Baby Steps Came on Her Own Schedule
/The Boston Globe
Maybe I bought the book after Lucy was born, or maybe some well-intentioned someone gave it to me. I don't remember. But here it is, nearly three years later, still next to my bed.Back then, I read it and lots of other books, looking for answers to questions. Lucy, my first grandchild, my oldest daughter's baby, was born with an extra chromosome. "We're sorry," people said when they heard. And we were too."When Bad Things Happen to Good People" seemed an appropriate book to be reading at the time.
But I hold it in my hand now and think, bad things? Lucy wasn't a bad thing. It was bad that she had three holes in her heart, but we didn't know that when she was born. All we knew was that she had Down syndrome. And yet we were sad anyway. What was wrong with us? Why all the worry and fear? And why, even now, do we still, sometimes, more times than we should, continue to worry and fear when Lucy isn't doing something some chart says she should be doing?
She has dark blond hair that curls at the ends and the prettiest almond-shaped blue eyes and the tiniest nose and rosy cheeks and a smile that we waited so long for that, even now, it is still magic.
All babies are measured against charts. The average baby smiles at 1 month, rolls over at 5 months, walks at 13 months. Children with Down syndrome have charts, too. And you look at the charts and you worry every day when a child isn't on target. When the smile doesn't come when the chart says it should. When a first word isn't within first-word range. What do these things mean? That she will never smile? That she will never talk?
And then one day she does. She smiles and she talks and you wonder: Why were you worried?
I have been taking Lucy to church on Sunday mornings since she was 10 days old. People whose names I don't know enveloped her. And me. From the beginning. "What a beautiful baby. What's her name? Lucy? Hi, Lucy.” They prayed for her when she had heart surgery. And they prayed for her when she had to have more heart surgery. They have been cheerleaders to her progress. And they have witnessed her wonder: She loves the church lights and the music and the man who collects the money.
Last Memorial Day weekend, her cousin Adam, who is 10 months younger, learned to walk. We were all in Maine and we watched him stand and take a step and grab on to a doll carriage and take more steps.
Lucy sat on the floor and watched him, too. Children with Down syndrome take a little longer to do things. The chart said she'd walk at 25 months. She was only 23 months. She had time.
But 25 months came and she didn't walk. And then she was 2 1/2 and still not walking. And even last month, two months shy of her third birthday, she wasn't really walking. She'd take a few steps, then sit down and scoot. "Come on, Lucy," we said, clapping and cheering. But standing upright and putting one foot in front of the other was clearly not on her agenda.
Last Sunday morning, she walked into church with me. I asked her, "Do you want to walk?" And she said, "Yes." So I unbuckled her seat belt and she took my hand, and there she was, walking along the sidewalk, walking up the cement walk, walking up the big steps, walking into the church, walking into the foyer, walking down the aisle, her pretty spring dress sashaying with every step.
And when she reached the pews, she sat down and clapped.
I held her hand again when it was time for Communion. But on the way back she pulled away and continued on down the aisle, my little Lucy Rose, walking all by herself.