A Good and Perfect Gift
Penny performing in the Hope Heals Camp talent show (Ashley Monogue)
I hadn’t realized it until we received Penny’s diagnosis [of Down syndrome], but I had come into the hospital with a grid that ordered my sense of how the world worked. I believed that all people were created in the image of God, that every human being bore the mark of God’s goodness and light. But I also believed that everything that went wrong in the world was a consequence of sin. I didn’t think that God was doling out tornados or cancer or malaria as punishment for us doing bad things or something like that. I just believed that ultimately all the pain and injustice in the world could be traced back, somehow, to the human refusal to love God. The first human choice of self over God sent suffering and discord everywhere, like a fault line tearing through the universe.
Before Penny was born, I would have assumed that an extra chromosome was just that, a crack in the cosmos, evidence of the fractured nature of all creation. But how could I imagine such a thing about my daughter? I couldn’t figure it out.
I didn’t have time to try to articulate my thoughts. Peter wheeled Penny back in just as Mom and Dad walked through the door. She was fast asleep and swaddled tight. They crowded around. Her skin was smooth now, with a hint of olive underneath her pink cheeks. Peter picked her up and handed her to Dad. “Here you go, Grandpa.”
Photo by Ashley Monogue
Photo by Ashley Monogue
On the surface, we were introducing the firstborn grandchild to her grandfather. Big smiles. Oohs and aahs about how cute she was. But there was an undercurrent of hesitation. How do we say Congratulations and I’m sorry? How do we celebrate and grieve at the same moment?
Dad lowered himself into a chair with Penny. I couldn’t remember seeing him with an infant before. He held his body stiffly, shoulders hunched, using only his arms to hold her. He looked the same as ever—khakis, loafers, a button-down shirt with a frayed collar, a blue wool sweater with a few stains.
But I had to wonder if he would become someone different now that he was a grandfather. Now that Penny was his granddaughter. She slept without stirring, and he smiled.
…
Soon we were sharing memories of the past few days, as if they had happened a long time ago. Mom talked again about how she had known something was wrong, how Penny had looked so floppy on the examining table. Kate mentioned her tears. Dad said he hadn’t been able to sleep on Friday night. “I’ve got a cold sore,” he noted, pointing to a bump on his lip. I felt a strange urge to apologize, although I knew that none of them were looking for consolation, especially not from me. With Penny in the room, beautiful, peaceful, there was also a sense that it had been a false alarm, that all the fear and stress and sadness was for nothing.
Kate went over to Dad and said, “All right, Grandpa, hand her over.” She put her face close to Penny and bumped noses. After she sat down, she said, “Did any of you hear them on Friday night in the room next door?”
I had a vague recollection of shouts of praise through the wall. “Yeah,” Peter said. “They had a baby girl a few hours after Penny.”
“But did you hear what they said?” Kate asked. “It was right after we’d gotten back from dinner. I walked into this room to see you crying, and I knew there was something wrong. And just a few minutes after you told us, there was all this happy shouting next door. I heard someone say, ‘She’s perfect! She’s perfect!’ over and over. It was so weird.”
I hadn’t heard those exclamations. I looked at Penny in Kate’s arms. All the medical terminology implied anything but perfection. Birth defect. Chromosomal abnormality.
Kate bumped Penny’s nose with her own again and gave her a kiss.
“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?
I looked up when Mom spoke in her gentle, level voice. “The only evidence of sin that I see in Penny’s birth is in how we respond to her.”
It was as if I had been looking through a kaleidoscope and it turned a notch. All the same pieces and parts, the same colors even, but a totally new pattern. A new way of seeing.
Recognized as one of the top ten Best Books of 2011 by Publishers Weekly, religion category A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny is a spiritual memoir about coming to understand that every human life is a gift. A Princeton grad and seminary student pregnant with her first child, Amy Julia confronts her own prejudices and privilege when her daughter Penny is diagnosed with Down syndrome at birth. Covering the first few years of Penny’s life, this story explores questions of faith, social structures, and what it means to live a full life. As she recognizes her own expectations and perfectionism, Amy Julia turns towards a different understanding of perfection — the perfection of being created with a purpose.
Amy Julia Becker, A Good and Perfect Gift, Bethany House, a division of Baker Publishing Group, 2011. Used by permission.
