This week we went to a play date with a fantastic local association (TVDSA) for people with Down syndrome. We first heard about this association when we were in the hospital for the second time with Braxton. We saw that there were play groups scheduled a couple times a month, along with other great activities and family support, and made a mental note to get involved.
It took us until this week to finally step out and get involved. At first we were busy, in and out of the hospital, getting adjusted to life at home, etc. Then we heard about a family BBQ with the association that sounded like a lot of fun. I wanted to go, and toyed around with the idea for a while. And then, a few days before the BBQ it dawned on me: I was afraid to go.
I wasn't afraid of meeting new people, or worried that we wouldn't have fun. I was afraid of being around people with Down syndrome, and not liking what I would see.
Braxton is young, and very much like a "typical" newborn. He nurses, he coos, we snuggle, and we go about our day. I often forget that he has Down syndrome. The fact that he doesn't have a lot of the classic "features" makes that easy to do. Of course there are weekly reminders like visiting with his therapists or going to doctor appointments. And I am very good at rattling off his medical issues to any new care provider..."Hirschsprung's, VSD, Trisomy 21....". I'm used to saying those things without any thought or emotion. No big deal - it's just what we're dealing with.
But then there are times when it hits me like a bat to the head. Like reading a blog where a three year old boy with Down syndrome has stopped progressing with his vocabulary. Or when I read a book that talks about "mental retardation" and the varying levels of functioning with Down syndrome. Suddenly it hits me that this isn't just something I'm educating myself on...this is my SON we are talking about...and he has the SAME SYNDROME I am reading about.
I realized that if I went to the BBQ I would be surrounded by people who have this syndrome I am slowly learning about. This syndrome that my son has. And I was worried that I might not like what I see. Maybe I have been in denial. Or maybe we just haven't had enough time to let things fully sink in. Maybe it is a process that will take months or even years. Or maybe we just continue moving on and learning and growing along with Braxton.
I am happy to say that we went to the playgroup on Monday, and had a fantastic time. The other moms were warm and friendly and full of helpful information. They've been in my shoes, and it was helpful to hear that. There was a wonderful mix of children who have Down syndrome, and their siblings who do not. My kids had a blast. I enjoyed seeing the interaction between the moms and their children with Down syndrome. It was just like any other mother-child interaction...snuggling, playing, redirecting, disciplining. What I really loved seeing was that the kids who have Down syndrome were having a great time playing, walking, running, making friends. Of course they were. What was I expecting?
I went away thankful for the new friendships I made with moms of children with Down syndrome. But I am still trying to figure out if I fully understand that I am one of them.