SMA BLOG PARTY:  Click to see what it's all about.

My Entry:

I've got a 13-year-old boy who loves music, computer games, books and magazines.  He is funny and bright and sarcastic and likes to tease, go on adventures and sleep in on weekends.   I've got a 9-year-old boy who loves cartoons and monkeys and computer games.  He is very literal but eventually can see the joke *smile*.  He is a homebody who obsesses about Scooby Doo and scary movies.   Both of my boys have SMA (spinal muscular atrophy-type 1) but it doesn't define them, or us as a family.  Yes, SMA is a huge part of our lives but it doesn't consume us.  SMA is a devastating and often deadly disease but we have conciously decided not to let us rule everything we do.  Much of the time we have to make consessions to do things but we still do fun things and make the boys' lifves fun and enjoyable and productive.  AND, they have made us into better people (I find myself speaking here for Gene, too, which I don't usually do, but I think he would agree).   Until I had a child, I had no clue about, well,  about most anything that counts.  I was totally self-centered and selfish.  Having a child opened up the better part of me, for sure.  I can say this now, but certainly not 13 years ago when Casey was diagnosed, but in many ways, SMA has made me a better person, too.  At least I like myself better than I did before kids and before SMA.  I guess having Casey made me more aware of life and love and him having SMA made me aware of determination and desperation and so many more emotions that are sometimes hard to handle but make life bigger.  Does that make sense?

 

Casey on a zip line!




Me and Colin relaxing in the pool.



Brothers!