Down Syndrome Community…16 Years After Penny Was Born

When Penny was three weeks old, we got a call from a woman in town who had a teenager with Down syndrome. She was the head of the local Down syndrome organization, and she wanted to invite us to a meeting that week for parents of new babies and toddlers with Down syndrome. I almost didn’t go. It was too soon. I hadn’t left the house to go to the grocery store, much less for what felt like an intimidating social event. And I didn’t want to meet other parents of children with Down syndrome. I had not signed up to join this club.

But my mom came to town and Peter and I went out for our first date night as parents and then we sat in a conference room around a table with all these other slightly bewildered people who were filled with love and fear and uncertainty about their kids and their futures. One of the other kids represented in that room was Rachel. 

Yesterday, sixteen years later, Penny and I got to spend a day with Rachel and Rachel’s mom. Penny and Rachel reconnected at camp PALS a few years ago, and they now have a weekly “watch party” where they watch a movie together via Zoom on Saturday night. But going to a trampoline park (Urban Air), out to dinner at an Italian restaurant, having a sleepover and watching Mamma Mia, and getting mani/pedis in person is far better. 

I didn’t want to show up in that room sixteen years ago. I thought I didn’t want to meet those other parents or be a part of this community. But now, I am grateful for people who understand the hopes and the fears and the beauty and the ache of our lives. I am grateful for laughter. I am grateful for old friends.

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