It was a difficult time when I gave birth to my son in 2001 with a somewhat unexpected diagnosis of Down Syndrome. It was suspected but not confirmed, just a couple of soft markers. Without doing an amnio, there was no way to know for sure until he was born.
The first thing I noticed was his eyes. And then he turned navy blue from his heart defect. The silence in OR was deafening and staff just looking on. The neonatologist confirmed the diagnosis as a “Down Syndrome situation.” There were no welcome packages or calls from Down Syndrome support groups back then.
As I learned to come to terms with everything, one of my biggest fears was people staring at him and saying mean things when he went out in public. I’m embarrassed to say that for a short time I kept the cover down on the infant seat when we went out. I was that fragile. I already had received a few unkind comments from supposed “friends” that “they couldn’t imagine” i.e. THAT.
I really only got through this time via the Internet and I began to see people with Down Syndrome as the gifts that they truly are. In time, I stopped caring about what people thought about him. And after awhile, I found that people were very gracious to him and he made everyone smile who he came into contact with. At the age of 13, his picture has been in the local news at least five times.
Now, I think there is a certain grace I’ve received as the mom of a child with Down Syndrome that children with other disabilities, such as autism, don’t get. This obviously because of the physical difference. I’ve watched the ugly stares and heard the snide comments from people as I’ve gone shopping and watched moms with non verbal kids who made some noise just try to do their food shopping. (They must do this because they probably have few respite options.)
And then in time people began to stare at me.
I have a movement disorder called cervical dystonia. It causes abnormal postures and head tremors. Thanks to the mega dose of Botox my posture is under control but often the head tremors aren’t. I’ve been diagnosed for four years now without much comment but over the past few weeks I’ve been getting comments from strangers in public.
“Are you shaking your head no at me?”
I smile and try to sweetly explain that I have a head tremor. One guy didn’t bother to listen.
Makes me wonder how people ride the subway if they have this condition. Shaking my head no and accidentally looking at someone in the eye could cause a dangerous situation.
My immediate inclination of course is to respond with a snarky comment. But I know that’s not what God would have me do.
I try to think about people like Michael J. Fox and Maysoon Zayid who don’t let their movements or appearance stop them from getting out there and doing life.
They do inspire me but I’m just a regular person trying to do the regular mom stuff. And getting stared at is hard.
There aren’t good medications for this. Parkinson’s meds have not worked and make my asthma worse. I try different natural alternatives and while they help with the pain, have not touched the tremors.
Unless God chooses to heal me or advances are made in treatment, this is a thorn in the flesh that I will have to live with for the rest of my life. But God promises that His grace is sufficient to get me through it (even when my flesh doesn’t.)