Loved and cherished, she thrives

The Boston Globe

Beverly Beckham

I strap her into her car seat and tell her that we are going to the doctor. And she smiles at me and says, "Mimi's house."

"First we're going to the doctor, Lucy, then you can come to my house, OK?" And then we sing, in big, booming voices, "Police officers, firefighters, a doctor or a nurse. They help me if I'm hurt. They help me if I'm hurt!" over and over until we arrive at Norwood Hospital.

Lucy, my granddaughter, is almost 5, but she was only 3 days old when we came here for the first time - the entire family, her mother and father, aunts and uncles, her grandfather and I. "She has three holes in her heart," Dr. Geggel told us. It's not unusual for children with Down syndrome to have holes in their heart, he explained. Sometimes the holes close on their own. Sometimes we have to operate. It sounds worse than it is. Don't worry. We do these operations all the time, he told us. Calm and kind and quietly caring, he was then and continues to be.

We came here regularly, to this satellite of Children's Hospital, to have Lucy tested. She was so tiny then, the smallest of babies, poked and made to lie still, constantly being assessed and evaluated.

No one could get her blood pressure, the littlest cuff too big for her arm. But even if a cuff had fit, the pressure wouldn't have registered because it was that weak, because her heart was that compromised.

I took her to a healing priest when she was 4 weeks old and he held her up like a trophy and announced that he had cured her and a church full of people clapped. But he was wrong. Lucy had surgery at Boston's Children's Hospital a month later and there were complications. And when we got her back, she still wasn't cured.

When she was 4 months old she had to have more surgery to fix what went wrong. Now, every June, just before her birthday, we come to Norwood to have her tested.

A wisp of a girl, 32 pounds and 3 feet 2 inches tall, she walks into the examination room, her hand in mine, and her lower lip quivers.

They want to give her an echocardiogram, which requires that she be naked from the waist up and lie still on a flat table in a dark room for about 20 minutes while a technician spreads gel on her chest and uses what looks like a microphone to take pictures of her heart.

I lift her up and show her the monitor and explain to her that this is just a different way of taking pictures. "So the doctor can see what's inside of you, LuLu." As if they could ever see all that is inside this child.

I unbutton her shirt and then I sing to her, a song from "Signing Time": "Lay down on your bed, pull the blanket high. Turn out the light. Welcome the night. Dream, dream." And she relaxes and lies down and I stand behind her and sing the song again and again, and it is like a prayer and a spell.

When I was 5 years old, I was in a hospital for a few days and woke up one night screaming for my parents. A nurse held me down. I remember being small and terrified and overpowered.

After Lucy's echocardiogram we go into another room where we play "My turn." The physician's assistant listens to my heart, then she listens to Lucy's heart. She checks my blood pressure, then she checks Lucy's blood pressure. Then it is Dr. Geggel's turn to check everything. And then it is time for an EKG. More sticky stuff on Lucy's chest. More lying down. More keeping still.

I think she'll lose it here. But she doesn't. She is all guts and grace, this little girl who, until about 20 years ago, most doctors and books dismissed as a child unable to understand anything, not worth the bother of loving and teaching and raising.

It kills me to think of children like Lucy whom our society wrote off for years, who were warehoused on the advice of experts, who were abandoned and then ignored. It kills me to think of experts today advising women to abort children like Lucy.

She runs down the hall when the tests are finished, laughing as I chase her. It is one hour and eight minutes later, a long, long time for a little kid to be quiet and patient and good. Dr. Geggel is pleased with Lucy's test results. But like the rest of us who love Lucy, he is equally pleased with Lucy herself.