Seen through loving eyes
/The Boston Globe
Beverly Beckham
My granddaughter Lucy is 6 years old and is part of a class of people that is quietly being eliminated in my country. She has Down syndrome, a genetic condition that frightens so many women that 92 percent of those who learn they are carrying babies with it choose to abort.
Dr. Brian Skotko, a genetics fellow at Children's Hospital, fears this number will rise. Prenatal tests are invasive, carry a risk to the fetus, and are given in the second trimester, so many women choose not to have them. But a simple new and non-invasive blood test, to be given early in a woman's pregnancy, is coming, perhaps as early as next year.
``As new tests become available, will babies with Down syndrome slowly disappear?'' Skotko ponders in a soon-to-be-published article in the Archives of Disease in Childhood, (a British medical journal) available online now.
It's easy to understand why parents fear a diagnosis of Down syndrome. You Google definitions of it, and even now archaic words and misinformation pop up. It's the same in doctors' offices. Pregnant women are told only the negatives. Old stereotypes linger.
My granddaughter cannot do all the things that typical kids can. She doesn't come home from school full of stories. They may be in her head, but we can't see in there. She speaks and sometimes we don't understand. She can't make a teddy bear with paper and glue, not without help. She can't understand why her grandfather would rather watch baseball than Shirley Temple. She does not have the same skills and abilities that her 5-year-old cousin Adam has.
But Adam doesn't have the skills and abilities she has. He doesn't always enter a room and greet everyone with a big smile. He doesn't always leap to his feet and race to his father when he comes home from work. He can't sit for hours in a fancy restaurant or through a long movie. And he doesn't know instinctively when someone is sad and needs a hug.
He can field a ball and she can work a room. He sings a whole John Denver song, and she sits and applauds.
This is what doctors don't tell mothers having babies with Down syndrome, that you will see in your child amazing things that you won't see in ordinary children.
Of course, parents want healthy kids. And some get them. But children get sick. They get in accidents. They lose limbs. They suddenly stop talking one day.
Children in wheelchairs, on ventilators and crutches? Children hooked up to IVs getting chemotherapy? People on waiting lists for transplants? People with chronic diseases. Soldiers changed by war. Civilians changed by an accident.
They weren't born this way. But if there were a test that showed their future - that showed diabetes and cancer and autism and muscular dystrophy and mental illness and depression and alcoholism - would women take it? And seeing what would be, would they choose to abort?
Last week we took Lucy to Davis' Farmland in Sterling, where we played with the animals. Then we went to a wine tasting at Nashoba Valley, where Lucy drank juice and shared our cheese and crackers and enjoyed the day.
All kids with Down syndrome are not like this. But this is Lucy. She makes me notice the ordinariness of people who don't have it.
In the play ``Cabaret,'' set in Berlin as the Nazis rise to power, a man loves a woman he's not supposed to because he's Christian and she's Jewish. He tries to explain his love to his friends. And because ``Cabaret'' is a musical, his explanation is a song.
``If you could see her through my eyes, you wouldn't wonder at all. If you could see her through my eyes, I guarantee you would fall, like I did. . .''
Like I did. Like Lucy's mother and father did. Like all the people who know Lucy and people like her did. Like the world would, too, if only given the chance.
The Massachusetts Down Syndrome Congress, which seeks to ensure that people with the condition are valued and given the opportunities to pursue fulfilling lives, is holding its annual Buddy Walk on Sunday, Oct. 11. For more information, go to: mdsc.kintera.org/
