In Down syndrome’s shadow, she is perfect in her own way
For a long time, after my granddaughter Lucy, who has Down syndrome, was born, I looked at healthy, typical babies with envy. They were everywhere -- at the mall, at the playground, cooing, smiling, sitting up, playing patty-cake, walking, talking, meeting every developmental milestone right on time, their perfection a constant reminder of Lucy’s imperfection.
That’s how I saw my first grandchild. As less than perfect. That’s how most everyone saw her. The doctors with their grim faces. The nurses with their strained smiles. Family, friends, all of us mourning who Lucy might have been.
I wept her first day, not because I didn’t love her -- I loved her instantly and fiercely -- but because I worried that other people would not.
Thirteen years later, I wish I could go back in time and tell that frightened me that, yes, there would be challenges and frustrations ahead, dead ends and brick walls, many starts and stops. But that the highs would trump the lows, the victories would outshine the defeats, and, most importantly, Lucy would be loved, and not out of pity. Not because she has Down syndrome, but because of the person she would grow to be.
That’s what gets lost in the words “Down syndrome.” The individual. The soul. All people with Down syndrome are small in stature and have almond-shaped eyes and low muscle tone. But all people with Down syndrome are not alike. They are different in the hundreds of ways all human beings are different.
This is what we didn’t know when Lucy was born. That she would grow into her own unique self. That she would be a girl who loves show tunes and fancy restaurants and theater and dance and curly hair and movies and books and getting dressed up and going out and toasting to life and hanging with family and friends because these are the things she has been exposed to.
Lucy turned 13 last month. When Lucy’s mother, my daughter, turned 13, she was all dirty looks and slammed doors and exaggerated sighs. Overnight, she went from liking me (“Mom, you’re my best friend!”) to barely tolerating me. I wrote a column about 13, “A Trying Phase.” That column got me a job at the Boston Herald. Countless mothers of 13-year-olds identified.
With Lucy, there are no slamming doors and dirty looks. She adores her parents. She isn’t embarrassed by them or by anyone. Lucy is kind and polite and intuitive and funny. Plus, she shares. And she doesn’t complain.
For her birthday, her friends at school, middle school, surprised her by decorating her locker. After school they all went bowling. A few days later, Lucy had another party.
When she was born, the doctor told us many things Lucy would never do. He had a list. He didn’t say a word about the people who would come into her life and make a difference in her life. About the importance of love and friendship. About who she would grow to become because of love and friendship. Or about who we would grow to become because of her.
If I could go back in time, I would block my ears to the naysayers and ignore every developmental assessment that grades and degrades people.
How is Lucy doing? Is she happy? Is she thriving? Is she going in the right direction? Is she doing better today than she did last month and last year? Does she have friends? Yes. Yes. Yes. I would trust this, what I saw, what I see, what Lucy shows me every day.
Online, I found a definition of perfect that sums up Lucy: “Someone with few flaws; possessing many desirable qualities.”
My favorite quality of Lucy’s is her empathy. If someone is sad, she reaches out. If someone is crying, she whispers, “It’s OK.” And if the person continues to cry? Lucy cries, too.
When she was born, I mourned the child Lucy might have been. I know now that if we had been given the child we imagined, we wouldn’t have Lucy.
And that would be a real cause for tears.
Beverly Beckham’s column appears every two weeks. She can be reached at firstname.lastname@example.org.