My first traditionally-published book, A Good and Perfect Gift, tells the story of our daughter Penny’s early years after her diagnosis of Down syndrome. Even more so, it tells the story of what it took for me to be able to receive her as a gift. This book took years to write—it came out when Penny was five—and sometimes I think I’m still writing it. Certainly all the work that followed built upon the initial insights from those early years.
Having a daughter with Down syndrome has changed the way I see everything, for the better1. She has invited me to reimagine identity, purpose, relationships, politics, and spirituality. Her presence in my life has slowed me down, opened me up, connected me to my humanity, and transformed my understanding of what life is all about.
“She’s perfect.” “He was a gift.”
On the night Penny was born, a few minutes after two doctors had said to my husband, “We suspect your daughter has Down syndrome,” another little girl was born in the room next to ours. Through the walls, we heard someone in that room proclaim: “She’s perfect! She’s perfect!”
A few hours later, a nurse came in. She checked my vital signs and dimmed the lights. I closed my eyes, but as she was leaving the room, she stopped and turned back towards me. “I had a special child too,” she said.
I looked up. I didn’t know what it meant to have a special child or how to ask questions or how to receive whatever she wanted to tell me. “How old is your child now?” I murmured.
“He died a long time ago,” she said, and all of a sudden my chest felt tight.
“I’m so sorry,” I said.
She shook her head. I didn’t understand. She was not looking for consolation. She said, “He was a gift.”
She walked out of the room. I never saw her again.
That nurse invited me to travel an unknown road, from the words “She’s perfect” to “He was a gift.”
She invited us to move from a culture that assesses us according to what we can do to a way of being that welcomes each of us as we are.
A Whole New Way of Seeing Our Humanity
Over the years, the more I got to know our daughter, the less I needed her to prove herself through activity and achievement. The more enamored I became with who she already was. The more I saw my role as a parent not as training her to become who I wanted her to be, not as forcing her into the mold of average American, but rather as helping her grow into herself. Of course, then she helped me grow into myself too.
On Monday of this week, that little girl walked out the door as an eighteen-year-old young woman starting a program at Post University2. And the words from that nurse ring true. She is a gift.
We are all invited to move from seeing ourselves and others in terms of measurement to seeing one another as gifts. If you want to walk that road, perhaps our story can help. I kind of can’t believe that thirteen years later, I still hear from people about the way A Good and Perfect Gift has helped them, but I do. It’s available in paperback, Kindle, and audiobook, and I hope you find grace, hope, and freedom in your story by engaging with ours.
I’d love to hear from you. In what ways have you felt the need to prove yourself through abilities and achievements? How have you been invited into a different way of being?
MORE WITH AMY JULIA:
- Workshop: Reimagining Family Life with Disability
- Book: A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny
- Free Resource: Missing Out on Beautiful: Growing Up With a Child With Down Syndrome
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