First I reported back to the hospital for another hearing test. I was greeted by a petite woman with long black hair. I never learned her name or title. She scowled for a moment upon viewing us. “Come this way.”
She led me to the delivery floor, past the nurse’s station, past the reminders of Penny’s entrance into the world, the memory of that speck of blood on Peter’s shirt, those moments I had replayed in my brain for the past two months as if somehow I could rewind the tape and change the story. She led me into a dimly lit room filled with unused equipment. I wondered if this had been where the doctors had told Peter the news.
“The test will take about an hour,” she said. “You’ll need to keep her asleep.”
“I’ll do my best,” I replied, trying to mask my disbelief. I swaddled Penny and gave her a pacifier and started bouncing. Within moments, she had fallen asleep. The woman placed probes on Penny’s head and in her ears. I pulled a plastic chair next to the machine and sat in silence, rocking Penny any time she stirred. An hour later, the woman said, “She has a mild to moderate hearing loss in both ears.”
“Is it permanent?” I asked.
“Probably not. The findings are consistent with fluid buildup. It could even be amniotic fluid that remained after birth. It may clear up with time. It may not.”
“If it doesn’t, then what do we do?”
“You can try tubes in her ears, although we can’t be sure that will fix the problem. She may always have this level of hearing loss, which means she’ll have trouble with certain frequencies and with sounds like sh and th.”
I nodded. My demeanor didn’t change, even though inside I was shouting: Have you noticed that this is my child we’re talking about? I stood up, and Penny opened her eyes. I kissed her on the forehead. Do you know what it feels like to sing to your baby and wonder if she can hear you? I didn’t want any more medical information. I didn’t want any more news about what might slow Penny down or the therapies she might need or the problems she might encounter. All I wanted was to get out of the room.
But the woman said, “You should see an otolaryngologist.”
“Excuse me?”
“An otolaryngologist. An ENT. Ear, nose, and throat doctor. They might want to schedule a surgery soon.”
I shouldered the diaper bag. “Okay. Will do.”
Peter took the news with more levity. When I mentioned the sounds Penny would have trouble hearing, he said, “Good thing we didn’t name her Sheila.”
———
As the list of medical tests and evaluations grew, my new friends with children with Down syndrome directed me toward the Children’s Hospital of Philadelphia, which they all referred to as CHOP. I made one appointment for an ultrasound of Penny’s hips (her pediatrician said they were so loose they might be out of their sockets) and another for an ultrasound of her brain (to check on an abnormality picked up in utero). Next on the list were the otolaryngologist and a visit to a genetic counselor. I started with the ENT.
After requesting the customary information—name, date of birth—the receptionist asked, “And what is the nature of your visit?”
“Well, she was born with Down syndrome and she failed her newborn hearing test. And then a follow-up test suggested that she has a mild to moderate hearing loss in both ears and the person who did the test said we needed to see a doctor.”
“Oh my,” she said.
Even though she couldn’t see me, I felt my eyes blinking rapidly, as if I could communicate my confusion over her response. Before I said anything else, she asked, “Did you know? Ahead of time, I mean. Did you know?”
“About the Down syndrome?” Of course she meant the Down syndrome. “No, we didn’t know ahead of time.”
“Oh my,” she said again.
“Yes, well, I’m just calling to see when I can get an appointment.”
“Right. Okay.” She paused, and I envisioned her frowning at a computer screen. “No,” she said, “that’s too long. I’ll tell you what. I’m going to put you in next week.”
“But I thought there would be a wait . . .”
“I think it’s important that your daughter see a doctor,” she replied.
“Well. Thank you.”
The next call brought more of the same. The receptionist at the genetic counseling department insisted that I speak directly to a nurse practitioner, and then they agreed we shouldn’t wait for the next available appointment. The doctor would see us in ten days.
I hung up the phone and looked around our living room. I couldn’t quite figure out why we, among all the patients at CHOP, warranted the special treatment. It was as if I had shown up at the end of a long line and everyone insisted I move directly to the front with the words, “Yours really is the exceptional case. This is a VERY BIG DEAL. We rearrange our plans for situations like yours.”
I couldn’t decide if I agreed. Sure, Penny had an extra chromosome in every cell of her body. That was a big deal. And every week brought news of another specialist we’d need to see someday. And yet she also seemed so much like any other baby, except easier, actually. She had started sleeping ten hours a night without any coaxing. And when she awoke, around six thirty, she was often content to lie in her crib for ten or fifteen minutes just cooing and looking around until I had roused myself enough to attend to her. Her eyes lit up when she saw Peter or me. She cuddled and cried and ate and slept. What was so different? What was so exceptional? What was so wrong?
I soon discovered some of the pediatrician’s fears were unfounded. Penny’s hips were fine. The brain ultrasound showed a “normal variant” that probably wouldn’t pose a problem. Missy, Penny’s therapist, showed up for her first visit and told us she was doing “great.” We had a scare when Dr. Bill detected a heart murmur, followed by a visit to the cardiologist who discovered Penny had an open blood vessel between her heart and her lungs. But even there, the doctors didn’t register grave concern. If it didn’t close on its own, they would perform a simple surgical procedure when she was older. So the books and charts, the response of the receptionists, the terrifying statistics—they didn’t line up with what I was experiencing in our little girl.
———
My mother came to spend the night every Thursday. She drove the two hours south to visit her granddaughter, but she also came for me. As the oldest of four, I had always been independent and responsible. When I was a kid, I unloaded the dishwasher without needing to be asked. I wrote down phone messages. I never broke the rules. At age thirteen, I had gone away to school. I saw my family every couple of weeks and talked to my parents on the phone every Sunday. I had done much of my growing up on my own.
And yet, when Penny arrived, I needed my mom. I needed someone to teach me lullabies, to reassure me it was okay to let a baby cry, someone to help fold the laundry and listen to my fears and tell me to go take a nap. But I also needed the comfort of the woman who loved me like I loved Penny, the woman whose love meant she would give all she could to care for me, to keep me safe.
That week when Mom arrived, we bundled Penny into the stroller and headed outside. Penny lay on her back with a cotton hat that looked like a strawberry perched on her head and a blanket to protect her body against the breeze. Her eyes darted around—watching the bare branches as we walked under an oak tree, shifting her gaze to me, then studying her hands.
“What are you reading these days?” I asked Mom.
“Oh, a book for book club,” she replied. “March. It’s written from the perspective of the father in Little Women.”
I could feel my throat tightening. I wondered why I had even asked the question. It was one of the things I couldn’t stop thinking about, that Penny wouldn’t share my love for books, for words, for reading and writing. That I’d never be able to give this part of myself to my daughter.
“Mom,” I said, “Penny’s so alert and so sweet right now, but sometimes I’m afraid she’ll seem less and less alive the more she grows up. Everything I read sa
ys that she’ll start slowing down, physically and mentally, and I feel like we’ll start losing her then.”
Mom took a minute to reply. Her hair was pulled back into a ponytail, showing her earrings, two cat’s eyes. Every week it was a different pair, each chosen for the enjoyment of her preschool class. Her face had a few lines on it, but she still looked young to me, young and strong. She said, “Just because you come alive through the intellect, and just because Penny won’t share that with you, doesn’t mean that she won’t come alive. She will come alive. It will just be in ways that are different from you.” She kept her eyes on Penny as she spoke, and her voice held a measure of wonder.
“You know,” Mom said, “you’re the only one of my daughters who talks to me about books.”
Kate had never been a reader. She ran a dance studio, and she and Mom shared a love of teaching young children. Brooks connected with Mom through sewing and painting. Elly had a newfound interest in cooking and gardening. But beyond those points of connection, Mom had always been available to listen to us—in car rides from one activity to another, in the kitchen as we complained about school or boys or friendships while she cooked dinner, even late at night when we woke her up to tell her we had come home. It was her presence that made a difference, not shared interests. I only hoped I could give the same to Penny.
When we got back to the apartment, Mom, in her gentle but firm way, sent me to my room. “Take some time for yourself” was all she said.
I picked up my journal and climbed into bed, still thinking about our conversation, trying to puzzle through the intense sadness that gripped me every time I thought about Penny and reading. I considered the words used to describe intelligence. Terms associated with light and precision: bright, brilliant, sharp, smart. Their converse: dull, faded, drab. But Penny’s eyes were full of light and her face and body full of life and movement. I pictured her delight when she found her mouth with her fingers, her look of astonishment after a burp, the stern concentration on her face as she prepared to swat at a toy.
Up until then, every time I thought about having a daughter with mental retardation, I had thought about it in the ways it would be beneficial for me. I knew my love for Penny was shattering idols and overturning prejudices and teaching me to value so much more beyond the life of the mind. But as I lay in my bedroom trying to put my thoughts on paper, I finally admitted just how important words were to me, how much a part of my life, how integral they were to who I was and to what made me happy and to how I loved and served others. I let the tears come, grieving the thought that there was a part of me my daughter would never know.
———
But after that day, whenever the same sadness arose, it led me back to the questions Mom had provoked. What, if anything, was there to be sad about? Was every life meant to include a certain IQ score, physical prowess, perfect sight and hearing?
I realized that I had always assumed it was very sad to have a child with mental retardation, or, for that matter, to be a person with mental retardation. But why? Why was that sad—because our culture held the intellect in such high regard? Because life was only as valuable as what we could produce or what academic degrees we had attained or how attractive we were or how big our house was? What was sad about having a child with Down syndrome?
I started going for a walk with Penny every day. The green shoots of daffodils strained toward the sky. The trees grew buds and the earth absorbed the morning dew. And I finally realized that my real question had to do with goodness—what, if anything, in how Penny had been formed was not good? In a Nietzchean universe, of course, her existence was a tragedy, plain and simple—an accident, an abnormality, biology “gone wrong.” But in a God-created universe, what was good and not good in her? And was it any different from that which was good and not good in the rest of us?
As we walked, I narrated our surroundings. I pointed out the pond, the geese, the ducks, and even a blue heron. It struck me that it was not good that Penny had fluid in her ears that impeded her ability to hear. Something good could come of it, of course, but in and of itself it was not good for her to be cut off from a form of communication and interaction with others. I thought about our friend whose daughter had autism and the way her parents described her alienation from the rest of the family, even from herself. My friend’s daughter was a human being with gifts to offer. And yet it was not good for her to be separated from relationships with her family. Or I thought about my friend whose daughter was diagnosed with anencephaly in utero. The doctors had all assumed she would abort the baby, but she insisted on carrying her to term. “My daughter is alive until she dies,” my friend had said. She had recognized the value in her daughter’s life, but it was not good that her life was cut short.
I still wondered, was mental retardation inherently not good? Or did it just seem not good because it was not something that I wanted or knew how to understand?
My thoughts went back to the idea of the kingdom of God. Between Jesus’s parables and the biblical descriptions of the new heavens and the new earth, I had a picture in my mind of what life would be like without sin, without separation, without everything that is not good. Would Penny be herself in these new heavens and new earth? Would I recognize her? Or would that extra chromosome be taken away, altering her appearance and her intelligence and her capabilities and her personality?
I thought about Jesus, with the marks of His suffering on the cross still inscribed upon His hands and side even after the resurrection. And it seemed to me we would bear our wounds in heaven—we would look the same and very different all at once. It made me think Penny would both look like herself and be transformed. As would I.
After weeks of thinking about Penny and about what was not good in her, I finally realized that there was just as much—no, there was more—that was not good in me. All the pettiness, all the judgment, all the bias. Over and over again, I had thought about who she might have been if that extra chromosome hadn’t gotten stuck in that first moment of conception. I couldn’t escape wondering about the “real” Penny, my daughter who seemed hidden behind her diagnosis. I had wanted to be able to change her instead of receiving change myself.
Penny and I might never talk about literature together. But I had to trust that we would continue to communicate love to each other. That the way she nestled against my chest and calmed under my touch would one day translate into words that said the same. And I had to trust that she would keep growing up and become even more who she was: bright, delightful, a joy. I had to trust that I, too, would keep growing up. It wasn’t hard to believe that love would keep changing me.
9
I remember arriving by train in Prague last summer. The station was dirty, the language unfamiliar, we couldn’t speak or read the alphabet, and we had no currency. Our first cab ride was a rip-off. The driver overcharged the ignorant Americans. I remember feeling—in spite of all the wonderful things I had heard and read about Prague—that I wanted to go home. I wanted to go home where it was familiar and predictable and safe.
I have had this same feeling since Penny was born. I am told that life with a child with Down syndrome will be full of grace—blessings abundant, joy, beauty. But often it is simply overwhelming, foreign, scary, and I no longer want the adventure. I want to forgo the benefits in light of the discomfort and unknowns. Yes, that is what I often feel. I want to go home.
February 2006
“I miss my wife.”
He said it softly, almost under his breath. A lone tear made its way down his cheek.
“I hate to say it, but I feel like I’m competing with our daughter.”
I leaned against Peter’s shoulder and took his hand, grateful for the familiar warmth of his body behind mine. I hadn’t expected his words, and yet as they lingered in the room, heavy with months of waiting to be spoken aloud, I understood. It had been just the two of us for so long. We had met in high school—he the handsome troublemaker who went from one girlfriend to the n
ext, me the bookish girl who never went to parties. I could still remember our first conversation, standing in darkness, talking about friendship. He had surprised me then with his thoughtfulness and his honesty. He had surprised me even more when he initiated another conversation, and another, and another. Within ten days we were an official couple, through the rest of high school and college. We married three weeks after his graduation. Now, nearly seven years from our wedding day, he was still my best friend.
Silence covered us. I listened to him breathing, felt the slight shudder in his chest from the tears, ran my thumb over his knuckles, placed my fingers inside the palm of this hand I knew so well. And for a while all I did was think about our years together. The time we took a walk through the leaves on a cool day that first fall when we were dating. Or the time he packed a picnic on the beach and refused to break up with me even though I deserved it. Or the night we stayed up past midnight painting our bedroom a green the color of a Granny Smith apple, which we regretted in the light of day. His first visit to my parents’ house, when he danced with my little sisters in the attic. The times he held my hand and listened as I panicked about a paper I had to write. The night he proposed, in the same spot where we had met as teenagers.
And I thought about our years at Lawrenceville. Even though I hadn’t been employed by the school, we always had seen ourselves as a team. We invited his students over for meals. I knew the boys who lived in our house, and I generally sat downstairs with them for a while on Saturday nights when Peter was on duty. I knew what topics he was teaching and whether his kids’ writing was getting any better. I helped him plan his syllabi. I even checked his email for him when he couldn’t keep up. But for the past few months, from the end of the pregnancy through the beginning of Penny’s life, I hadn’t heard much at all about his work. I hadn’t asked about his students, what he was teaching, what he was thinking when it came to the classroom or the squash courts or the boys in the house. I certainly hadn’t asked how I could help.
Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny Page 8