1:23am September 30, 2014

➸ Rolling Around In My Head: A Question Along the Way

They didn’t know what was wrong but they were worried. Their son had become remote and uncommunicative. “He’s just not himself.”

Describing their son in words typical to parents of kids with Down Syndrome, “He’s normally a happy, loving kid. We hadn’t expected him to go through a teenage rebellion period but, what the heck, he’s allowed. Then we realized that this is something different. Something darker. We’re worried about him.”

The 15 year old boy was just as his parents described. He didn’t seem troubled, he seemed burdened. He glanced over at me and it was as if he was looking at me from a long way off, not as if we were in a room together. But he was curious. He became present in his eyes. “How long you been in a wheelchair?”

Somehow, I knew my answer mattered. I didn’t want to lie, but I really didn’t want to tell the truth either. Right now I wanted to identify with the chair. “A long time now,” well three years is a long time. “What is it like?”

Truth. “I’m fine with it, others aren’t so good.”

“What do you mean?”

“Oh, you know, staring, laughing, a bit of bullying … that kind of stuff.”

“Huh,” a non-committal sound. I thought I’d hit the mark and his sound let me know I’d missed. Damn that was my best play.

“So how long you been ….”

“Down Syndrome? I was borne …”

“No, I know that,” I didn’t want him to think I was stupid, “how long you been upset like this?”

“Since the show,” he said and made a face like he slipped.

It took a little while but he gave in, I think primarily because he’d been upset for too long. He was tired of it all. He told me that he had been home watching television and he switched to a show that was about Down Syndrome. he said that they were talking about a ‘cure’ for Down Syndrome and he realized later that 'cure’ meant 'elimination’. That most parents choose to not have a child with Down Syndrome. That there was a future without Down Syndrome in it. He was devastated.

For weeks he’s worried about it. About his friends with Down Syndrome. About his parents, did they have the test? Would they have gotten rid of him if they had the chance? He was scared to ask them. Scared about what their answer might have been. After all this, told to me in tone of upset and defiance even, ended in tears. He was afraid that he had slipped by the tests, that he wasn’t really wanted. He now understood exactly where he stood in the world.