Never Say Never
/The Boston Globe
2007
“The tooth is missing. It will never come in. Missing teeth are common among children with Down syndrome,” the specialist told my daughter and son-in-law months ago.
He didn’t cushion his words. He didn’t say, “May not.” He said never.
And then last week, there it was – a lower right lateral incisor, next to her lower right central incisor, exactly where it belongs.
“Well, what do you know, Lucy Rose,” I said standing all 35 inches of her in front of a mirror. “Look at what you have - a brand new, shiny, white tooth!”
I called my daughter at work. “I know,” she said. “I saw it this morning. Can you believe it?”
I can now. Because it is here in front of me. But I thought never, too. Because the specialist said. And once again, I believed someone I shouldn’t have, someone who doesn’t know Lucy.
She will never walk.
He will never speak.
She will never go to college.
She will never have a full set of teeth,
When you have a child with special needs - with Down syndrome, with autism, with diabetes, with muscular dystrophy - with anything that’s chronic and defies a cure – you hear “never” all the time.
Doctors say it. Strangers think it. And it rubs off.
It’s what we thought – Lucy’s mom and dad, grandparents, aunts, uncles – in the beginning after Lucy was born and doctors and nurses looked at her, and us, with a “There, but for the grace of God, go I” in their eyes. It’s a great misstatement, this phrase, a huge spiritual falsehood because it means that God withholds his grace from some people and bestows it on others.
This isn’t true. God doesn’t withhold grace. In fact it was through the grace of God that Lucy came to us.
Lucy, who is almost four now. Lucy with her new front tooth. Lucy who has surprised doctors and keeps surprising us.
She made a joke the other day. We were in the kitchen and the window was open and I said, “Listen to the birdie, LuLu,” because something was crowing madly in the back yard. And Lucy, who has heard me tease, a million times, that a cow says oink and a pig says meow - (And then she corrects me, because she knows it’s a game) - looked me straight in the eyes, shook her head and said and signed “Mouse.”
Mouse. Not bird. See how clever I am, Lucy was saying.
She is clever. And resourceful. Two days ago, she was trying to tell me something about a rainbow and was signing and saying “bow” over and over. But I wasn’t understanding. So I was guessing. “Cookie? Ball? Outside? Plane? I don’t know, Lucy. I’m sorry. I’m not getting it.”
And instead of screaming in frustration or giving up - she never gives up - she sat still for a moment. Then she hopped off the couch, walked over to the TV, opened the cabinet door, riffled through about a dozen DVDs, found the one with a rainbow on the front and handed it to me.
“Oh! Rainbow!” I yelled like a contestant on a game show who through no skill of her own wins first prize.
“Yes,” Lucy said. Then she hugged me and forgave me my incompetence and smiled.
Pre-natal tests target children like Lucy and doctors apologize when children like Lucy are born. Lucy is a child the world would choose not to have.
Foolish, foolish world.
She will never do all the things that typical kids do. That’s what the experts say. What they fail to mention is all that she will do.
I read this on a website recently and copied and pasted it in my journal. “Common characteristics observed in [people with Down syndrome]: natural spontaneity, genuine warmth, penetrating clarity in relating to other people, gentleness, patience and tolerance, complete honesty, and the ability to engage in unfettered enjoyment of life’s gifts.”
I watch Lucy and her unfettered enjoyment of life’s gifts. I watch and I learn from my first grandchild, who is life’s gift to me.
