A Question Along the Way

This one will make you cry. From Chewing the fat:

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.

With his permission, I told his parents about what was going on. I let them know that in this case, my wheelchair made the difference. He could talk to me because the wheelchair made me different enough to trust. When they heard, they blanched and then they cried. Both of them. We now talked and they said that they didn’t know what to tell him. They love him. They want him as their son. But in truth, they didn’t know that the baby would have Down Syndrome, and they don’t know what they would have done. They couldn’t tell him that they wouldn’t have had an abortion, they may have. But that was before they met him. Fell in love with him. They looked at me pleadingly, as if I could give them magic answers.

I suggested keeping the discussion in the present. “He’s worried about the present. He wants to know if you would have aborted him. Well, the answer is no. You’ve met him, you love him, you want him. Tell him that. He’ll know it’s the truth.”

“What if he asks …”

“Don’t lie to him!” I surprised myself with the strength of my emotion, “If he begins to ask bigger questions. Give him bigger answers. Just don’t lie. He can stand the truth, he’ll be devastated by a lie.”

They called me later that day. He didn’t ask the bigger question. He seemed, they said, more settled and more like his old self.

“But,” mom said, “we are changed. He only has to live with difference, we have to live with the bigger question. He knows who he is. He’s lucky, we have to guess at who we are, who we woued have been under other circumstances.”

“I told her that I’ve learned, over the years, that life keeps asking us who we are and who we will be. I don’t have a kid with Down Syndrome, but I get asked that question all the time. Growth doesn’t stop at the teen years.”

“There’s more of this?”

“Yep, and it’s not so bad.”

She laughed, “A word from the wise?”

“A word from the old.”

“Same thing.”

“Not always.”