Tuesday, July 19, 2011

Finally the end of my day! Oh wait my wonderful Angel Chance is wide awake whining.......... Chance is 6 yrs old and has Angelman Syndrome. (more info check out www.angelman.org or www.cureangelman.org) Since he is completely non verbal and whining I have to play detective quite often to figure out what's wrong. This is not fun, one of the worst parts of having a non-verbal child. I wish I could just read his mind. Please tell me what hurts, what's uncomfortable, whats annoying, anything. :( Ok pity parties over turns out he just doesnt want to sleep! Like most kids that age! It's so weird how one minute I feel like the average mom and the next I feel profoundly different, I suppose because my oldest child is profoundly different and at the same time very typical. He loves everything most 6 yr old boys love... monster trucks, super hero movies, sporting events, and annoying his younger sister! But of course he is different than most because he cant walk on his own YET, has no verbal words (still can get a point across), movement disorder with severe sensory dysfunction and the no good horrible seizures. His body does not work well for him, but his mind is beautiful... He finds joy in EVERYTHING. Sure he has his moments when he is upset or feels ill... even in those times if he is crying and whining, he can still crack a smile and give a giggle if something catches his attention. I love that about him. Angelman Syndrome has given us alot of challenges and definitely played a huge part in giving us the happy chaotic life I'm writing here about. Although Angelman Syndrome sucks, our community is fabulous. Most of us dont live near each other but because of the internet we are here for each other through it all. My AS family has become family. The love and support we get and give to each other is something I never would have guessed I'd have when I gave birth to my beautiful boy 6.5 yrs ago. But I am so glad I have it.

Wow, I cant believe how much I've typed so far! I got a lot to say I guess! I'll stop here but if you want to help my son please visit www.helpsavetheangels.com and vote in the vivant gives back contest through facebook. Vote for FAST and help them win $250K that will go to research. Our scientists have already cured AS in mice and your vote could help them discover how to treat AS in humans. Thanks so much :)

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