Our experiences with Williams Syndrome, a rare genetic disorder.
Saturday, September 20, 2008
(Brandon and Erik admiring a caterpillar lounging on a leaf)
I met Brandon and his family for lunch here in town today. I grab every opportunity I can get with other WS families. Brandon and Erik are so incredibly different in many ways, but they look adorable together and seem to truly like each other. Brandon now has a beautiful baby sister, just a few weeks old, and Erik did better with the baby noises that came from her, although he still clung to me and acted as if she were packed full of ammonium nitrite and ready to explode at any moment. On his list of things that give him the willies, babies are definitely numerouno. Luckily, Brandon's parents are on the same page (the one that lists the potential jacked-up side effects that tend to occur when you subtract twenty-some odd genes from chromosome number seven) and did not take offense in the slightest. What is strange to me is that Brandon seems to be fearless when Erik seems to exercise an excessive amount of caution in unfamiliar surroundings and does not seem to be bothered by sounds like Erik is. They definitely both have very unique strengths and weaknesses, despite having the same syndrome. Did I mention how cute they are together?
I read the following article on line this evening about the death of a 35-year-old man with WS named Dave Hahn. Although I did not know this man, my heart absolutely ached when I saw his photo. He has features like my son. The same eerie physical similarities that come from belonging to a very special family consisting of those who have a genetic birth defect that makes them more perfect and good-hearted than I could ever be, no matter how hard I tried. Over the years, I expect to hear the news of many more premature deaths of those with Williams syndrome, but I can't imagine it will get any easier. Each time, a little piece of my heart seems to float up into the night sky and leave a dark hole in my chest where it once was. I know that in his community there is a hole that will never be filled. It hurts.
I learned the hard way just over two years ago that life isn't fair but it is precious, and I continue to learn that lesson in unexpected ways. Every single day with my son is a gift. This ride is difficult and sometimes very painful, but it could end without warning, so I find joy in it as much as I can. Erik has changed me so much. On the ride back from the valley with Brian last weekend, I looked out my window as we traveled down the highway, and we were slowly overtaking a motorcycle to our right. Behind the man piloting the machine sat an older, surprisingly proper-looking woman. She was very gracefully enjoying a hamburger, taking delicate bites despite their respectable speed, and she looked so incredibly content that I found myself smiling broadly. She glanced over at me, and couldn't help myself. I waved enthusiastically. She waved right back and connected me that much more with the world. I used to look at the ground as I went about my daily life, but now I sometimes take the time to look up into the faces around me. It's what Erik would do, and I can thank him for that. I have no doubt that the world is a better place because of the special people like my son.
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.