I flew to California the day before her birthday. It was a big birthday, her 16th. And I was sad leaving her.
“I already miss you,” I moaned when I kissed her goodbye. Lucy looked at me and smiled, cocked one eyebrow and said, “Save it for Farley,” which is Lucy teasing, Lucy pretending to like Farley (a favorite teacher) more than she likes me. It’s a game she invented, something she says when she wants to get a rise out of me, her words a joke.
Lucy makes jokes. She sees the humor in things. The doctor who told us she had Down syndrome didn’t tell us that she might be funny. She might not walk, talk, see, hear, read, write, he said.
Funny never came up.
Lucy is my oldest grandchild. We didn’t know for her first 12 hours that she had Down syndrome. “Isn’t she perfect,” we said to one another.
And then the world told us she wasn’t.
She had heart surgery when she was 2 months old. She weighed 7 pounds. Her heart was the size of a walnut. The surgeon clipped her aorta. Somehow she survived.
Two months later she had more surgery to fix her aorta. Again, there were complications.
Other babies, babies without Down syndrome, were meeting their milestones, smiling right when the baby books predicted, rolling over, sitting up, walking. It took Lucy longer to do all these things. But when she did? We, her parents, grandparents, aunts, uncles, friends, her great, big, extended, supportive family, cheered. We took pictures. We celebrated. We poured champagne and toasted. What were we worried about, we wondered out loud. Look at her, walking, talking, amazing us.
But then there was the next thing. There was always a next thing. Because for every milestone Lucy reached there were always more milestones unreached. Tests. Performance charts, graphs and detailed reports routinely highlighted all that Lucy could not do. From early intervention, through pre-school and grammar school and middle school into high school, every chart, every report, every evaluation, confirmed what the doctor first said: That Lucy is less than. That Lucy doesn’t measure up. That Lucy is imperfect.
She isn’t. It’s the world that doesn’t measure up.
I think sometimes that in order to see the real Lucy, the world needs a kind of night vision, glasses to put on so that what is hidden inside her is visible: her wit; her kindness; her empathy; her generosity; her selflessness; her tenacity; her quiet strength; her memory of people and places and movies and songs; her great love of life and of family and friends. All that Lucy is, all that she thinks and feels and believes and wishes for, all that she has learned, all that she remembers, are inside her in a place we human beings cannot see. And so her attributes go unmeasured and undocumented. And her worth as a human being is diminished.
But she is like a bird in a forest on a dark, moonless night. We can’t see her plumage, we can’t see her colors, we can’t see her wingspan and we can’t see her soar. Why? Because we lack the ability. Our eyes cannot see in the dark. And this is our disability.
When Lucy was brand new, if I had been able to look into a crystal ball, if I had been able to see her at 16, I would have seen just her outside, too. I would have been struck by all that she isn’t.
But love is like night vision. It gives us new eyes.
Lucy doesn’t judge herself or judge anyone else. She does not compare. And she’s happy, most of the time, unless someone else is sad and then she sits down next to that person and gets sad, too. She wishes she had curly hair. That’s the one thing she would change about herself.
But I wouldn’t change a hair on Lucy’s head, not even to replace a few of them with curls, which would make me a hero. When Lucy was a baby, I would have. I would have done anything to make Lucy’s life better.
What I know now is that Lucy’s life couldn’t be any better. She is loved beyond measure. She walks into a room and people smile. She is 16 and still likes her parents so much that she wants to hang out with them. She is 16 and still likes hanging out with me. “You’re 16, you’re beautiful, and you’re mine,” I will sing to her when I get home. I will fuss over her and she will grin and tell me to save it for Farley. And then she will cock one eyebrow, laugh out loud, and beg me to sing it again.