Soon after our daughter Penny was born and diagnosed with Down syndrome, I started to ask questions about the spiritual implications of her disability. To give a glimpse of some of the questions I was asking, here's an excerpt from our time in the hospital, as related in my memoir A Good and Perfect Gift:
"What I want to figure out is whether Down syndrome is a mistake," I said. "I know that scientists and doctors would say that it is." I gestured toward the papers on the table. "But how do I think about it in terms of God? Is it a manifestation of sin in the world? Is Penny less perfect than that little girl who was born next door?"
The room stayed silent. I thought back to the moment I first felt Penny kick. We were in Rome, living in a dorm room. Peter was there on a Fulbright scholarship with twenty other high school teachers. At least once each night I got out of our bed and walked across the linoleum floor to the communal bathroom. One of those nights, in mid-July, I couldn't fall back to sleep. And that's when I first felt her move. A flutter below my belly button. And then another. And three more. Hello, little one.
How could she be a mistake?
A few months later, I was still wrestling with these questions, and my seminary-training went into action:
Jesus said, "Be perfect, therefore, as your heavenly father is perfect." It seemed such a strange command. Jesus must have known that we would never be perfect, if by perfect he meant without flaw, without needs, without hurts or wants. It was counterintuitive, even, to try to be just like God. Wasn't that the first sin, the very thing that caused Adam and Eve's banishment from the garden?
"Hold on, sweet girl," I said to Penny with a kiss on her forehead as I retrieved my Greek dictionary. The root of the word in the Greek, I discovered, was telos. It could be translated as "perfect," but it could also be translated, "wholeness, completion, the end for which you were created."
And there was Penny—floppy limbs and ears filled with fluid and eyes that reminded me of deep pools of still water—there was Penny. Catherine had called us a perfect family, although of course we weren't that. We would never be that. Still, I wondered whether Penny had brought us closer to becoming that which we were created to be.
I share these excerpts with you as an introduction to a weekly feature of this blog called "Perfectly Human." This weekly guest post is intended to provide a picture of life with a disability in all its possibilities and limitations, gifts and struggles. Every week, I hope to provide a reflection written either by an individual with a disability, or by a friend or family member who has been in a relationship with a person with a disability. And while I intend for this space to be honest in its portrayal of some of the hardships that can come with physical and/or cognitive disabilities, I also hope it will provide a sense of the fullness of life that individuals with disabilities experience.
As I hinted at above, the title of this feature comes from the Greek word telos, which can be translated as "perfect" but which also can be defined as, "the end for which it was created." People with disabilities are just as human as anyone else—flawed and gifted, beloved and broken. They are "perfectly" human, which is to say, created with a purpose. I would like this space to convey the things that connect us as human beings, things that go beyond our perceptions of able/disabled. Similarly, I would like to suggest ways in which individuals with disabilities can, at least sometimes, help individuals without disabilities to understand their own humanity.
In the weeks to come, I look forward to sharing reflections from Gillian Marchenko, author of Sun Shine Down, Margot Starbuck, author of Not Who I Imagined, Cameron Doolittle, director of Jill's House, Ellen Painter Dollar, author of No Easy Choice, and Elisa Fryling Stanford, author of Ordinary Losses.
But I am also looking for submissions!
If you have a story or reflection that you think might work for "Perfectly Human" please refer to my website for submission guidelines.