We hosted our first Williams syndrome event yesterday - a big backyard barbecue at our house. We were thrilled to have 11 families attend! The individuals with WS ranged from a beautiful 9-month old (recently diagnosed who lives about five minutes away from us!) to a 24-year old woman. (Who also lives in our town and happens to be the same woman I met by chance in Clare's cardiology office a few months ago.) I have to say the barbecue was a great success!
We visited with families who have become friends over the past three years and met many new friends. It's amazing how complete strangers can become so close simply because you have walked in similar shoes. These events give us a chance to share and learn from each other. We commiserate over the scary moments, discuss treatments, options, doctors, therapies, you name it, and can actually compare our children developmentally without sounding like snotty "playground parents." Most importantly, to me at least, it reminds me that our family is not in this alone. Sometimes it feels as if we are the only people in the world living with a child with Williams syndrome. None of our friends understand the ins and outs of what we go through with Clare. Even our extended family can never truly comprehend the struggles and challenges. But these other families can and do. I am so grateful that we live in an age where our world has gotten smaller through technology, and we have this opportunity to connect with those who live miles and miles away.
I hope everyone had a great time! We did! I ate too much and didn't get to spend enough time talking with everyone. We cannot wait to host another barbecue next summer.
I have not downloaded my camera yet (I know, I know, big slacker), so pictures are forthcoming. But Laura did a great job putting together a slide show of the kids at the barbecue, so check it out at her blog.