MDA Telethon

Dan, Peyton and I are going to Grants Farm tomorrow where they hold the local portion of the telethon. We made matching T-shirts with Cole's pic on them and his poem on the back (yeah we're dorks)

This is a story of a family I've come to know locally who just lost a little boy to SMA 1
Here is the link to his story.

http://www.ksdk.com/news/local/story.aspx?storyid=184013

Please remember to support. No donation is too small. Even a dollar.
Kristin

Asking about her brother

Peyton has started asking a lot about her brother. If we see a boy at the playground she says "That's my brother". Lots and lots of questions lately. Where is my brother? My brother is not here. We tell her that Cole had to be an angel and that he's in heaven. We have gone to the cemetery with her but am kind of uncomfortable telling her much about the actual cemetery part of it. We just tell her that where we visit and remember him. Why is this SO hard. Why does she have to grow up without him. It's SO unfair.

We love you Peyton. I hear you in with daddy reading books. You should be ASLEEP!!

Nite nite little one. Mom loves you

Cole's 7th birthday

Little Cole would have been 7 today. 7 !!! Can you believe it. We sent up balloons ( I would have had pictures if I would have had a cf card in the camera, stupid me!!). Peyton held the balloons and let them go for him. She said "My brother is going to catch them" She also asked if her brother was going to come to her house today and if he was at church with Jesus. How do you even begin to explain to an almost 3 year old even who he is much less where he is. She knows he's her brother, but she brother is really just a word she knows. When we point out something that was his or talk about him she usually follows up the sentence with "but he's not here" I know she doesn't get it.

Anyway, it is what it is. A silent shout out to the asst manager of Walmart who blew up our balloons for us, even tho all the people in the bakery had gone home. He doesn't know how much he meant to us not giving us a hard time and just being nice. Also a big thank you to the stranger in walmart who "wow you really look cute" even tho she had no idea that she just made a really hard day a little better. Maybe our angel was whispering in her ear.

Kristin

I'm soo bad at this

I can blame a bazillion reasons for why I don't keep this up to date. The biggest is that I'm so bad at this. It's been almost a year (a week shy) since I've been here. Cole's birthday is just around of the corner again and Peyton doesn't even look like this anymore. I can promise that I will be more on top of things, but who knows if that will ever happen. Anyway, we're still around. Peyton is growing big and has ALOT to say. She is so smart and even when I'm frustrated beyond words with her, I try to remember exactly what a precious gift she really is. We had a good day, lots of playing, lots of smiles.

Happy Birthday baby Cole

AUGUST IS NATIONAL SMA AWARENESS MONTH and Baby Cole's 6th birthday (TODAY Aug. 13th) Has it really been almost 4 years since Cole went to heaven??????
Dan, Peyton and I observed Cole's special day by sending up balloons and eating some cake in his honor. Peyton sang Happy Birthday to baby Cole. We miss him and cannot believe he would have been 6 already. Where does the time go. Here are some pics.

The Power of $1
We've all witnessed what a single $1 can do if people are willing take a few minutes and mail it. Just think of all of the yellow bracelets that you see around - I hear Lance Armstrong raised more than a million for cancer research. I'm going to try to do the same :0) Ok -- maybe not a million, but heck what about $1,000 or $5,000 or even $10,000. I'm asking you to give a $1 -- not for a yellow bracelet or any bracelet at all but just for the knowledge that you will be helping families and kids living with SMA -- helping them get the proper equipment, medicine or other support that insurance may deny. Or maybe it will just be used to send the kids something to brighten up their day or even to help pay for some of the growing piles of medical bills. Or God Forbid, help the parents pay for the funeral expenses of the child they lost to this disease.

If you feel like you can spare your dollar -- here is what I am asking you to do:

1. Get your $1 (more if compelled)
2. Write SMA Hero Cole somewhere on a post-it attached to the dollar(or any other person who is living or has lived with SMA)
3. Put it in an envelope and send it to:
SMA Support Inc.
PO Box 6301
Kokomo, IN 46904-6301
and last but not least
4. Forward this email on to all of you family and friend. (or tell everyone you know)

Where is your money going?

SMA Support is an all-volunteer, non-profit, 501(c)(3) tax-exempt organization dedicated to providing information and support to family, friends, individuals and caregivers on all aspects regarding the devastating genetic disease called Spinal Muscular Atrophy. You can learn more about SMA Support and SMA by going to www.smasupport.com

Thanks and God Bless!

Kristin Webb

The Potty

I've been practicing with Peyton for weeks now to introduce her to the potty. Although we aren't potty training yet, we do want her to be familiar with the potty. After weeks of putting her on it and saying Pety go pee pee, Pety go poo poo, today she went pee pee and poo poo on the potty for the first time. I made the mistake of showing it to her and it kinda freaked her out. Hopefully this will be a beginning of her knowing what to do, or what I mean when I say pee pee and poo poo on the potty.

On another note, it was beautiful today (snow on Monday but that's a whole nother story). We played outside in the yard today and walked up the road a bit. We were trying out the new camera outside a bit and took a cute one. She had a bit of difficulty walking in the grass, but it's been so darn cold all winter that we haven't been out much. Can't wait until spring and things get a little greener around here.

Just thought I would give you guys an update.
My baby is growing up into a big girl. On Sat. night we drank our last baba. (I know I know. She's almost 16 months now. I just couldn't admit my baby wasn't such a baby anymore.) Sad day for me. I think I took it harder than Peyton did! It's the only time she snuggles anymore. I'm so sad. She is so big now. Has 30 words there about and running and climbing all over everything. I know it makes me happy, but boy is she a handful and she has such a TEMPER!
What else do I know.
I don't know if you guys remember, we had a pic of our little Cole dressed as Cat in the hat one halloween. We saved the costume out so that we could take Pety's pic and put them side by side in her room. Well, we are going to have to try these pics again. She was most uncooperative. She kept throwing the things an wouldn't even hold them. She did not want to have any part of pic taking that night.
My lights are not quite set up right, but this is the look I'm going for eventually. It's my first lame attmept. I'm still trying to learn as much as I can about the photography stuff and still trying to learn exactly how to use my camera and lights. There's SO much to know. It a wonder that people ever figured out how to do this in the first place.
Hugs to all.
K, D, P and angel C