As I looked at Peter huddled over his coffee, I heard his words again, his pronouncement from the night before, They think she has Down syndrome. I wanted to summon that ultrasound technician who had measured Penny’s femur, her tibia and fibula, the fold of skin at the back of her neck. That woman who had traced Penny’s picture on the screen and said, “See, the baby is sucking its thumb.” I wanted to summon her and tell her she was wrong. I wanted to say, It is your fault that we are not prepared. It is your fault that we didn’t know.
But knowledge wouldn’t have made a difference. I could never have imagined the words mental retardation or birth defect being used in the same sentence as my child’s name. It was as if having kids had become an equation: youth plus devotion to God plus education equaled a healthy and normal baby. As if taking a birthing class and reading baby books and abstaining from alcohol and praying all guaranteed certain things about our family. As if I were entitled to exactly the baby I had imagined, a little version of myself, a child who was verbally precocious and walked early and went on to skip kindergarten and excel in school. But there I was, in a hospital gown on a Saturday morning, and my child had Down syndrome.
Peter’s phone broke the silence. He looked at it and said, “It’s my brother.” He rubbed his forehead. “I can’t answer it. I wouldn’t be able to say hello without crying.”
Peter’s younger brother Christian was at a wedding in New Orleans for one of their cousins. He knew Penny had been born, but he didn’t know anything else. Peter glanced at the phone as it rang again. He pushed “Ignore call.”
He looked up at me, his voice tight. “I feel like I’ve been swallowed by darkness. I can’t . . .” He shook his head and turned away. “I can’t . . .” He didn’t finish the sentence.
A nurse brought Penny into the room. She was swaddled tight, and someone had added a large floppy bow to her standard-issue blue-and-pink striped hat. “She’s adorable,” the nurse said.
“Thank you,” I murmured, receiving Penny into my arms.
“I brought you all some information. From the Internet.” She handed a small stack of papers to Peter. “And I’m going to try to put you in touch with some other families who’ve been in the same situation.”
“How often does this happen?” I asked.
“You’re the third I’ve known where a Down’s baby was born unexpectedly. That’s in the past five years. So, not very often.”
I worked on the math. How many babies were born each year in this hospital? Five a day? Ten? Thousands every year. Thousands. And once or twice, with an unknown extra chromosome.
After the nurse left, I said to Peter, “We’ve become those people.”
“Those people?”
“You know, the exceptional ones.”
There were plenty of unusual aspects of our life together—we didn’t watch more than an hour a week of television, we were educated and lived in the Northeast and believed in Jesus, we had met in high school and dated through college and got married three weeks after graduation. Exceptional, I thought, with a hint of bitterness. I looked at Penny again, and the tone of the voice inside my head softened. Exceptional.
Peter reached out his arms. “May I?”
She was so little. He held her head in the palm of his hand and tucked her body close to his. Her toes reached the crook of his arm. He wiped his eyes. “Hello, beautiful,” he said to her. It was the same way he had greeted me most days of our marriage, and it gave me a glimpse of what I had been hoping for, the chance to meet a new part of my husband once Penny was born. We had waited so long to have children, and we both had feared that a child would change our lives too dramatically. But one thing I had longed for was to see Peter as a father, to see the part of him that only Penny could evoke. I had looked forward to the ways she would give us to one another all over again.
The nurse soon returned for Penny. Her body temperature was still low, and she needed more time under a heat lamp. Peter and I were alone again, by design. My family had agreed to return the next day. We hadn’t called any of our friends yet. It was as if we needed to test each other first, to say the words we were thinking and find out if they would disqualify us from our new roles as mother and father.
“I don’t want to go back to Lawrenceville,” Peter said.
“Me neither.”
I closed my eyes. I wanted to run away. I had visions of putting Penny in her car seat and heading north to my parents’ summer house. I knew the route well: up the turnpike and over the George Washington Bridge, onto the Henry Hudson and into Connecticut and finally, off the highway and onto a narrow road that wound its way back toward the water. Past the year-round residences and around the bend, the salt marsh in front of us. Into the driveway, up a small hill, and then seeing the Sound. The choppy gray water. The solitude. The open space.
“But we have to go back,” I said out loud.
Peter paced the room. His eyes darted from chair to corner to bed to door, as if he were looking for a place to settle his gaze, as if he were looking for some stable point in a world that had just started to float away. “I don’t want to be ashamed of her,” he said. He stopped walking and hung his head.
I thought of him holding her. Hello, beautiful.
“You’re going to be a wonderful father.”
He shook his head, not quite in disagreement. More with helplessness, or despair. “I’m just so afraid.”
I had tried to sound positive, but I was swimming through the same thoughts—What do we do with a child who is mentally retarded? What if people think this is our fault? What if they pity us? What will it take for us to be able to care for her?
I finally said, “I think I could have handled it if she weren’t our first child, if I’d had time to learn how to be a mom and how to raise a baby. But this . . .” I clutched the folds of my hospital gown and then smoothed it out over my torso. “This just seems impossible.”
Peter’s phone interrupted us again. It was his brother Christian, the third time.
“He’s like a dog with a bone,” Peter said.
“He loves you,” I replied. “I think you need to tell him.”
“Hello?” Peter answered. “Yeah, I did get your messages. Look, this is hard to say. I didn’t want to tell you in the middle of the wedding and everything. But the thing is . . .” He looked at me and took a deep breath. “She has Down syndrome. The doctors think Penny has Down syndrome.” Christian said something in response, and the tears ran down Peter’s cheeks, and I remembered hearing that tears released toxins from our bodies, that tears brought healing.
Peter said, “I’m sorry to tell you. That’s why I wasn’t answering your calls. I knew I couldn’t fake it once we talked.” He was silent. “Thanks. I love you, man.”
I had never seen Peter like this before. He had weathered his mother’s death a few years earlier. He had wept over the loss of a friend in a car accident. But even then, his hopeful attitude shone. It was a running joke, and a running point of contention, that he was the optimist and I was, by my reckoning, the realist in our marriage. He always looked on the bright side. He always assumed it would work out, whatever it might be. But the lines on his face, the rigidity of his body, the forced smiles and eyes that looked away as quickly as possible—I had never seen this before. I felt as though all morning I had been watching him in a fistfight, a blow to the jaw and then a punch to the stomach until he was on the ground, curled in a ball, quiet and still.
And so I had to ask the question. “Do you still want to name her Penny?”
His face softened. “Of course I do.”
It had seemed such a perfect choice, to name her after her grandmother, Peter’s mom, who had died just two years earlier. On the day the ultrasound technician shared the news that our child didn’t have Down syndrome, she also had written the baby’s gender on a scrap of paper, per our request. We had opened the note in the parking lot, sitting side by side in the car, Peter’s hand upon my belly. I read
out loud, “Buy pink! It’s a girl!”
A few minutes later I had asked, “Do you know what you want to name her?”
“I think I’m biased,” he replied.
“I think I have the same bias.”
She was Penny from that moment on. And throughout the pregnancy we compared her to her grandmother. When she fluttered her legs in the womb, we talked about her namesake’s love of dancing, her desire for attention, her spunkiness, her sass. We talked about her beauty, that people regularly compared her to Natalie Wood or Elizabeth Taylor. We had expected our Penny to be similar to her grandmother. But now I wasn’t so sure.
There was another knock on the door, and Dr. Mayer walked in. Her cautious smile and curly brown hair, her understated presence—her whole demeanor made me think of my mother. She pressed my belly. Her hands reminded me that my body was recovering from trauma. I closed my eyes against the pain.
“How does it feel?” she asked.
“It’s not so bad.”
“You didn’t have much tearing. You should heal in no time.”
In no time. I tried to smile. “Thanks.”
Dr. Mayer pulled up a chair. “How are you?”
My eyes searched the room for a minute, then finally landed on my hands. At first, all I could think about was practicing the piano as a little girl, with my long fingers stretching for the proper configurations, reaching, pounding my fists into the keys when I couldn’t get it right. I shook my head. “I feel fine,” I said, gesturing toward my body, as if she were asking about my physical state.
Maybe my response was a test. And if it was, she passed, because she didn’t take it as a cue to leave. Instead she said, “I have three kids. But I had a fourth, a baby who miscarried. And that baby had Down syndrome.”
I looked her in the eye then, even though I could feel my emotions rising. “How did you know that Penny had Down syndrome?”
“I didn’t. The neonatologist called me out of the room, and even then I didn’t believe her. She had to convince me.”
“Well then, how did she know?”
“Babies with Down syndrome have low muscle tone, hypotonia. And an extra fold of skin over their eyes. And Penny has a line across her palm that you won’t find without that extra chromosome.”
“So now you’re sure?” I asked, realizing that there was still a part of me that hoped someone would come in and tell us it all had been a horrible mistake.
“You can’t be sure until you get a karyotype. For most people with Down syndrome, there’s an extra chromosome in every cell of the body. But sometimes that extra chromosome is only in certain cells. That’s called Mosaic Down syndrome. Penny’s so healthy, it could be that.”
Peter said, “I’m confused. If we can’t know for sure, what are we supposed to tell people?”
“I’d say something along the lines of, ‘It is very likely that Penny will have special needs as the result of a chromosomal abnormality.’”
Peter reached for a pen. “Can you say that again?” He mouthed the words as he wrote them, rehearsing.
Dr. Mayer’s pager beeped, and she silenced it without taking her eyes off my face. “You all are going to be fine,” she said. “You have a strong marriage and a strong faith and a beautiful baby.”
As soon as she left the room, Peter began a series of calls—to his best friend, Daniel, and then his father, his aunts, his college roommates. He held the notepad with the doctor’s words. It is very likely . . .
With each call, he seemed to gain confidence. His face softened. His shoulders dropped. When he hung up the phone I was nursing Penny again, tapping her cheek with my fingernail to keep her awake.
“I have prayed for so many years that my heart would become more open,” Peter said. He leaned close to Penny and whispered, “Maybe you are an answer to prayer, little one.”
Penny stayed with us for the rest of the afternoon and into the evening. Mostly, she slept. But every so often she pushed her warm face into my chest and nestled in to nurse. And she opened her eyes, her fascinating eyes, like pools in shadows with points of light gleaming through. We laughed that afternoon, when she crinkled her forehead in alarm or looked around the room with a mischievous expression. When she was in our arms, it felt like it had when I was pregnant. Simple love. Abundant love. The complications dropped away.
The only call I made was to our pastor. I was in my second year of seminary, and as a part of my degree, I had been working as an intern in our church. I wanted people to start praying for us. I needed people to start praying for us.
Pastor Mike answered on the third ring. I told him the news, and at first I found myself forcing cheer: “She’s really healthy and she’s nursing well, so those are good things.” But then I realized he was crying.
Just a few weeks earlier, I had preached a short sermon on the Christmas carol “Joy to the World.” I focused on “Let every heart prepare him room,” and I talked about preparing room for Jesus in our hearts and lives this Christmas season. I described the preparations we had made for Penny—baby showers and maternity clothes and installing the car seat. That sermon had made me think about Mary preparing to welcome Jesus, and it had prompted me to pray that God would prepare me to receive Penelope. But we hadn’t been prepared at all.
I said to Pastor Mike, “It’s been really hard.” I looked over at Peter holding Penny. “But this afternoon has been better.”
“It’s like a crucifixion and resurrection all at once,” Pastor Mike said.
When I hung up the phone, I reached for Penny. I pulled her hand out from the swaddling blankets and traced the line on her palm, the strong horizontal line that stretched from one side to the other. I compared her hand to mine, noting the distinction. And I wondered, as I rubbed her soft skin, What does this line tell us about the road ahead?
3
I don’t know how to think about the fallen-ness of creation, the “groaning.” Or how to think about extra chromosomes. Could Adam and Eve have had a Down syndrome baby? Is it part of the fall or just our reaction? Maybe her body is no less fallen than mine, and I just see it on a continuum that doesn’t exist in God’s economy. I am reminded of Flannery O’Connor’s characters, people as sacraments, visible reminders of God’s grace. Visible brokenness that only helps us understand who we all are—broken yet beloved.
January 2006
It was Sunday, January 1. I rubbed the sleep from my eyes. The first thing I saw, perched on my bedside table, was a bottle of champagne. My sisters had arrived with it two days earlier, and we planned to open it all together. But then the euphoria had slipped away. I had slept better that second night in the hospital, and I was starting to adjust to the idea of a daughter with Down syndrome, but I turned my head from the champagne. I wasn’t ready to celebrate.
I pushed the bed into an upright position and scanned my body, surprised, somewhat alarmed, to note that I still looked pregnant. Until then it had been a relief to wake up and see my round belly. Throughout the recent months I had dreamed, repeatedly, that Penny had died. I woke up frantic every time, but then I would run my hands over my smooth, solid midsection to reassure myself of her presence. And now she was here. Alive. Healthy. I tried to focus my attention on those adjectives as I eased my way out of bed and shuffled to the bathroom. When I returned, I said to Peter, “I want to get dressed.”
He helped me out of the hospital gown and into gray sweatpants and a maternity top. Once I had eased myself into the chair next to the bed, Peter leaned over and gave me a kiss. “I’m going to go peek in on Penny,” he said.
I nodded and picked up the stack of information the nurse had given us the day before. The first page held the title, “A Promising Future Together.” I read, “There will be challenges in raising your child, but there will also be many, many joys.” I appreciated the sentiment, but it seemed vague in comparison to the chart a few pages later that stated a list of areas in which Penny’s development would be delayed: sitting, crawling, s
tanding, walking, talking, smiling, eating, potty-training. Or the list of potential medical concerns: cardiac problems, cataracts, hearing loss.
Whoever had written these pages had been careful with their language. They called it trisomy 21 because it is the result of an extra copy of chromosome 21. They called children like Penny “children with Down syndrome,” not “Down’s children,” and exhorted me to “remember that Down syndrome is a condition your baby has, it is not who your baby is.” I thought about the freedom I felt simply from dressing like a person instead of a patient. It struck me that I needed to make that shift for Penny, too. I needed to start seeing her as our little girl, not as a diagnosis, not as an obstacle to be overcome.
I flipped through the pages, but I didn’t get very far. Usually when I was in unknown territory, information settled me, but now it was as if I was looking over my shoulder, waiting for someone to call me back home. I didn’t want to be familiar with this landscape yet.
I thought back to the night before, when a nurse had come in. “The cardiologist is here. He needs to do a few tests.”
Her words had sent a chill through my body. It was Saturday, December 31. New Year’s Eve. And this nurse was telling me we couldn’t wait any longer to examine Penny’s heart.
“It will take a while, but we’ll let you know what he finds out as soon as he’s done.”
After she wheeled Penny away, Peter crawled into the hospital bed. We curled on our sides, his arms around me. I listened to his steady breathing as he slipped into sleep, but I lay awake. I knew so little. The nurse’s words had reminded me that infants with Down syndrome often had heart defects, and I vaguely remembered that they also had a short life expectancy. Exhaustion tried to quiet my thoughts, but soon my heart started to pound. What if she doesn’t make it through the night?
At that moment I realized, with a measure of relief, I was terrified Penny would die. I was terrified we might lose her. And that fear meant I loved her already. The thought allowed me to slide into sleep until the nurse tapped me on the shoulder.
Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny Page 3