It was still hard for me to believe that she wouldn’t solve math problems or read literature. And yet it was easy to believe that she would rush to a friend, or even a stranger, in need. Easy to believe that she would continue to bring light and life. And it was getting easier to believe that, as time went on, she would tell me the stories I needed to hear.
10
I cringe when people say God chose us to be her parents or that He picked the perfect family for her to be a part of. I resist these statements because they only have to do with us being wonderful, with pressure to stay that way. She, I hope and pray, will be blessed by us, but I also know she will be a blessing to us, an answer to prayers that we be broken of our pride, that we become more real . . .
January 2006
For all my years of Christian piety, a few months after Penny was born, I still had trouble talking to God. It had always been easier for me to think about things than actually pray about them. And for a time, I hadn’t felt a need to pray. Other people could, and did, pray for me since I couldn’t seem to muster the energy, or the faith, to approach God on my own. Even though I hadn’t set foot inside our church, I passively and gratefully accepted intercession, in the same way I received casseroles and baked chicken and meatloaf. But as the hours of daylight increased, and spring began to woo me with breezes that smelled earthy and warm, I realized that when it came to God, I was trapped in a barren winter. I wanted things to change.
I called Virginia for advice. “I’m stuck,” I said, and described my situation.
“I’m not sure I would call it stuck,” she replied. “I think this is just fallow ground.”
I wrote her comment in my journal in hopes that she was right. Maybe God will do something with this emptiness. Maybe someday I’ll care about work or intellectual discussions or politics. Maybe I won’t always think about Down syndrome all the time. Maybe someday I’ll feel like myself again.
But I also needed to stop imagining that one day I would wake up and return to life-as-usual. It still surprised me really, that Penny had Down syndrome and that Down syndrome was permanent. It wasn’t as if a doctor would ever say about her extra chromosome, “It was touch-and-go for a while there, but now we’re out of the woods.” No, the woods—as vast and beautiful and menacing and fascinating as they might be—were home now. We were there to stay.
———
Before Penny’s birth, I usually joined Peter for the early part of his evenings on duty. Every Tuesday night, he would eat dinner with the boys and then sit downstairs or roam the halls during check-in and study hours and lights-out. He would be gone from 5:30 until midnight. In the fall we had often strolled across campus together, fielding comments from friends about my rapidly expanding midsection, waving hello to kids who had lived in our house the year before, catching up with each other about the details of the past day. But once Penny was born, I stayed in. I told myself it was for her—it was too cold to walk outside at night, and her immune system was more fragile than those of other newborns, and I didn’t want to disrupt the nighttime routine we were establishing. But these were convenient excuses. In truth, the walls of our apartment became a refuge for me, a sanctuary.
Inside, I knew what to do. Outside, even for something as simple as a walk to the dining hall, I was afraid. I worried about bumping into one of Peter’s colleagues at the salad bar. I imagined their questions: Why is she so small? Why does her tongue stick out of her mouth? Is it a mild case? And I wasn’t sure I could handle seeing all the other young families with kids bounding from table to table, talking and walking and growing up, doing all the things I was afraid Penny might not ever be able to do.
It was easier to stay home. It was safe. But it had begun to suffocate me.
So one Tuesday night that spring, I brought Penny downstairs to the common room. It was almost time for her to go to sleep. She wore lavender pajamas with white flowers, and her hair, wet from the bath, stuck out over her ears. Peter’s laptop sat on the worn green sofa, though he was nowhere to be seen. Two boys lounged in poses of procrastination—a leg slung over the arm of a chair, feet extended upon a coffee table. There was Matt—blond hair and a serious face, with the gait of an athlete. And Joseph, from Brooklyn, still outgrowing his freckles and round cheeks. They each played a varsity sport and took rigorous courses that would put them on the road toward an Ivy League university. I took a seat in an upholstered wing chair and perched Penny on my lap, facing out.
“Hi, Penny,” Matt said, with a wave.
“Hi, Matt,” I answered, moving her hand up and down.
He smiled. “How is she?”
“She’s great,” I said, resting my palms on her warm little legs. “We’ve started physical therapy, and the therapist says she’s doing great, too.”
“Why does she need therapy?”
I nodded, relieved that he had asked a question I could answer. “She has low muscle tone. It makes her kind of floppy, and it makes it harder for her to sit up and to walk.”
Joseph was listening now, along with two others who had wandered into the room as we talked. He asked, “Once you get through all the physical stuff, she’ll be normal?”
His tone was so sweet, and his expression so earnest, I hesitated just a minute before responding. My eyes wandered. Decades ago, this room had been the spot where the boys gathered with their housemaster every evening for tea and cookies to discuss the events of the day. It had since lost its formality, but reminders of the past hung on the walls in the forms of placards and black-and-white photos, and the room held the contemporary marks of the highly educated—the backpacks filled with massive textbooks, copies of the New York Times and Wall Street Journal spread out upon the coffee table.
I faced Joseph and said, “We know two things for sure. Penny’s physical development will be delayed, and she’ll have mental retardation.”
He looked down and said, “That’s really hard.” When he raised his head again, his eyes were wet.
I tried to keep my voice steady as I said, “You know, it is hard, but I think it’s good, too. I’ve always valued intelligence too much, I think. And even that—intelligence . . . There are so many forms of intelligence. Penny might not be book smart when she grows up, but I’m sure she’ll teach us a lot.”
A crease appeared between Joseph’s eyebrows. “But what will she be like when she’s older?”
I tried to see Penny from the eyes of these students. They had watched Peter take her in the crook of his arm and carry her around the house like a football. They had seen him dance with his daughter and sing to her and call her beautiful. Peter rarely talked about muscle tone or IQs, so I realized what I was saying came as a surprise. “Let’s just say she won’t be going to Lawrenceville,” I replied gently, voicing out loud this thought that knocked on the door of my mind every day as I looked out our window at the students walking across the grass.
“I bet she will,” Matt said, leaning forward. “I know a girl from home with Down syndrome, and she takes AP classes.”
Joseph, more relaxed now, said, “I know a kid whose IQ is only 96, but he’s really smart.”
I didn’t tell Matt he had to be wrong about the girl from home. I didn’t tell Joseph that mental retardation is considered an IQ of 70 or below. I just held Penny, with her back pressing against my stomach and her hands clutching my index fingers, and her hair that smelled like honey underneath my chin. And I saw these boys—who had begun to love her—I saw them start to want the world for her. To insist that with the advantages of America and financial security and boarding school and all the rest, she would not be different. She would be just like them. Right?
But she wouldn’t be just like them.
I said, “You know, for all of my life, I have relied upon being smart. I’ve always been the kid who could read and write faster than anyone else and get good grades and all that. And it’s not a bad thing that I like being smart. But it is a bad thing if all I value is intelligence, an
d if I can’t care about or relate to people who aren’t the same as me. I don’t think Penny will be intelligent in the same way that I am, but I think she’ll have other abilities—emotional, or artistic, or just an ability to love people.”
They nodded as I talked, but the sadness returned to their eyes.
Peter had walked back into the room while I was speaking, and I stood to greet him.
“Hello, beautiful,” he said, with a kiss for me and then another for our daughter.
I smiled and said, “It’s time for bed.”
Once upstairs, with Penny asleep in her crib, I lay down, hands behind my head. The conversation had pushed me into memories of my own days away at school. I had rarely sat around and talked with faculty members or gotten to know their families. I had been too busy. All those papers, all those good grades. I remembered when I received my early acceptance letter to Princeton. It was over Christmas vacation, so I was home alone when the mail came and could only celebrate by myself. I didn’t cry out or jump up and down. I just let a grin spread across my face, delighted, but also self-satisfied, as if I had known what the letter would say. As if I deserved it.
That was the thing. I thought I deserved it. I thought that all the hours of studying and forgoing social events in favor of homework and doing independent projects with teachers—I thought my achievements were due only to hard work. But I had no doubt Penny would work just as hard as I had, maybe harder. And she would never go to Princeton. It wasn’t just about hard work. It was about background and genetics and opportunity. My life wasn’t something I deserved. It was a gift.
———
A few days later, Penny was lying on her back with toys hanging overhead. She screwed up her face, eyeing the red and purple rings. Then she moved her left hand, first in an arc from her ear to the dangling circles above, and then again with a swipe from the side. She grasped the rings and held on. I swelled with pride.
But as soon as she let go of the ring, with hardly a pause to clap for her accomplishments, I let my thoughts go. Maybe she will be the exception. Maybe she’ll be the child with Down syndrome who beats the odds. Maybe she won’t be delayed. Maybe we don’t need to think about legal guardianship when she turns eighteen or integrated versus self-contained classrooms or social services or occupational therapy.
My thoughts moved so quickly away from Penny, from that moment of triumph to fear. Just like that first day in the hospital when Penny was in the nursery. Out of my sight she had become a concept, an abstraction, rather than a living gift, a child, our little girl.
All through my pregnancy, I had compared my experience to “what the books said,” and it always relieved me when the two lined up. And as soon as Penny grabbed that ring, I wanted to reach over to the bookshelf and pull out a chart that told me when a typical child would start to grab with accuracy. Or to open a recent acquisition, Gross Motor Skills for Children with Down Syndrome, and see whether she was ahead of the curve. But before I opened either book, I stopped to study Penny’s face, the cheeks that looked like two mounds of dough, the long eyelashes that had started to curl, the eyebrows that had changed from blond to brown.
I reached out my hand. She grabbed hold with her fingers, and I tried to believe that I didn’t need books to tell me what I was seeing when I looked at our daughter. All I needed was to know that she was developing—that last week she swatted and today she grabbed. That she could lift her head a few seconds longer. That she had begun to enjoy sitting on my lap and looking around the room. That her eyes followed toys. That she could hold on to her rattle.
It seemed as though every day another event occurred—she smiled, I propped her upright on the couch and she didn’t fall over, she turned her head at the sound of my voice. And every day I puzzled through pride and love that was somehow coupled with fear and sadness. We strolled around campus, and I noted out loud the life emerging all around us. After the crocuses came the daffodils, their cheery heads waving in the dappled sunlight. In May, with Penny four months old, the dogwoods and cherry blossoms bloomed and their petals rained down. I started to pray. Just a very simple prayer. Lord Jesus, I want to know you again. I want to believe.
———
It took me a while to think my prayer would ever be answered. But then one day, four senior girls came to visit.
Two years earlier, as sophomores, they had asked me to lead them in a Bible study. Once a week, early in the morning, they had shown up at our door. They knew to let themselves into the kitchen and start making breakfast, and then they piled into our living room and peppered me with questions about God and Jesus and the church, sex and drinking and boyfriends and marriage, other religions, politics. We had talked about alcoholism and the death of a friend and eating disorders, and they had watched my body change throughout my pregnancy. They had shed their own tears when Penny was born. This was the first time in months that all four of them had been in our apartment together.
Eliza picked up Penny’s birth announcement as soon as she walked through the door. She flopped onto the sofa to take a look. I had just sent the announcements out, even though I had selected them months earlier—lime green with bright blue letters. We included a photo of Penny at three weeks old. In the photo her eyes were closed and her hands had snuck up to just underneath her chin, as though she were praying.
Audrey peered over Eliza’s shoulder to see the card and photo. With a sigh of contentment she said, “It’s perfect.”
Eliza nodded. “Perfect.” And then she looked around the room—the mantel filled with family photos, the wall-to-wall bookcases, the painting of Venetian gondolas over the fireplace. “It’s all perfect,” she said, with a vague sweep of her hand. “The pictures, the furniture, the paintings, your family, everything.”
“It is,” Catherine said, insistent. “You have the perfect life.”
Of all the things for these girls to say—these kind, athletic, sweet, smart girls—a perfect family? A perfect life? My life was as imperfect as it had ever been. There were days I couldn’t find the time to take a shower, much less return phone calls or put the dishes in the dishwasher. There was the disorder of my thoughts, the questions for God, the tears. And then there was Penny. The language surrounding Down syndrome suggested a special state of imperfection—abnormal, birth defect, cell division gone wrong.
I wanted to ask what it was that made them say we were perfect. Was it just the surface? The lovely things and the college degrees and the smiling people in photographs? Or was there something more, something of substance? I took a deep breath, as if I was about to respond at length, but “Thank you” was all I said.
After the girls headed out, I sat with Penny on the floor of the playroom. She raised her hands in the air and studied them, flexing her wrists and wiggling her fingers. I couldn’t stop thinking about Catherine’s words. It wasn’t the first time my life had been called perfect. When I was a child on vacation, sometimes strangers would notice the four blond girls who were well-behaved and seemed to enjoy one another, and make the comment, “What a perfect family.” And it had continued when I got into college, and then when I married my high school sweetheart and we went on to work together for a nonprofit organization and then he got exactly the job he wanted and I got into exactly the Master’s program I wanted. Perfect family. Perfect marriage. Perfect life.
I took Penny’s hands and started to go through the steps of infant massage. My thumb in the arch of her foot, fingers on top, rotating her ankle left, then right. My thumb pushing against the sole of her foot, heel to toes. My hands on her legs, twisting gently, as if I were wringing out a towel. All the time, thinking, the muscles of my own body tight with concentration, as if I needed to wade through the weeds of memories to get to the clear water of thoughts. As if there was something worth seeing up ahead, if only I could make a way.
I interrupted the massage to pull a Bible from the shelf. Penny gazed up at me as I flipped through its pages to find the verse that had co
me to mind from Matthew’s gospel. 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, 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 the family we were created to be.
I put aside the Bible and the dictionary, laughing at myself a little bit. A seed had been planted in that fallow ground, through a comment from a high school student. Through a dictionary. Through my daughter. I lay down on the floor next to Penny. A shaft of sunshine warmed my shoulder and bathed her face in light. She grabbed hold of my index finger and I whispered, “Hello, beautiful girl. And thank you.”
11
Penny smiles all the time. She giggled yesterday when I bounced her up and down. She rolls and sucks her fingers and coos and looks us in the eye. She pulls her legs into the air and grabs at rings and clothing and toys. She is beautiful and sweet and we love love love her.
Can she live a full life without ever solving a quadratic equation? Without reading Dostoyevsky? I’m pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I’m pretty sure I can’t.
Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny Page 10