We’ve always tried to talk about Down syndrome as a fact of life in our family. We wanted to make sure it wasn’t a taboo subject so that our kids never felt as though they needed to feel ashamed or scared or that they weren’t allowed to ask questions about it.
It comes up most often when Penny asks me to tell her the story about when she was born. She’s heard it so many times she can tell it back to me now. And she can tell me that when we first found out she had Down syndrome, we were scared and sad. But then we weren’t anymore.
“Why you sad I have Down syndrome?” she asked.
“Oh, sweetie,” I answered, “because I thought it would hurt you. And I thought it would hurt me. But it didn’t.”
In recent months, she’s been talking about it more and more. She often reminds me that there is a little boy in her class with Down syndrome. The other day she asked if I had Down syndrome, and when I told her I didn’t, she said, “When you get older, you can have it.” And twice this week, she’s prayed for the baby in my womb, “I pray this baby has Down syndrome.”
“That’s a powerful prayer,” her father said.
“Let’s just pray that the baby will be healthy and happy,” I said.
I’m curious to see what else will come as Penny grows up. I hope we’ll be able to explain Down syndrome as a part of who she is–a part of her that brings with it limitations and concerns as well as joys and gifts. And I hope I’ll be able to communicate all that she has given to us and to many because of exactly who she is.
I listened to an Story Corps interview today that made me imagine these conversations many years in the future. In the interview, a young boy with autism asks his mother questions. It’s clear from the context of the conversation that they have talked about his strengths and weaknesses before. He asks, “Did I turn out to be the son you wanted when I was born? Did I meet your expectations?”
Rather than tell you how his mother responded, I will encourage you to take four minutes to listen: Q&A with Joshua.
It makes me hopeful for those conversations with Penny in the future.
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