Victories come, sweet and simple

The Boston Globe

Beverly Beckham

`The victories, when they come, will be sweet," someone, many someones, told us after my granddaughter Lucy was born.

But we didn't believe in victories then or that life would ever be sweet again. We were stunned and scared and grieving the child Lucy wasn't. The words "Down syndrome" had rocked our world.

We should have listened to the people in the trenches, mothers and fathers and sisters and brothers, people who knew and loved someone with a disability who kept telling us: She will be fine. You will be fine. You will be better than fine. Wait. You'll see. We've seen.

In the beginning it was milestones that made us hold our breath and when Lucy reached them, exhale. Victories? Not quite. Just markers on the progress chart, things to check off, to tell doctors and therapists: Yes, she can do that.

But sweet, too. Definitely sweet.

If only Lucy would smile, we said. She should be smiling. Why isn't she smiling? Peek-a-boo, Lucy. Tickle, tickle, tickle. We made funny faces. We stood on our heads. We did everything but hire a clown.

And she was only 2 months old.

I don't know when Lucy decided to grace us with her first grin, or why we didn't record it after obsessing about it for weeks. But I know she was laughing and smiling when she was only 3 months old because I pasted a picture of her in my journal and wrote. "Lucy was amazing in church today. She was wide-eyed and smiling."

And so Lucy smiled. And rolled over. And crawled. And cooed.

And still we fretted. We were so scared back then. Why isn't she sitting up by herself? Why isn't she standing? Cruising? Walking?

Walking took Lucy a long, long time.

We held out our arms to her. She sat and scooted to us.

We placed her favorite toys out of her reach. She sat and scooted to them.

We said, "She'll walk when Adam walks." But Adam, her cousin, walked and then ran. As Lucy continued to scoot.

And then one day Lucy got up and walked. And that was it. She still scooted sometimes. But mostly she got where she was going one little step at a time.

We checked off another milestone on the progress report.

Her mother, my daughter, has been telling me for about a month now that Lucy knows most of the words to her favorite songs. And that she can recite dialogue from "State Fair," "Babe," "Mary Poppins," and "Cinderella."

"Sure," I've said, smiling. "Sure."

Children with Down syndrome have trouble talking, not because they don't know the words, but because they have low muscle tone and their mouths are small. So forming the words and saying them correctly is hard. They understand but, especially when they're young, they cannot always be understood. This happens with Lucy. Sometimes I know what she's saying and sometimes I don't.

I gave her a bath last week. It was a hot day and the bath was cool and a good place to linger. "Let's sing," I said. And we did.

And then she did, all by herself.

"Doe, a deer, a female deer. Ray, a drop of golden sun. Me, a name I call myself. Far, a long, long way to run," she sang, amid bubbles and rubber turtles and ducks and my total amazement.

Lucy has my father's beautiful green eyes but she also has his not quite so melodic voice. Let's just say that even Julie Andrews wouldn't have recognized the notes coming from Lucy's mouth.

But the words?

The words were as clear as glass.

Lucy even sang the intro, "Let's start at the very beginning, a very good place to start." And the riff, "When you know the notes to sing, you can sing most anything."

Let's sing it again, I said when she finished. And she did. She sang it again and again, until the bubbles were gone. Lucy transformed by music, Lucy pretending to be Maria, singing not in a bathtub but in a meadow, under the sun.

The victories, when they come, will be sweet, people said.

Sweet and simple and unexpectedly profound.