7
I went to the doctor for a follow-up appointment today. The receptionist was very nice. She told me about a good friend of hers who has a daughter with Down syndrome. The young woman is in her mid-20s, with a job, with highlights in her hair. I think the receptionist was trying to comfort me by giving an example of how functional someone with Down syndrome can be, but her words betrayed her. She said things like, “They dress her in cute, funky clothes,” and, “She can walk around the neighborhood all by herself and the neighbors keep an eye on her.” What I heard was not that she wears cute clothes and goes for walks, but that her mom still chooses those clothes, she can’t drive, and she needs the neighbors to look out for her on a walk around the block. I didn’t feel particularly consoled.
People are always trying to downplay the hard part and overemphasize the good instead of letting the tension remain.
February 2006
There were days when I woke up and felt like any other new parent. I kept a daily log, recording how long Penny nursed on each side, how often she urinated, when we gave her a bath. We bumbled our way through her one-month checkup. I somehow managed to bring a diaper bag with no extra diaper, leaving the pediatrician to construct one for us out of plastic “hazardous waste” bags, paper towels, and Band-Aids. One day Peter found me at eleven in the morning in my pajamas, in tears because we had run out of bananas.
We made mistakes. We felt overwhelmed. And we recorded all the ordinary details of life that had suddenly taken on new meaning because they were hers for the first time. There was the record of Penny’s first snowfall, her first walk outside, her first bottle with her dad, the first time we caught her smiling in her sleep.
And then there was her first overnight alone with me. In the middle of February, Peter headed north to coach the girls’ varsity squash team in the National Championships. I felt a pang of longing as he said good-bye, with a kiss on Penny’s forehead and a longer kiss on the lips for me. Stuck in my throat were the words “Don’t go.” But he had an obligation to the team, and he enjoyed coaching, and I would be fine at home, just fine.
Peter grew up loving sports. Skiing, kayaking, tennis, soccer, baseball, golf, gymnastics, riding his bike around the neighborhood—he had stories to go along with just about any physical activity imaginable. He spent much of his childhood in New Orleans, so squash had been a new challenge for him when he arrived at a Connecticut boarding school in ninth grade. He picked up a racquet and learned to play, adjusting to the game’s geometry, bouncing the hard black ball off all four walls, training his body to swing from high to low and take long strides rather than short steps. His team had made it to the finals of the New England Championships his senior year. Ten years later, he could still give me a point-by-point description of the tournament.
I had never been much of an athlete. I spent my early years in a small town in North Carolina where piano lessons and ballet classes took up our afternoons. By the time my dad’s job prompted a move to Connecticut, I had decided it was too late for me to pick up sports. In high school, when an afternoon activity was required, I had shown up for soccer practice in Keds. I hadn’t owned running shoes or cleats.
I had trouble understanding Peter’s love for physical activity and his competitive spirit, but I knew that getting himself out to the courts every day, exhorting those girls to play better and work harder, really mattered to him. When Penny was born, a colleague had offered to take over his coaching responsibilities. But he didn’t want the help. He had gone to practice two days after we came home from the hospital, and he told the girls the whole story about Penny. As he walked out the door for the tournament, I managed to say, “Have a great weekend. I hope the girls play really well.”
———
It started to snow the next day. Big light flakes spinning their way to the ground. A quiet blanket of white, outlining the limbs of the trees and the rooflines, covering the paths and roads and cars. I sat in the front room of our apartment with Penny nestled against my body, rocking back and forth, gazing at the snow.
Before long, I turned my gaze to the child in my arms, hearing Peter’s words from a few nights before: “It is so hard to believe you are going to face the challenges you are going to face.”
Her big blue eyes were locked on mine, studying me. I thought back to her bath, her array of facial expressions, her baby smell. The way she grasped my hand with her warm little fingers and held on. The way she tracked objects with her eyes and calmed herself to sleep. Her hands discovering her mouth. It all seemed so normal. So hard to believe.
When I awoke in the middle of the night to nurse Penny, the snow continued to fall. All through the next day, it snowed. Peter and his team were stranded three hours away.
We talked a few times each day. I reported on Penny’s naps, on the hour she spent lying on my chest, her feeding schedule. I heard the squash scores. We compared notes on the weather. Eight inches on the ground in New Jersey. Two feet in Connecticut, but now the sun was shining.
On Sunday night when he called, his voice sounded different. It wasn’t the clipped tone of a reporter. It was the voice I had fallen in love with, the voice that had told me the story of his grandfather’s death, the voice he used when he couldn’t figure out what to do, the voice that came out whenever he shared memories of laughing with his mom.
“I was crossing the street with the team,” he said. “There’s just so much snow. It’s hard to even describe it. And on the sides of the road there’s even more from the plows. Anyway, we were crossing the street and I turned around for some reason. It was really sunny, but something caught my eye. There was a woman in a puffy red parka. She was struggling to get through a snowbank. So I told the team to go ahead, and I went back to help her. I took her hand. She was all bundled up, so I just glimpsed her face. It was only as I watched her walk away that I realized she had Down syndrome.” He paused. Almost in a whisper, he said, “I just hope there will be someone who goes out of their way to help our daughter cross the street.”
“I wish you were here,” I said. “I love you.”
After we hung up the phone, I relived his story in my mind. I could see it—the sunlight glinting off the snow, Peter in his navy blue corduroys and boots rushing to her aid, the look of relief on the woman’s face. I could feel it, too—the kindness he offered before he even knew what he was offering. But I couldn’t imagine how she would have felt. Had it become commonplace to need help? Was it frustrating? Did she want to resist his hand and do it herself?
From the outside, anyone who looked in on my life would have said I had never needed much help. The same was true for Peter. We had always been able to do it alone. But now people looked at me and they saw my daughter. Just a few days earlier, a friend had said, “I can see Penny’s Down’s because of her mouth and tongue.” It was an innocuous comment, but with it I realized how quickly people would judge her based upon her appearance. And many of those judgments would be negative ones or at least fearful, ignorant ones. I then realized that when anyone saw me or Peter, they usually had immediate positive impressions—well-dressed, good looking, in-shape. Acceptable. But now we were bound to our daughter—our beautiful, cuddly, disabled daughter—and so her vulnerability, her weaknesses, her needs had become our own.
About a year into our marriage, Peter and I had been eating dinner and one of us said, “Have you ever thought about never having kids?” and the other replied, “Yes!” When we referred to the conversation later, we couldn’t even remember who brought it up, since both of us had been thinking it for so long. We had been the first of our friends to get married, but as other peers started bearing children, we realized we weren’t so sure. There were plenty of reasons for our ambivalence. Peter’s parents had divorced when he was young. We worked with high school students and felt as though we had plenty of time with kids as it was. We liked each other’s company and had no sense that there was something missing. But really, it came down to limitations. We
liked having the freedom—the finances, the time—to travel to Europe once a year. We liked sleeping in on the weekends. We liked long road trips and working late and controlling our schedules.
And here we were, with a child who would limit us more than we had ever imagined. Penny would walk later than other kids and with less stability. Her body was more prone to infection. She would have trouble solving problems. She might never live on her own.
When I was pregnant, a woman had said to me, “When you have a child, you find that your heart is beating in someone else’s body.”
Her words had struck me as an exaggeration, and a somewhat dramatic one at that. But I was starting to understand what she meant. Nearly every day I bumped into an assumption about who Penny was supposed to be, and every time it felt as though I reopened a wound. Months earlier, I wouldn’t have paused when I read in a baby book about “the perfect 46 chromosomes” that make up your child. I wouldn’t have noticed when the woman who cut my hair said, “You’ve got to have your kids young, before you’re thirty-five, you know, so they won’t be screwed up.” I wouldn’t have gulped at the reference in the Time article to the “seemingly hopeless diagnosis of mental retardation.” I wouldn’t have thrown away the Parents magazine with the cover that asked, “Will your child be tall? Athletic? Intelligent?” And I wouldn’t have wondered whether all those assumptions might have been wrong.
———
Peter returned from New Haven on Monday night, after five days away. Penny was asleep, swaddled in a pink-and-white striped blanket, and I was already in bed. He scooped her up from her Moses basket and climbed in next to me.
“If you could take away the extra chromosome,” I asked, “would you?”
He took a long time to respond. I kept my eyes fixed on the smooth skin of Penny’s face. I swelled with pride just thinking about the way she had lifted her head while lying on my chest earlier in the day. And then Peter said softly, “Yes. If I could take it away, I would.”
I nodded. So would I.
I knew it was an impossible exercise, to consider extracting that genetic material from every cell in her body, to think of changing her molecular structure altogether. I knew it was an impossible question, an admission of helplessness even to ask it. And Jesus’s words returned: “Whoever receives this child, receives me.”
———
Those words haunted me. I didn’t open my Bible often those days. I didn’t pray much, either. I would have liked to ignore God altogether, but my whole adult life had been consumed with Christianity. I couldn’t get away, even though a part of me wanted to. We had been studying John’s gospel in church that fall, and I couldn’t stop thinking about the very last chapter, where Jesus told Peter that when he got older, “Someone will dress you and lead you where you do not want to go.” And then Jesus said, “Follow me!”
The words came as a message across the years, although I wasn’t sure whether to take them as a command or an invitation. Follow me where you do not want to go.
I looked up the passage. It occurred after Jesus’ resurrection, when the disciples were unsure of themselves, unsure what had happened to their leader, unsure whether they might be the next ones to die. So they went fishing. They went back to what they knew how to do. They went back to a familiar place. It didn’t go well. They didn’t catch anything until a man showed up on the beach and told them to throw their nets in one more time. And then they hauled in an abundance. Luke told a similar story, but his version showed up much earlier in Jesus’ ministry, when Jesus first called the disciples. I knew that some scholars saw this passage from John as a retelling of the same scene, but I saw it as Jesus’s way of saying, “Don’t you remember how I called you the first time? I know it’s been rough lately, but this life with me is about abundance. Don’t you remember?”
I closed the Bible, my finger holding my place. There was so much of me that didn’t want to remember the abundance of my life as a Christian. I had a shelf of journals, and I could take down any one of them to find answered prayers, verses from the Bible that spoke to my everyday life, whispers from the Spirit of comfort, purpose, blessing. And here was Jesus saying, “Don’t you remember?”
I couldn’t forget. The time on the beach where I had heard words as distinct as an audible voice saying, “I am with you.” The time I met Peter, certain that God had brought us together. The time in college when I was afraid to go back to school and said to my mother, “I just want someone to be there with me and hold my hand.” That same evening I had gone upstairs and picked up a dusty book filled with Bible verses from the bottom shelf of my bedside table. I opened at random and read, “For I am the Lord your God who takes hold of your right hand and says to you, ‘Do not fear; I will help you.’” And when I returned to school the next day, there was a card from my grandmother in my mailbox. Printed on the inside was the same verse, as if God had wanted to make sure I was paying attention.
The stories continued. They took me all the way to that moment in the car, seven months pregnant, when I heard the words, But then you wouldn’t have had this child. And again, yes. This child is the one I want. This child is the one I need.
Even now, if I wanted to tell a story about God’s provision, I could. I felt alone, but there was the Down syndrome support group with five or six other young couples who lived within a ten-mile radius of our home. The president of the group had told us that in her twenty-year history with the organization, there had never been so many parents with kids so close in age. We decided to start a monthly Friday morning gathering of mothers and children, with no agenda other than getting to know each other. I had been given this group of people, even though a part of me wanted to resist the gift.
I reopened the Bible and continued reading. Jesus had cooked breakfast for the disciples on the beach. I loved how mundane it was. Every example I had of God’s “miraculous” provision in my life was a lot like this one. No one could ever prove that Jesus had put those fish in the water. The miracle wasn’t a display of power. It was a reminder of who He was—the one who cared for them with abundance. The one who served them. It was a reminder of who they were—the ones called to receive from Him. The ones called to follow Him.
And as they were eating breakfast, Jesus turned to Peter. Three times, He asked Peter if he loved Him. Three times, Peter said yes. He reversed the three denials he had uttered as Jesus went to His death. And then Jesus commissioned Peter to “feed His sheep.” It all seemed so lovely up to this point: Jesus performed miracles, cooked breakfast, forgave Peter, and sent him out with renewed purpose. But then I remembered that Jesus was always telling His disciples that following Him involved suffering.
It seemed silly to think of the birth of our daughter as a form of suffering. Jesus talked about the suffering of being whipped and scorned and executed. How could the birth of a child with Down syndrome compare to a martyr’s death? And yet every time I recognized the purity of my love for Penny, I was dying to an old part of myself, an old part that thought the only ones worth loving were the ones who could be productive and articulate and considered attractive and successful.
Over the course of Penny’s short time with us, Peter and I had already talked about what her future might look like. “Do you think she’ll be able to have a job?” I asked.
“Someone told me about their friend’s brother who has Down syndrome and washes dishes.” He looked up quickly and said, “Not that she’ll wash dishes . . .”
But maybe our daughter would grow up to wash dishes. Maybe she would be able to serve joyfully in what to us would be a lifeless job. I had heard it before—“If you’re a street cleaner, clean to the glory of God.” And I had never understood that sentiment. But I could imagine Penny doing exactly that. And I could imagine being proud of her for it.
Jesus reminded His friend Peter of their history together. He cooked Peter breakfast. He forgave him. He gave him a purpose. And then He told him that he would suffer. But reading back over th
ose words, I noticed that Jesus didn’t ask Peter to embrace his suffering. He was honest that Peter would be taken where he did not want to go. There was no sentimentality. No false piety. No stoicism. Just a statement of reality: The road ahead would be hard, but this is the road where I will be with you.
Follow me where you do not want to go.
Penny would have Down syndrome no matter what. The call to me was to follow Jesus down that road rather than trying to navigate it on my own. And to trust that the rocky parts would be smoother with Him as a guide, and that the scenery would even be beautiful much of the time.
———
That first night when Peter was home from the tournament, I asked him to tell me about the woman with the puffy red parka one more time. His story held the vulnerability, the exposure, the hurt, alongside the joy of human connection, of giving and receiving. Before we went to bed, he said it again, “I just hope someone will go out of their way to help our daughter across the street.”
8
Penny is lying in the middle of our bed, staring at a small stuffed panda. She is enamored—her eyes light up and she bats with her hand to touch him and she almost smiles. Her hair has grown over her ears. It sticks up in front as though she were a high school boy who just discovered the wonders of gel. She is so bright and beautiful, and as I think about the fact (not likelihood, not prediction—the fact, the reality) that her development will slow down from here, I feel like we will be losing her, that she will always be fading away rather than coming to life. . . .
February 2006
March brought with it harbingers of spring—a few more minutes of daylight, a hint of warmth underneath the chill, crocuses poking their purple and white heads out of the ground. And like those flowers, with their tentative but persistent movement toward the sun, I started to venture forth with Penny.
Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny Page 7