Would a 'cure' for Down syndrome change the love?
/The Boston Globe
August 4, 2013
Beverly Beckham
It was the middle of the heat wave and we were inside sitting on the floor, Lucy using my iPad, looking at Disney characters on YouTube. "Not that. Not that. Not that. This one, Mimi!"
Then she clicked and Mulan sang.
"Who is that girl I see
Staring straight back at me?
When will my reflection show
Who I am inside?"
Then she clicked on "Pocahontas."
"You think the only people who are people
Are the people who look and think like you.
But if you walk the footsteps of a stranger
You'll learn things you never knew you never knew."
Then she chose a clip from the Disney movie "Tarzan." A mother ape walks out of the woods holding a human baby and the other apes gasp and the dialogue went like this:
"Freaky looking."
"What the heck is it anyway?"
"He's a baby," the mother explained.
And the other apes looked again and said, "You know he's not so bad, once you get used to him."
And I looked at Lucy and thought, as I have since the day my granddaughter was born, there is so much going on inside this child.
She turned 10 in June. Double digits. "You're a big girl now," we told her. And she is.
But she is not like most girls her age.
Lucy has Down syndrome and that makes her different. She was born with an extra chromosome that's in each cell of her body. We human beings have 100 trillions cells. With that one extra chromosome present in all those cells, there's a lot more substance to Lucy than to most people.
But substance is not what people see.
Lucy was born with a heart problem that required surgery. People saw this. She walked and talked later than typical kids. They saw this, too. She has trouble forming sentences. She has to work hard to speak clearly. She has low muscle tone. And she is intellectually delayed.
These are the things that most people see.
Her essence?
Lucy wanting me to hear words that have meaning to her. Lucy, knowing when someone needs a hug. Lucy, walking up to an elderly woman in a wheelchair, leaning close and asking, "Are you OK, Grandma?"
People don't see these things.
When Mason, my goddaughter's son, was born in the spring, Lucy, her mom, and I raced to the hospital to meet him. Lucy took off her shoes and climbed onto the bed and plunked herself between Sarah and her husband, Kyle. And draping one arm over Sarah's shoulder and the other over Kyle's she declared with a huge smile, "My family."
Lucy knows things.
Her extra chromosome gets a rap for all of her disabilities. But could it be responsible for this, too, for her ability to love and empathize, for her insight, her honesty, and her genuine goodness?
Last month, Jeanne Lawrence, a researcher at University of Massachusetts Medical School, wrote in the science journal Nature that she and her team had figured out a way to switch off the extra chromosome linked to Down syndrome in human cells in a laboratory.
This is a huge discovery, a potential cure for Down syndrome.
But what does cure mean? What more, besides medical and intellectual issues, is that one extra chromosome responsible for?
Lucy tries so hard. When she was a baby, we would watch her practicing her words, holding her toy mirror and studying the shape of her mouth. She still practices words and phrases. "How are you?" "May I please have?" Is this Down syndrome? Or did she get this doggedness from my father? He couldn't spell. But he never stopped trying.
Lucy likes musicals and show tunes. Is this Down syndrome? Or does she like them because her mother and Aunt Julie and I do?
The other day she sang a duet with me. She was brushing her teeth and I was beside her and she put down her toothbrush, brought her head close to mine, and grinning in the mirror, began.
"Together at last. Together forever.
We're tying a knot, they never can sever!
I don't need sunshine now, to turn my skies to blue.
I don't need anything but you!"
Is this Down syndrome? Maybe. Maybe not. But if it is, why would we ever want to change it?
