*Lily's July '04 Journal*

July 2004

July 30- Holy Cow!  We are exhasted from our globe trotting adventures AGAIN!  I was to exhausted to update last night and most of the day today just to tired to do much at all! 

We left on Wednesday morning and headed up to Columbus Ohio to go to the Zoo with some friends, it was a good drive and of course Lily was GREAT (as always in the car).  We got there around 2pm then headed over to Zoo with Annette, Madison, Michelle, Brenda, and MJ.  The Lockwoods met us there a short bit later.  We had such a GREAT time!  I think Lily's favorite thing (besides the Merry go Round) was the Aquarium they had, it was AWSOME.  She just smiled and smiled as the fish would swim past.  I guess I will have to take her to the Newport one now!  Anyway, we got there around 3pm and left close to 7:30 or so.  We had a perfect day for it, it was cloudy which is nice so you don't have to worry about taking the umbrella's and such and it wasn't hot at all.   We got to see the new baby Elephant (Lily decided to take a nap) and so many other neat things.  The zoo is extra nice and makes OUR zoo look like a game farm or something :).  It was alot of fun. 

On Thursday we got up and Lily and Madison played a board game called Pretty Pretty Princess, and I have to say she did VERY well with NO movies and such!  Madison and her just played around for a while then we headed over to the mall for a bit before we left.  We had SUCH a great time!  That afternoon Lily got to try out Madison's powerchair and her face just LIT UP when she drove it.  She only went in reverse but it was so cute to see the look on her face when she did it, I am sending some pictures to Laura tomorrow and see if I can get them up on the website.  We just had a great time, it is always nice to get together with friends who you can relate to.  We have something in common, where suctioning, bipaps, cough machines, etc. are common and you don't have to explain them.   Madison is a beautiful little girl, she is 7 and wonderful!  She is alot stronger than Lily, and she talks ALL THE TIME!  I am really working with Lily on that area, I know she can do it, she just has to WANT to do it.

Anyway, we had a GREAT time!  I could go on and on but I really do have to head to bed.  We are exhausted and will be doing NOTHING tomorrow but snuggling in all day long, I hope it RAINS all day so I have an excuse for doing nothing! 




July 27- This has been a busy busy summer for us!  Wow!  Before I go on it has been such a sad week for so many of us in the SMA community with losing Taleah.  On Monday was her funeral, of course I couldn't go but in memory of Taleah Lily and I at 5:30pm our time and 2:30pm Utah's time we had our own little ceremony in honor of her life and in her memory.  Lily and I had a balloon send off and we lit our "Tia" candle here at home.  I tried and picked out balloons that would represent Taleah's life.   We had a white balloon for her innocence and purity, a red balloon for the joy she brought into so many people's lives, a pink balloon for her girlishness, a blue balloon for the sadness that is left behind, a purple balloon for the princess that she is in Heaven now, and a green balloon for all the other angels that were here on this earth who now make their residence in heaven.  We prayed for Monica, John, and the kids, we lit our candle and read a book called "The Littlest Angel".  While we are sad we are also happy that Taleah can do all the things she wanted to do but couldn't here on earth.  We will always miss her..

Sunday we went to my ex-husbands, step-mothers family picnic :), we had a good time and it was nice to see some of the family that I haven't gotten to see in a long time.  Lily had a pretty good time for the most part with a few tears here and there until she was able to get on the swing set they had!  She loved that!  It was alot of fun, alot of good food, and as always nice to get back home again.

Tomorrow we are off on another short trip, we will be going to Columbus Ohio to the Zoo there with the Reeds (Madison), MJ and Brenda, the Lockwoods (Emma and Nick), and certainly a few others.   The weather is supposed to be BEAUTIFUL so it will be a good time really.  We are going to spend the night and come back on Thursday.  Madison (7) is excited to be having my little 3 year old over for her FIRST sleepover :)  I am keeping my fingers crossed that Lily is a GOOD girl, there won't be much crying, and she can watch OTHER things besides Oswald and Rolie Polie!!!  Should be fun huh ;).

After that in a few short weeks away is the FIRST SMA Support Gathering in Greenville South Carolina!  I have to admit I am BESIDE myself with excitement!  I will be able to spend time with my BESTEST friends there!  YEAH!  We are making it a family get away too, Travis and Dena will be going, Noni (my mom) and Pappy (my dad) will be going too, we are going to have a GREAT time there!  The McAdams will be there (www.our-sma-angels.com/skylerbingaling), I talk to her just about EVERY single day so we can sit around and LAUGH all day long!  So many wonderful people will be there and there is really nothing schedueled so it is just a get away sort of weekend which will be fun fun fun!  The problem with the FSMA conference is that your always running to go to a meeting or dinner or something, this one will be more laid back and you will be able to be social in a more relaxed setting.  I am excited ( can you tell???).

Well, I guess I should hit the hay now, we are leaving early in the morning since we are all meeting at 1pm.  I am sure I will update when I get home! 



July 24th- Starting off by saying "Happy Birthday Sweet Taleah", she is 4 today celebrating in Heaven along with all the other SMA children who have gone on before her, my precious son Nathan included in with that group.

It has been a tough time dealing with this loss...but I am going to update.

We have of course been very busy, the summer is just flying by so quickly and before I know it Lily will be starting preschool (waaaaaaaa) and it will be winter again (ugggg). 

Last week on Saturday was Lily's fundraiser, it was very successful and I have so many people that I want to thank for that, alot of hard work was done on their part to make it such a successful event that night!  First of all is of course Debbie and Richard Brock how dedicated alot of their time and energy to make it a wonderful night, the wear and tear on their home, along with the countless hours behind the scenes gathering donations and all those sorts of things.  Along with Richard and Debbie was Linda and Bob Brock as well, Linda worked so hard, she was constantly doing something, running up and down stairs, up and down the yard, etc.  Sherri and Charlie Brown who worked so hard with everything as well....the band Neon Blue who played so well and sounded so great, and of course so many other people that I can't even begin to name that made the event so much fun for us!  Thank you to all the people who came just because you love Lily, it made me feel so special and loved to know that Lily means so much to so many people!  Of course thank you to everyone who donated things for the silent auction, the raffels, the door prizes, etc.  Many of you I don't even know your names but none the less you are no less appriciated!  We thank you so very much from the bottom of our hearts!   Thank you to Karen (we love you Karen) and her daughter and boyfriend who drove from quite far away, donated things for the auction, for the gifts, and most of all for your company for the evening.  I could go on and on....but we had a GREAT time, Lily had a wonderful time and made it though the WHOLE thing dancing and having a GREAT time the whole night.  It was a ball!  They raised close to $4000 dollars for the event which is AWSOME!  Thank you SOOOOOO much!

Of course besides that we have been running around and going as much as we can.  Today we were supposed to go to the Zoo but got sidetracked and ended up just going shopping (which is always a good thing to Lily) but we went to the outdoor mall and had a good time.  I just needed to go, to get my mind off of things...it has been a very hard month with losing Gilly, Nathan's birthday, and losing Taleah and Lily has been so bored in the house.   It was beautiful today, certainly not to hot or cool, just right so off we went and had a ball at the outdoor mall walking around with some friends, it was fun. 

We did go swimming again this past week, my goal is to go 2 times a week but we only to make it one time this week and probably won't make it any this coming week, but we did go on Tuesday evening this week and YEAH the pool was fairly empty.  I decided to go in the evening hoping that not many kids would be there and yeah, it worked!  We pretty much had the pool to ourselves and it was a nice time for both of us.  Lily is doing GREAT in the water, she does cry a bit when she first gets in because of the water being cool (really it is warm but you know how it is when you first get in) so we have to warm up then she really enjoys herself.  It is so relaxing and she is doing a great job with moving and such so maybe she can build up some of those muscles in the water.  I am letting her get comfortable in the water before I start pushing her to do more things in there, probably this fall I will work on getting her more upright and such in the pool.

Well, I think that is all for now, last night we had a candle-lighting for Taleah and prayers for her family.   Please join me in praying for Monica, John, Ethan, Natalie, and Colin for comfort and peace, they lost a precious, beautiful child.....

Hugs to all :)




July 23- There are so many things that I need to write about but first let me start off with this.

It is another sad day in our SMA community, Taleah English has traded her earthly body for a glorious body in heaven.  It saddens me to write this, Taleah, or Tia, is a beautiful girl full of life!  She passed away last night quietly amist her family.  The English family have been a source of strength through the years for so many people, Monica, Taleah's mom, was the first SMA family that I spoke with after Lily was diagnosed and she offered me so much hope!  Taleah has been an inspiration to many in her short life.  She would have been 4 years old on Saturday the 24th and she will be celebrating in Heaven this year.  My heart is broken, once again, for the English family.  Taleah was (and still is) one of the smartest, sweetest girls I knew.  I was able to meet her and spend time with her and her family first in Washington DC last year at the SMA Conference, and again this year in Chicago at the conference again.  I have so many wonderful memories of such a smart wonderful little girl that they would fill this whole journal for pages and pages but let me share a few of them.  Last year at the conference, Monica set up Taleah's sling to hold her arm gave her a piece of paper and pen, right away Taleah scribbled the name "Tia" on that piece of paper...an amazing feat for a almost 3 year old with SMA type 1!  I can remember all of them (Ethan Burnett, Lily, Madison Burger, and Taleah) snuggled all together on the bed watching a movie as well.  This year at the conference Lily and Taleah couldn't get enough of each other, they sat in their strollers just staring at each other, Lily was in awe of Taleah.  Another time when we were all in the type 1 room I brought down Lily decked out in her princess crown and sash...Taleah's eyes just lit up....Lily had to share it with her (and Lily was not a happy camper)...Taleah looked beautiful with those beautiful eyes shining and the crown on her head.  I could ramble on and on but I cannot, right now, it is just to fresh right now.  My heart is truly broken right now, it should not have to be like this EVER.  I wish I could take the pain away from the English family but I cannot, grief is a road that never ends.  The only comfort is that Taleah is now running and jumping...but mainly walking, something she wanted to do and even spoke to her mother about earlier this week. 

I have been in the SMA community now for over 5 years and thoughout that amount of time I have "seen" many children die, it is a horrible thing to know so many people that have lost a child and know that it is a tie that binds some of us, it isn't right, I am only 33 yet I have many friends who have lost children.  Just in a little over a year there have been several of my dearest friends who have lost children....and it is just horrible.  This disease has to end, forever!  I wish there didn't have to be one more child who would have to be diagnosed, or one more child lose their life over this.   It scares me....I can't even think about losing my precious little Lily yet when things like this happen it is so real, it could happen, and I pray and hit my knees that it does NOT happen.

Precious Tia...your light will always shine on...you are so loved here on this earth and while you now make your home in the Heavens above you will remain in many peoples hearts here on this earth.   You have been in heaven now for a day and I imadgine you have had a wonderful time taking your first steps, running around playing with all your friends that have gone on before you maybe even playing a game of hide as seek, you have probably taken your first taste of ice cream and maybe it dripped all over your fingers....hearts are broken only because you had to leave but many hearts are happy that you are so happy now...fly sweet girl...fly.  You can visit Taleah's website at   www.storesonline.com/site/taleahlouise

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July 15-Again, thank you to Laura for getting the pictures up so quickly!  I think we are now up-to-date so hopefully I can keep things up from now on!

Nothing much to report really, we have been busy but just with running around and not doing anything really exciting.  We are looking forward to this weekend and seeing everyone in Northern Kentucky for Lily's Fundraiser that the Brocks and others have worked so hard on.   I will make sure to take LOTS of pictures for everyone to see.  It is always nice to be with friends who have kept up with Lily for her years here and who care enough to plan something like this out.  We had such a great time last year and we are hoping to have good weather for it again this year. 

We did go swimming again on Tuesday and had fun.  The problem is how busy the pool is!  I was going to take her swimming again this evening because I thought once the Day Camp kids left and people were home having supper and stuff with their kids it might be a good time to go BUT they have Swim Team there and the pool is closed from 5-7 and I can't really take her out at 7, it is to late with having to get her ready for bed and such.  I am hoping to go tomorrow afternoon with her but once school starts we will probably make it a twice a week thing.  She does so well in the water and she seems to really love being able to move.  It is very relaxing and a great way to spend time with Lily without competing in front of the video/tv screen.  We are face to face the whole time and can spend time chatting back and forth with each other.  When we were there on Tuesday Pappy and Noni came up to watch us and they thought it was cute how much fun she was   having in the water.  I don't think she quits smiling in the pool!  She has been able to actually roll herself over in the water getting some use out of her back muscles which is really cool.  She loves to crash her legs together touching her feet together and can do it on command now.  We are working on some other stuff but for now it is just a fun time for us, I can work on things once she get really used to getting in the water.

I did get the Pre-school application today :(  My girl is big enough to go to school *sniff, sniff* but really it is cool.  Good luck to the teachers who work with her...she HATES anything that has to do with learning!  She is so funny and is such a bull-headed little thing!  The only thing she tolerates is her computer so hopefully they can use that alot while she is learning.  She will have a teacher come 2 times a week then she will also have the PT, OT, SLP come I think once a month as well.  I am going to continue private PT once summer is over with again with Beth.  We need to keep a PT around for things she is going to need. 

I need to get motivated to get her into the Wheel-chair Clinic for a powerchair!  She needs to be in power.  One of the cool things about the conference was watching all the kids flying around in their powerchairs.  I know Lily will be alot weaker than them (mainly type 2's) BUT with her bipap on I think she can handle it for a while and I thinks he will love the freedom of being able to go on her own.  Another thing we will have to be working on this coming up winter is a new stroller because she is quickly outgrowing this one she has!  I did get to see the twins (Cassidy and Skylar) in their EasyS chairs and that is what Lily's next one will be.  It is very nice.

Well...I guess that is all for now!  HUGS and thanks for keeping up with us!  I hope you come back and check on us often!


July 10- Ok, thank you to Laura who so quickly got everything up and running on Lily's website so quickly!  Yeah!  You can come here now and check out the journal, keep up with new pictures, and all the other things that will be changing on the website. 

Things are going fine here...lets see when did I last update?  Ok, first we made it to the conference.   Early this week I will have pictures up on the website of that as well, I am trying to catch up with pictures over the last couple of years (you can see the new ones that are up).  I will get the rest of them updated this week and Laura will get them up.   Anyway, we did make it to the conference, we had a great time seeing everyone and looking at all the things there.  They had our next stroller that Lily will be getting there, it is tooooo cool!  It is called EasyS seating system and it is really really a GREAT stroller and since Lily is quickly outgrowing her Tiger we will probably start the process this winter so she can have it for next spring/summer.  Anyway, we met the lady who will be handling it for us, she was wonderful and so helpful!  I know that insurance will deny it (well I am almost 100% sure) expecially since I am going to be fighting for a powerchair for Lily. 

We did get to see lots of people and hang out with all my friends that I keep up with online.  It is so nice to be around a group of people that suctioning, bipaps, cough assists, and such are the norm and your not so out of place when you have to suction your daughter.  Lily and I got into the pool a couple of times and she LOOOOOVED it so much!  She was scared at first but quickly came to love it.  I have pictures of Lily and her friends in the pool and I will have those up on the website as well.

Hmmmm, what else has gone on since my last update.  Well, Lily and I joined a group called Wish Kids (well, I guess really Lily joined) and our first outting with the group was to Kings Island!  We had such a GREAT time there as well!  YEAH!  Lily was able to ride some rides and we ran around with Madison Reed, Emma Lockwood, and Nick Lockwood all day (plus Annette, Madison's mom and Beth &Kevin, Emma and Nicks mom and dad).   We had a GREAT time and Lily was so happy all day long.

On Friday we also went swimming at out local pool since Lily liked it so well at the conference.  After a few moments of tears she settled down and had a wonderful time!  It is great exercise for her, she is able to move and is weightless in the water AND it doesn't feel like work to her.  We spent almost 2 1/2 hours in the pool having a great time.

I think I have caught up the journal for now.  It is late and I need to head to bed!  Thanks for being so patient with me for catching it all up and redoing.  I will still be changing some things but we are now back!!!

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June 2004 July 2004 August 2004
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