitchen floors, and I noticed the tray to Morgan’s highchair. We stored it in the space between the fridge and cabinets. I picked up the tray, and noticed that there was a thin layer of dust on it. We had originally used the highchair for Clayton ~ four and a half years ago. It is called the “Swinging Meals” chair ~ it sounds like a terrible concept, but it actually worked out very well. When they were newborns, they loved to swing, but by the time they were ready to sit up and eat from a highchair, they were both over swinging. The chair was perfect for Morgan, because it had a lot of support, and it reclined a little. Morgan sat in that chair several times a day, almost everyday she was here. It is just so hard to believe that she has not used her chair in so long that dust was starting to settle. When the boys outgrew their “baby” things like their bouncy chairs, exersaucers, and cribs ~ I always felt a little bit nostalgic. I had a sentimental attachment to their baby things, but I was also excited to see them move forward to the next stage of booster seats, swing sets, and toddler beds. I wish that her tray had dust on it because she had outgrown it. I wish that her highchair was in the garage because she had outgrown it ~ I wish that I had something else to look forward to with her. It may take me a very long time to move her tray out of the kitchen. Her room may always be filled with her clothes and things ~ but, I was a “pack rat” with my children’s things before this happened, and now that it has, I want to hold onto everything that Morgan ever touched, ever looked at, ever knew. It just makes me feel closer to her.

Date:

February 02, 2006

Today

Today is Groundhog’s Day ~ I know it is not one of the “big” holidays (in fact, it may not even be a “holiday”), but last year I had the BEST Groundhog’s Day ~ ever! Last year at this time, I had started playing “The School Game” with Clayton and Morgan. I wasn’t quite sure whether or not they were ready for a home schooling program, so I decided we would just try it out, and call it a game. They loved the School Game! (They even wanted to play it on the weekends.) I printed out the history of Punxsutawney Phil ~ one of the most interesting things we learned was that Phil was once on Oprah. I was so excited that I found something educational to share with them, and that I had found a neat activity to do after the “lesson.” Clayton pretended very nicely to listen, and I think that Morgan really did listen to everything about Phil. For our activity, we made little brown construction paper groundhogs and taped them to a popsicle stick. Then, we cut a slit in the bottom of a paper cup, and put the popsicle stick through the slit, so that the groundhog could “pop” out of the “ground” (cup). I had two white paper cups, but Morgan insisted that she had to have a red cup. Unfortunately, the red cup was plastic, so the popsicle stick did not move very easily. I made the slit a little bit bigger, and she had a ball “popping” that groundhog out of his hole all day (and the rest of the month of February, for that matter). She was so funny ~ she would say, “There’s your shadow!” to the cardboard groundhog “Phil,” or she would say, “Ooops, you lost your shadow!” Clayton was not that thrilled with the groundhog creation ~ but it was perfect for Morgan. It was light, easy to move, and she just loved to be able to do things “by herself.” Happy Groundhogs Day!

Date:

February 01, 2006

Today

Today my mom and I went out to lunch. I think it was the first time that we have ever gone to lunch just the two of us. She looked at me across the table and said, “Looking at you right now, is reminding me of Morgan.” Oh ~ how sweet! No ~ it was my hair ~ I haven’t had a hair cut since the beginning of December, so my bangs are in my face. When Morgan’s bangs would get too long, she would always say, “Hair in face! Hair in my face!” I wasn’t really sure if I wanted her to have bangs or not, so they were usually at the “growing out” length. (Sissy encouraged me to trim her bangs more frequently.) Hair in Morgan’s face really bothered her, because it was hard to get her hand up to her face, and then try to move an invisible piece of hair. She tried, but usually needed some help. Daddy was awesome at getting the hair out of her face, he would just take in a deep breath and blow all her hair away. She just loved it! When the hair was gone, she had the biggest smile on her face that showed off all her teeth and dimples ~ she is such a happy little girl!

Date:

January 31, 2006

Today

Today I was cleaning our den ~ one of my least favorite things to do is go through Clayton’s toy box. Every time I ask him to put away his toys ~ he dumps everything in there (it great that he puts his things away ~ we'll have to work on organization). Morgan was very good about telling him where everything went ~ we teased that she was heading for a career in Management. So, going through the toy box, I found Morgan’s Polly Pockets laptop, a pair of Polly boots (I can’t believe I found them both), some bead necklaces, and, of course, more hair scrunchies. Those scrunchies are like the light brite pieces that my mom was still finding when I went into college. That's okay though ~ I just love to find them ~ it feels like finding a twenty dollar bill in your coat pocket the next winter. I decided to put her things in one of her toy boxes. Morgan and I (okay ~ it was mostly me) had painted a wooden crate that she had in her room for her stuffed animals. I brought the crate downstairs in December, so that her cousins could pick out some of her things ~ and I left the crate downstairs. I thought that I would put her toys in there, and leave that box in our family room. I just like to keep her things close. Someone, (Clayton) has slowly been pulling the slats off of this crate. So, I went to get a hammer and some nails out of the garage. Bill has a very interesting method of organizing the garage (I call it total chaos), and I could not find the nails, but I did find Morgan’s hot pink ear plugs that she used in the pool. It took me right back to the day I bought the ear plugs. It was July 8, 2004 ~ Morgan had swimmers ear. Dr. Riccio suggested ear plugs or drops for the pool. Morgan liked the ear plugs (because they were hot pink), and she called them her “swimming ear rings.” She was so funny, and so smart. I am so thankful that I have so much of Morgan around our house to remind me of all the wonderful things that she did.

Date:

January 30, 2006

Today

Last night, I had a beautiful dream ~ it was the first one that I have had about Morgan since December 4th, that was not about what happened that day. I dreamed that Morgan was at a Valentine's Day party. There were all these little wooden preschool chairs around in a circle, and a small round table in the middle. There was a white paper tablecloth on the table, and on that were three cups of jelly beans, two were filled with pink jelly beans, and the one in the center was filled with red. Morgan got out of her chair (which was very strange to "see"), and walked (also strange) over to the little table and picked up two cups, to take back ~ one for her, and one for a friend. She was just like she was here; sweet, thoughtful, considerate. Then I woke up. I thought about the dream ~ over and over again ~ because it was so wonderful to see Morgan happy.

Date:

January 30, 2006

Today

Last night, our friend Kyleigh earned her angel wings. She would have been three years old in April. Her mom, Carrie, is just the best mommy. Kyleigh loved to dress up, wear jewelry, and have her nails painted. Her web site is http://www.our-sma-angels.com/kyleigh/ Kyleigh, you and your family are in our thoughts and prayers.

Date:

January 29, 2006

Today

Since Morgan had turned three in October, she had started this funny little game she played with us ~ it was a "Morgan version" of “I got your nose!” She loved to tease us, and she would wave her hand in the general direction of your face (because she couldn’t reach up and grab your nose), and say, “I got your nose!” Then she would bring her hand to her mouth, and say, “CRMPH!” (a chomping noise). It was the cutest little chomping noise ~ she was so animated. She just loved to get Daddy’s nose, because he was so dramatic about losing his nose ~ he pretended to cry, and then beg her for his nose back ~ It was so much fun to watch her laugh so hard at Daddy, and then tell him, “No!” After he was duly appalled that she had said “no,” she would say, “Here’s your nose back, Daddy!” with the sweetest voice I had ever heard. She was just always so much fun.

Date:

January 28, 2006

Today

I have not been driving the white van. We originally bought it when I was about 7 months pregnant with Morgan. We knew that we were going to need more room ~ enough for two car seats, a growing ten year old boy, plus two parents. Morgan was always in that van, always within arms reach, always right back in the middle back seat with her big beautiful smile every time I turned around. That was the van that Bill was driving when we almost lost Morgan in March. It was the van that I had Zeke counting each of her breaths out to me in as we drove down the interstate last spring. It has all of her equipment and supplies in it ~ her pillows and supports that I made for her ~ her toys, her sweaters, her blankies, her shoes. It is just so Morgan ~ everyone who has children knows that when you have children, your car is no longer your car, it is your children’s car. I guess that I just am not ready to go through it all. I’m not ready to clean it out, to move Morgan’s things out of the car. I just want them to stay in there. I want as little to change as possible. Maybe slowly (very slowly) I can start to move things to other spots, but right now I have a single purple bead sitting next to the kitchen sink that I can’t put back in the bead box ~ I clean under the bead, and I think, “hmmm, I should put this bead away.” But, I don’t ~ I put it right back on the counter next to the sink ~ and it has been there for weeks. I am trying to allow myself time ~ time to adjust, hopefully it will all come in time. And if it doesn’t, maybe having a purple bead on your counter is okay.

Date:

January 27, 2006

Today

I have some file folders with butterflies on them ~ I am using them to organize information about our SMArgaritaville. I was going through the information ~ trying to keep busy ~ and trying to keep myself distracted ~ when I started thinking about Morgan. I am always thinking about her, but sometimes certain things just pop into my mind. I remembered her TLSO (her torso support) fitting in November. After they cast her (which was a pretty funny story I wrote about on 12/22/05), they were asking her if she wanted a design on her TLSO. They pulled out a sheet that had different patterns. One of the men said, “How about butterflies? All the girls love the butterflies!” He had two different styles. The first style he showed Morgan was with butterflies that were very round, and they looked like the pattern of a shirt I had in the 70's. Morgan was not impressed, and she said, “No. No butterflies.” The second pattern looked like real butterflies, in blacks and browns and oranges ~ no purples or pinks. Morgan again said, “No. No butterflies.” He brought back out the 70's butterflies, and asked her to look at them again, but instead, Morgan looked at a pattern next to the butterflies ~ the rhino’s. Then she looked at him and said, “How about those rhino’s?” He quickly put away his pattern sheet and said, “Okay. No pattern.” She was so funny! Everyday that she was here ~ was like that ~ it was all so fun, and wonderful!

Date:

January 26, 2006

Today

Today I picked Zeke up early from school ~ he still seems to have a bug. On the way home, he started talking about Morgan. He said that she was like a “clone” of him, they were just so very much alike. They just loved to be with each other. They would read, talk, and play together for hours at a time. It always amazed me that a 12 year old and a 2 year old had so much in common. One day about 6 months ago, Zeke asked me if the researchers (that are working on the cure to SMA) could take his SMN1 and give it to Morgan. I told him that I did not think so, but if they could, then he would not be able to walk anymore. He said, “That’s okay, Mom. I have walked. Morgan hasn’t.” He really would have given up his ability to walk for her to be able to. He is so sweet, and Morgan was so special to him. Then I picked Clayton up from school, and we saw an ambulance coming out of our neighborhood. He said, “Mommy, is Morgan in that ambulance?” and I said, “No, Clayton, she is not.” He was quiet for a few seconds, and then he said, “I wanted those firemen to fix Morgan.” I said “Those firemen really wanted to fix Morgan, too, and they did everything they could to help her.” He processed that, and said, “We need God’s cell phone number.” and I said, “I don’t think that God has a cell phone.” He said, “Yes, he does. The number is Eight-Zero-Zero-One-Two-Three-Four." I did not say anything ~ I really did not know what to say. As we pulled into our driveway, Clayton said, “We need to get a ladder that goes way, way, way, way, way high in the sky, so the firemen can go to Heaven, and paint a happy face on Morgan’s tummy (we actually did this to her once ~ because she wanted us to), and then she will be happy, and then they can wipe it off, and then they can bring her back here and take her to the little kids doctor at the little kids hospital, and they can fix her, and she can come back and be with us.” WOW! What do you say to that? I told him that I thought that he had a great idea, but that Morgan was probably happy in Heaven, and that she could walk, and run, and jump, and hop. He worked so hard to figure out a plan to get her back, that I just couldn’t tell him it wouldn’t work. I think that sooner or later he will realize that you can’t "undo" or fix death, but it is a hard concept for me, so I don’t know that I would be very good at trying to explain it to him. I do know one thing today, I have been so blessed to have three wonderful children!

Date:

January 25, 2006

Today

Tonight I was walking out of Clayton’s room and I noticed that his sign pn his door had fallen down ~ on the back was the date 01-24-04. Zeke, Clayton, and Morgan had painted their door signs to their rooms two years ago from yesterday. Zeke and Clayton had picked out bunnies (I'm not sure why ~ but I think that Clayton wanted a bunny, and then he decided that ALL the boys ~ him and Zeke ~ had to have bunnies), but Morgan wanted a heart. She was not even 15 months old yet, but she knew exactly what shape she wanted ~ a heart! She evenknew exactly what color she wanted ~ hot pink. I only had white paint and red paint, so I had to mix red into the white paint until it was the perfect color. I'm glad that I can remember things that Morgan loved ~ and how happy, and proud she was when she did them. I still think about December 3rd, and what happened to her ~ but I don't think it is good for me to replay that in my mind. That was not what made Morgan, Morgan. It was everything that happened before that, that made her the wonderful, smart, sweet, and beautiful child that she is. And, that is what I need to remember.

Date:

January 24, 2006

Today

Today I was thinking about how Morgan loved to play her computer games. When Morgan was about 22 months old, we realized that the computer was going to be an essential tool for her. So, we set up an appointment with the Adaptive Communications department at CHKD (it is amazing how many services they have ~ we are so lucky to have it here). They showed Morgan every piece of adaptive equipment (joysticks, buttons, etc.) they had to make it easier for her to use the computer, but Morgan would have nothing to do with anything except a standard keyboard, and tracker ball mouse. I went out that day and bought her a tracker ball mouse ~ and quickly learned that I can’t even direct it. Morgan loved her ELMO preschool game. She could “click” on the letters of the alphabet to get Elmo (or Zoe) to say the letter, or she could click the ABC button that would sing the entire “Alphabet Song.” She loved to get the program to sing the song ~ over and over, again! Part of the reason she liked it so much is that after three or four times, the song would drive Clayton crazy, and he would beg her (or tell her very sternly ~ depending on his mood) not to play it again! She would just get that little devilish grin on her face, and pause with her eyebrows raised, and then play it again! She is so funny ~ and the perfect little sister to both of her brothers.

Date:

January 23, 2006

Today

Today Judy (Morgan’s Physical Therapist) came over. It was great to see her. I am so glad that she was Morgan’s PT ~ she was the best PT there could have been for Morgan. Judy started working with Morgan when she was about 8 months old, so Morgan knew Judy most of her life. Judy was great about encouraging Morgan to work, sometimes Morgan tolerated it, and other times she would not. When Morgan was about 18 months old, she started to “fall asleep” in the middle of her therapy ~ this from a little girl that I could NOT get to take a nap. The first time she did it, Judy said, “Well, I guess there’s not much that we can do if she’s asleep,” and she left early. Amazingly enough, Morgan woke up minutes after Judy left. The following week, the same thing ~ Morgan fell asleep half way through her session. Again, Judy left early, and I walked her to the door. When I came back into our family room, Morgan had one eye open all the way, and the other half closed ~ I think she thought she was faking me out. As soon as she was sure that Judy was gone, she was wide awake ~ bright-eyed and bushy tailed! The following week, I told Judy what had happened, and this time, when Morgan fell asleep, Judy did not leave. She told Morgan, that she knew she was faking, and this little smile ran across Morgan’s face although her eyes were still closed. Morgan eventually opened her eyes and acted like she had just been awakened ~ but I’m pretty sure that she was trying to outsmart us. I love that silly (and smart) girl!

Date:

January 22, 2006

Today

Tonight we had mashed potatoes with dinner. Morgan loved mashed potatoes. She could pick them up with her spoon, but after about ten bites, that spoon just seemed to get a bit too heavy for her. So, we started making “potato balls.” Potato balls are mashed potatoes rolled into bite size balls. They were easy for her to pick up, and gave her the independence to feed herself. After the first time she had them, that was the only way she would eat her mashed potatoes. Clayton has never really eaten mashed potatoes, but he tried them tonight (which is a HUGE deal ~ when a four year old will try something new), and then he said, “I love these mashed potatoes.” There are a few things that he refused to do when Morgan was with us, and trying mashed potatoes was one of them. It is comforting to see that he has picked up some of her habits, and tastes.

Date:

January 21, 2006

Today

Tonight I was thinking about my Morgan, and how very much I miss her ~ and the guilt I feel. I know that this is a normal part of grieving, but it is still very difficult. When you first have a baby, they depend on you for everything ~ to feed them, to carry them, to comfort them, to love them. As they grow, they become less and less dependent. But still when they fall and scrape their knee, they still need their mommy (or daddy) to put a band-aid on, give them extra hugs, and feel-better kisses. When you have a child that is diagnosed with an incurable disorder, you learn very quickly that you can’t FIX it, all you can do is make the best of it. I never thought that Morgan would leave ~ I always felt that we could learn everything there was to know about SMA, and protect her. I didn’t though ~ I didn’t protect her. Even all the love that I have for her could not keep her here. I know that her leaving was because of SMA, but my heart still just aches. Morgan and I were meant to be together ~ she was the most perfect daughter, and we were both so happy together.

Date:

January 20, 2006

Today

I know that this journal is supposed to be about my memories of Morgan, and even though this is not a memory of her ~ it is definitely something that I don’t want to forget. Last night I had another dream about Morgan ~ that I remembered. I think that I must dream about her a lot, but I usually don’t remember them. I dreamed that she was home with us. That we had thought that she had flown to heaven, but a few days later, she awoke ~ just fine. I was taking her outside our front door, and she was driving her “bicycle,” and all of a sudden the seat of her wheelchair just started to close up on her ~ like a movie theater seat would ~ (Thanks, Suzanne!) she was struggling to breathe ~ I kept looking at her joystick to make sure that nothing was pushing it, but I couldn’t figure out what was happening. Finally, I unhooked her seat belt, and just pulled her out. I flipped her over my knees, and patted her back, she coughed, and was fine. It was just a scare. My neighbors Joan and Jackie were driving up, and saw all this happen, but they were relieved that she was fine, and they were so happy that Morgan was still with us. I remember sitting on our front steps with Morgan on my lap (just smiling and happy) telling them, that the doctors could not explain what had happened ~ why we all thought we had lost Morgan, and then for her to come back and be fine ~ it was just a miracle. Later in the dream Bill and I were talking, and I said to him, “Oh, Morgan was so lucky... No, we were so lucky.” Then as I was having this wonderful dream about my sweet baby, I heard, “DAD!” “DAD!” It was Clayton (he is still sleeping with us). I said “Clayton, Daddy is asleep, honey, what is wrong?” He told me that he had had a bad dream, about a BIG (from the size of his hands ~ it must have been about a foot and a half long) black bug at Sissy and Grand Daddy’s house. He said, “We can NEVER go there again.” Of course, I wanted to go back to sleep and try to continue my dream, so I said, “Okay, we won’t go there ever again.” Then he said, “I need to look out the window.” I said, “No you don’t, you have to go back to sleep.” He said, “Is it time to wake up?” I looked at the clock, and said “No, Clayton it is 1:30 ~ you need to sleep for six more hours.” He said to me, “I’m never going to sleep, again, because I will have bad dreams. So, no more sleep!” At this point, I decided that I might need some help, so I tapped Bill on the back (or what I thought was Bill’s back), and said, “Bill.” Nothing. He did not even move, so I hit him again ~ still nothing ~ I was starting to get nervous. I heard a noise down the hall, and I yelled, “BILL!” Of course, he came running in, and helped me get Clayton back to sleep. We told him no more BUG dreams. Before he fell asleep he asked me if I had had a bad dream. I said ~ “No and yes ~ I’m really not sure ~ it was complicated. Too complicated for me to even understand, sweetie.” I think that I will take it as a good dream with another positive message from my Mo Mo ~ I think that message was that she is fine. After everything that happened to her that day, she was fine. I certainly hope she is...

Date:

January 19, 2006

Today

Today I was thinking about something that Morgan had a lot of fun doing. April (Morgan’s Occupational Therapist) brought one of those big PUNCH balloons over for Morgan to hit ~ it was a really good exercise for her wrists ~ she needed to keep her wrists as strong and flexible as possible so that she could write more (and for longer periods of time), draw circles, eat with utensils with more ease, and drive her chair (that she always referred to as her "bicycle" ~ another story). Morgan really wanted to hit the balloon WITH something, like a bat ~ so, the only thing that I could think of (that was light enough for her to swing)~ was chopsticks. She hit the punch balloon several times, and then she wanted to “sword fight” ~ BROTHERS! She had so much fun saying, “Unguard!” and “Hiya!” as she and April played with their chopsticks. April thought that it was great for her wrists, because she could really whip that chopstick around. I just loved seeing her have so much fun ~ but, she almost always did try to have as much fun as she could with everything she did! She was just so happy...

Date:

January 18, 2006

Today

Today I picked Clayton up from his first day back at preschool. I was trying to get him hooked up in his booster seat (his “big boy” car seat), and he said, “How about I sit like this?” Of course, he had his head in the seat. I said, “That’s craziness!” A half a second after I said it, it hit me, “craziness!” That was one of Morgan’s words ~ and one of her favorites. My mom (Sissy) has been driving Zeke to school in the morning since first grade, but after Morgan was born, she would come by our house to pick him up. She said that she wanted to make things easier for me ~ but, I suspect that she really wanted to get a few hugs and kisses from her little friends here. Clayton would say to her as she was leaving, “I love you, but you’re crazy!” (I think that he has heard that said to him ~ A LOT!). Morgan had started saying to her, “I love you, craziness!” She recently had altered it to, “I love you, your craziness!” I think that Sissy liked that because it sounded a lot like “your highness.” Morgan always could make her Sissy smile!

Date:

January 18, 2006

Today

Late this afternoon, we learned that four year old Timmy Weber (from Pennsylvania) with SMA passed away this afternoon. His mom posted a picture today of him, with his candle for Payton. His family is in our thoughts and prayers, especially his parents and brothers.

Date:

January 17, 2006

Today

Today Clayton and I went to pick up Zeke from school. We take the interstate, and get off on Tidewater Drive. The exit is one of those that loops around almost to a full circle. As I was going around the loop, I heard Clayton singing/screaming, “Aaaaahhhh!” from the back seat. I looked back, saw him leaning as far over as he could in his car seat ~ a scene that was very familiar ~ although I have not seen it in a little bit over six weeks. Morgan started this “game” back in August. Now before I tell you what she did, I would like to go on record stating that I have not had a moving violation or collision since well before she was born ~ so I have absolutely no idea where this comes form. Whenever we were driving home, she would look out the front windshield to see if there was anything in front of us ~ it didn't matter if it was a house a block away, or the end of the street right in front of us ~ but if there was anything at all ~ she would say, “Aaaaaahhhhhh! We’re gonna crash!!!!” Then I would turn, and she would say, “Whoo!” and roll her head to one side away like she was falling out of her car seat. And if there was another house (like in our neighborhood) she would again go, “Aaaaaaahhhh! We’re gonna crash! Aaaaahhhh!” The last two blocks before we stopped in our driveway were always so much fun. There are five turns, and at each turn a house was in front of us, she would say that. Clayton and Zeke joined in on it, too, and the three of them had a ball ~ screaming! I would just laugh thinking that they were all so funny (and crazy)! I am so lucky to have had such a special little girl who could make even ordinary things fun!

Date:

January 16, 2006

Today

I keep thinking about the lyrics to that song "In My Daughter's Eyes." I wish that I could truly express how happy Morgan made me. The little things that I took for granted with the boys ~ I was so appreciative of with Morgan. The fact that she could eat on her own, breathe on her own, sit up on her own. And she was always so happy ~ she never complained about her treatments (well not too much), or about not being able to walk, or run or jump. She was so smart ~ she figured out how to do all that with her Polly Pockets dolls. I remember just being THRILLED when we had figured out the exact position for me to hold her on my hip, that would allow her to hold her head up on her own when I carried her. When Morgan was born, that was IT! I was so happy, and everything was perfect ~ even with the SMA diagnosis, it was still perfect, because Morgan was Morgan. I am so happy, and thankful that I am her mommy. We have had some sad news today. Five year old Payton with SMA, passed away yesterday. Please keep his family in your thoughts. We know all too well how hard this is for them.

Date:

January 15, 2006

Today

In November 2004, we held our SMAsquerade Ball to raise money to fund SMA research. It was a great event, and we raised over $26,000.00. During the ball, my mom asked the DJ to play a song, but before he did she made a dedication. The dedication was to Morgan and me. She said that one day she was driving to work, and she heard a song on the radio that she had never heard before, but that the artists' voice was beautiful, and when she heard the lyrics, she thought that the song had been written for Morgan and me. The song was, “In My Daughter’s Eyes,” by the phenomenal Martina McBride. Tonight Aunt Debbie and I were going to go to the Martina McBride concert here. We have a wonderful friend, Jennifer that gave us the tickets for the show ~ THANK YOU, JEN! It means so much to us! We love you! Unfortunately, Martina has laryngitis, and had to postpone her show. She is very thoughtful, though. There is even an apology on her web site ~ here she is sick, and apologizing to her fans. The lyrics to that beautiful song my mother dedicated are: In my daughter's eyes I am a hero I am strong and wise and I know no fear But the truth is plain to see She was sent to rescue me I see who I wanna be In my daughter's eyes In my daughter's eyes everyone is equal Darkness turns to light and the world is at peace This miracle God gave to me gives me strength when I am weak I find reason to believe In my daughter's eyes And when she wraps her hand around my finger Oh it puts a smile in my heart Everything becomes a little clearer I realize what life is all about It's hangin' on when your heart has had enough It's giving more when you feel like giving up I've seen the light It's in my daugter's eyes In my daughter's eyes I can see the future A reflection of who I am and what will be Though she'll grow and someday leave Maybe raise a family When I'm gone I hope you see how happy she made me For I'll be there In my daughter's eyes The lines “But the truth is plain to see She was sent to rescue me” rings so true for Morgan and me. Morgan changed me ~ the things that I once thought were important, are not anymore. Now what is important to me is my family, my friends, and that I do whatever I can to help raise awareness of SMA. I know that research money will follow if people just know about SMA, and that it attacks babies and children that aren’t even given a chance to stand up and fight back. I am going to spend the next few months knocking on doors and begging people to make donations for our auction in May. I may be turned down (a lot), but the worst thing that could ever happen to me has already happened, so I’m not afraid of someone simply telling me no. I will do what I can, as long as I can for Morgan, and for the other children with SMA that I love and want to see grow up, get married, and do something wonderful and meaningful with their lives.

Date:

January 14, 2006

Today

Beads, beads, beads! Morgan loved her beads. She loved the big ones that she put on pipe cleaners last Christmas to make a Christmas tree, and she loved the tiniest little beads that she strung on an elastic band to make a bracelet. These beads were so small, that I could not even put them on the elastic ~ but she could. Last year, on a Saturday morning in mid February she sat in her high chair after breakfast and made a bracelet with these beads. I held the elastic string, but she put every single bead on to make her bracelet. She would use her delicate little pincher grasp to pick up each bead, and bring her hand up to about chin level, and then she would drop (it was a pretty fast movement, so she was letting gravity help her) her hand down and put each bead on the string. I was amazed with her accuracy in aiming the bead right onto the string ~ I mean she was just two years old! She must have placed thirty beads on the string, and then I gave her the letter beads ~ so she could spell out her name with the beads. She wore the bracelet all the time ~ in fact, you can see it on her left wrist in the picture on this page http://www.our-sma-angels.com/morgan/alwaysnear.html On November 29th, the bracelet broke. I had put it on the window seal above our kitchen sink so that Morgan and I could fix it together. We were pretty busy with school that week, so we did not have time to fix it. I was planning on fixing it with her Saturday afternoon ~ but we never had the chance... Last night, I decided to fix it so that I could put it in the beautiful silver heart box that Mrs. C. sent to me. I very carefully removed each bead (one at a one) and replaced it on another elastic string ~ I wanted it to be in the exact same order that Morgan had selected. I went to tie it off at the end, and dropped it ~ about ten beads fell off. I put those back on, and again I dropped it ~ this time more beads fell off, and I just broke down ~ how could I have done that ~ TWICE?? I know that I was trying so hard to be careful that (being the klutz that I am) it just made me super nervous. I do, however, know that Morgan knows I tried ~ and that is what matters.

Date:

January 13, 2006

Today

Today is Friday the 13th and it was actually a pretty good day. Aunt Debbie, Clayton and I firmed up our plans for SMArgaritaville with Bob at the Ramada. We are planning on having it on May 20th. As I was driving back from the Oceanfront, I was thinking about a Friday the 13th that we had three years ago. It was in February ~ the day before we were going to the Caymans with Sissy and Grand Daddy. Morgan was only three and a half months old, and Clayton was seventeen and a half months old. I was on my way to pick Zeke up from school, and I had a few things to drop off in the mail box. I stopped at the box near the edge of our neighborhood, and I unlocked all the doors, to jump out and drop the items in the box. I even left the drivers side door open ~ but we must have been on some sort of a slant, because as soon as I reached the front of the van, the door shut ~ and then I heard the doors ~ LOCK!! I couldn’t believe it! Clayton (thankfully) was asleep, if he had been awake, he would have be beside himself. Morgan though, was wide awake (like always) ~ happy, and smiling at me through the windows (tinted windows ~ what was I thinking??). I somehow was able to flag down a man who went to a doctors office nearby, and called 911 (the Fire Station), he also asked them to call the school to tell them that I would be late picking Zeke up. When the fire truck arrived, they tried for a good twenty minutes to open the doors, and we finally decided the best thing for me to do was to let another person drive me back to our house (about 7 blocks away) so I could break in, and get the extra set of keys. I had such a hard time leaving them (even with the fire men and women there) ~ and it seemed to take hours to get home. Clayton slept through the whole thing, and Morgan was just as happy as she could be the entire time ~ but I felt so bad. About a week ago, I was thinking about the EMS people who came to our house on December 3rd, and one of the women looked very familiar ~ I think that she may have been there the day that I locked them in the car. I am just so happy that Morgan was not stressed out, or upset by that event ~ she’s always been so positive, and just happy.

Date:

January 12, 2006

Today

Last night, laying in bed ~ before I fell asleep, I was thinking about Morgan (like always ~ she is and has been my last thought before I fall asleep, and my first thought each morning when I wake up), and I just started thinking about Morgan’s feet. Strange, hmm!?! I could imagine her laying on the floor in our den, and I just walked over to her, and picked up her feet, and kissed them. Not just one time each, but about a hundred kisses on each foot, then I would put her heels up to my forehead, and let her "kick/push" me away. Sometimes I would just fall all the way over, and she would just laugh and laugh, and then ~ of course ~ say, "Do it again!" I know that I was thinking about this because we had done it so many times. When Morgan was diagnosed with SMA, I just knew (I have no idea how I knew) that keeping her stretched out and flexible would be one of the best things we could do for her. Morgan “exercised” (which was mostly me stretching her) three or four times a day for twenty minutes at a time (I didn’t want to do too much at one time, so we spread the exercise out over the course of a day). She was very patient with me ~ for the most part. We would stretch and flex her heels (and toes) 200 times each session ~ I would do 50 stretches with one foot, and then do 50 with the other, counting each stretch out loud. I think that is why she was counting to 40 ~ all by herself, by the time she 16 months old. Morgan’s feet were so soft, and small ~ of course, that may be because she did not walk on them. Sometimes they were cold, sometimes they were warm, but they were always so soft, and smelled like the cotton blossom lotion she loved so much. There was a vertical crease-like line in the "ball area" of each of her feet, so I would always make sure to stretch that part out for her, and she really seemed to like that ~ she started calling that her “foot massage.” She would allow me to do all the other stretches that she did not really care for, but I think it was only because she knew that her “foot massage” was coming! I loved to give her those little foot massages ~ I wish I could have done it everyday for the rest of my life. She is so wonderful, and smart, and I am so proud of the little girl that she is. Sorry ~ I know that my verb tenses don’t make a lot of sense ~ it is so hard for me to write about her (or think about her) in the past tense.

Date:

January 11, 2006

Today

First, tonight I would like to thank all of you for your love and support. We have read, and reread all of the cards, notes, e-mails, and guestbook postings you have sent to us. If you have not yet received a personal thank you from us, it is because each of these has had a special meaning to me, and I want to take the time to say exactly how your support has helped us. Please know that we are very touched to know that so many people care for Morgan and our family. Now, for my wonderful memory of Morgan. Today Judy (Morgan’s physical therapist) called. Clayton and I were out picking Zeke up from school, so I missed the call. When I went to the play the message, I saw a picture of Morgan on Bill’s desk. It was a Halloween picture, she had just turned a year old. She was dressed up like a Barbie ballerina. Aunt Debbie had found the costume for her ~ in fact, I think that Aunt Debbie bought her a costume every year (what a GREAT aunt)! Her first Halloween, she was only two days old, so we did not even think about dressing her up. This second year though, she was excited. Daddy took Zeke, Clayton, and Morgan around our cul-de-sac (while I watched from the front porch). After they went to all three houses (including ours), Morgan was ready to come home ~ and I was really ready for her to come home. Daddy took the boys back out, and I set Morgan down in the cradle in our living room to help some trick or treaters, and I came back, and she was asleep! She had been so excited ~ went to three houses ~ and then just crashed! What a silly girl!

Date:

January 10, 2006

Today

Today I was walking through our garage, and I saw this little basketball hoop with suction cups on it (the kind you can stick on a window). I know that I have walked by it at least twenty times since December 4th ~ but I just now really noticed it. Last April, the boys were playing a lot of basketball, and Morgan wanted to play, too. I would lift her up to the net so that she could throw the ball through, and I was getting exhausted from lifting her to the basket. Zeke remembered that he had that little basketball set, and we put that on her stroller between her legs, and gave her the foam ball. She had a blast throwing the ball into the basket over and over again ~ all by herself. Seeing it was one of those bittersweet moments ~ I try so hard to focus on other things, so it caught me “off-guard.” It was wonderful to remember the great time she had with it, but at the same time it was awful to remember that she won’t be playing with it this spring.

Date:

January 09, 2006

Today

Today I was thinking about Morgan and her rolling. She first rolled over when she was 4 days old ~ she was definitely the strongest newborn I had ever had. I remember that Dr. Mink said (when she was less than a week old), “Don’t leave her on the bed, she’ll roll off.” Sure enough, she was rolling like crazy when we put her down, so I found a wedge (for the bed), that kept her from rolling onto her tummy when she was asleep (Back to Sleep). She was strong, though, and sometimes she would even roll over that wedge. When she was about six months old, I noticed that she was not trying to roll over when I laid her down anymore. I thought that she had decided not to try to fight that wedge anymore, but (just being me) I was a little nervous. I took away the wedge, to encourage her to start rolling again. She just wasn’t interested in rolling anymore. About six weeks later, we found out that she had SMA. She would still roll over, but she really had to be coaxed into doing it. We knew that rolling would only help her, so we always encouraged her to roll. Judy showed me some great techniques to get her to roll over, and then Morgan taught me one. We always came up with very strange types of therapies for Morgan, and most of them, Morgan taught us. Clayton had dropped a goldfish cracker just out of Morgan’s reach one day when she was about 10 months old, and I saw her just roll herself over for no apparent reason (I didn’t know the cracker was on the floor). I thought that she had had some major breakthrough, and I ran to her, and saw the goldfish go into her mouth ~ I laughed so hard. That silly little girl!

Date:

January 08, 2006

Today

Tonight, Clayton asked if we could make smoothies. We have not made them in about a year, and all of sudden that was what he wanted. While we were making them, I remembered how much Morgan loved “smoothies,” but she called them “smoovies.” She would always tell me what fruit to put in ~ she loved frozen strawberries, and bananas. Then she would tell me exactly how much rice milk (or milk for the boys) to put in ~ not in cups or ounces, but to which line I needed to fill it to. She could not stand the loud noise from the blender, but she tolerated it knowing that her “delicious” smoothie was just seconds away. She really liked to drink out of straws ~ it was a lot easier than trying to hold up a sippy cup, or a regular cup. She rarely drank the “whole thing,” but she would always say, “I drank the whole thing!” She was so adorable, and so proud of herself ~ and we were always so proud of her, too.

Date:

January 07, 2006

Today

Today I was thinking about Morgan’s attitude. She was, of course, always happy, but she was also very determined. There were a lot of obstacles, and difficulties in her life. Some doctors were pretty negative about what goals she would achieve (none of our regular pediatricians, though ~ they were ALWAYS positive). We took Morgan to an expert SMA neurologist just before she turned a year old. He said that he did not think that she would ever be able to feed herself. She was already feeding herself finger foods, and I really had not provided her with much opportunity to feed herself with utensils. The next day, I placed a spoon down in front of Morgan before I was about to feed her applesauce, and she immediately picked up the spoon and began feeding herself. I video taped it to show to the doctor if we ever saw him again (but ~ thankfully ~ we did not). I remember thinking at the time that she must have understood what he had said, and just did it to prove to us that she could. She always did whatever she could for herself. She was so amazing!

Date:

January 06, 2006

Today

I went into Morgan’s room tonight. I looked at her clothes in the closet ~ some that she just loved to wear, some that she never wore. I remembered pulling her shirts over her head. I remembered the exact feel and shape of her shoulders, her ribs, her spine, her tummy. I just love everything about her ~ I miss not being able to give her “raspberries,” that made her giggle. I miss not being able to give her a “back massage.” I miss her tummy that sometimes would go up and down when she was breathing. Most of all, I miss that big beautiful smile that could light up my world. She did not have to say anything to me at all, she would just give me that smile, and I knew that all was right in the world. I’m trying to keep these entries positive, but it is so hard. I want my baby back! It is just not fair ~ not fair to her, not fair to us, not fair to all the people that knew her and loved her! I just want to scream, “WHY??” We tried so hard ~ we tried to learn everything about taking care of her, we took her to the best doctors ~ so how does this happen? I know that there is not an answer for me, now. Someday, I will know ~ why, but it is just very hard right now.

Date:

January 05, 2006

Today

There are so many little things... Naturally, I don’t have quite as much to keep me busy, as I did before. So, I have been thoroughly cleaning my house ~ not that I really care, but it does seem to keep me distracted. I live for distractions. Today I worked in the living room. I cleaned the hard wood floor in there. On the floor next to Morgan’s favorite chair in there, I found one of her hair ties. Just a little hot pink scrunchy. I knew that it must have fallen out one day when I was picking her up from the chair. Then I looked in the chair ~ I remembered seeing her sit there so many times ~ when she just wanted a change of scenery. I quickly turned away from the chair, and I caught a glimpse of her portrait ~ it looked like she was looking right at me. We hung her portrait in our foyer, and she looks like she is looking into the living room. I started back dusting and polishing a table where I have a 5x7 picture of Morgan ~ and I found her favorite Polly Pocket doll. Of course, she has blond hair, and Morgan’s favorite outfit for her was her hot pink snow boots, pale pink sweater, and hot pink bikini. We probably would have had a lot of fashion “discussions” when she became a teenager. I took the Polly Pocket, and placed it beside Morgan’s picture, and said what she would have said to the doll, “Hi Girl!” Then I just cried, and cried ~ Oh, if you could have heard the way she would say that to her dolls ~ she had so much excitement in her sweet beautiful voice.

Date:

January 04, 2006

Today

Today I was trying to gather some of the toys that Judy (our wonderful PT) had brought over for Morgan to play with. I was looking for the pretend eggs, that Morgan just loved to play with. She was so smart ~ one day April (her great OT) and I were working with her and the eggs. Each egg has a different color “chick” on the top, with a different shape on the bottom, then you fit the shape into to egg carton. Morgan had pulled out all six of the eggs, and put them in the “pond,” (which was really a compartment in her favorite table/desk). We were trying to get her to replace them in order (from top to bottom, and left to right ~ like reading). April looked at the first space, and said, “Morgan, can you find the chick with heart shape?” Morgan said, “The green one! The green one!” I thought, “hmmm, Morgan must be confused about shapes, or what we are asking.” So I said, “Morgan, why don’t you look at the bottoms of the eggs and see if you can find the one with the heart shape?” She looked at me like I had lost my mind, but she pleasantly replied (slower ~ so that I could understand, since I did not "get it" the first time), “It’s the green one!” Finally, it hit me ~ the green one must have a heart shape! Sure enough it did. We went through all six shapes and colors, and she had memorized the shapes for each different colored chick! I was so impressed, because I had played that game with her a lot, and I did not even know the shapes for the different colored chicks. Everyday she amazed with something like that ~ Oh, I was just so blessed to have her in my life.

Date:

January 03, 2006

Today

Today I was remembering a day in January ~ two years ago. Morgan was about 14 months old at the time. Bill, Sissy, Aunt Debbie, and I had decided to start a chapter of FightSMA, and we had invited Aubrey (with FightSMA) over to lunch with her friend, Chad. Aubrey is great ~ she has a lot of energy, and is very dedicated to the Fight. Chad was very nice, also, and very interested in SMA. Morgan fell in love with him. She flirted shamelessly with him (14 months old!!) all through lunch, and when Daddy said, “Morgan, you are such a flirt!” Morgan rolled her eyes, and had the exact same expression on her face that a 16 year old would have if her dad had embarrassed her. I laughed so hard ~ she was so funny, and so cute!

Date:

January 02, 2006

Today

Today I have been thinking about Morgan’s skin. It was so soft ~ softer than silk, and just beautiful. Since this past summer, I had noticed that Morgan was starting to develop some freckles ~ just a few light brown (maybe even tan) freckles. She had one about a half an inch under her right eye ~ oddly enough, Zeke has one in the exact same spot, and his developed when he was about two and half years old. She had another one on her right upper arm, and another on her left thigh. She also had a strawberry birthmark that developed when she was about 2 months old. It was on the lower part of her back on the right side. I remember how worried I was when I noticed it ~ I took her right to Dr. Mink ~ he told me that it was not a tumor or skin cancer, it was not harmful, and that it would fade over time. I felt much better about it, and when we went to the Caymans, I bought her a little (0 to 3 months old ~ very little) hot pink bikini that matched her adorable little strawberry perfectly. The strawberry always remained hot pink, but it had started to turn pale in the center ~ I loved that strawberry, I loved seeing it every night, I miss it so much...

Date:

January 01, 2006

Today

Today we started trying to clean the house (that has been a mess since my surgery in November). I was putting clean sheets on our bed, and I could almost see Morgan there. Every morning when I made the bed (which wasn’t very often ~ Bill usually does it before he leaves ~ what a great guy!), I would always take Morgan upstairs with me. I would lay her on the bed, and then pull the sheets up over her head ~ she loved it ~ she would say, “I’m hiding, Mommy ~ I’m hiding.” Then I would say, “Oh no! I’ve lost Morgan! Morgan... where are you?” She would say, “I’m right here, Mommy!” Then I would pull the sheets back, and she would be there with that beautiful, big, bright smile of hers. Then she would say, “Hide me, again, Mommy! Hide me, again!” She could play that game (or any game that she loved) for hours. She was always so happy, vibrant, and she just loved life.

Date:

December 31, 2005

Today

Today is New Year’s Eve, and I have thought about the wonderful New Year’s Eve celebrations that we have had for the past two years ~ the first year Morgan was not really “into” parties, like she was the past two. Two years ago, Zeke and I decorated the kitchen with Happy New Year decorations, while Morgan and Clayton were taking a nap. When they woke up, they were thrilled to see all of the balloons, streamers, hats, and noise makers. Morgan was very excited, but really just wanted to read some books with her big brother, Zeke. Zeke must have read to her for hours that afternoon, and she just loved it. She sat right up on his lap, looking at all the pictures in the books with him. Later, Aunt Debbie and Uncle Billy came over to give them New Years hugs. I remember that Morgan was wearing an outfit that Aunt Debbie had given her for Christmas ~ it was a little jeans overall set with little purple flowers, a matching purple long sleeve shirt, a purple headband, and the cutest little denim shoes with purple trim. Morgan just loved the color purple! By the time Aunt Debbie and Uncle Billy were leaving, Morgan had fallen asleep in the wagon that they had bought Clayton and Morgan for Christmas. She was so beautiful ~ she looked just like a doll baby ~ but, then again, she really was.

Date:

December 30, 2005

Today

Today we drove home from Michigan ~ a long drive ~ 740 miles, but we made it! We stopped at a rest stop (well a lot of them), but at one I noticed a mother with her daughter (a little girl about six years old) going into the rest room. I really missed Morgan... In the rest room, the mother starting yelling at her daughter, and the daughter started yelling back at her mother. They were so mean and ugly to each other ~ I can’t imagine talking that way to Morgan ~ EVER! I am so thankful that we have had such a wonderful relationship ~ it may seem strange to have a deep relationship with a three year old, but Morgan was so much older than three years old. She always knew when I was a little bit “off” and would always offer me a “Big Hug” ~ I would give anything for one of those right now.

Date:

December 29, 2005

Today

Today, our sister-in-law, Penny (who is a firefighter) took us to the Police Station where Bill’s brother, Tom, is a police officer. We saw the jail cell, and Clayton and Kathleen were able to sit in the front of the police car. Then, Penny took us to the Fire Station. Clayton has been a little bit confused about fire trucks, and ambulances, so it was wonderful that Penny was so generous to take us there. She showed them everything on a fire truck, included the lights, and hoses. Then we saw an ambulance. The ambulance was set up just like the one that transported Morgan from the Outer Banks to Elizabeth City last March ~ oddly enough, that is now a happy memory. We were driving from Nags Head back to Virginia Beach, and Morgan had an awful cold. On the trip, her oxygen levels began to drop ~ FAST! We stopped at a rest stop, and had about twenty good Samaritans stop to offer us help. Morgan was blue, and not breathing, and her eyes had rolled back in. It was very scary. The rescue squad came, and let Bill and me take care of Morgan (coughing, suctioning, etc.), until she was stable. Once in the ambulance, Morgan began talking, and laughing, and flirting with the EMT’s like nothing had happened ~ she was so resilient! I was still a wreck, but she was just fine ~ What a girl!

Date:

December 28, 2005

Today

Today we are in Michigan, staying with Bill’s parents. It is wonderful to be here with the family. Last night, we slept on an air mattress, with one of their great down comforters. I remember sleeping on one with Morgan when we would come to visit. Morgan and I loved it, and we slept so good under the down comforter ~ nice, warm, and cozy! At home, whenever Daddy or I slept with Morgan (which was most of the time), she would always inch her way over to us. This is quite a feat for a child that could not walk, or crawl. She just always had to be touching us! The air mattress made it a little bit easier for her to scoot over to me, and it was just great to have her so close that I could feel her breathe. I loved sleeping with Morgan ~ she was always so peaceful and beautiful, and I knew that she was safe.

Date:

December 27, 2005

Today

Today we drove from Pennsylvania to Michigan. I picked up a CD last night called, “One Hit Wonders.” One of the songs on the disc is “Hey MICKEY” by Toni Basil. It was really popular in the 80's, and it was one of my favorite songs. I think I had it on a 45 record, and even made up my own dance to it (I know, what a DORK!). The last time I heard it on the radio, I turned up the music (which, alone was enough to get Morgan excited), and then I picked her up and danced (my dance) with her. Whenever she heard a song that she liked she would say, “Hold me, Mommy. Dance with me, Mommy!” So we would dance, all over our kitchen. I loved to see the excitement, and pure joy on her face, so I would sit her down on the island and take it all in. When we danced, and I acted “crazy” (according to Morgan) she would smile the biggest smile I have ever seen. It started with her eyes ~ oh, how they would just twinkle ~ and spread down to her little crinkled up nose, her big smile, and then you saw those dimples! I just love that smile, and I will always treasure those moments that I blessed to see that smile.

Date:

December 26, 2005

Today

This morning we woke up very early, and drove to Pennsylvania. We just really wanted to get away this week, and it was a perfect opportunity to see Bill's family. Today we all went to ski. Clayton and Zeke had never been, but they both did great. The resort here is so nice, they have snow tubing, although we did not try it ~ maybe next year. The whole way here, I thought about Morgan, and how we brought her up here when she was just two months old. I remember the trip so well ~ she was so small, but she was such a little talker (a lot of "Cooooo", and my favorite, "Hooowww") ~ she must have talked eight hours of the trip. She was so expressive! It was so much quieter in the car today. Morgan loved to make sounds that would make Clayton crazy in the car. They really had a lot of fun with each other!

Date:

December 25, 2005

Today

Well, it’s Christmas ~ our first Christmas without Morgan. It was different ~ for a lot of reasons. We did not get a tree until the 23rd ~ we just didn’t feel like it, but we did ~ we still wanted to make Christmas special for the boys. We decided to put the tree in our den this year, whereas we have always had it in the living room before. I left her stocking hanging by the fireplace ~ I just could not bear the thought of not having it up ~ not yet, maybe not ever. I came downstairs this morning (before the boys did) and the gifts that Santa left looked so... alone, and so "male"... Legos, DVDs, DVD cases in dark blues, nothing pink, nothing that resembled a doll, or Dora, or clothes. It wasn’t the lack of those types of gifts that bothered me ~ it was what those pink and purple presents represent: Morgan. We had a nice time, although even good times are tempered by thoughts that something is missing. I missed my mom grabbing Morgan the second she came through the door, and holding her all Christmas morning. I loved it when Mom held Morgan (on Christmas morning), because I could really look at her, and see all the expressions on her face. Her eyes could talk ~ she had the most expressive eyes I have ever seen. You could tell if she was happy, angry, sad, excited, or thinking just by looking at her eyes. She just loved sitting on my mom’s lap all Christmas morning ~ and my mom just loved it, too. I know that today must have been especially hard for her, not having her “girl.” All that we can do is try to remember, “It’s a beautiful day!” Merry Christmas to all.

Date:

December 24, 2005

Today

Last year on Christmas Eve, I was busy wrapping presents, and making sure that I had everything I needed for Christmas. This year, I had already bought Morgan a few things for Christmas before... before December 3rd, and every time I come across something that I did not have a chance to give her ~ I just break down. I bought her some tiny nail polishes, because she was so good at painting her nails. Oh ~ how I wish I had given them to her the day I bought them. They are the perfect size for her, and she would have loved the colors. This year, we decided that we want to include Morgan in our Christmas, so we decided to cut out the things she would like from the toy ads. Clayton had a fit at a toy store, a few weeks ago, and when he finally was able to verbalize what he felt, it turned out that he was confused when he saw things that he considered to be for a girl: Morgan. Every time he and Morgan saw anything on television, they will quickly decide whether it was a boy (Clayton) or girl (Morgan) toy, and they would say, “We have to get that for Morgan/Clayton!” I explained to Clayton that we could still see things that we want for Morgan, but instead of buying it, we would ask God to please make sure that Morgan had it, and to let her know that Clayton (or Mommy, or Zeke, or Daddy) wanted her to have it. He liked that idea, so we are going to try the envelopes. When the boys open a gift, we will open an envelope for Morgan, explain why we thought she would like it, and ask God to make sure that she has it. I hope that it will help us all through Christmas.

Date:

December 23, 2005

Today

I’m going to explain why I call Morgan, “Morgan~Morgan.” Of course, her name is Elizabeth Morgan Saville, and we would have named her Morgan Elizabeth Saville, but we did not want her initials to be MES, so Elizabeth Morgan it was. When she was first born, Clayton was 14 months old, and he could not say “Morgan” at all, so he started to call her Mo-mo (sounds like “Moe Moe). Naturally, we all called her Mo-mo. About a year and a half ago, Morgan realized that her name was Morgan. We sometimes called her Elizabeth Morgan, and she would say, “My name is not Elizabeth, my name is MORGAN Morgan Saville!” It was so cute! So, we started calling her Morgan Morgan. One more thing, I’d like to wish Suzanne’s (Morgan’s godmother & my dear friend) a very happy birthday! Suzanne has helped me with all aspects of Morgan’s care since the beginning ~ thank you so much for all of your generosity, and support. Suzanne’s daughter is Erinne, the coolest 8 year old around! She plays hockey and soccer in her wheelchair.

Date:

December 22, 2005

Today

Today I was thinking about an appointment Morgan had for her TLSO, and DAFO’s fitting. The TLSO is a fitted torso "shell" that supports her trunk. The DAFO’s are to keep her feet from "dropping" ~ we always called them her “shoes.” It was a little over a month ago, and Mr. Gary cast her feet for the DAFO’s. He did wonderful, and explained everything he was doing to her as he cast the first one. She was interested, but a lit bit suspicious. Once he started the next foot, she was extremely interested, and kept giving him suggestions on how to perform the task of fitting her. She was so smart! Next came the TLSO fitting. They were going to have to cast her chest and abdomin. First, she was not very happy about having to take off her clothes ~ she did not like to be cold at all. So, she decided to give us ALL the silent treatment. Casting for a TLSO requires someone to hold her upper body, one to hold her lower body, and one to actually do the casting, (and, of course, Mommy to rub her legs and talk to, and comfort her during the process). The man that came to hold her upper body was so funny ~ he was telling jokes ~ jokes that she would normally at least crack a smile at ~ and he was just being so much fun. BUT, Morgan just laid there totally stone faced. Not a twinkle in her eye, not even giving us a hint of that beautiful little smile. After about five minutes of talking and joking with her, he looked at me and said, “Does she hear anything at all?” I laughed so hard, that even Morgan could not hold back a little bit of a grin. He really thought that she was deaf ~ that SILLY GIRL! She was so amazing, and stubborn, and funny, and beautiful ~ I love her so very much!

Date:

December 21, 2005

Today

I found this morning activity we did in preschool each morning. I had typed it up for Daddy the night before the Fall Fair. Morgan had a little bit of a cold, so she was going to stay home with Daddy in the morning ~ and I knew that she was going to want to go to school. Reading it I can almost hear her sweet little (and sometimes very loud) voice. You say: Good Morning, Morgan. Morgan says: Good Morning, Daddy. You say: How are you today? Morgan says: Fine, thank you, and how are you? (Sometimes she forgets to ask, so you can prompt her with “And?”) You say: Fine, thank you. Would you like to sing “The Good Morning Song”? Morgan says: YES!! Push “PLAY” on the CD player ~ it is the first song. Please remind her to sing LOUD! She was so smart, and loved to sing ~ I am so grateful that we started the program, and that she loved it so much!

Date:

December 20, 2005

Today

Today I have been thinking about how Morgan just loved to go to her home preschool ~ she would say every morning after her "latte," "I'm ready to do some work!" She was such a hard little worker, with a great attitude! I'm so proud of her!

Date:

December 19, 2005

Today

Zeke and I were thinking and talking about a night not too long ago ~ within the last two months. We were at dinner, and (naturally) Clayton ended up getting in trouble, and having to go to his room. Morgan (pretend) cried, "Daddy, don't leave me ~ Come back!" Zeke said to Morgan, "Morgan, it's okay ~ I'm here." She said, "No, Zeke." Zeke said to her, "Okay, then I'm not giving you your birthday presents." She completely ignored him, and picked up a french fry, and threw it at his leg. Then she said, "Ooops! I dropped it!" with the cutest little devilish grin. Now for a child with SMA, picking up a french fry and throwing it requires some effort ~ not a lot, but some. Zeke was amused by this, and he said, "Okay, Morgan, now I'm not giving you your Christmas presents either." Of course, she ignored this, also, and once again bombed him with a french fry, and said, "Ooops! I dropped it!" She was so cute, and funny, and smart! I love her so much!

Date:

December 18, 2005

Today

Tonight Bill and I were in Morgan's room. It is really nice there ~ it is comforting to be in her room with her things. Her clothes, her stuffed animals, her toys, her heart shaped name that she painted on the door. She really did not spend a lot of time in that room. But we had fun going into her room to get ready for bed, after her bath. She loved to have her lotion (cotton blossom) rubbed on her legs every night. She always smelled so good.

Date:

December 17, 2005

Today

Today I was in the white van, and I noticed the purple flower Morgan picked out at the dentists office. They had a good check up, but Morgan cried most of the time. She really did not like the idea of anyone looking at her teeth. She was so funny, because for weeks before we went to the dentists, she was practicing how big she was going to open her mouth, and she was doing great ~ really opening it nice and big. Of course, she did not do that in the office. In fact, most of her doctors believed that most of her strength was in her jaw. Anyway, when we left, Sissy (my mom) helped Morgan pick out a prize, which was the purple flower, and a sticker. Morgan loved the color purple, it was her favorite color ~ just like it was Sissy’s favorite color. Morgan was so happy in the van, holding her purple flower, and waving it around. I asked them how they liked going to the dentists, and they both said they loved it. Morgan was too cute ~ here she had just cried for a half an hour, but one purple flower later, she just loved the dental visit. Silly girl!

Date:

December 16, 2005

Today

Today I was thinking about a day this past summer. It was Labor Day weekend, and we were driving over to my mom’s house for a cookout. Morgan had been on the news the night before ~ kind of a preview to the MDA Telethon. We were stopped right at the light in front of our church, so I was able to turn around (and check on Morgan). Clayton being just a normal big brother said, “Morgan, you were only on the TV because your feet don’t work.” And she replied, “My feet do too work!” and she wiggled her little feet. She was too cute! So indignant that he would say her feet didn’t work, when they clearly did. She had such a great attitude!

Date:

December 15, 2005

Today

Today I was thinking about Morgan's hair ~ she was so bald when she was born, and still after a year ~ Bald! I was starting to get worried when she turned two, but her hair came in ~ FAST! She went from basically bald to a full head of hair in no time at all. Her hair was so beautiful ~ blond, like the color of honey and wheat ~ with just a touch of strawberry. It was so soft and silky. She hated it when I would brush it out after her bath. She would complain that I was hurting her. Daddy had the right technique. He would ask her how her day was, how her friends were, and really made it a much more pleasurable experience for her. Even when I tried with that approach, she still complained. She was so funny ~ I would say, “Morgan, I have not even touched your hair yet.” But she was still complaining. Once she started to wear her bi-pap at night, we found that we really needed to keep her hair out of her face. We would put her hair in pigtails, and roll it in soft curlers. She was just gorgeous with her hair curled, straight, up, down, in her face ~ she was just beautiful. She could not stand to have her hair in her face, or mouth. Daddy liked to get hair out of her face by blowing it off ~ usually, he was holding her when she had hair in her face. She would say, “Hair in face,” or “Hair in mouth.” This later turned into her telling us very slowly, and very clearly, “There is hair in my mouth.” She was so good about telling us what she needed, and when she needed it. I have never known anybody that knew their bodies or needs better than Morgan did.

Date:

December 14, 2005

Today

I love the way that Morgan loved to go to the "potty." Morgan was pretty much potty trained at 18 months old. I think that for her going to the potty was more like an activity, than a chore. She would talk, and laugh, and look all around the bathroom ~ and she was so good at going potty. After about ten minutes of her talking I would say to her, "Morgan, it is time for you to concentrate." and she would say "I am concentrating, Mommy." Then she would be quiet for a minute or two, and then she would start talking about something else, and completely derail me from trying to get her to go. She was and is so smart.

Date:

December 13, 2005

Today

This fall Clayton and Morgan and I have been working on name recognition. I wanted them to be able to recognize their own names when they saw them. We had flash cards, and a lot of name projects. Morgan always left the "g" out of Morgan when she spelled her name. One day about two weeks ago, Clayton was being so silly, and I asked Morgan if she knew what "T-R-O-U-B-L-E" spelled, and she said, "Clayton," and then she just laughed. She was so smart and so funny.

Date:

December 13, 2005

Today

Tonight, I was talking on the phone with Suzanne, and our Carbon Monoxide monitor started to chirp. Suzanne heard it, also, and suggested that the battery was going dead. I walked over to look at, and saw that it was plugged into the wall. I told Suzanne, "Clayton must have done something to it." Poor Clayton ~ he gets blamed for everything. Then I started to stand up, and I saw Morgan's picture. I told Suzanne that Clayton had been asleep for about an hour and a half, so it was not really likely that he did anything that had just started. I unplugged the monitor from the wall, and the chirping seemed to stop for about 15 minutes ~ then it started again. I looked at the monitor to see if there was a battery ~ so, I tried to get it out, but I just could not. I put the monitor in our kitchen on the island, under a towel, and the chirping again stopped. I sat down right here at the computer 20 minutes later ~ and it started chirping again. I have heard some parents that believe that their angels have a hand in extraordinary things ~ I think I may just believe that Morgan was here playing with that monitor ~ it makes sense ~ she always liked to see my reaction to her monitors. Morgan, I love you so much ~ but I think we are going to have find something else for you to play with! XOXO

Date:

December 12, 2005

Today

Morgan just loved music ~ and loved to sing. On Saturday morning, we were starting on Christmas songs, and I played "Rudolph the Red Nosed Reindeer" on the CD player, and after the first time, Morgan knew every word to the song. I can almost still hear her singing it, with a great big smile on her face.

Date:

December 11, 2005

Today

Morgan would wake up in such a good mood. Everyday she would say, "It's a beautiful day!" And about once a week, she would tell us that she had "All the good dreams." We would ask her what her dreams were about, and she would say, "The princess threw me in the trash." We always said that we were glad that she didn't have any bad dreams, if that was her "all the good dreams." Morgan Morgan, I hope you know that last night I had a dream about you ~ I dreamed that you were in the hospital ~ but it was set up much more like a five star hotel (more your style). I dreamed that they told us that you were not going to make it, but you did ~ your tummy started to move up and down like it always did when you were breathing on your own, and I called Daddy over to look at your tummy, and you opened up your beautiful eyes and smiled right up at me, and said, "Hi Mommy!" and then you turned your head to look at Daddy and you said, "Hi Daddy!" Then I woke up! I wish I had stayed with you longer. Thank you for dropping in to say Hi! I love you, and miss you so much! All my kisses to you baby girl!

Date:

December 10, 2005

Today

I am so grateful that there are no cough machines in heaven, and that you don't have to try to trick me into not coughing you ~ you silly girl! Morgan Morgan ~ I love you.

Date:

December 10, 2005

Today

Here is my first positive entry: I am thankful that Morgan never had a pneumonia. She only had one really bad cold that required a hospital stay, but she never did have a pneumonia, and for that I am grateful.

Date:

December 10, 2005

Today

We would like to thank everyone for all of your support, prayers, and sympathy throughout this past week. I would like to thank each person who has contacted us, because everyone's thoughts and concern have meant so much to us, and truly helped get us through this week. I am trying to write down everything that happened Saturday, but it is so very hard, and it may take me a while. After I have done that, I am going to try to write something I remember about Morgan each day ~ something wonderful, and positive. I hope that by doing that I can come here and read all the great things about her, when the pain is immeasurable, and the loss I feel without her makes me feel empty deep in my chest. If you visit Morgan's site, please leave a message on the guestbook, or let us know that you are thinking about Morgan ~ it is very comforting to know that other people cared so much about our little girl. Morgan baby, words are just not enough ~ I love you so much, and I miss you so very much ~ we are always best girls.

Date:

December 06, 2005

Today

I had a dream about her ~ It was so great ~ We ~ Suzanne, Morgan, Erinne, Tonya, William, Laura, Annette, Madison, Aunty Michelle, Amy, Lily,Kim,Skyler, and myself were at a table ~ a big table on a boat ~ not a climate controlled boat ~ it was open, we could feel the air, and wind ~ and other the rest of the boat was filled with other SMA families, I don't remember who exactly. I remember looking at William, Morgan and Erinne and I noticed how well they were sitting up ~ straight as can be ~ I was so proud of them ~ and then I noticed that Lily and Madison and Skyler were sitting up too. They were all just fine ~ they had found the cure to SMA! And we were celebrating that Morgan was okay ~ that what happened this weekend was a big scare but we were all so thankful that she was okay ~ but Bill was not around, so I had to tell him ~ tell him it was all a mistake ~ So I woke up to tell him ~ AND THEN I REALIZED IT WAS JUST A DREAM!!AAHHH!! I can barely type ~ just tears are pouring, but I wanted to write this down. This might seem like a good sign ~ like she visited me ~ right now I am so mixed because I feel like I just lost her all over again. Oh Morgan, my baby, I miss you so much! You are my best girl! I love you! I love you! I love you!

Date:

December 05, 2005

Today

Morgan earned her angel wings early Sunday morning. She was the happiest, smartest, and most vibrant little girl we have ever known. The PICU doctors at CHKD did everything they could to keep her alive. Thank each and everyone of you for your support and prayers. All of our love, Stacy, Bill, Zeke & Clayton

Date:

November 21, 2005

Today

Well, we have had an interesting weekend. Morgan had a fever Thursday night, and complained that her ear was hurting. She seemed much better Friday morning, which was great because I had to be at the hospital by 11:30 for my gall bladder removal surgery Friday. I was very nervous leaving her, so Bill stayed with her, and my mom went with me. My mom (who is the best mom) stayed with me until they rolled me into the Operating Room. She then talked to Bill, and he felt that Morgan was doing well enough to stay with her (my mom) so that he could come to the hospital and talk to the surgeon after the surgery was done. The doctor told Bill that the surgery went fine, and I was released soon after. I did make two more trips to the ER for pain on Saturday, and ended up staying overnight Saturday night. I felt much better on Sunday, and was even able to watch a little bit of Extreme Home Makeover. They did a wonderful segment for an adorable little boy with SMA. It was great to see SMA on national television, and a little boy get his dream home that is so accessible to him.

Date:

November 14, 2005

Today

Well, today was a BIG day for us. This morning Morgan & Clayton (bad mommy for waiting so long) went for their first dental visit. I asked Sissy (my mom) to come with us because I thought they would need one on one attention. Sissy immediately volunteered to be the “one” for Morgan. When we arrived, I had to fill out some paperwork, so Sissy sat (smiling) with Morgan, while Clayton proceeded to jump from chair to chair in the waiting room. When I finished up, they called us back. They were so nice, and asked if we wanted Morgan to just let Dr. Scott take a peak, or if we wanted to have her teeth cleaned. I decided that we should go ahead and try to get a cleaning in, but if it was too much for her, we would stop. They sat Clayton and Morgan down in stations next to each other, and asked me to step away so they could take some pictures (x-rays) of Clayton’s teeth. I walked over to Morgan and she was getting nervous saying, “Mommy, hold me, hold me.” I tried to calm her down, and I looked over to Clayton, who was as happy as can be, looking at the cool toothbrush they were going to use on his teeth. So, I stayed with Morgan a little while longer. She cried, mostly because she just did not want her teeth cleaned. When they finished with Morgan, I looked over to Clayton, and he was GONE! They had already finished with him, and he was checking out the toys and video games. Dr. Scott looked at their teeth. He showed me some jaw stretching exercises for Morgan, and assured me that the upper portion of her mouth is not being pushed in from the bi-pap machine (like I was worried that it was). He reported that they both had great teeth and no cavities. YEAH! It was a great experience for both of them, and they both kept showing off their beautiful clean smiles all day. I am so thankful that we have found such a great dentist for our children! This afternoon we went to look for a bigger van. We have decided that with so many trips planned to Detroit this year (and Florida in March) we needed to have a vehicle that is very child friendly on long trips. We found and bought a Ford Eclipse Conversion van. It is not brand new, but it is practically new has been well taken care of. It has a fold out bed in the back, which will be great for the children, a TV / VCP and we are going to have a DVD player installed next week. It also has a separate radio / CD player in the back for them. They all love it! Morgan sits high enough to where she can really see a lot that is going on outside (she did not even look at the TV on the way home ~ she was looking outside). Clayton just loves the TV. He has figured out how it works, and where the remote control is. Zeke loves the pull out bed in the back (I think he wanted to sleep there tonight) and of course the CD player, and TV. AND, speaking of Detroit, we have our first dates for the trials ~ MORGAN IS ON THE SCHEDULE!! She will be evaluated on December 14th and 15th, and then we will return to Detroit January 11th and 12th when she will be started on the placebo, or the Valproic Acid, and Carnitine. We are very excited, and can’t wait to make the first trip!

Date:

November 08, 2005

Today

October 31, 2005 Morgan (and Clayton) finally seem to be over that awful cold they had. Tonight Morgan was able to dress up for Halloween. She was a Bumble Bee, and starting the day singing, "I'm bringing home a baby bumble bee..." She went trick or treating around our neighborhood for about an hour and a half with her Daddy and brothers. Clayton was a leopard, and Zeke was a scarecrow. They all had a great time, and had a ball checking out all of their treats.

Date:

November 08, 2005

Today

October 29, 2005 Today is Morgan's third birthday. It seems hard to believe that is has been three years since I first laid eyes on the most precious little girl I have ever known. She is so happy, funny, and smart ~ everything I could ever want for my children. She had a great day filled with family, and a beautiful Barbie princess birthday cake that "Nana" brought over bright and early Saturday morning. She loved blowing out the candles on her cake, and opening her presents!

Date:

October 11, 2005

Today

Where has October gone? Morgan started a cold on Saturday October 1. We placed a ng tube for feeding on Sunday October 2, and began our "hospital protocol" ~ 24/7 bipap, neb treatments, the vest, coughing every four hours (PLUS coughing as needed). Thankfully, she is not running a fever and she can come off the bi-pap without dropping her O2, or increasing her heart rate. She is also in a great mood, and ready to eat some pizza! She is such a doll ~ she just is so happy! This morning before her treatment, her lungs sounded clear. She did great through the neb treatment, and 20 minutes on the vest. Then I started to cough her, she did fine with that. I increased the humidity on her bi-pap, and the water in her Vivonex. Her lungs sound clear, so hopefully we are near the end of this cold.

Date:

August 29, 2005

Today

Today Morgan had physical therapy with Judy. Judy brought a baby cabbage patch game over for Morgan to play. Lately, Morgan has not wanted to work for Judy, so Judy is trying some new approaches with Morgan. Judy is so patient. Morgan did not complain (much) today when it was time to work, so I think the game worked. I explained to Judy what Dr. Bach told us about trying to get Morgan to expand her lungs a bit more. Then we worked with Morgan to get her to take some deep breaths. We could really see her lungs, and chest expand well. Today we also had a new bed delivered for Morgan. It is wonderful! It is electric, and goes up and down, and best of all it vibrates. Morgan just loves movement, and the vibration is perfect for her. Two (really wonderful and generous) men brought the bed over this morning, and we set Morgan up on the bed. She just loved it, and within 15 minutes, her favorite new expression became, "Mommy, I need MY remote." I did not realize it right away, but there is a clip on the remote, so now it will never be far from her (I'm sure). Today was Clayton's 4th birthday. We had a little party for him when Daddy got home from work. He opened presents, and then we all went outside to see sparklers and snakes that we bought on the way home from seeing Dr. Bach. Morgan's cold is much better. It seems to be just in her head, so that is a really good thing. I get so nervous when she is sick. You just never know what a cold is going to do. Finally, we are praying for all the people in the path of Hurricane Katrina. I hope to hear that our friends in and around the Gulf Coast are safe soon.

Date:

August 26, 2005

Today

Good news!! We are driving!!! Morgan has a joystick that she can move ~ it is just bittersweet to see her go now ~ for a year she has had a power chair and has not been able to go, but now she can and it is awesome! I just wish that she had had that ability for the past year ~ Oh well, she is driving now and that is all that counts! The bad news, is that I think Morgan has a cold. It seems to be a head cold with a lot of post nasal drip. Her lungs are very clear, and she has a lot of air movement, so hopefully we can keep it in her head. She was coughing on her own tonight, more than I have ever heard her cough before, so I am going to just cough her as much as she needs it, and give her as much bi-pap time as she will tolerate. She is so good about telling me what she needs when she needs it, she is just an amazing little girl, and I am so proud of her.

Date:

August 26, 2005

Today

August 25, 2005 ~ We are back from New Jersey, where we saw Dr. Bach and Lou. We stayed the night before in Princeton which was about an hour outside of Newark. Dr. Bach started the second we got into the examining room. He had four students and Lou with him. I laid Morgan down on the examining table, and her legs frogged (is that a word?) out. Dr. Bach asked if her hips were dislocated, and I said no. He said that even if they were, it was not a problem, unless it caused her pain. Then one of the students straightened her legs. He called Dr. Bach to look, and they all were surprised that she did not have any contractures. He liked her DAFO's, also, and how flexible her ankles are. Next, he looked at her Benik body suit. He thought that it did a good job of keeping her straight. Without the Benik, her curve (while still flexible, and is minimal when she is laying down) is around 30 degrees when she sits without support (Mental Note: NEVER let Morgan sit without support). We are having another "turtle shell" made for Morgan, and I am very hopeful that they will not make it for her to grow into like the last one. Of course the reason we went up there was to see about her sunken chest. Dr. Bach was not overly concerned about it, and said that we should lower her bi-pap pressures to epap to 2, and increase the ipap to 16 or higher if necessary. Her settings before were 14/3. Then he started thinking and he said that with the LTV we could reduce the epap to 0, and the greater the span between ipap and epap would pop her chest back out. He has never heard of the Nuss procedure, but thought carefully about it, and concluded that it must be for congenital deformities, NOT SMA. He said that with SMA, if a person has "pectus excavatum" it is because the lungs are not getting the expansion that they need. He also recommended that we use positive only cough assist sessions, when Morgan is not sick. I have been coughing her every night (since she was 10 months old) with positive and negative pressure. And this afternoon (drum roll, please) Morgan is getting her new joystick!!! After almost a year of not being able to drive we will have a new joysick (I hope this works for her!).

Date: March 23, 2005

Today

On March 12, as we were heading back from our vacation in Nags Head, Morgan’s saturated oxygen content started to drop (“crash”) ~ it went from 98 to 82 instantly. A normal range is 92 to 100. We were driving, and I told Bill we needed to pull over. By the time we reached the rest stop her oxygen had dropped to 62. I unplugged the monitor, and jumped out of the car with her in my arms. Bill grabbed our Cough Assist machine, which forces air into the lungs, and then pulls it out. We needed to find a wall outlet, as the machine will not run off of a normal inverter. He found an outlet under a water fountain, but it appeared to not be functional. At that moment, we were lost in total despair. Morgan was bluish purple, and her eyes had rolled back into her head. She was not breathing at all. We tried to perform CPR, but she was still not moving air. Bill, and a good Samaritan (who earned her place in heaven that day), named Tracy found outlets in the maintenance room. We rushed Morgan to the maintenance room, and I tried to “cough” her. The paramedics arrived quickly. They let us resuscitate Morgan, and offered any assistance they could provide. I continued the coughing for quite some time, as Bill held Morgan's head to keep her airway open. Tracy, held Clayton (our three year old), and anyone who knows Clayton, knows this is quite a task in itself. Morgan's oxygen slowly increased, and she finally reached 96. The paramedics tried to get us to the ambulance, but we wanted to be certain that Morgan could maintain her stats before we left as the ambulance did not have a pure sine inverter on it, either. After she had been stable for about twenty minutes, we were ready to be transported. We were taken to Ablemarle Hospital in Elizabeth City, and later transferred to CHKD. At Ablemarle Hospital, they started an IV line for Morgan, as she was getting dehydrated, and they took chest x-rays. The x-rays seemed clear, and we were thankful that she did not have a pneumonia. CHKD sent KD1, their state of the art mobile intensive care room on wheels to pick us up (I really want one of these). The team they sent included a respiratory therapist, two intensive care nurses, and a paramedic. Morgan was able to watch “Dora the Explorer” during our trip. When we arrived at CHKD, we were admitted into the Emergency Room, and within twenty minutes, we were transferred to the PICU. Throughout the night, and the next few days, Morgan continued to have “crashing” episodes. Morgans lungs looked relatively clear on the x-rays, but her chest sounded awful, you could actually feel the congestion in her lungs just by putting your hand on her chest. On Sunday, Morgan was so dehydrated that when she cried, she would say, “Mommy, I’m crying.” because she did not have any tears, and she wanted me to know she was crying. Morgan really amazed me during this hospitalization. She is of course, very communicative, but I had no idea how well she knew her body. She would asked to be coughed (“Cough me, please.”) and to be suctioned when she needed it. She started the stay very polite using “please” and “thank you” a lot, but after eight days, she would asked, “Almost done, yet?” and “Can we go home now, Mommy?” By Monday, you could see atelectasis (areas of collapse) in her left lung. We continued breathing treatments throughout the next four days every four hours. These treatments included three 10 minutes sessions on her ThAIRapy Vest, coughing with her Cough Assist machine in between each Vest session, and deep suctioning to get all of the extra secretions out of her lungs. We had just received the Vest less than two weeks before Morgan’s hospitalization. The Vest fills with air, and performs high-frequency chest wall oscillation (basically, it produces mini-coughs to break up any congestion in the lungs). Morgan is not fond of these treatments, that she calls “Shake & Bake.” Morgan stayed on her bi-pap machine 24 hours a day for eight days. The bi-pap is a machine that helps her take deep breaths. When she takes a breath, it triggers the machine to add positive air pressure (PAP) to her inhalation. When Morgan exhales, the machine still delivers a positive air pressure, at a lower flow, so that her lungs will not completely deflate. On Tuesday, they placed a feeding tube, as she was still not eating or drinking. By Thursday afternoon, Morgan was not getting any worse, but she was also not getting better, so in essence she was worse off. We were running out of treatment options. The intensivists (the doctors who care for patients in the PICU) decided to try using Mucamist and Albuterol. Mucamist is an inhaled drug that breaks up thick mucus, and Albuterol is a bronchodilator (dilates the airways to improve breathing). At that time we also adjusted the pressure settings on her bi-pap machine to 14 inhalation and 4 exhalation, and the Cough Assist to 35 inhalation, and 35 exhalation. One of our favorite Respiratory Therapists (and CHKD has the best Respiratory Department), also suggested that we keep Morgan in the Trendellenberg (head tilting down) position. They even brought a new crib in that would go into that position. By Saturday, Morgan had turned around so much that we were able to try her off the bi-pap machine for up to three hours. On Sunday, we were transferred out of the PICU to the PICU “step down” unit. We stayed in that unit for one night, and were transferred to the Transitional Care Unit on Monday. From Sunday night on, we were allowed to do all of Morgan’s respiratory therapies ourselves. The intensivist gave us the okay to put her back on a normal diet, however, she was not interested in eating until Monday. They stopped the feeding tube around 10:00am, and by noon Morgan was hungry. She started with yogurt, and when her oldest brother, Zeke came to visit her that afternoon, she had him running all over the hospital looking for whatever she wanted. The first thing she asked for was “Cheetos,” she ate two or three and then she asked for “French Fries.” I am pretty sure she was trying to take advantage of us, because her next request was for “candy,” and she has never (to my knowledge) had candy. My precious little girl was turning into the Queen of Carbs! She did finally start eating healthy foods by dinner. We returned home (via ambulance) on Wednesday, and just four days later on Easter Sunday she was back to her old self ~ playing, eating, and reading again.

Date: November 6, 2004

Today

SMAsquerade 2004 ~ On a beautiful Saturday evening in November, some wonderful and generous people gathered at the Ramada on the Beach to celebrate the advances made in SMA research, and raise funds to continue research efforts. The First Annual SMAsquerade was a great success! The food provided by Mahi Mah’s was fantastic, and plentiful. We had sixty-four silent auction items donated by various businesses and individuals, and an additional 13 live auction items. Guests started the evening bidding on the silent auction items, and later danced to music provided by Astro DJ’s. Morgan, our beautiful daughter, and inspiration, joined the party for about 45 minutes. She loved seeing so many people, and the music, and lights that filled the ball room. Just before the Live Auction, we played a videotape that explained what SMA is, and how close it is to being cured. SMA is a devastating disorder that robs our children of the ability to walk, or even sit up on their own. We have been told that the prognosis for Morgan, who has a less severe type of SMA, is still quite grim. Over time, she will lose the ability to sit without support, develop severe scoliosis, endure numerous long term hospitalizations, lose the ability to swallow and even breathe on her own. I thank God everyday for Morgan, and her health. Time is crucial in our fight. Everyday she runs the risk of catching a little cold, or even just choking and developing pneumonia. Your support is bringing the day that we won’t have to worry about these things closer. My mother, Mary Landon Peabody, had an opportunity to thank all of the people who helped us organize the event. Now, I would like to thank the thoughtful and generous people who made the SMAsquerade such a terrific success! Bill Schmidt, an award winning wood carving artist, created several wood carvings for the SMAsquerade, and also collected art from his fellow artists for the auction. Bill and his wife, Becky were there throughout the planning stages and always ready to help. Jennifer Roberts, Barry Michaels, and Jim Long with Oldies 92.9 donated several auction items, including a “Richard Petty Ride Along Pass.” They have helped tremendously in raising awareness of SMA. The Live Auction was conducted by Auctioneer, Colonel Buddy Tucker. Not only did Colonel Buddy donate his time, and advise us on planning the live and silent auctions, he also sold 250 raffle tickets. Dottie Osio-Vale, contacted several of the Virginia Beach hotels, and obtained four two-night certificates for the auction. Dottie is an amazing person who has fought SMA for over twelve years. In February, 2004, she lost her beautiful son, Leo, to SMA. Tammy Dwyer, also helped by inviting several of her friends to the SMAsquerade. Tammy, whose daughter, Nicollette has SMA, was also ready to help. One of the people that Tammy invited was Shannon Menninger. Many of you that attended the SMAsquerade may remember the beautiful quilt that Shannon made. Shannon also has a special connection to SMA. Her nephew, Christian has SMA. I would also like to thank Brenda Twisdale, who donated two beautiful Lladro figurines for the auction. She also obtained a diamond ring for the auction donated by her hairdresser, Diane Cruz. Rob Baxter, Cathy Rothman, and Mary Williams helped us gather auction items, either by donating them themselves or by asking businesses to donate items. Tory Beasley helped gather and pack all of the auction items on Friday afternoon, and delivered them to the Ramada. Chris and Kelly Hall, Wes and Kim Price, Ron Baxter, Margaret Baxter, and Carrie Reeves were terrific volunteers. They set up displays like professional decorators. Chris, Kelly, Wes, and Kim ran the registration and check-out tables like accountants. Ron and Margaret both obtained sponsorships or auction items from their employers. Carrie took pictures all night long, and also had a beautiful banner donated by Archbell Signs where her father, Ed Million III works. My grandmother, Frances S. Baldwin helped us with invitations. She has several generous and caring friends that have been quite interested in Morgan and her battle with SMA. My brother and sister-in-law, Billy and Debbie Landon helped pick up auction items, and donated items for the event. Debbie also worked on getting sponsorships, addressing invitations, and doing anything that I needed help with. My aunt, Elizabeth A. Landon has done so much. She donated items for the auction, sold raffle tickets, addressed invitations, and was always ready to help. My husband, Bill has helped me in so many ways. He helped me organize the auction items, and plan my time before the event. Our children have been so wonderful and patient, also. I would like to thank my mother, Mary Landon Peabody. Each weekend for the two months before the SMAsquerade, my mom and I would go out and try to get companies to donate auction items. She encouraged me, supported me, and stood there right beside me. She has taught me everything I know about being a mother, and I am so thankful that she has been mine. Finally, I would like to thank all of you for your support. Your well wishes, and prayers for Morgan have helped her so much. She is doing great. She counts to forty in English, and to ten in Spanish. She is using the computer, and the therapist recommended that she use kindergarten or first-grade software, before she turned two years old. We would like to thank each person that attended the 2004 SMAsquerade, and those that were there in spirit. We were hoping to raise $5,000.00, which would have been great. However, we raised $26,047.84 Thank you! Thank you! Thank you! * * * * * * * * * * * * * * * * * * Please remember our wonderful sponsors and the generous companies that donated auction items as you are shopping this holiday season. And please be sure to tell them that you are one of Morgan’s Buddies. BeJeweled * Lynnhaven Fish House The Cheesecake Factory * Starbucks Circuit City * The Sharper Image Costco * Farm Fresh * Rock-Ola Café American Rover * North Carolina Aquarium * Surf Rider Restaurant Cobalt Grille * Hurrah Players Virginia Living Museum * Beach Accents * Pinboy’s At The Beach Steinhilber’s * The Carrie B * The Mariners’ Museum * Travelodge Virginia Beach * The Old Coast Guard Station * Outer Banks Resort and Conference Center Ramada Plaza Virginia Air & Space Museum Oldies 92.9 * Greenbrier Country Club Curves for Women at Haygood JonTori Da Gallerrie * Penguin Isle Toliver’s Mobile Detailing * Wood Carving Artist, Bill Schmidt * The Founders Inn * Oyster Point Days Inn Virginia Marine Science Museum Mermaid Charters * Archbell Signs * Cool & Eclectic Furniture Decoration Station * Il Giardino Portsmouth Museums * Seascape Interiors * Artist Thelma J. Peterson * Croakers * First Landing Books * Virginia Beach Resort Hotel * The Lucky Star Rudee’s on the Inlet * Cinema Café Ocean Breeze * Kane Marie Gallery * Doll Maker, Vera Miller Folk Artist, Jack Wooley * The House of Capodimante * Folk Artist, Bill Burton * Owl’s Creek Golf Club * Virginia Beach Massage * Ramada on the Beach Comfort Inn Oceanfront * Holiday Inn Olde Towne * Roger Brown’s Restaurant * Virginia War Museum * Cutn’ Loose @ Diane’s Clarion Resort * Boardwalk Villas Turtle Cay * Roses Stores KPMG LLP * Diamond Auto Glass * Sun Trust Bank * Johns Brothers * C.I. Travel Please remember: • Spinal Muscular Atrophy (SMA), is the NUMBER ONE genetic KILLER of CHILDREN under the age of two. • One in every 5,000 babies is born with SMA. • One in every 35 people carries the gene that causes SMA. • SMA can strike anyone of any age, race or gender. • SMA is the most likely disease to be cured within the next four years according to the NIH.