Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny

by Amy Julia Becker

  April 2006

  Peter found me in the living room, curled up in one of the armchairs we had inherited from his mother. He flopped on the couch across from me and put his hands behind his neck. “You are never going to believe this.”

  I put my book down. “What is it?”

  He shook his head, a bemused expression on his face. “I feel like we’ve just become members of an exclusive club, and I didn’t even know we’d applied.”

  I waited for more. He had just come home from an all-school meeting. Penny had been asleep for over an hour. I was drowsy myself, reclined with a glass of wine and a book.

  Peter sat forward, elbows on knees. “So I knew the speaker tonight was the grandfather of one of my squash players. But it was weird, because a couple different people told me that he really wanted to meet me and talk to me after his speech. I was thinking about how I didn’t know I’d made such a difference in this girl’s life and how I must be such an amazing coach, and then he gets to the part in his speech where he talks about being a senator who helped write the Americans with Disabilities Act because he has a son with Down syndrome!”

  Peter’s energy was contagious. I straightened up and sat cross-legged, like a kid at story time, waiting for the tale’s climax. He said, “First I had to laugh at myself, since the fact that he wanted to talk to me had nothing to do with my abilities as a squash coach or a teacher or anything. I got singled out because of Penny. All of a sudden, it was a privilege to be the one with the daughter with Down syndrome.”

  “So what did he say to you?”

  “Well, he shook my hand and slapped me on the back. He’s a big man—taller than me. And he said, ‘Congratulations!’” Peter shook his head. “I don’t think anyone else has been able to say that so definitively. And he talked about his son. I don’t even know what he said. It was just clear that he was proud of him. I mean, really, I felt like I walked into the most exclusive country club in the country, but it wasn’t because I had all sorts of money or the right résumé. It was because of Penny.”

  He stood up. “I’ve got to go give her a kiss.”

  “Don’t wake her up!” I called, as he bounded down the hallway. But I wouldn’t have minded if he had. I thought back to that first day in the hospital, when Peter had been encompassed by the darkness of Penny’s diagnosis, when he thought he would never be proud of her, never be able to love her, never think she was beautiful. I thought about how we had been afraid other people would pity us. And I remembered, as he was coming out of the pain of it all, he had said, “The highs will be higher and the lows will be lower.” I had known it was true at the time, even though I couldn’t anticipate the ways his words would play themselves out.

  I heard Peter’s footsteps again and looked up. “One more thing,” he said.

  I nodded.

  “So the boys in the house?” He waved his arms to indicate the dorm of thirty boys outside our apartment door. “You know how they raised money for a well in a village in India last year? They just told me that this year they want to raise money for Down syndrome, wherever we want it to go.”

  I thought about Matt and Joseph and all the other boys we saw every day. With a catch in my throat, I said, “That’s wonderful.”

  Peter kissed me before he headed back out into the dorm for a house meeting. I picked up a book on the coffee table, a gift that had arrived earlier that day. It was filled with photographs and stories of real people with Down syndrome—people playing on sports teams and a young man who became a deacon in his church, stories about boy scouts, volunteers, writers, artists, musicians. As I flipped through the pages, the images startled me. I thought—these kids are adorable, beautiful, just right. And I couldn’t believe my own response. I had a picture in my brain of what a person with Down syndrome looked like, but it didn’t match these faces. Where did my picture come from? Certainly not from personal interaction. From a composite of the handful of ads for the Special Olympics I had seen over the course of my life? Or perhaps I was starting to see beyond the common characteristics to the individuals. Perhaps it was as if I had moved to Korea and finally was learning to see distinctions among faces and body types instead of a mass of people who all looked the same to me. I closed the book with a small sigh and a smile. Peter was right. The highs were higher.

  But with beauty came pain. In mid-May we drove to the Children’s Hospital of Philadelphia again, this time so that tubes could be inserted in Penny’s ears. The procedure itself was easy. I had been warned by my friends that the hardest part of the day would be watching Penny, all ten pounds of her, wheeled away on a stretcher. In our case, the doctor cradled our daughter in her arms and carried her away. An hour later, she was done. I cringed to see the bruises on Penny’s hands, purple reminders of what had happened behind the scenes. But her recovery went well. She slept for seventeen of the next twenty hours and woke up her usual happy self.

  There wasn’t much to worry about when it came to Penny. I had learned the statistics—the higher rate of celiac disease and leukemia, the impoverished immune system, the chance of early onset Alzheimer’s. But right now I had a daughter who was flourishing, a little girl who mimicked my facial expressions and threw her head back in laughter at her dad and found herself utterly fascinated by her own right hand. What troubled me was the suffering that countless other children, other families, endured—the miscarriages, the deformities, the kids who never talked or walked or bathed or dressed themselves, the kids born into pain, the babies who died in the womb, the three-year-old with a brain tumor. And then I heard about a little boy with Down syndrome who had been born prematurely. He had died when he was five months old. He had never come home from the hospital. Theirs was the suffering I could not explain. Theirs was the pain I could not imagine having to bear.

  Now that I had seen those families—in the elevator, in the waiting room, in the books and online sites for parents of children with disabilities—now I had to wrestle with their pain. Either there was no God and natural selection worked her purposeless work and some of us passed along our genes and others failed and died trying, or God did exist and God’s creation was broken, but still glorious—every piece and person in it. I saw the brokenness more clearly in those with an extra chromosome, but I was starting to understand that their brokenness was no different from my own.

  One night at dinner, I asked Peter again, “If you could take away Penny’s extra chromosome, would you?”

  He wiped his mouth with his napkin and tapped his fingers together. “I don’t know.”

  I nodded. My answer was changing, too. “When it comes to Penny, I think I’m starting to understand why she has Down syndrome. Or at least to understand that she is who she should be, and that who she should be includes Down syndrome. I wouldn’t take away her extra chromosome because it might change her—her eye color or her smile or her personality. Saying I wanted to take away the extra chromosome would be like saying I wanted to take her away. But I can’t come to terms with some of the other disabilities and illnesses I see. Driving back and forth to the hospital—I just can’t stand how many kids are suffering and dying every day. I can’t understand how there is any purpose or goodness to it.”

  Peter chewed slowly. “Well, there have always been thousands of kids in cancer wards.”

  “But until your child has cancer and lives, and your new friend’s child dies, you can ignore those questions or keep them theoretical. Before, I didn’t have to think about those kids. Now I do.”

  Penny’s birth had caused me to rethink everything, start to finish. I remembered the feeling just after she was born, of waiting for the tsunami, waiting for the wave to crash. It was as if I had been swept out to sea in the hospital, but I hadn’t drowned. Now I found myself on the beach again, but the shore was different. I didn’t have my landmarks anymore.

  Peter had called it an exclusive club. I wanted to agree with him, but some days I thought we had become part of a group that was cut off fro
m the rest of the world. There were moments like the one we had in a friend’s living room. A kid from their neighborhood had come to visit. Penny sat on my lap. He looked at me and said, “Why does she look Chinese?”

  I felt as though my heart had stopped and reset. I said, heat rising to my cheeks, “Because she has an extra fold of skin around her eyes.”

  “Oh.”

  People noticed Penny. They noticed the epicanthal fold. They noticed her tongue. They noticed her floppy limbs. But they also noticed her attentiveness, the blue eyes speckled with light, her eagerness to smile. And again and again I heard the astonishment in their voices when they said, “She’s adorable!” “She’s so beautiful!” “She’s so alert!” I tried to remember that I had been surprised by it, too.

  ———

  In June, on the afternoon of our seventh wedding anniversary, Peter and I took Penny into New York City. Months earlier, my aunt, who had trained as a physical therapist in college, had given me a book called Yoga for the Special Child. I coaxed Penny’s body into the poses nearly every day, and I had discovered that the book’s author would be in the city for a training session. The three of us entered a studio with about twenty women sitting cross-legged. Sonia Sumar, the instructor, took Penny from Peter and invited us to sit back and watch.

  I could feel the anticipation in my chest, the excuses rising in case Penny didn’t respond the way she was supposed to—It’s nap time . . . She’s never been in the city before . . . She’s only five months old . . . But then Sonia began to chant and breathe rapidly through her nose. Penny giggled. She giggled again, entranced. And soon enough, there was my daughter, happily complying as a stranger manipulated her limbs, turned her torso for a twist, and then laid her on her tummy with arms extended. Then onto her back, and before long Penny’s hips were in the air in a perfect impression of bridge pose. Out of the corner of my eye, I saw Peter wipe away a tear.

  Twenty minutes later, it was over. The three of us crowded the stairwell outside the studio so Penny could nurse.

  “I was prepared to be cynical,” Peter said.

  I couldn’t contain my smile. “I know.”

  He exhaled loudly. “But, man. Just seeing her with Sonia. It was so beautiful.” He kissed Penny on the crown of her head.

  I finished nursing and put Penny over my shoulder to rub her back. Just then a woman rounded the corner. Her black curly hair fell past her elbows. She paused to look at Penny. She made faces for a moment and then declared, as if it were a pronouncement, “This child is surrounded by the most glorious light.” And then she walked up the stairs.

  A moment later, another woman arrived. She nodded to Peter and me, but then sat down next to Penny and began speaking to her in Italian. After we listened to her lilting phrases for a few minutes, she looked up at us. “You have a beautiful daughter.”

  “Thank you,” we murmured.

  “But may I ask why you’re here?”

  I gestured toward the classroom. “We brought Penny because they’re teaching yoga instructors how to assist kids with disabilities.”

  “Does she have disabilities?”

  I stroked Penny’s hair. “She has Down syndrome.”

  “Ah.” A smile spread across the woman’s face slowly, as imperceptibly as early morning sunlight reaches over the horizon. “I used to teach children with Down syndrome how to swim. What a gift.”

  “That’s what everyone says,” Peter replied.

  “I will tell you one story. It was a day for Special Olympics competitions. And this wasn’t in the pool. It was outside on the track. The kids were, oh, I don’t know, eight years old. They started running. And one of them fell down. And the rest of the kids stopped running. Every one of them stopped running and went over to help the one who had fallen. They finished the race as a group, helping the one who had been hurt.” She pushed herself up from the step. “Well, mia cara,” she said to Penny, “it was a pleasure to meet you.” She extended her hand to each of us and went on her way.

  As we drove home, all I could think about was her story. Even as an eight-year-old, it wouldn’t have crossed my mind to abandon the goal of winning the race in order to help another participant. I said to Peter, “You know, there are all these people who try to console me about Penny by telling me the ‘normal’ things she’ll be able to do. They tell me about a young man with Down syndrome they know who takes a bus to work every day. And I think, That’s supposed to be good news, that my daughter won’t be able to drive a car but might have a job?” I shook my head, gazing out the window at the cars passing by. “I know that there are plenty of reasons to be encouraged. But for me, the thought that Penny might one day walk herself to work is not one of them. It’s the stories like the one we just heard. It’s the thought that she might teach me to slow down, to love deeply, to compete less, to live more fully—those are the stories that bring hope.”

  Peter said, “It’s not just that she’ll teach us, but I think she’ll be the one to do those things. She will be the one who stops for the injured kid. She’ll be the one we admire.”

  He reached out and took my hand in his. And we drove home, this family of three.

  12

  Penny’s eyes are still very blue. Her iris has two distinct rings. The inner ring that surrounds her pupil is gray-blue and it bleeds into the outer ring, the blue of deep, still water. They look like pieces of blown glass. It’s ironic that those eyes—those slanted, epicanthal-fold eyes—are so distinctly beautiful. I am always surprised because she isn’t beautiful-even-though-she-has-Down-syndrome. She simply is beautiful.

  At the same time, I find myself angry that Penny has this extra chromosome. Some of that anger has to do with the problems it may cause her, that life might be harder for her than it would otherwise be. But much of my anger comes because life with a child with Down syndrome is probably going to be harder for me. . . .

  June 2006

  Halfway through Penny’s first year, as she began to try solid foods and learned how to form spit bubbles, as she mimicked our facial expressions and started to babble, as she laughed with her head thrown back and her mouth wide open, we moved to Connecticut for the summer. My parents had a beach house on the shore, and we were invited to live there for the two months of Peter’s summer vacation. Our days were filled with people—Penny’s aunts, her grandparents, great-aunts and uncles, even three great-grandparents. She loved the attention. If she cried, all she needed was for one of us to take her outside so she could feel the wind on her face. If the air was still, we soon discovered that music soothed her within minutes. As her Aunt Elly said, “ ‘Let’s Go Fly a Kite’ is as good as Valium.” Penny heard us sing it dozens of times.

  It was a summer of laughter. One day we sat outside on the cement porch eating sandwiches, with Penny nestled into her Nana’s lap, and I commented that Penny’s face was a perfect circle. “She could be a pumpkin,” Brooks said, and Penny giggled as much as the rest of us. Almost every time someone leaned in to kiss her, she grabbed their hair or chin or nose and they found themselves smiling at the greeting. As she learned to eat—peaches, mushy cereal, peas—she also learned to communicate when she was all done by spitting out the final mouthful and splattering anyone in her way. She sat on a rocking chair and bounced herself back and forth, alternately opening her mouth wide, sticking out her tongue, and experimenting with sounds—babadadada-ahh—to the claps and exclamations of anyone nearby.

  We settled into a routine. I spent the mornings writing while Peter put Penny down for a nap. He dropped her off with me when it was time to nurse, and then most days he dressed her in a bright pink bathing suit and hat and took her to the water’s edge. The little waves hugged her legs and she fingered sand and rocks and shells. I joined them for lunch and played with Penny until it was time for her afternoon nap. We ate summer tomatoes and peaches and squash and picked zinnias from my grandmother’s garden.

  Up to this point, the most constant emotion I felt about Penn
y’s diagnosis was sadness. I had thought that the salt air, the presence of family, the laughter and wind and music, would turn my sadness to delight. The sorrow did begin to dissipate, but only to make room for anger. I had started praying again, and my prayer took the form of words I had been taught not to say when I was a little girl. In no uncertain terms, I expressed my anger to God. Anger that Penny had Down syndrome. Anger that other children suffered and died. Anger that there was a cloud of uncertainty over the health of any of our future babies. Anger that I knew the directions to the Children’s Hospital by heart. Anger that I had to spend time learning about muscle tone and reading books about therapy. But most of all, I was angry at the thought that Penny had Down syndrome because we needed to be taught a lesson.

  I had heard it from friends starting that first weekend in the hospital. That God gave “these” children to people who needed them, who needed to learn patience and compassion and a different set of values. It made me even more angry to realize that they might be right. When I considered why I might “need” a child who took longer to learn how to speak, to walk, to read, to tie her shoes, to add and subtract, I could give a list of very good reasons. It would be good for me to be forced not to compete and compare myself, my child, my parenting, to my friends and their children. As an achievement-oriented, impatient individual, it already felt like a rebuke whenever Penny didn’t “hit a milestone on time.” Penny’s condition highlighted my own condition as a person with many flaws and failings that I would rather not see. Her existence forced me to recognize ugly parts of myself.

  But there was another explanation given to us about why Penny had Down syndrome. We were told that “they” were only given to very special people, as if we had passed some cosmic parenting exam and found ourselves at the top of the heap. I always wanted to retort, “If that’s the case, then why do so many women with a prenatal diagnosis of Down syndrome abort their babies? Were they singled out as special parents, too?” Or, with a slightly softer tone, I wanted to ask, “You say they are a gift, but do you long for a child with Down syndrome?”