I will have to apologize to her someday.
I will have to tell my grandchild that I cried the day she was born.
Not immediately. Not when I first held her and she looked into my eyes and I looked into hers. There's a picture of this. Lucy, just minutes old, almost saying hello. I never shed a tear in her first 12 hours of her life when I thought she was USDA-approved-top-of-the-line perfect Grade A baby girl. Then I was all smiles. I called my friends and said the baby has come. Lucy is here. Lucy is perfect - round cheeks, red lips, downy skin, blond hair, blue eyes.
We joked with her father. We all hugged one another. We were so lucky. We got our miracle, we exclaimed. And there was no doubt that we had.
And then a doctor walked over to the bed where Lucy lay and he unwrapped her and inspected her. And he said the word test. And then he said Down syndrome.
We cried then. All of us. Instantly. Because what had been perfection just seconds before, what had been all joy and gladness and light, became, with two little words, imperfection and fear.
Stupid, stupid us.
How will I tell Lucy that we wept while holding her? How will I explain that in those first few hours we looked at the gift G-d created just for us and wanted Him to make it a better gift? To fix it. To make our little Lucy just like everyone else. There's been some mistake, G-d. This isn't what we prayed for.
But isn't it?
Give us a baby to love, we begged, and we have her and what sweeter, better, bonnier baby could there be?
People told us that it's only natural to grieve the loss of a dream. And that's what I like to think we did. We dreamed one Lucy, the perfect little girl - like Margaret walking with her mother, like Shiloh on the stage in her toe shoes.
In those first few hours it was this dream that tormented us. And it blinded us, too, because all we could see was what Lucy wouldn't be. Here she was, infinity in our arms, fresh from heaven, in such a hurry to get to us that she arrived two weeks early. And we were judging her.
She left the angels to come here. She gave up Paradise for us. And we cried.
Funny thing is she hardly cried. She opened her eyes and took us in, one at a time, and amazingly she didn't seem disappointed at all.
One in 800 babies is born with Down syndrome. The rarer the jewel, the more value it has. That's the way it works with things - with pearls and Lottery tickets and horses and art.
But in our world and in our culture, we like our people to be all the same.
How will I tell her that I wanted her to be just like everyone else? That I was afraid of different when it's what's different that stands out? Are the black sand beaches in Hawaii sad because they're not soft and white? Do four-leaf clovers ache to be three? Does the life that grows above the tundra wish it were rooted in a valley instead?
The red rocks of Utah. Icebergs. The Lone Cypress. The Grand Canyon. And Lucy Rose.
We expected our life with Lucy to be lived on paved highways with well-marked signs, the rest stops never far from one another.
Lucy is taking us down a different road, a blue highway, instead. It's scary not knowing what's ahead. But no one, even on the wide smooth roads, knows the future.
We yearn for paradise. Lucy just came from there. She is heaven in our arms. We didn't see this with tears in our eyes. But we see it now.
From Lucy, A Fulfilling Year
It's one year later. One year after the ground caved in and the world blew apart and the center failed to hold. One year after we were told, "I'm sorry" so many times that we were sorry, too.
Three hundred and sixty-five days, some of them terrible. The day my granddaughter Lucy Rose was diagnosed with Down syndrome. The cold, rainy day she came home. The day the doctor said she needed heart surgery. The day of the surgery when the operation didn't go as planned. The days after, at the hospital, when we felt helpless at her side.
So many days at home, holding Lucy, begging, "Hang on, little girl. Don't leave us." Winter closing in, doors closing everywhere.
More surgery. More problems. Hope frayed.
Fifty days? 100?
We clung to each other - mother, father, grandmother, grandfather, aunt and uncle. It'll be OK, we said over and over.
And when we didn't believe this anymore, friends came and took our hands and kept us from drowning in sorrow and fear.
We worried Lucy would die. We worried she would live and not know us, live and not respond, live and not see, not hear.
We worried about everything.
We still worry. But not the way we used to. We're standing on solid ground, for now anyway - and now is all any of us has. Lucy is healthy and happy and is turning a year old Sunday. And we know, because of this year, just how lucky we are.
We ask ourselves, why did they shake their heads when she was born? Why did they say "We're sorry" and not congratulations? Why even now do doctors say, "We have tests. This won't happen again," as if Lucy shouldn't have happened. As if they would erase her if they could.
Erase the heart problems. Erase the need for surgery. But don't erase Lucy.
Lucy is like a crayon Crayola has yet to invent. So many colors - burnt sienna, maize, mulberry, raw umber, razzle dazzle rose.
But no Lucy Rose. Because she is the color of wind. The color of moonbeams. The color of stars that are too far away to see.
She is rare and she is different and she is beautiful and bright and we have been blessed because she is ours.
Before she was born, I talked this prayer to her. "Throughout life you will be both a student and a teacher, for you have much to learn and perhaps even more to teach."
I imagined teaching her "Pat-a-cake" and "This Little Piggy" and the names of things. And I have done all this.
What I never imagined is what she would tech us.
The children will lead you. And she has.
Lucy has led us through the toughest of times. The ground caved in, the world blew apart and the center failed to hold.
But Lucy endured. And grew stronger. And thrives.
And because of family and friends, so do we.
We held her so much. Maybe that's why some of her rubbed off, some of her joy, her good nature, her smile, her pluck.
When I was in second grade, Rosemary, the most popular girl in class, picked me to be her best friend. We walked arm in arm. We sang. She invited me to her house. We had fun all the time.
That's how it is being with Lucy.
All children bring joy. Lucy brings something more. Maybe that's because we came so close to losing her. "Eat, baby." "Look at us." "Say Dada." "Go to Mama."
And she did.
And she does.
And life is good.
This article first appeared in issue #13 of Down Syndrome Amongst Us