Our experiences with Williams Syndrome, a rare genetic disorder.
Saturday, December 06, 2008
At our mothers' support group this week, I found myself telling the other women how each of our children has a place in this world, even if we cannot see it at the present time. No matter how severe their disabilities or how short their time on this planet may be, they can and will change the world using the skills they have, one person at a time. I believe that you do not need to know how to add, drive a car, or even speak to make a difference. As I spoke, I realized that my words seemed to be forming more of a question than a statement and that I might be trying to reassure myself that Erik will be okay. What's important for me to remember is that Erik's path is going in a different direction than the neat, tidy one I imagined before the diagnosis came. He will likely not perform surgery, play professional football, walk on the moon, or even do his own taxes, but the things he does are indeed important in ways I don't necessarily understand, and they are straight from his heart. Erik just being Erik is enough to change the people around him forever. He has accomplished a lot in four short years, and I'm sure I don't see the half of it.
Maybe it's the dips on the hormonal roller coaster I seem to be on this week, but the following movie really touched me. I found it in my in box this morning waiting for me just when I needed it. It illustrates my hope for our kids beautifully and soothes my fears somewhat about my own child. As I know that many of you have the same hopes and fears as I do, I'll share it here.
Married to Brian in 2001. Our son, Erik, was born in October 2004. Erik was diagnosed with Williams syndrome by a geneticist in March 2006 at 17 months of age. The diagnosis was confirmed by FISH testing a few weeks later.