Name:

Laura

Email:

Date:

02 Dec 2000

Time:

15:47:38

Comments

Hi Conner, I'm just testing this thing out and make sure people will be able to write to you. Your family loves you very much!!

Name:

Mommy

Email:

Date:

03 Dec 2000

Time:

15:31:45

Comments

Laura, this is great! Thanks so much. I will continue to update you, friends and family, on this page about Conner's care and health. He is doing fine today. I dressed him in a cute red pajama outfit Grandmommy Connie got him yesterday. We are doing pictures later so I will post. He is sleeping so nicely right now to Christmas music. I am forcing myself to get into the spirit-for Conner. He has a right to have the best Christmas possible even if we are all a bunch of depressed crazies right now.

Name:

Stephanie McNeil Smith

Email:

stephaniejune@prodigy.net

Date:

04 Dec 2000

Time:

10:12:44

Comments

John and Betsy-

What a beautirul page. Stacye forwarded me the site. He is such a beautiful boy. Please know that you and your family are in Tim and mines prayers each and every night. May Gody Bless you.

Stephanie and Tim Smith Greenville, North Carolina

Name:

Mommy

Email:

jcr104@hotmail.com

Date:

04 Dec 2000

Time:

13:42:32

Comments

I am so glad others have enjoyed the page. Conner is a special angel. But we all say that about our babies. We are praying he doesn't get sick this season. He hasn't had a respiratory infection before so we hope to keep them away this year, too. Sometimes you just can't do enough. We spent last Christmas in the hospital, so our goal is to stay home this year. Actually our goal is to always stay home, but...we're really trying hard.

Name:

Lea Batten

Email:

leabatten@aol.com

Date:

04 Dec 2000

Time:

16:04:23

Comments

What a neat webpage! My mother forwarded me the address, and she keeps me posted on how Conner is doing on a regular basis. Please know that you and your family are in our thoughts and prayers.

Name:

Stacye W. Johnson

Email:

stacyejohn@hotmail.com

Date:

05 Dec 2000

Time:

09:59:50

Comments

Good Morning Conner, Betsy, & John! I'm so glad I got this website. Betsy I wish I could say I enjoyed reading every entry, however, I cried...You are a wonderful mother who through your writing and sharing about Conner's illness makes me realize how much you are enduring. My thoughts are always with you and Conner. He is truly an angel and I hope this Christmas can be a joyous one for ALL of you. I hope Conner's pictures went well yesterday! I look forward to seeing them on the site. Give him a kiss from me and know that I will continue to pray for you, John, Mrs. Connie, and Conner! Warmly, Stacye

Name:

Email:

Date:

05 Dec 2000

Time:

10:09:32

Comments

Name:

jenn - brittany leigh's mommy

Email:

pm121597@aol.com

Date:

05 Dec 2000

Time:

18:12:14

Comments

you have a very nice site here for connor and your family - connor - you are a handsome boy with a wonderful family - i wish you all a wonderful holiday season - with love - jenn - brittany leighs mommy

Name:

Mommy

Email:

Date:

06 Dec 2000

Time:

00:05:34

Comments

Thanks for your comments. Conner is okay. He had kind of a strange day today. Something's not quite right but I just can't put my finger on it. I think he has or is just getting over some kind of infection-like a sinus infection or something. No fever just other various, nonspecific sypmtoms. Anyway, I hope its on the way out, not on the way in. He goes to the Orthopedist tomorrow. We're only going to offer suggestions to the therapists. I don't see that we will put him through too much with specialists and splints since scoliosis is inevitable. If we can get some info. about delaying it, that would be helpful. I'm interested to see if there is any onset. His joints are popping, too. I'd like to know about that. He doesn't act like he's in pain because of it. Well, I'll report what we find out. Thanks for caring.

Name:

Alison

Email:

ast1127@hotmail.com

Date:

06 Dec 2000

Time:

14:55:54

Comments

Betsey, That is such a great picture of Conner! I would love to have a copy for my fridge. The one I have is from a while ago. Thanks, Alison

Name:

Mommy

Email:

jcr104@hotmail.com

Date:

06 Dec 2000

Time:

15:54:25

Comments

Whatever Alison. We'll see. (just kidding) Conner went to the doctor today and he does not have any signs of scoliosis. He had a hard time. He kept crying and clogging. He finally calmed down and the doctor looked at him. He said we were doing a good job with Conner. We need to work on stretching his ankles with his legs straight but that was the only tightness so far. His bones popping out in his butt is normal for his condition and not painful. He said because of the looseness due to no muscle being there it just seems to pop out but it goes back into place. It would be painful if it popped out and stuck. He will never have that problem because the muscle is not there to prevent the bones from going back into place. I was so happy that his spine was okay. We just need to keep doing what we're doing and hopefully we can delay any pain due to the bones growing faster than the muscle.

Name:

Grammy

Email:

sangar@mindspring.com

Date:

07 Dec 2000

Time:

07:28:07

Comments

Hi Conner, Betsey, John and all I miss you guys and wish I could be with you. My car is warming up and it's time to leave for work but I just wanted to pop in for a minute and say I love you think of you as I'm riding through the country side, stopping to talk to strangers, and listening to all the craziness on the radio...Boortz, Rush etc. What a life!

Name:

Mommy

Email:

jcr104@hotmail.com

Date:

07 Dec 2000

Time:

13:57:14

Comments

I am SO frustrated with this nursing stuff!!!!Someone talked to the "model waiver analyst" and she said that it is a program that is designed to educate the parents and then pull the nurses back out. Also, since we haven't had nursing all this time then it shows that I am handling it BUT we haven't had it because of the long process!!!! I feel like telling everyone to keep it, keep IT-I don't need YOU!!!I will do it myself and with the help we have but the fact is I do need it and when Conner gets sick we would be able to keep him home if we had extra help. We canNOT afford to keep paying out of pocket for help and I shouldn't have to. I have worked since I was fifteen. I have paid so much money into the state and I deserve some help back. We are barely hanging on and someone in the state office is pronouncing that if we've done it this long it means we're handling it. And wher is HOSPICE???? There is not one pediatric hospice service in this area. There are right outside our county but they can't serve us without a certificate of need but the agency with the cert. doesn't do pediatrics! Is this right? We are left with nothing, no help and it is making me so angry. Okay, I vented. I hope something happens and soon. Thank goodness for Deborah Whitfield at Babies Can't Wait. She is helping so much.

Name:

Conner's Mommy, Betsey

Email:

Date:

08 Dec 2000

Time:

21:06:34

Comments

After last night, we are having a much better day. It took an entire hour of inexsufflating (CPT, albuterol, etc) last night to clear Conner and keep his O2 from dropping. I think this is left from whatever the "thing" was that was wrong with him-the feverless infection. He's fine now. He went white trying to get his bipap on today but we got him back. I am telling you what, when I have a "normal" child-IF I ever have the opportunity to have an undiseased child- I will be one hell of a mother. I'll be able to perform cpr like its nothin'. I'll be like, "Oh, hmmm...he's choking...let me handle it." Its funny, I'll clear a clogged lung but if Conner has a rash, I freak out and call the pediatrician after hours-"There are RED dots on his skin!!!" We put up the Christmas tree in before the clog last night and brought Conner back out on his breathing maching(bipap). He loved seeing the lights and watching me decorate. He watched the whole time. We have so few ornaments. Its all lights. It looks fine when the lights are on but looks funny during the day. But Conner Loves IT! He is watching a Bug's Life right now and he keeps glancing at the tree during his movie. He can't keep his eyes off the blinking tree. I am so glad he is enjoying Christmas. What a gift. It makes me so happy that we put a tree and tried. He knows its a special time. You can just tell he knows. He just looks at the stuff and looks at me and smiles. And when he smiles, it makes me so happy.

Name:

Conner's Mommy, Betsey

Email:

Date:

08 Dec 2000

Time:

21:09:51

Comments

After last night, we are having a much better day. It took an entire hour of inexsufflating (CPT, albuterol, etc) last night to clear Conner and keep his O2 from dropping. I think this is left from whatever the "thing" was that was wrong with him-the feverless infection. He's fine now. He went white trying to get his bipap on today but we got him back. I am telling you what, when I have a "normal" child-IF I ever have the opportunity to have an undiseased child- I will be one hell of a mother. I'll be able to perform cpr like its nothin'. I'll be like, "Oh, hmmm...he's choking...let me handle it." Its funny, I'll clear a clogged lung but if Conner has a rash, I freak out and call the pediatrician after hours-"There are RED dots on his skin!!!" We put up the Christmas tree in before the clog last night and brought Conner back out on his breathing maching(bipap). He loved seeing the lights and watching me decorate. He watched the whole time. We have so few ornaments. Its all lights. It looks fine when the lights are on but looks funny during the day. But Conner Loves IT! He is watching a Bug's Life right now and he keeps glancing at the tree during his movie. He can't keep his eyes off the blinking tree. I am so glad he is enjoying Christmas. What a gift. It makes me so happy that we put a tree and tried. He knows its a special time. You can just tell he knows. He just looks at the stuff and looks at me and smiles. And when he smiles, it makes me so happy.

Name:

Grammy

Email:

Date:

09 Dec 2000

Time:

07:58:18

Comments

I feel very happy to have Conner this Christmas..he's our special gift. Thank you God. Conner has truly taught us all about unconditional love, or at least it seems to be the message we are supposed to learn. Loving him is so easy and comes so naturally, but the pain of watching him struggle is a different kind of lesson. I'm not sure what pain is supposed to teach us...endurance, faith, I just don't know. I'm looking for positive things here...Conner's smile, his bright eyes, his love and acceptance...my daughter's unbelievable strength and love, determination. But in the end, I know that we will have to live without his presence here on earth at some point and that just plain hurts. Perhaps that will be softened by the knowledge that loving arms are waiting on the other side for the day that he is ready to go and be with them...loving mothers, fathers, grandparents, even those who will make him laugh and those who will teach. Enough of Grammy's rambling...love and happiness to my youngest grandchild on this Saturday morning.

Name:

Grammy

Email:

Date:

11 Dec 2000

Time:

06:23:13

Comments

Good morning Sunshine! Hope today will be a happy, healthy one for you and Mommy. You will be in my thoughts as always. Love you Grammy

Name:

Mommy

Email:

Date:

11 Dec 2000

Time:

14:25:00

Comments

Hi Grammy. I enjoyed seeing you even for a small amount of time. I got to get a small break this weekend by visiting all the other cousins. I hope I didn't bring their snotty noses back with me. Conner has something already anyway. I am shooting Zicam up his nose and my nose every few hours. It took a while but we got his lungs good and clear this morning. I'm giving him extra water and his nurse, Kelly, suggested an expectorant to loosen the junk even more. He specifically wanted to watch The Jungle Book this morning. When I'd put something on, he'd just keep making loud moaning noises. Finally, after a few tries of other things, I grabbed his three favorite videos and put them in his face and asked which one he wanted to watch and he just stared at Jungle Book, stared at me, jungle book, me. Oh....so now he is satisfied and quietly watching his movie and the Christmas tree in his Christmas pj's. Little does he know that bouncing Bob and dancing Larry are just in the other room. Its getting close and Conner is getting so snotty but we MUST keep him out of the hospital!!!! I will keep trying really hard to keep his lungs clear so no infection will develop. John is doing a good job, too. He took care Sat. and Sun. and Conner is happy and fine! He loves his daddy. Conner smiles so big when John walks in the room. You'd think he was Santa.

Name:

Mommy

Email:

Date:

12 Dec 2000

Time:

22:46:00

Comments

Conner did fine today. I had to do some work outside the house so John took care of Conner in the morning and in the evening. He did a good job. Conner calls. He is saying, "aaaaaahhhuuuuuh." I think that means, "Where are you mommy? I am tired."

Name:

Mommy

Email:

jcr104@hotmail.com

Date:

14 Dec 2000

Time:

13:25:18

Comments

We celebrated Conner's 17 month birthday last night. Mrs. Laverne McBride made a cake and it was still hot when Sonny got it at the drug store. He brought it to our house, we lit it up and used it as the birthday cake. And ate it! Delicious! Conner was watching tv in the front room with his grandparents. We turned out the lights in the den and lit the candles on the cake and pulled Conner in on his wagon. His eyes were so big-even though we do this every month. We sang "happy birthday" and he smiled so brightly. However, when we blew out the candles and turned the lights on he went silent and about ten seconds later he managed to push out a loud squeal of a cry. We looked at each other during those ten seconds and asked, "Is he breathing?" Then we heard the cry and saw the tear he squeezed out. So, we turned the lights out and did it all over again. We go through the same drill every month-singing twice and blowing out the candles twice. I had to take him back and put his bipap on because he kept crying. We just couldn't capture the moment again that had made him smile so big right when we wheeled him in so he was unhappy. He was actually very tired. There should be new pictures on the photo page very soon. Check them out. They are from the day we took Christmas pictures, from Conner's birthday and there is a gross picture of the hole in Conner's stomach. John wanted to take that picture and then put it on the page. I was putting in a new g-tube and that was the hole when I took out the old one. It looks dark but it was actually nice and clean! Anyway, hope you enjoy viewing.

Name:

Auntie Reea

Email:

Ree-a@msn.com

Date:

14 Dec 2000

Time:

13:29:06

Comments

Hi Sweet Conner- I just wanted to wish you a Happy 17th month Birthday :o). "happy birthday to you, happy birthday to you"- ok, I know you really don't want to hear me sing. I hope that you are feeling well today. I wish I was closer so that I could visit you often. You are always in my heart and prayers. Give your Mommy lots of those sweet smiles :o)!!!!!

Lots of hugs and kisses xoxoxo

Name:

Mommy

Email:

Date:

15 Dec 2000

Time:

01:43:38

Comments

Okay, I read that glutemine reduces ketone levels and Conner has had some horrid bad breath lately since I stopped giving him the glutemine. I only stopped giving it to him because the manner in which I prepare his formula changed and I just didn't work the glutemine back in. So, I am going to work it back in and I will report the status of Conner's breath. I thought maybe it was cold symptoms but the ketone thing may be it. I know he is getting enough food because he is fed every four hours just after his body uses up the last meal. I'll report. I know you are hanging on the edge of your seat.

Name:

Mommy

Email:

Date:

16 Dec 2000

Time:

00:12:44

Comments

Conner is doing okay today. But we are getting very concerned with his deterioration. It is so noticeable and sad. We feel forced to think about the balance of comfort and suffering and our responsibility as loving parents to protect our child from anything that could hurt him-like this disease. We can't take the disease out of him but we can make decisions that would remove his spirit from the diseased body. I don't think there is any decision that we need to make at this time but a big decision is to not take Conner back to the hospital. We talk about it a lot and we just feel like we would rather have him for a shorter time than to see his longing to be free from the pain and aggravation of the hospital. It is not pleasant for him at all. The staff is caring and nice but the process is not. I don't know how we will react when the time comes but I know that I would like to promise him that he will not have to go back. He will be at peace from this point on. No more drama! I hate the hospital drama! It is not good. We aren't trying to save Conner's life but trying to make him as comfortable and peaceful as possible for as long as we can. I may change my mind tomorrow but John and I feel pretty strongly about this. And we are so scared that he may get sick soon. We just don't know. Conner will let us know when he's ready to give up. I just hope its not after he's suffered for a long time. Sorry to be so negative. Maybe things will get better in the next couple of days and we'll have a better outlook. Whatever that means...

Name:

Grammy

Email:

Date:

16 Dec 2000

Time:

10:50:08

Comments

abbyftujkkkkcomner That is Abby's message. We just looked at all the new pictures. I, personally could have done without the g-tube hole, but that's just me. It may hold some fascination to others. How are you guys doing today? Abby, Lauren and I plan to go see Mammaw today on her birthday. I know you all are going through some very hard realizations and have such difficult decisions to make. But I do believe that the decision will ultimatley be out of your hands and just a natural progression of what must be. Conner is a wise little man and he makes his needs and desires known. His spirit is strong and will live on long after it is released from his frail little body. I love you now and I'll love you always, little man.

Name:

Laura M.

Email:

lmarsh@frontiernet.net

Date:

17 Dec 2000

Time:

17:18:46

Comments

Thought of all of you this morning (as I do every day). In church, Dr. Adams spoke of how being one of God's chosen people doesn't promise us an easy life or a life free from pain. Among the many examples he gave, was Mary watching her son Jesus suffer and what she must have felt. John and Betsy, I thought of both of you as well as Miss Connie. All of you are some of the most wonderful people I know and your lives are about as far from easy (and I'm sure you feel from normal) as they can get right now. In my heart of hearts though, I believe that Conner was placed on this earth for a very special reason. He already means so much to so many and always will. However, none of that makes the suffering he (and you) are enduring fair. I hope you all take some comfort in knowing how many love you and are praying for you. We haven't forgotten to come by ... ashley june is germ infested (diagnosed with bronchitis, 2 ear infections and pink eye on Thursday). If we can ever all get better in our house, I want to get them together. I hate flu season! Much love and give special angel Conner a big kiss!!!

Name:

Mommy

Email:

Date:

17 Dec 2000

Time:

22:05:15

Comments

Thanks Laura. We really do appreciate the thoughts and prayers. We actually went out last night while Connie and Sonny watched the baby. Everything was fine. Conner just watched videos, talked and went to sleep. I know he enjoyed his grandparents. They give him extra, extra special love. By the way, his aweful breath has subsided for whatever reason. He also has teeth breaking through the top of his mouth. You can see the teeth on the top and the bottom stretching his gums in the form of the teeth but just not breaking through. We did intensive rubbing yesterday and when I just barely touched where there looked like a tooth popping through today they started bleeding. We numbed and gave some tylenol. I wish they'd just come on in. I know that bothers him so much. He'll look so cute with some teeth (like he doesn't already).

Name:

Mommy

Email:

Date:

18 Dec 2000

Time:

22:09:38

Comments

Conner had a really good day today. I had a hard night though. I couldn't sleep and when I finally would Conner would start to stir or wake. John came back home from work and helped me so I could sleep which was wonderful. Thank goodness he had a good day. He got a haircut today. I cut the curls. John made me! I would have let it grow and grow. His teeth continue to bug him though. We'll keep working on them.

Name:

Stacye W. Johnson

Email:

stacyejohn@hotmail.com

Date:

19 Dec 2000

Time:

09:18:21

Comments

Hello Betsy, John, and Conner! I hope this message posts! I keep trying to no avail! I love all of the new pictures of Conner! The Christmas pictures are beautiful. I have many wishes for your family this Christmas the most important is that I hope Conner stays in good health! Betsy I can tell through your entries how much you are enduring. I pray for God to give you strength daily. I wish you each a Merry Christmas and know that the Johnson's will continually keep you in our thoughts! Much love, Stacye

Name:

Rebecca K. Padfield

Email:

compuball56@hotmail.com

Date:

19 Dec 2000

Time:

11:35:13

Comments

Merry Christmas everyone! I pray each day for things to get better in your family and for Conner to stay in good health as much as possible for someone with SMA Type 1. I too, am suffering from a neuromuscular disease. Haven't gotten the diagnosis yet, but I am getting more major tests beginning at the start of January. I mainly have slowly progressive weakness that doesn't go away, nauseous feelings, painful joints, electric-shock like feelings, spasms in my limbs and trunk and a lot of panic attacks. But of course, my symptoms aren't as severe as Conner's and I feel very sorry that such a sweet, nice child is suffering so much. I don't know if you do what I do when I'm feeling stressed or sick, but when I think positive (everything is okay, nothing bad is going to happen, God, please help me and stuff like that), any panic attacks or feelings of nauseous go away after a little while or the suffering doesn't feel as bad. I suggest trying to think positive whenever you feel under stress, sick or helpless to help Conner feel better or whatever. I know things are very tough for all of you right now by reading the journal entries, but hang in there and know that God is with you, a lot of people are praying for all of you and things will get better.

Name:

Mommy

Email:

Date:

19 Dec 2000

Time:

21:29:25

Comments

Thanks Rebecca and Stayce, you help us stay positive. Conner has been communicating so well lately and that is just so exciting for us. He was calling last night, "NaaaNaaa, DaaaDaaa." So we went in there and he smiled so big. Then he slept. He has had such a good day. The therapist came today and he got a good workout. He told Ms. Billie (helps with the house and helps love Conner) he was one today. I told him to show her how old he is. "You're one,one,one." And he holds up a finger to show he is one. If I say, "TELL her how old..." he will pull his hand to his mouth because I said, "tell," instead of "show." He wants to talk and he thinks the way you talk is by using your fingers to move your lips since that is what I did with him when I'd say, "Say 'Momma'." He can "show" you he loves you by putting his thumb and middle finger together but if you say, "Say 'I love you.'" he'll pull his hand to his mouth. He'd rather SAY it but he can't do the words. He tries and that is so cute. Just when we were getting discouraged, he's pulled out something to amaze us. That's Conner! That's why we love him. He's our little angel-medium to God and the angels and heaven above. Love,love.

Name:

Grammy

Email:

sangar@mindspring.com

Date:

20 Dec 2000

Time:

07:56:01

Comments

Hi Conner, Betsey, John Wish you were here to enjoy the snow with us. Abby made snow angels yesterday. Today the snow looks kind of skimpy but the cold is penetrating. I have some deliveries to make to my customers today...I'm not working too hard this week, no one is really interested. It seems all the businesses are winding down. Conner, say "I love my Grrrrrammmmmyyyyy..." 'cause Grammy sure does love her Conner. Hope we can have a visit after Christmas. I love you all and know how positive you can be, Betsey. Even in the face of the worse possible circumstances, you have always had that little spark that can't be put out, it just keeps bubbling up to the surface and life just has to be GOOD and fun and meaningful. You are a true survivor...Welcome to the Club! Love you all

Name:

Mommy

Email:

Date:

20 Dec 2000

Time:

22:11:28

Comments

Hi GRRRAAAmmmeeeee-like Lauren used to say. I feel better mom. Since I had started worrying about Conner a couple of weeks ago I stopped going to the gym and consequently started getting more and more depressed. I managed to get out two days in a row which seems to be enough to get my energy back and my attitude adjusted for now. I have to keep going. It makes such a difference in my ability to care for Conner when I can get to the gym and get some energy. I suppose it is like my antidepressant drug-maybe a little cheaper. I don't feel like I'm dragging-like every chore is like climbing a mountain. I told John I WILL have a good day tomorrow, no matter what. Conner and I will do something fun. We'll make a picture! I'll post it on the page. We'll see....Conner started his day crying at the nurse. Something's up with him today. His pulse rate isn't normal and secretions thicker and colored. Maybe we'll handle it.

Name:

Lauren Carlisle

Email:

Date:

21 Dec 2000

Time:

21:40:59

Comments

Dear Cousin Conner, I wish you weren't so far away.I miss you very much.I love you so much.I will never forget you.I promise.

Name:

Lauren Carlisle

Email:

Date:

21 Dec 2000

Time:

21:41:04

Comments

Dear Cousin Conner, I wish you weren't so far away.I miss you very much.I love you so much.I will never forget you.I promise.

Name:

Grammy

Email:

sangar@mindspring.com

Date:

22 Dec 2000

Time:

07:49:44

Comments

Well, it's time for Grrrraaaaammmeee to get out in the icey weather again...last day of work for 10 whole days. I'm very excited. We'll spend some quality time together. Wish you could be here to greet Santa with Abby, but you'll have fun with Mommy and Daddy. Feel honored to get an e-mail message from Lauren...she's never e-mailed her old wrinkled gray haired grammy! Betsey, keep pushing iron and have a good day.

Name:

Kim Brannen

Email:

Date:

22 Dec 2000

Time:

10:08:02

Comments

The strength of your family is amazing. You have reminded me to appreciate every little thing and take nothing for granted. Thank you. I will continue to pray for each of you. Please know that God loves you very much. Knowing God takes faith, focus, and follow-through, and Jesus assures us that we will be rewarded. Continue to ask for more knowledge, patience, wisdom, love, and understanding. He will give them to you! Celebrate the birth of our wonderful Savior this Christmas with your little angel. Merry Christmas. Please call us if there is ever anything that we can do.

Name:

Brent, Tracy & Cole

Email:

brentandt@yahoo.com

Date:

22 Dec 2000

Time:

22:32:23

Comments

Betsey- Thank you so much for keeping us updated! We loved the new pictures! It looks like th

Name:

Betsey

Email:

Date:

23 Dec 2000

Time:

14:02:14

Comments

Thanks Tracy. Sorry if you're having problems posting. Keep trying! or email us. Conner has had a couple of good days. He has spent some good, quality time with his Grandmommy Connie and Granddaddy Sonny. They have endless amounts of love for their angel baby. He knows their specialness and that they are the ones that are supposed to let him get away with anything because of his piercing cuteness. That is pretty perceptive considering we all let him do anything he expresses a desire to do. He's got lots of presents from Santa on the way. Santa has actually visited several times already in the past few weeks and given us special permission to go ahead and play with the new toys. I hope you all enjoy your families this Christmas. Don't fight! Enjoy your babies and your nieces and nephews. If we can enjoy our Christmas, you have no excuse not to enjoy yours. No matter what. In fact, this may be our best Christmas for the next decade or so-so we better love each other real good, right?

Name:

Mommy

Email:

Date:

25 Dec 2000

Time:

01:16:25

Comments

Well, Conner is fast asleep and Santa has already set all his stuff out. He has lots of little friends waiting on him. Dancing Larry and Bob, Elmo, Buzz-all his favorite dudes. I can tell you that this Santa is tired but excited about tomorrow-smiles and good food. I am so thankful to be home.

Name:

Mommy

Email:

Date:

25 Dec 2000

Time:

23:50:42

Comments

Conner had a GREAT day. We woke up and rolled Conner into the den on his wagon and he saw his little friends and presents by the tree. He couldn't have cared less because we took him away from his video. But once we started opening cool presents he was happy. We all ate good food and enjoyed the day. Conner never took a nap and fell asleep in the middle of the floor with his bi-pap on in the late evening with everyone talking around him. He was so tired but insisted on staying awake as long as possible. It was so nice to have the family surrounding us. I hope I will have more surrounding us this week.

Name:

Mommy, Grammy and Conner

Email:

Date:

27 Dec 2000

Time:

14:53:04

Comments

Hey there, we are having a good time with Grammy here. Billy(my brother), Shannon, and cousins Lauren and Drew are on the way!!! Lauren is Conner's older 8 year old cousin and Drew is exactly one month older than Conner. We are so excited!!!

Name:

Mommy

Email:

Date:

28 Dec 2000

Time:

00:26:56

Comments

Conner had a nice day visiting with cousins Lauren and Drew and Uncle Billy. Drew came in Conner's room while Lauren was reading to him and he just couldn't take his eyes off Drew. He smiled and smiled at him. Drew was talking jibberish 1 1/2 year old speech and it was like Conner knew his language. Conner enjoyed his cousins so much-laughing and smiling-lots of activity...more than I am used to...I am used to an immobile,quiet 17 month old. But they are good kids and we are so very happy to have our cousins, uncle and grammy!!!John is probably a little overwhelmed. We are thinking of Grandmommy Connie and loving her and hoping everything will get better. Love, love.

Name:

Sheila Dupree

Email:

Date:

28 Dec 2000

Time:

17:55:35

Comments

Betsy, Thank you for sharing with us. One of the greatest gifts is knowing that Conner is enjoying Christmas. You have done a great job on this site and in taking care of your family.

Name:

Grammy

Email:

Date:

29 Dec 2000

Time:

19:43:24

Comments

Well, I miss you little man, but I enjoyed my short visit and all the smiles you bestowed upon me. They tell me that everything is fine in your little world. I need to know that. On my next visit, I want to spend more time with your Grandmommy. I hope she'll be feeling like a trip to the ocean for some old fashioned "girl talk" and just plain doting over our beautiful grand children, especially the one we have in common...YOU. Love you all, Grammy

Name:

Mommy

Email:

Date:

29 Dec 2000

Time:

23:38:42

Comments

Hi, we are sad that our company is gone but we enjoyed you while you were here. Conner loved laughing at Lauren and watching and listening to crazy, silly Drew. I had a fun time, too. Also, I wanted to make sure anyone who is interested in Conner's disease and a cure for Conner's disease should check out the fundraiser event on the front page at the bottom-click on believe-miracles and then go to "next" after you've read the page. It will be in Savannah on Feb. 10. We went last year and we had the best time. It was hard last year because we were just learning about the disease and we weren't sure what it would be like. We got to dress up and go spend the evening with hundreds of people who were there specifically to help fund a cure for my child's disease. It was fun dancing and eating and seeing the things to bid on for auction but it was so touching when they had a presentation on sma-Dana put a picture of Conner up with the other kids. While it was a fun night, I was so touched and cried at the efforts that are being made to help kids like Conner. Dana Swanson in Richmond Hill has twins with sma1 and she is responsible for this big and successful event. She, with the participation of friends and family like you, has raised so much money to find a cure. We will definately be going this year and if you are interested at all, please go!!! We would love to see you and have your support in this capacity but more you will have a good time and feel like you've made a difference in Conner's name. Thanks for loving Conner and helping us as much as you already have. To learn more about just how close researchers are to finding a cure, you can go to www.fsma.org. Thanks!

Name:

Grammy

Email:

Date:

31 Dec 2000

Time:

08:50:42

Comments

We're here at Frankies. It's beautiful here. I didn't sleep too well last night. I want my Abby. I hope we can get past this unfortunate time. How is Conner? I miss you all. I'll try to call when I can tell you things are great! I hate feeling empty. Love to you all.

Name:

FRANKIE lEATHER

Email:

lADYTATA@WEBTV.NET

Date:

31 Dec 2000

Time:

09:02:05

Comments

hI BETSEY, I AM TRYING TO FIGURE OUT THIS MACHINE..EEK. tHE PICTURES OF CONNOR BEAUTIFUL...WE WANT TO PRAY FOR YOUR NEW YEAR,AND CONNORS. WE WISH WE COULD B E CLOSER.happy new year !

love frankie

Name:

Betsey

Email:

Date:

31 Dec 2000

Time:

14:02:45

Comments

Mom, I hope you can relax and have a good time. Conner and I are going to party tonight! Just kidding. He'll probably be asleep so we'll celebrate early. I am not sure I can explain the concept of the new year to Conner. Christmas was easy since we had tangible things like presents to convey that something was happening. Maybe we can practict the countdown. He'll like that. I'm just glad I get to spend the time with him. Each event that passes is a gift considering we had no idea if he'd be alive this long. He's doing pretty good (sleeping and managing to keep from getting sick) right now and I am so proud of his strong will to stick around. Conner is a strong little boy and very tough. He bounces back from every difficult moment with a smile. Precious.

Name:

Mommy

Email:

Date:

01 Jan 2001

Time:

22:22:48

Comments

Hard day. I don't even feel like reciting it. For whatever reason poor baby couldn't sleep, it was making him and me miserable. PLEASE sleep. please stay asleep. please rest. If he can just get a good night's rest he'll be fine tomorrow. His chest is clear, I don't know WHAT it is. Poor babe.

Name:

Mommy

Email:

Date:

02 Jan 2001

Time:

14:21:47

Comments

Please check out "Conner's story" if you are interested in our thoughts and feelings and facts about Conner's diagnosis. I posted this so that other mothers, especially newly diagnosed mothers, would have some information about how we handled Conner's diagnosis. It helped me and still does to read the other families' stories. Conner is doing better today but still had a difficult night and morning. Lots of stuff to clear from his chest this morning. I thought his chest was clear but it wasn't this morning. I hope he isn't getting a cold. Oh, I hope. He seems fine now though. So, we'll see.... The nurse had to give him the pnuemonia shot today but he didn't seem to even care. I put some emla on to numb the skin, then the massager over it after the shot and he cried for about 1 minute, maybe. He just kept laughing at Bob the tomato.

Name:

Mommy

Email:

Date:

03 Jan 2001

Time:

23:31:25

Comments

Conner did okay today. His therapist came and gave him a good workout. We are planning to go the fundraiser in Sav. but need to find a babysitter for the night. We guess we'll be needing a nurse. We have until Feb. to find one so I won't worry. We just have to hope Conner is well anyway. You never know. Can't plan anything, not even a week or couple of days. You just don't know. I guess its that way for any parent though. I don't know... Things are going okay for now. I went and visited cousin baby Jim for a little bit tonight and I just stared at his cuteness while he slept. Precious babies everywhere.

Name:

Mandy

Email:

addeal@bulloch.k12.ga.us

Date:

04 Jan 2001

Time:

08:18:15

Comments

Betsey, Just wanted to let you know what a beautiful site you have created. I really enjoyed all the photos. You are all in my thoughts and prayers EVERY day. Love to you all, Mandy

Name:

Mandy

Email:

addeal@bulloch.k12.ga.us

Date:

04 Jan 2001

Time:

08:41:58

Comments

Betsey, when I wrote awhile ago, I hadn't taken the time to read through all the entries. Yes, I too cried. I am so amazed at your family's strength and encouragement. Yes, I realize you have your days where you just need to vent and I hope you realize that that is FINE. If you didn't I would REALLY worry. I seem to get frustrated with Colby's frequent colds, cough, etc. because I don't know what to do, but then I realize that you do that every day. Maybe soon we'll be well enough to come visit. I do pray each day for you, John, Conner, Connie, Sonny, and the whole family. Hope Connie's pain is subsiding. Give her my love also and well as John and that precious Conner. Thanks for being an inspiration to me. Love to you all, Mandy

Name:

Mommy

Email:

Date:

04 Jan 2001

Time:

23:57:50

Comments

Thanks Mandy for reading everything and thinking of us. I know how much you care about this family. We appreciate you very much. Today was one of those days that went moment to moment as opposed to a good or bad day or even hour to hour. One moment Conner would be happy and fine and the next he'd be giving me all the signs that something was really wrong even beyond the regular stuff I'm used to fixing fast. I went and worked for a while and John watched him. I got back and I was alone with him later this evening he started choking and turning blue and all my efforts were not helping. I needed someone to help me fast and I got on the cordless phone and started calling around (I had practically forced John to go eat at ElSombrero with his older brother) but Daniel came on from his parents but I was scared. I usually don't panic and I didn't then but I was really scared. I don't want to lose him like that. By the time Daniel got here, I had him making noises and got Daniel to help me get all the other stuff that we needed that was still in the other room. I had the oxygen in one room and his other de-clogging things in his bedroom and needed someone to go get it all while I was working on him. Anyway, no need to keep talking about it. It is over and he fast asleep and his numbers are perfect. He will have a good night and we will have an Elmo movie marathon tomorrow if he so chooses.

Name:

Betsey

Email:

Date:

05 Jan 2001

Time:

12:46:22

Comments

It is an ear infection. The drainage started today. Gave medicine. He is fine.

Name:

Cousin Lauren

Email:

Date:

05 Jan 2001

Time:

22:07:08

Comments

Dear Conner, How are you my sweet baby?I love you!You still wathin' A Bugs Life?I miss you!!!!!!!!!!!!!!!!!!!

Love, Lauren

Name:

Shannon Carlisle (aunt shannon)

Email:

socarlisle@yahoo.com

Date:

05 Jan 2001

Time:

22:43:06

Comments

Dear Conner,

This is the first time I have visited your website. I am not sure why. The pictures of you are so beautiful. I am so sorry I didn't make it down this past visit. Drew really enjoyed looking at all the pictures. I know that he and Lauren had a great time visiting with you.

I hope that you are feeling well and I can't wait to see you. Please know that your Uncle Billy, Aunt Shannon and your cousins Lauren and Drew love and miss you!!!!!!!

Please give your mom and dad a hug and kiss for us and tell them we said hello.

Name:

Mommy Betsey

Email:

Date:

06 Jan 2001

Time:

12:37:02

Comments

Hey cousins and aunts (and friends and strangers)! We have another big cousin coming today and are we excited or what? Abby Baby is on the way! Conner seems to be doing okay. I overreacted to him last night. John was "on duty" and I heard Conner at about 4 (everything happens about 4 in the morning) and I could not go back to sleep until I knew he was asleep. Any other time I know he's well and he'll fall back asleep eventually but knowing he isn't feeling good made it very difficult to go lay down even knowing that John had an eye on him. I am his MOMMY and I must know that he completely comfortable-I think he was- now that I am awake and sane-but I couldn't be convinced this morning until he was asleep. He communicates best with his eyes so I just laid there on his bed and stared at his eyes to see if he was trying to tell me anything. But he was saying, "If you just go away I might get some rest." He's making Furby(sp?) sounds right now. Purring furby sounds with the stuff in his throat. Okay, gotta clean up. love,love

Name:

Betsey

Email:

Date:

07 Jan 2001

Time:

14:58:33

Comments

Company's gone. Poor Abby had a fever all of the sudden last night. We were playing having a good time then she was lying down and started burning up. It was under control when they left but poor baby. I was washing my hands like crazy and spraying down everything with Lysol over and over. I hope she feels better quickly. Nothing worse than a sick baby although Abby never acts like she is sick. She has an incredible ability to continue to play no matter what. I am giving the Zimac to Conner and myself. Hopefully we won't get whatever it is.

Name:

Email:

Date:

07 Jan 2001

Time:

15:00:53

Comments

Zicam-i always get that wrong-it's to help keep the cold virus from attaching to the little things that the virus attaches to in your nose

Name:

Auntie Lisa

Email:

Date:

07 Jan 2001

Time:

16:29:22

Comments

Hello Dear Conner! I just wanted to let you & your mommy know we will be down there next month for the fundraiser. I am looking forward to it, we really enjoyed last years fundraiser it was a wonderful evening. It is so nice to see there are so many caring & supportive people out there. I keep you in my prayers daily. Tell your mommy I said hello & we will see you very soon!

Miss you!!!!!!!!!!

Name:

Mommy

Email:

Date:

08 Jan 2001

Time:

13:40:14

Comments

The new nurse is here!!! Hooray! Hope Godbee is a friend and now Conner's nurse. She has been wonderful today learning all of his machines and how to handle his delicate little floppy body. He's a little cranky but I think he'll have a good day. When he's not fussy his color looks good.

Lisa, I am so glad you are coming. It will definately be fun now! I hope others will go. It is such a fun time and bidding on that auction stuff is fun because once you sign on the sheet for something you want then you start getting competitive if others start bidding on the same items. Last year, Lorie C. got me this basket with hair products and stuff in it and I felt like it was Christmas-it was so nice. Anyway, they had a puppy up for auction last year. They have real expensive stuff and little things too. John's dad got a signed picture of Dolly Parton. No one wanted to put it in his house so it has ended up at Sonny's drugstore. Julie ended up paying a ridiculous amount for a bulldog picture. But she REALLY wanted it. I need to find something nice to wear. Since I have a nurse now, I can go shopping! Okay, talk later, Betsey

Name:

Grammy

Email:

Date:

09 Jan 2001

Time:

09:03:47

Comments

Dear Conner, Grammy is missing you today. Abby is feeling better. I hear her upstairs "going to the potty". We looked at pictures of you and her last night. I think she misses her little buddy as much as the rest of us. I'm glad you are in your nice cozy warm house today with a nice cozy warm mommy to love you and play with you. I'm looking out the window and it is NOT nice and cozy out there where I'm going today. I have my trusty Zicam in my purse ready to squirt at the first sign of discomfort. I look forward to the fundraiser next month. Should we try to coordinate getting tickets so we can all be together?

Name:

Mommy

Email:

Date:

09 Jan 2001

Time:

14:05:30

Comments

We should definately sit at the same table mom.I hated that we didn't last year. I must do that NOW. I sent some new pictures to be put on the photo page and they are there now but the last one was a mistake. I meant to send another one. So, it should be fixed soon. It doesn't make sense. I knew I'd do that! Conner went out in the snow today! He hasn't been out in a while because it is cold but I bundled him good and got him out to see the snow and have it fall on his eyelashes. I got him on video. John wants so badly to get home from work before the snow stops so he can take him out and see Conner's reaction. Conner said, "huhhhh, uhhhhh." You may not know it but that means, "I think the snow is cool, mommy."

Name:

Mandy

Email:

addeal@bulloch.k12.ga.us

Date:

10 Jan 2001

Time:

10:36:23

Comments

Hey Conner! Just wanted to check in on you today. (Well, I check on you each day, but I decided to write today.) Hello Betsey and John. I know you were excited and relieved to get the nurse the other day. Hope she's working out well. Love to you all, Mandy

Name:

Mommy

Email:

Date:

10 Jan 2001

Time:

15:37:33

Comments

Conner has had a good day so far. He's is napping so nicely right now. The nurse came this morning and he was being super cranky and crying. Once we got him some tylenol3 and mylanta he calmed right down and enjoyed the rest of his morning. If he sleeps well everything else usually goes well. Wednesday we will have a respiratory therapist student come and learn how to care for Conner so she can help "specialize" babysit for John and me. Oh baby is crying-talk later, Betsey

Name:

Mommy

Email:

Date:

10 Jan 2001

Time:

23:28:39

Comments

Conner is definately not feeling well. We are really trying to keep the lungs clear despite whatever this is whether it is ear infection mess or something a little more. It felt so good having help today. My days just go so different when I can just go in and out of Conner's room just to kiss on him and not have to do the yucky stuff. I am so much more positive when I have help-although John is help, too. But I get really scared when Conner is sick because we do not want to go to the hospital and we know what that means if he gets any mess stuck in his lungs. My reasoning is that if we take Conner to the hospital, we are deciding we want them to save his life above anything else. We want comfort first, life second. That is a difficult commitment and we just don't know until we get there whether we will be strong enough to put Conner's comfort above our inability to lose him. It is a gamble because the suffering could buy him a year more but we don't know the quality of that year and if it will be a year of suffering- we not only would have broken our commitment but prolonged his discomfort. I just don't know. I wish Conner could tell me what he wants. But as a child he would want his mommy and daddy. Ultimately, I know we'll do the right thing-for Conner. Others may not agree but I know we'll have Conner's welfare, as we see it, at the forefront and how can you go wrong with that? I am just rambling but maybe by me being such a big mouth about my pain and feelings you will understand others who are going through pain that is equivalent to mine-or maybe just know what we are going through and how to approach us. All I know is that I am not ready to lose Conner but I will never be and this isn't going to be easy. Nothing anyone can say will make me feel any different. I do appreciate him now and we will have a good day tomorrow no matter what. Thanks for caring about us. We appreciate it dearly and don't know what we would do without the love we have received. It makes a difference. Thanks Mandy... talk later, Betsey

Name:

Lucie McKinney

Email:

lucimck@yahoo.com

Date:

11 Jan 2001

Time:

08:33:15

Comments

Dear Betsey and John, I love the pictures of all of you at Christmas. Mandi, Mark and I pray daily for you, John, Conner and Connie. You are such wonderful parents. Although we are up here in the mountains we still miss your wonderful family. I always call Connie and give her a weather report. I heard it snowed down there the other day. I hope Conner enjoyed it. Please know how much we love you. Miss Lucie

Name:

Mommy

Email:

Date:

12 Jan 2001

Time:

01:00:09

Comments

Thanks for thinking of us....Conner is doing better this evening. Hope had a time with him this morning but we got him cleared and he really had a pretty good evening. No more fever and pulse rate decreased and o2 is high. He just has a bunch mucous which can be so hard on Conner's throat and nose(sinuses) because of suctioning so much. He seemed happy tonight and laughed at Mommy when I acted silly and smiled big as Daddy kissed his cheeks and talked sweet to him. So, we did have a good day no matter what!

Name:

Stacye Johnson

Email:

stacyejohn@hotmail.com

Date:

12 Jan 2001

Time:

08:57:08

Comments

Good Morning Conner, Betsey, & John! The new pictures are great! I haven't visited the site since before Chirstmas because my internet want work at home! I love reading all of the journal entries Betsey! It sounds like Conner is doing pretty well! I continue to pray for you and your family on a daily basis. It was good to see you at Sandra's! Next time I am home I would love to come by and spend some time with you and Conner if that would be o.k.! The dance in February sounds fun. I will contact them today and see if any tickets are left! Maybe Wendye can come home and go with me! I will tell daddy about it, too. We will see. Anyway....stay strong and know that many people are praying for you and your family. You make me realize how precious life is through your entries. Thanks. Much Love, Stacye

Name:

Mommy

Email:

Date:

12 Jan 2001

Time:

21:48:10

Comments

Conner had a pretty good day today. He had a hard morning but got straight as the day went on. The physical therapist spent 50 of her minutes watching Conner get his treatment and he at least got 10 min. of therapy. But that is how it happens sometimes. Bad news is that we are all sick now but the good news is that Conner went swimming in the bathtub with his new life vest with a head piece. He has increasingly come to hate the water since he began choking with each bath no matter how tailored it was to his needs. We have to get him to like the water again somehow since it has the potential to be a good therapeutic tool for his joints and muscles and can be fun for him. So, the vest was a success tonight after initial crying. I just "talked it up" until he finally, after only one choking episode, started smiling and saying, "uh-huhhhh, uh-huhhh." I am so glad he liked it. We have now re-expanded the number of activities he can participate in. I am looking into really sensitive switches and other devices to make life a little more "exciting" for Conner. We have to prove to him that life extends beyond videos. He doesn't believe us.

Name:

Robyn Petty

Email:

steele815195@aol.com

Date:

13 Jan 2001

Time:

16:45:59

Comments

Betsy conner's story is so precious and so sweet. I wish there was something - anything I could do to make life just a little bit easier for you. I just pray for you, for John and for Conner. I agree with you - life is so unfair sometimes. I know God is hurting for you as much as you are hurting. Conner is beautiful and I am sad that I don't know him and don't get the opportunity to see him. I wish I could give him a big hug and a big kiss. Please give him one for me. I can't imagine what you are going through or how hard a day in your life must be. Please just know there are so many people who care so much about you, John and Conner. I feel so privileged to know you. I don't think in my life I have ever known anyone as brave and courageous as you are. I am so proud of you, you are a very special person and Conner is so lucky to have you as a mom. I know, it is obvious in the things you say about him, you feel equally as lucky to have him as a son. He is so precious and not a day goes by that I do not pray for him and think about him. He is an angel here on earth. We love you all and think about you all the time. Robyn

Name:

Mommy

Email:

Date:

13 Jan 2001

Time:

19:02:20

Comments

We are sick. Yuck!

Name:

Mommy and Daddy

Email:

Date:

13 Jan 2001

Time:

19:04:25

Comments

Happy B-day to Conner! We have to skip this one. We'll just sing to him and light a candler in a cookie that Mr. Green sent down. Conner is 1 1/2 today.

Name:

Email:

Date:

13 Jan 2001

Time:

19:05:35

Comments

candle-the decongestant is getting to me, can you tell?

Name:

Mommy

Email:

Date:

14 Jan 2001

Time:

02:14:18

Comments

Sorry Robyn, I didn't see your message. Thank you for thinking of us. Thanks so much for yours and everyone's encouraging words and thoughts and prayers. Robyn, you've done so much! Just by checking this site-not writing or anything-but just by reading, you are helping. You are showing that you care about what happens to Conner. What if someone cared that much about your child to take his or her time out to call or check on him? Wouldn't that touch you? I feel the same way. I don't ever take it for granted. I am just amazed at how cared for Conner is and I am so proud of him for living up to the angelic standard that deserves all the love and attention he gets. Just by caring, thinking, praying people have done so much for Conner and us. This web page is for you to get to know Conner. So many of you can't get to us and we can't get to you. So, this was a way to get Conner to you. Thanks. By the way, Conner did good today. He had the evaluation with the speech or communication therapist-I think that's correct. I am excited about finding new ways to communicate. Conner was so sweet today. He did so good and he took care of us since we were sick-he was especially easy to take care of today despite the fact that he is sick, too. What a sweetie pie.

Name:

Belinda DeLoach

Email:

belinda2@frontiernet.net

Date:

14 Jan 2001

Time:

18:58:29

Comments

Dear Betsy and John: Thanks for allowing me to come to your home and evaluate Conner's communication skills. He is a precious child who seems so eager to communicate. Thanks for sharing Conner's web page with me. Your family is in my prayers. I will be getting in touch with you soon. Belinda

Name:

Bessie Whitlock

Email:

bessie_w@yahoo.com

Date:

15 Jan 2001

Time:

10:53:51

Comments

Betsey, I just read your story and am bawling my eyes out. I really don't know what to say. I'm thinking about Conner; and you and John in your care for him. I love you three very much! I enjoyed seeing your photos-- especially your christmas ones. Thank you for sharing the story of Conners life. I will be by to see you soon. Give Conner a big kiss for me!

Name:

Grammy

Email:

sangar@mindspring.com

Date:

15 Jan 2001

Time:

13:29:03

Comments

Hi Riggs Family, Hope the cold bugs are leaving your house. It's hard to all be sick at once. Wish I were closer and could help you. I'm never much help when I'm there, but I could at least fetch and feed. I think of you all and will come down soon and celebrate that big 30, Betsey. MY BABY IS GROWING UP! Gosh, if you're my baby is going to be 30, how old am I? I guess about 46? Does that sound decent? Yeah, sure. Conner, say Mommy is OLD.

Name:

Grammy

Email:

Date:

15 Jan 2001

Time:

13:30:40

Comments

I'm obviously in a hurry and didn't edit....see ya. Mom

Name:

Mommy

Email:

Date:

15 Jan 2001

Time:

14:16:23

Comments

Hi there. We're getting better. The cold medicine has been making me sort of active so I have been doing things around the house. So, now I want to go to Lowe's but Conner is acting funny and I am having a hard time getting out the door. I am sure he'll be fine. I just get a little paranoid that something bad or difficult to manage will happen if I leave. I try not to feel that way but I can't help it sometimes. Okay,I'm going. He's on his bipap and John is a good caretaker so I shall leave. I'll give him big mommy kisses and hugs and tell him they are from you.

Name:

Robyn Petty

Email:

steele815195@aol.com

Date:

15 Jan 2001

Time:

22:31:20

Comments

Hi Riggs Family! I must confess that since I have finally evolved into the 21st century and gotten on-line I have only visited this web-site. I have been reading all about the other SMA Angels and I am so touched by what I read. What an impact these children have made on the lives of so many. I feel honored to know Conner and your family. You are all amazing. Jeff and I will be in Georgia at the end of January and would love to see you guys. I read that you have all been sick - hope you are all better. Please give Conner a big hug and kiss from his friends here in Flower Mound Texas! We love you guys and hope to see you very soon. You remain in our hearts and prayers. The Petty's

Name:

Mommy

Email:

Date:

16 Jan 2001

Time:

13:37:11

Comments

Conner is doing so well today. He is actually sitting at an incline watching Elmo. The therapist thought he was doing well enough to put him up. He looks so good right now. His granddaddy is visiting right now but its hard to compete with Elmo.

Name:

Deborah Whitfield

Email:

dmwhit@frontiernet.net

Date:

16 Jan 2001

Time:

15:47:31

Comments

Hey Betsy, Your site is incredible! Yall are such special people and Conner is so lucky to be blessed with parents like you!!! You are so together. I have never been so impressed as I was that day at the clinic when you worked so hard on Conner and never seemed ruffled. You are one terrific mom. Call me if you need anything. Love, Deborah

Name:

Grammy

Email:

sangar@mindspring.com

Date:

17 Jan 2001

Time:

13:04:34

Comments

Hi Conner, Grammy is goofing off today and pretending to "work at home". It's very hard with Abby wanting to play. I'm looking forward to seeing you all soon. The fundraiser sounds like lots of fun. Betsey, have you sent info to Uncle Harry? It would be nice if some of the Columbia folks could come. I wish I had Tom Albright's e-mail and Jim Stein's. Maybe I could call them and get them, if not for this event, for future use. Give Conner some of those good sweet kisses from Grammy...and take a few for yourself. Love ya,

Name:

Betsey

Email:

Date:

17 Jan 2001

Time:

13:28:26

Comments

We are getting nursing soon because of Deborah. We started getting nursing as respite last year because of Deborah. I am finally getting the SSI stuff done with Deborah's help. Appointments, follow-up, physical and occupational therapy in the home...Deborah. The communication evaluation is the result of Deborah. Deborah may say it is her job but I know that she does far more than her job outlines. She is persistent-relentless in getting Conner what he needs. She is Conner's advocate and my counselor at times. I know that goes beyond her job. Since Conner's illness was discovered I have been in contact with professionals (doctors,nurses,lab technicians,secretaries,social workers, caseworkers, program coordinators, etc.) who have just done the bare minimum of their jobs and others who have gone so far beyond. Deborah Whitfield, Holly Eckles and Jill Burnett, Terri Bland, Dr. Deal and Kelly Deal(nurse Kelly) have all helped Conner in ways that just extend so far from what your job calls for you to do. What would we do if you all just did your job? We'd be lost. A lot of other people have helped us in other ways but lately these are the people that have been such advocates and gotten a lot done for Conner to make his life more comfortable. I learned something when John and his parents and I took Conner to the Dr.'s at John Hopkins in Maryland and Univ. of Med. in Newark, NJ. Both of those Dr.'s are at the top of their fields, one a pulmonologist and the other a neurologist. I learned that it doesn't matter how important or overloaded the professional may be, he or she can and should treat his patients with respect and the utmost concern to resolve the reason for the visit-not cure but resolve the issue at hand. Finding out the true issue is one trick and being smart enough to convince the patient that there is a resolution is the other. That is what those two doctors did for us and ironically they stood at opposite ends of the spectrum on their resolutions. However, they were smart and compassionate enough to make us feel like we were their only patients on those days. We left not feeling like Conner would be cured but that we had all the info. that they could share with us and we resolved that loving Conner and doing what we were doing was our answer. My simple point among all these words is that these doctors were very busy and have a lot to do. But they care so deeply about sma and finding out about kids like Conner that they made us feel like we were the important ones. That is what the professionals like Deborah do. That is how I know that I am dealing with a professional-when they make us feel like we are the special ones and they are there to help us-not to just do their jobs. Quite simple but you'd never believe the "professionals" we've come in contact with who act like their workload is too big to give us the treatment that Conner needs. Or they want to throw info. at us and not listen to what we want. Or like the er doctor told us, Conner is going to die, did we know that? and children shouldn't be brought in for fevers. What does that have to do with the price of tea in China? You have gotten earfull today, huh? Deborah-I appreciate you! Did you know how much? Now you know!

Name:

Betsey

Email:

Date:

17 Jan 2001

Time:

13:33:43

Comments

Deborah, I hope I didn't embarrass you by making you the focus of my long entry! I just think you and some of the others need to know that you do a great job and we like it!!!!

Name:

Mommy

Email:

Date:

17 Jan 2001

Time:

23:59:29

Comments

Conner had another good day. I am pretty sure that Conner had a cold before we did. I couldn't know that though until he didn't get sick this week. I think he has had colds before but I didn't know because I just thought it would have been a lot worse. I think one reason he managed well was because his tonsils and adenoids were out- so that avoided the opportunity for those infections. Anyway, whatever, he made it through fine and with no suctioning down the nose-just a little bit into the nose with saline and inexsufflating. Conner had his first bath in his Rifton bath chair tonight and it was like heaven! After initial crying, I (and John-that was funny) started singing to him and he got distracted. After he stopped crying he was fine and was trying to look down at the chairwith his eyes-which is hard when his head is lying flat against it. We sprayed foam on the tile and in his hands and he liked that. It was great for me to have both hands free to wash him. And he was perfectly stable and flat-no choking!! I think after a few chokeless baths, he will really enjoy the water again. I just put Conner to bed and he was staring at his black light reflecting the glow-in -the-dark dolphins on his wall. He had the biggest smile on his face from up under his bipap. I don't often get to see him go to sleep with a smile on his face. Very nice. I cried.

Name:

Alison

Email:

ast1127@hotmail.com

Date:

18 Jan 2001

Time:

07:59:04

Comments

Thank you to Deborah and all the others Betsey mentioned. You are appreciated more than you can imagine by Betsey's friends and family who are far away and can't be by her side. It is a comfort to me to know Betsey has such a wonderful people to help her get what she and her family need. Betsey - Your courage, strength and compassion are an inspiration to everyone who knows you. I am a better person because you are my friend. I think about you every day...

Name:

Robyn Petty

Email:

Steele815195@aol.com

Date:

18 Jan 2001

Time:

15:33:13

Comments

Hi Riggs Family! Hope you are all well and over your colds today. It is freezing in Texas, raining and yuck. We expect ice and maybe snow. I am so glad Conner is enjoying his bathtub again. It sounds like he is so happy despite his medical obstacles. He has such a loving Mom and Dad and that makes for a happy baby. I love the pictures of him -- he is adorable. I told my neighbor about the website and she read all about you guys and ask me all the time how everyone is doing. It is funny because we talk about you guys like we have both known you forever. She tells me that they are praying for you. Give Conner a big hug and kiss from us. Hope to see you soon. You all remain in our thoughts and prayers! Love, Jeff, Robyn, Keith, Madison and Steele

Name:

Beth

Email:

wdsands@bulloch.net

Date:

18 Jan 2001

Time:

16:37:51

Comments

Betsy, My name is Beth and although I have never met you face to face, I feel as though I know you well. My aunt, Diane, keeps me up to date on you, John, Connor and Ms. Connie. Your son is beautiful and the web page looks great. Know that your family is in my thoughts and prayers. God Bless, Beth

Name:

Deborah Whitfield

Email:

dmwhit@frontiernet.net

Date:

18 Jan 2001

Time:

17:26:13

Comments

Hello again Betsey, Thank you for your sweet comments, but believe me I receive more from you and your precious family!!! You are an inspiration to me!!!!! I talked to PSA today and they were supposed to call you. Please tell me they did! Evidently we are in the phase where they determine amount of nursing time. Let me know. You know I'm praying!!! Let me know if you need anything. Love bunches, Deborah

Name:

Mommy

Email:

Date:

18 Jan 2001

Time:

18:47:50

Comments

Thanks for your thoughts and prayers. It reminds us we aren't alone. Conner's had a pretty good day. Hate to say it but he has had stomach issues today. Its probably coming off that antibiotic. He woke up very late-about 11:20, got his treatment while watching videos, occupational therapy, visit with granddaddy, hook up to bipap but no nap. John felt too bad to turn the tv off while I was gone because he said Conner would "cry uncontrollably" when he tried to turn the tv off. John, you have to just turn him over and kiss him and turn everything off. So, he didn't nap until about 4:30 when I got home and turned him over, kissed him and turned everything off. He'd watch tv all day long and never sleep if you left it on. But he has been in a good mood today and feeling fine despite his "stomach issues." Thanks for caring.

Name:

Jill Burnett

Email:

ljillburnett@hotmail.com

Date:

18 Jan 2001

Time:

20:08:08

Comments

Betsey,

I have so enjoyed coming to this site ever since John finally got my email right and started emailing me!! Just kidding! But seriously, those stories are so heartwrenching, but at the same time so wonderful. They make us all realize how fortunate we are just to celebrate life and to be able to be loved and to love someone. I think in the big scheme of things that is what it is all about and some of us just get to "get it" much sooner than others. That may not make it easier, but I think that it's true. Anyway, thank you for sharing your life with all of us. You are all loved and thought about sooo much. I continue to pray for you, Conner, John, and Miss Connie (as well as the entire family) daily as I have done for so long. I pray for all of the doctors, nurses, researches, etc. out there who are working on this thing called SMA and trying to find a cure. Keep up the good work. You are a phenomenal person.

I emailed you the other day by clicking on the part that says "email our family". I don't think you received it, because I was letting you know what I had found out about the mirror. Hollie later told me that she had talked to you about it and John picked up the catalogs when he picked up the bathchair. I hope that you like the one we picked. I regret that it is not just like the one you found at superduper. Let us know what you think. I am so glad that the bathchair worked. I hope you guys figured out how to work it. Hollie said that she didn't get to show John. Take care and give Conner kisses from all of us at CMS. Love, Jill

Name:

Betsey

Email:

Date:

19 Jan 2001

Time:

00:39:31

Comments

Thought you might be interested to see what a jerk Bill Mahar is. I emailed them just to shame and embarrass whoever had to respond. I don't know why I even responded except that there are others who would be so hurt by his comments and don't have easy access to a computer. He didn't hurt me or Conner's dignity, he only scarred his own character. This is an excerpt from the transcript on the show "Politically Incorrect" from last Thursday.

Bill: But I've often said that if I had -- I have two dogs -- if I had two retarded children, I'd be a hero. And yet the dogs, which are pretty much the same thing -- [ Laughter ] What? They're sweet. They're loving. They're kind, but they don't mentally advance at all. Cynthia: I'm going to throw my shoe at you for that one -- oh! Bill: What? Dogs are like retarded children. Jay: The show is living up to its name. [ Scattered boos] Sarah: Boo. Cynthia: My 9-year-old nephew is retarded. I've never thought of him like a little dog. Bill: Well, maybe you should. [ Scattered boos ] Sarah: But I don't think you ought to use the word retarded. I don't think that's right. Bill: Don't use the word "retarded"? Well, what word should we use? Sarah: Just a regular person. Bill: But they're not a regular person. Sarah: Well, they are regular people. They have a heart and a soul. Cynthia: Limitations. Bill: They have a heart and a soul and a brain that's retarded. That's a fact, people! Excuse me! Sarah: No, because you can't say that. Do you know their brain is retarded -- this word retarded? They could just be lacking in the ability. Bill: That's what we call retarded. [ Laughter ] I mean, people, are you all retarded? I mean -- [ Laughter ] That's a fact. Martin: I'm not gonna comment. You're a hideous, cold person. Bill: I'm a truthful person. We've gotta take a break. We'll be right back. [ Applause ]

To: ABC Audience Relations Subject: comment on a show Dear Bill, I heard about the show regarding retardation. My only intention is to share with you my physically retarded son. He has golden brown hair and green eyes. Conner came into our lives physically perfect but his muscles have deteriorated over the past year and a half. He will die soon completely physically "retarded." But he will have been loved more than a family dog. He has touched more people in this community than any hound ever has. Conner is perfect to us though some may only see what he lacks. Thanks for listening, Betsey Riggs

This is what was emailed back to me from audience relations. In response to viewer concerns about the January 11th "Politically Incorrect" show, Stu Bloomberg, Co-chairman of the ABC Entertainment Television Group, has issued this statement: "We feel Bill went significantly over the line of 'political incorrectness', and we apologize profusely for the insensitivity of his remarks."

Name:

Lucie McKinney

Email:

Date:

19 Jan 2001

Time:

07:36:35

Comments

Dear Betsey, Good job. People like Bill M. will have to face a harsh reality. You and John are being wonderful parents. You are one spunky girl. We love you and pray for all of you daily. Love, Miss Lucie

Name:

Robyn Petty

Email:

steele815195@aol.com

Date:

19 Jan 2001

Time:

10:20:57

Comments

Hey Betsy! I just read you entry about Bill Mahr. First of all, we won't even watch him because he is so crude. I am amazed he is still on the air. I am going to e-mail them as well that was the most insensitive thing I have ever heard someone say. It is a shame that you should have to take time out of your busy day to respond to something that hideous. Conner is so fortunate to have you as a Mom. Keep up the great work. Give him a kiss. You are all always in our thoughts and prayers! Robyn

Name:

Mommy

Email:

Date:

19 Jan 2001

Time:

18:07:44

Comments

Conner is getting ready to go around the corner to his Grandmommy and Granddaddy's. We know Grandmommy doesn't feel good sometimes and Conner doesn't feel good a lot so we are going to merge them since Conner is doing okay for now. Yay! He gets to stay the whole weekend (since we have to take EVERYTHING). Its so close John and I can go back and forth if we want to and spend the night there. Conner just got his bath which is now so easy. I don't dread it anymore. I think we may even go out to eat tonight while Conner is hooked up to his bipap and getting ready for bed.

We heard about the nursing. This is weird but we'll take what we can get. Because of the program he fell under its this way but we won't complain. We will get 24 hour/day nursing at first then it will go to 20 then 16 then eventually 8. So, I will be overloaded with training a bunch of nurses then as time goes on it will get easier because whoever is left will be used to everything by then, I hope. The man I spoke to said I wouldn't have to really train them but so many nurses aren't familiar with the inexsufflator or the bipap or the dangers specific to Conner. A lot of these babies die from choking on thick spit or mucous plugs in the chest. I don't want to find out that someone didn't know how to work through a tough mucous plug when Conner has been blue and unconscious for 5 minutes. Can you tell I-who has wanted relief forever-am actually scared of getting relief? I sound ungrateful but I am not and I will get used to this. It will just take a little bit of time. I am very weary of having a bunch of new people take care of Conner. It'll be fine, I'm sure. Talk soon. Thanks for reading and caring.

Name:

Deborah Whitfield

Email:

dmwhit@frontiernet.net

Date:

20 Jan 2001

Time:

09:48:58

Comments

Betsey, I can't believe they actually did what they said and called. Don't worry about the decrease in nursing. We will fight it!!! Typically the reductions are few and far between anyway. Call if you need me. I will call after your meeting on the 21st. I pray for you everytime you cross my mind during the day and at night. You are sooo strong. I'm glad Conner is visiting his grandmommy that is great for all. Love tons, Deborah

Name:

Mommy

Email:

Date:

20 Jan 2001

Time:

18:35:16

Comments

Well, when we took Conner into the house last night, he smiled so BIG! Connie had made a place for him on his fold out foam chair and we put him down and he just smiled and smiled and smiled at his grandparents. He was so happy to be there. Months go by that we don't get Conner over there and they live within walking distance. We got him all fixed and ready for bed then John and I went out to eat. When Conner is clear and well we feel comfortable leaving him on his bipap with Connie and Sonny for a couple of hours, especially if he is going to sleep. We go places very close by-literally just around the corner from our house or their house. So every once in a while-if the time is just right-we get to have a little time out together. We thought Conner had an ear infection because his ear had been draining for about three days then the other ear started draining. But he has no signs of pain or fever. The doctor said to put the antibiotic drops in his ears and lets see if he continues to feel okay. I dreaded having to use the augmentin again since it upsets his stomach. But Conner seems to be doing just fine and really enjoying his time-his big vacation-at his grandparents. Thanks for thoughts,prayers, comments, support.

Name:

Kathy Kelley

Email:

kkelley@mindspringcom

Date:

20 Jan 2001

Time:

23:58:47

Comments

Hi Betsey, It's Lisa's Bennett's mom. I just got off the phone with Lisa and she gave me your website. Conner is absolutely the most adorable child I have ever seen! I have wanted to see a picture for a long time. I especially like the picture of the three of you.

I am very proud-but not surprised- at the courage you have shown through all of this. Conner is such a lucky little boy to have such a brave and strong mother to share whatever time God wants to lend him to you and John. He is truly an angel on loan. I would love to come with Lisa to the fundraiser and get to visit with you. I have retired from teaching- thank goodness!! After 23 years.

I will continue to visit the site to hear of Conner's progress and pictures. It is obvious that he has a wonderful extended family to support him. I will keep all three of you in my prayers. Love, Kathy Kelley

Name:

Aunt Shannon

Email:

socarlisle@yahoo.com

Date:

21 Jan 2001

Time:

23:53:28

Comments

Hi my sweet baby!!!!! I just wanted to visit and see the new pictures!! They don't make them cuter than you.

We cant wait to see you in February. Lauren and Drew are very excited. We love you!

Hugs and kisses from us to you and mommy and daddy

Name:

Marsha Hagan

Email:

Marshagan@hotmail.com

Date:

22 Jan 2001

Time:

10:54:59

Comments

I am very impressed with Mr. Conners webpage. I haven't been here in a while. His pictures are great and I love that you have this outlet to share it with all of us. Thank you so much for sharing Conner and your thoughts with me. He is beautiful and I think you are all doing a great job with him. I am coming to see you all very soon. Hope today is one of those really good days and Conner is feeling great and gives out lots of smiles and kisses to his Mommy and Daddy.

Name:

Mandy

Email:

addeal@bulloch.k12.ga.us

Date:

22 Jan 2001

Time:

12:35:31

Comments

Hi Betsey, John and Conner! Just checked in at your website for today and decided to write a little. (Haven't checked in awhile since things have been WILD here at school and I don't have a computer at home--what a teacher without a computer at home...yes, well some things are more important) Anyway, wanted to let you know that Ken and Larraine had their baby Thurs. Feb 18th (Mama's birthday and Colby's was the next day-19th) Tell Sonny and Connie for me. I'm glad that ya'll are going to get the relief you've been waiting for and yes, Betsey, I understand you kinda not wanting the relief due to fear that something might happen because they didn't "know". It will all work out though. I, along with everyone else I know, keep praying EVERY day (sometimes two or three times) for you and your family. I love you all so much. Take care. Love, Mandy

Name:

Mandy

Email:

addeal@bulloch.k12.ga.us

Date:

22 Jan 2001

Time:

12:36:36

Comments

Hi Betsey, John and Conner! Just checked in at your website for today and decided to write a little. (Haven't checked in awhile since things have been WILD here at school and I don't have a computer at home--what a teacher without a computer at home...yes, well some things are more important) Anyway, wanted to let you know that Ken and Larraine had their baby Thurs. Feb 18th (Mama's birthday and Colby's was the next day-19th) Tell Sonny and Connie for me. I'm glad that ya'll are going to get the relief you've been waiting for and yes, Betsey, I understand you kinda not wanting the relief due to fear that something might happen because they didn't "know". It will all work out though. I, along with everyone else I know, keep praying EVERY day (sometimes two or three times) for you and your family. I love you all so much. Take care. Love, Mandy

Name:

Mommy

Email:

Date:

22 Jan 2001

Time:

13:32:27

Comments

Hi! Thanks for writing and thinking of us. Mandy that's great about the baby! I will email you after I talk to John's parents. Conner is doing good today. His daddy had to come home from work to care for him while Mommy went to the Medicaid appt. Soc. Security is wed. then we are certified for a while. I hope he gets SSI. That will help supplement some lost income. Conner is talking right now and it is so funny. He is just practicing his sounds. Thank goodness John got the Video camera running to catch it. Did you see Conner's big boy pictures? Grammy bought that little suit for him a while back and he was finally clear and well enough to go through all the movement to put it on. I had to share his cuteness. A nurse is starting tonight. A full night's sleep? We'll see. Talk soon, Betsey

Name:

Betsey

Email:

Date:

22 Jan 2001

Time:

15:45:44

Comments

Can you hear the music playing on the front page? It is a very pretty song. Celine Dion chose to sing it when her niece died of cystic fibrosis. Here are the words:

Fly, fly little wing Fly beyond imagining The softest cloud, the whitest dove Upon the wind of heaven's love Past the planets and the stars Leave this lonely world of ours Escape the sorrow and the pain And fly again

Fly, fly precious one Your endless journey has begun Take your gentle happiness Far too beautiful for this Cross over to the other shore There is peace forever more But hold this mem'ry bittersweet Until we meet

Fly, fly do not fear Don't waste a breath, don't shed a tear Your heart is pure, your soul is free Be on your way, don't wait for me Above the universe you'll climb On beyond the hands of time The moon will rise, the sun will set But I won't forget

Fly, fly little wing Fly where only angels sing Fly away, the time is right Go now, find the light

I say that it reminds me of the freedom that waits for Conner (despite the pain it will cause).

Name:

Grammy

Email:

Date:

22 Jan 2001

Time:

17:22:25

Comments

Name:

Grammy

Email:

Date:

22 Jan 2001

Time:

17:27:06

Comments

I am having major problems trying to communicate, but I'll try again...My little Man looks soooooo cute! I love his "lawyer look". Abby just pitched a total fit because I took some Junior Mints from her so they wouldn't spill. What a drama queen! I'd like to think that's the worst thing that would ever happen to her, unfortunately, life isn't that kind. Give my Conner baby some big kisses. Love, Love

Name:

Mommy

Email:

Date:

22 Jan 2001

Time:

23:34:06

Comments

Our second new nurse came (Hope was the first) and she is doing a great job. She will be here until 7 am. The elmos are so cute. Thank you Laura Stants for doing such a great job on Conner's website! Everything is turning out very neat-more like Conner's website with the elmos. Conner has done okay tonight. He got a clog right before his treatment and it took some work but we got it. It gave Elaine a good training session, unfortunately for Conner. Hope all is going well with our friends and family. Talk soon. We love you Abby, Lauren, and Drew!!! Conner says he misses you!

Name:

Terri Bland

Email:

Date:

22 Jan 2001

Time:

23:54:41

Comments

Dear Betsey I told John and Debra Whitfield the other day that I tried this and went on and on for a while with my entry and then hit submit and it wouldn't do. This time I won't write so much and hopefully it will work, if not, I'll get your E-mail address. It was so nice of you to mention me in your journal. You know I have loved you for a long time, and I truly believe that God put us together way back at Candler DFACS, for a reason. I believe I know part of the reason. I looked at all the cute pictures tonight, wonder where he got that beautiful curly hair. He is truly so precious Betsey. I read inthe journal today that you go to Soc. Sec. Office on Wed. please make a copy of application for me so I can send it along with other things to the person who I know is going to make all this a smooth transaction. I will mail it along with all the other stuff just as soon as I get it. I;ll be in Candler office tomorrow and I may have to work in Liberty Co. on Wed. and Thurs I have to be there, so I'll get in touch with you hopefully tomorrow. This computer is in Jordan's bedroom and he is fussing because of the light from the computer screen, so I'll leave for now. You know I love you and want to help anyway I can. My family prays for Conner, you and John every night, and every Sunday, ya'll are prayed for by the prayer team at our church, Metter United Methodist. So many people are concerned and care. You truly are a remarkable person, Betsey, so strong and so determined. I admire you courage. I'll be in contact with you soon. Take care of you all. Give Mr. Conner a big ole kiss for me. Oh one more thing, when I read the part about you E-mailing that looser Bill or Bob or whoever he is, that sounded just like something Terri Bland would do. Remember, if you need any backup with things like that, call me. Mark says I'm the best at being out spoken about everything, to whoever. Sometimes it's a good thing. Glad you poured it to him ol' gal. See ya.

Name:

Lucie McKinney

Email:

lucimck@yahoo.com

Date:

23 Jan 2001

Time:

10:39:58

Comments

Betsey, Conner is sooooo cute all dolled up. All the teachers on my hall came to see the new photos. We think he's the Top Cat. Hang in there with the new nursing schedule. Take care. Miss Lucie

Name:

Mommy

Email:

Date:

23 Jan 2001

Time:

12:32:43

Comments

Conner did just fine through the night with his new caretaker! I am about to go give him his treatment before the therapist arrives. He wouldn't let me take his bipap mask off earlier. He pitched a fit when I tried to remove it so I left it on and let him watch videos. But time to clear his lungs! I have to tell you that those of you who check this site whether you write or not have made one of my dreams about having a precious child come true. This may sound shallow but one the things that I was sad about as we discovered how sick Conner was-was the fact that I had no way to take him to the store or to our friends houses or to the mall or wherever to brag about my precious baby and show him off. This website was my way of doing it since he can't easily leave the house. I am just as proud of him-even more so-even though he can't move. It doesn't make him any less cute and show-off-able. So, by you caring enough and checking his new pictures and showing your friends(thanks Miss Lucie) and family, you have made that dream possible for me and I am so proud! Thank you so much for caring and loving. You have made Conner's life that much more valuable-if it could be anymore...

Name:

Anne Britt

Email:

abritt@evans.k12.ga.us

Date:

23 Jan 2001

Time:

16:56:20

Comments

John and Betsey, Just wanted you to know I'm praying for you and Conner daily. I just love the pictures. He is so cute. I'm so glad John told me about them. I'm still trying to learn about the computer!!! I told the Guidos about Conner and the staff prays for him every morning at 8:00. Remember I love all of you. Miss Anne

Name:

Doris & Gene Crump

Email:

dcrump2@hotmail.com

Date:

23 Jan 2001

Time:

18:43:00

Comments

Dear Betsey, John & Conner, What a beautiful boy. He is such an angel Betsey. Lisa just sent me this website and I have been crying while reading all your notes and seeing the pictures. Betsey, our prayers and thoughts are with you everyday. We LOVE you so much. You are such a good mommy. May God Bless you each day is our prayer. Doris

Name:

Doris & Gene Crump

Email:

dcrump2@hotmail.com

Date:

23 Jan 2001

Time:

18:43:06

Comments

Dear Betsey, John & Conner, What a beautiful boy. He is such an angel Betsey. Lisa just sent me this website and I have been crying while reading all your notes and seeing the pictures. Betsey, our prayers and thoughts are with you everyday. We LOVE you so much. You are such a good mommy. May God Bless you each day is our prayer. Doris

Name:

Doris & Gene Crump

Email:

dcrump2@hotmail.com

Date:

23 Jan 2001

Time:

18:43:13

Comments

Dear Betsey, John & Conner, What a beautiful boy. He is such an angel Betsey. Lisa just sent me this website and I have been crying while reading all your notes and seeing the pictures. Betsey, our prayers and thoughts are with you everyday. We LOVE you so much. You are such a good mommy. May God Bless you each day is our prayer. Doris

Name:

Doris & Gene Crump

Email:

dcrump2@hotmail.com

Date:

23 Jan 2001

Time:

18:43:19

Comments

Dear Betsey, John & Conner, What a beautiful boy. He is such an angel Betsey. Lisa just sent me this website and I have been crying while reading all your notes and seeing the pictures. Betsey, our prayers and thoughts are with you everyday. We LOVE you so much. You are such a good mommy. May God Bless you each day is our prayer. Doris

Name:

Doris & Gene Crump

Email:

dcrump2@hotmail.com

Date:

23 Jan 2001

Time:

18:43:25

Comments

Dear Betsey, John & Conner, What a beautiful boy. He is such an angel Betsey. Lisa just sent me this website and I have been crying while reading all your notes and seeing the pictures. Betsey, our prayers and thoughts are with you everyday. We LOVE you so much. You are such a good mommy. May God Bless you each day is our prayer. Doris

Name:

Doris & Gene Crump

Email:

dcrump2@hotmail.com

Date:

23 Jan 2001

Time:

18:43:31

Comments

Dear Betsey, John & Conner, What a beautiful boy. He is such an angel Betsey. Lisa just sent me this website and I have been crying while reading all your notes and seeing the pictures. Betsey, our prayers and thoughts are with you everyday. We LOVE you so much. You are such a good mommy. May God Bless you each day is our prayer. Doris

Name:

Laura M.

Email:

lmarsh@frontiernet.net

Date:

24 Jan 2001

Time:

00:11:42

Comments

I was SO glad to read about the nurses! Betsy & John, I simply do not know how you have done it for the last 18 months without a single full night's sleep. We put Ashley June in the hospital Friday for pneumonia (she's fine now) and we spent three nights at Memorial. I'd forgotten what it was like to be woken up every hour or two and yet that is what you have to do every night!! If I can do anything at all, you know you better call me (you promised last time I visited that you would and my phone still isn't ringing!) Once we're "germ free" again, I'll bring you lunch later this week or weekend.

Being in the hospital brought back so many memories - and I can't say that many were pleasant. As we were waiting for an echocardiogram to make sure Ashley June wasn't in heart failure (she WASN'T!), I thought of you, John and angel Conner. Having a child with a chronic condition makes you love them all the more fiercely as you are all too aware that there are no promises for tomorrow. While we are one of the very lucky ones as Ashley June's prognosis is good, I've had to learn, as you have, to put her life in God's hands and just love her as much as we can. You are truly an inspiration to me and to our entire community. I'm so glad Conner has this web site so that we can keep up with all of you even when my contagious child keeps us from visiting. You are all loved more than you will ever know. Hugs & kisses from the Marshes - we love and are constantly praying for you!

Name:

Mommy

Email:

Date:

24 Jan 2001

Time:

12:12:24

Comments

Laura- I will call to see how the baby's doing-I had no idea! We know that unpleasantness. I am so glad she is getting better-very scary. Conner is okay today-feverish last night-ear infections I'm sure from the cold. He'll be fine though. Hope is here now so I am going to lunch with a friend!!!! I have a social life now!!! My ride is here so I am off. I will update you on Conner later. Laura its payback time with the prayers, so know we are pulling for Ashley June's smooth recovery. See you soon, Thanks all for caring and your prayers. They are helping us to stay afloat but probably doing more than we are able to know now.

Name:

Deborah Whitfield

Email:

dmwhit@frontiernet.net

Date:

24 Jan 2001

Time:

15:51:09

Comments

Hey Betsey, Just wanted to give you a quick update. I just talked to Belinda and told her about the switches. She will be in contact with you and we will add speech next week. Love, Deborah

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