Smiles and songs for a happy granddaughter

The Boston Globe

Beverly Beckham

Five hours in a car. It's a long time for a 5-year-old to be confined. But Lucy never complained. Not a tear. Not a tantrum. Not even a pout.

My granddaughter was happy, listening to Rodgers and Hammerstein's "Cinderella," (sung by Julie Andrews; the child has good taste) and singing along. She ate chicken fingers in a nice restaurant overlooking the water, then she was back in her car seat, singing again.

She and her mother and I were on our way home from New York City. We had taken her to see her 19-month-old cousin. We had been to parks and museums, bookstores, and toy stores. We had walked and shopped and eaten and played. And even when Lucy caught a cold and was all stuffy and sneezy on the day we had tickets to "Mary Poppins" she remained a trouper.

I was thinking about this, about what a great kid she is, when I walked into my house and read the cover of the Boston Globe Magazine, which had come while I was away: "Pregnancy and Down syndrome; the agonizing decisions." Lucy has Down syndrome, so I sat and read it.

I wish I hadn't. Its negativity made me question reality. Did I invent this perfect week with my grandchild? Lucy's smiles and her songs. Lucy reading books and running through Central Park, raising her glass of milk and saying "cheers." Lucy remembering to say "please" and "thank you" to every person who held a door or brought her food or handed her a ticket.

The article was about two families who were told that their unborn babies had a 1-in-6 chance of being born with Down syndrome. One couple continued the pregnancy, the other aborted. As background, the author, Dr. Adam Wolfberg, wrote that Down syndrome "results in mental retardation and often a host of medical problems." That prospective parents use early prenatal testing to identify a baby with the syndrome "so that they can prepare to raise a child who will have profound medical, cognitive, and behavioral challenges." And that a determination of Down syndrome is "like a lottery no one wants to win."

The words Wolfberg chose to use - profound, a host of medical problems, a lottery no one wants to win - stung not just because they make sweeping generalizations left over from a time when children with Down syndrome were excluded from the community, institutionalized, and not given the opportunity to learn and to thrive. But because, before Lucy, I would have believed them.

You see things one way when you're on the outside looking in. You see all the can'ts and all the problems. But when you're on the inside looking out?

All you see is a child.

Our family had hoped for a baby without extra challenges. Doesn't everyone? Isn't this why we say, "I don't care if it's a boy or a girl, as long as the baby is healthy." When Lucy was born, she wasn't healthy. She had holes in her heart. She needed surgery. And she had Down syndrome.

Negative words decimated us. In the beginning they're all you hear. You play them over and over in your head and you worry and watch and wait. And you miss so much that is good because you are a wreck anticipating disaster all the time.

And then you stop worrying. You stop projecting and imagining and you look at this child in your arms, whom the world deems inferior, and you think how wrong the world is. And how perfectly right she is.

Dr. Jose Florez runs a clinic at Massachusetts General Hospital for adults and adolescents with Down syndrome. He speaks from experience - his sister has Down syndrome. In a presentation he gave in late January, he presented a list of attributes that people with Down syndrome share: Happy disposition. Big heart. Plain goodness. Kindness. Perseverance. Loyalty. Fun-loving. Musical talent. Contentment. Why aren't these words part of genetic counseling?

Lucy listens as Julie Andrews sings. "Impossible for a plain yellow pumpkin to become a golden carriage! Impossible for a plain country bumpkin and a prince to join in marriage!"

Then she belts out in her raspy child's voice what is true for Cinderella but even truer for all children like her. "Impossible things are happening every day."