A few weeks ago, our 9-year-old daughter Penny wrote an essay about herself called, "A Day in the Life with Down Syndrome," for a website. Well, that's not quite true. She wrote the first paragraph and then asked me to take over the laborious typing as she dictated. She also neglected to mention Down syndrome.
I offered questions as we went, and she described her days—her friends, her favorite books, and her obsession with flip-flops. I asked, "Do you want to tell about your challenges?" She said, "Oh yes!" And then, "Some of my challenges are backbends and headstands." I pushed a little further: "Do you want to talk about having Down syndrome?" She laughed and said, "I almost forgot to say anything about Down syndrome! What should I say?" "Maybe tell them a little bit about what we found out when you were born?" I suggested. She said, "Okay, I almost forgot to tell you about Down syndrome. My mom and dad thought it was going to be scary because they thought Down syndrome would hurt me and other people. But it actually was not scary, and I did not get hurt. I have a great life."
It actually was not scary, and I did not get hurt. I have a great life.
In Penny's early days, I worried about everything. I worried she wouldn't have friends. I worried she wouldn't grow up. I worried that I wouldn't think she was beautiful, that we wouldn't laugh together, that we wouldn't share the same loves. I also worried about having another child with Down syndrome, which led to my fear that I was devaluing Penny's life. Finally, a friend interrupted my spiraling anxiety with the words, "Having a baby with Down syndrome is hard. That's it. You don't want it to be hard again. That doesn't say anything about your love for Penny."
At the time, his words came as a balm. They gave me permission to admit what was hard about being Penny's mom—the extra doctor's appointments, the constant evaluations, the heart procedure at 14 months old, the sense of an uncertain and vulnerable future—without feeling as though I was betraying her.
And yet as time went by, I realized being her mom wasn't really that hard. She slept through the night at 7 weeks old. She rarely cried. She had a wave and a smile for everyone and extra special affection for her mom and dad. She learned new things every day, and she offered me her delight in the world around her—the wind on her cheeks, the taste of avocado, and the sound of Elizabeth Mitchell on the CD player. Being her mom was challenging, fun, interesting, frustrating, rewarding, but not depressing, heartbreaking, or scary. And not hard.
People lined up to tell me it wouldn't always be so easy. I wrote an essay for Motherlode about our decision not to pursue prenatal testing with my third pregnancy, and the comment section lit up with people chastising me about the burden Penny would become. "She's cute now," people wrote. "She won't be that way forever." I went to a conference for parents of children with Down syndrome, and I asked a researcher about whether Penny might continue to be the bright, bubbly, eager-to-learn 2-year-old I was experiencing right now. "All people with Down syndrome have mental retardation," he replied, in a tone that suggested my love and joy for our daughter was delusional.
And then there was the media, often reporting on people who "suffer from" Down syndrome, as if hardship and suffering must be lurking around some ominous and inevitable corner, or lauding parents of people with disabilities as remarkable, resilient, and above average. But Penny wasn't suffering. And I wasn't consistently working harder to be her mom than I was to be a good mom to my other two kids.
I don't mean to deny the hardship that can come along with Down syndrome. My friend's little girl just had open-heart surgery at 3 months of age and spent a week in the ICU. That's hard. My other friend's little girl was in and out of the hospital for years with leukemia. That's hard. Plenty of people have encountered more hardship than we have along this road, and yet I have also discovered that I am not alone. People with Down syndrome overwhelmingly testify to the happiness in their lives. Family members overwhelmingly report their gratitude for their siblings or children with Down syndrome.
Penny is almost 10 now. She's in fourth grade. She gets pulled out of her regular classroom for math instruction alongside two other girls her age. She needs support within her classroom, but she is reading the same textbooks, spelling the same words, and working on the same projects as her peers. She is learning how to play piano and dance ballet. She just signed up for the newspaper club. She will compete in the school spelling bee for the second year in a row. She is looking forward to a sleepover this weekend.
There have been seasons of hardship—when potty training took far longer than expected; when I received a note from a teacher that she had poked another little girl with a pencil, again; when we moved to a new town and I wondered if she would ever have friends.
But the things that I thought would get harder have not. The doctor's appointments have become routine, an opportunity to play word games and have conversations in the car, and a reminder of how medical advances have provided health and life for kids like our daughter. And although I never love being called in to school to talk about Penny's behavior, I now trust that the teachers and therapists all want her very best. We have been given a network of care from the moment our daughter was born—beginning with the therapists who came to our house free of charge to teach us how to help her learn and grow; continuing with the preschool teachers with their relentless positive attitudes; and progressing through doctors and other parents and babysitters and friends and teachers who love this child and want the very best for her always.
Being Penny's mother was not particularly hard when she was a baby or a toddler. It is not particularly hard now. I'm starting to believe it might not be very hard in the future.
I know enough now to know that I shouldn't trust my worries, though they still come when I think ahead to middle school, to falling in love, and to growing old. I shouldn't trust my fear that friends will disappoint her. If I have learned anything over these past 10 years I have learned that I should trust my hope. I should trust my love. I should trust that: It actually was not scary, and I did not get hurt. I have a great life.
Amy Julia Becker is the author of Small Talk: Learning From My Children About What Matters Most and A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny . She is a regular contributor for Parents.com. She lives in western Connecticut with her husband and three children.