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

by Amy Julia Becker

  Around the same time, I came across an article in the New York Times about a young man, Jason, with Down syndrome. The writer described Jason’s mom, Emily Kingsley. She had insisted on keeping her son home, back in 1974. According to the article, he flourished. He started reading when he was four. He made friends. He appeared on Sesame Street, where his mom was a writer, and on other television shows through the years. But then, around six or eight, the other kids passed him. For all his promise and potential, at a certain point his brain couldn’t get him “there,” wherever that hypothetical point might be.

  And I went to sleep wondering if my recent amazement at Penny’s ability to learn was ill-founded. If I was just setting myself, and her, up for dashed dreams. If I had just climbed back into a shell of valuing the wrong things and measuring human worth by achievement. The article worried me.

  But in the morning I started to consider how I might have been duped. The article upset me because I thought I understood what this mother was thinking. But then I noticed a few other things. First, the writer didn’t use “person first” language to describe Jason, but rather called him a “Down syndrome child.” And the writer commented that the 1970s marked the divide between “the dark years . . . and modern times.” I thought, Really? It wasn’t so clear to me that modern times were an age of enlightenment when it came to people with disabilities. Sure, we didn’t institutionalize them anymore, but the vast majority of women with a prenatal diagnosis of Down syndrome chose abortion. Out of the darkness, indeed.

  I thought about this mother—her son had appeared on TV and had written a book and now lived and worked independently and seemed to be a very nice man—and I realized there was no way he had disappointed her. The writer of the article might think she ought to feel disappointed, but a reporter might look in on us and see a little girl who was eighteen months old but couldn’t walk on her own—and might think we felt disappointed. When all we felt was immense pride.

  When I looked at Penny, I saw our daughter—with her big eyes, now sea green in the center surrounded by a thick band of dark blue, with her dad’s long eyelashes and her heart-shaped lips. I saw our daughter—who rested her head on my chest and gave me a kiss, who worked hard every day, who had so much to offer. And when I laid her in her crib that night, I prayed that I might remember that her value was intrinsic to her, bestowed already by her Creator, not by a writer for the New York Times or by a therapist or a doctor or even by me.

  I finally came across the terms I had been looking for when I read an article about the No Child Left Behind legislation. In the article, President Bush was quoted as wanting to usurp the “soft bigotry of low expectations.” The soft bigotry of low expectations. That was it. I didn’t want to have unreasonable goals for Penny’s future, but I also didn’t want false assumptions based upon the past to constrain her. I thought back to classes I had taken in college. I had been an African-American Studies minor, and it had fascinated me to try to imagine what it was like to be black in America. I remembered writing a personal essay for a class in which I berated myself for not speaking up one night in the dining hall. A boy at the table, an attractive, lacrosse-playing white boy, had been joking about the idea of dating a black woman, and I had sat silent, absorbing the giggles of my peers. My professor had written back to me and said, “Don’t beat yourself up. It wouldn’t have changed anything. You have to choose your battles.”

  I hadn’t understood. I had pictured myself walking out of the dining hall or making a witty comment or at least sending him a look of scorn. But my professor seemed to think it hardly deserved a second thought. Maybe my confusion arose because I didn’t have any real battles to fight. My only experience of racism was external. In this case, I had witnessed a privileged white boy make a joke about black women. On another occasion, I heard a pair of white women talk about how “the blacks” were only suited for jobs in the service industry—nursing, nannying, housekeeping. The comments bothered me, but I hadn’t ever been hurt in a personal way by ignorant remarks. Now, unintentional insults or even benign misunderstandings came my way almost every day. In the public eye—when Time, as a joke, coined a new phrase, “celebutard,” short for “celebrity retard.” Or when preschools never returned my phone calls after I mentioned that our daughter had Down syndrome. Or just the general comments about “Down’s kids,” as if Penny wasn’t visible as an individual, only as a part of a separate category of human being. It was then that I started to understand what my teacher had meant. I had to let some of it roll off.

  As a Christian, I knew I was supposed to go further. I should forgive the people who offended me. I should even love them. But I couldn’t. I chose to ignore the hurtful remarks as much as I could and instead hold on to the stories, the everyday interactions with our daughter. I wanted to tell the woman from Mom’s book club about Penny at breakfast one morning, when I said, “If you put that food in your hair, you can’t have any toast.” She had looked at me for a long moment, rather sternly, as if calculating how seriously she needed to take my words. And then it dawned on her. She took a handful of food out of her mouth and smeared it from forehead to chin, without touching a hair. I gave her the toast.

  I wanted the New York Times reporter to hear the story of a night when Penny had insisted on going to the potty. Her dad took her in. Recently, she had loved the potty because she got to read a National Wildlife Federation magazine with an article about coyotes. Lying in bed, I had to giggle when I heard her, loud and clear: “Ow-oo! Ow-oo!” Our midnight coyote.

  I tried to remember that Penny’s presence in my life had changed me, but most people didn’t have the chance to spend their time with a little girl with Down syndrome. Most people didn’t understand her signs. Most people didn’t experience the thrill of hearing her make new sounds. I wasn’t ready to forgive, but fighting or taking offense wouldn’t get me very far. The best thing I could do was shrug my shoulders at the ignorant comments and trust that the story of our family would speak for itself, that Penny would speak for herself, even if those words came through her hands.

  19

  Dear Penny,

  You are now twenty months old, and I cannot tell you how proud I am of you, and I could never express how much I love you. Just today, you stood by yourself for five seconds—I know you’ll be walking soon. And earlier this week, you used your words and your signs to tell me about our family: Mama, Dada, Penny, and George. You went swimming, and you smeared lasagna all over your face and in your hair, and you told me about dogs and flowers and boats, and you used your signs to say I love you.

  When you were first born, I was worried. I didn’t know much about Down syndrome, and I was afraid. I’m not worried anymore. I am proud of you—our smart, funny, beautiful, delightful daughter. Thank you for being in our lives.

  Love,

  your Baba

  September 2007

  Back when Penny was five months old, she had been “dedicated” at church as a way to welcome her into the congregation. Dedications happened once a month or so, and every time, Pastor Mike selected a particular Bible verse to give to the child. For Penny, he chose the opening verses of Psalm 1:

  Blessed is the man who does not walk in the counsel of the wicked

  or stand in the way of sinners or sit in the seat of mockers.

  But his delight is in the law of the Lord, and he meditates on his law day and night.

  He is like a tree planted by streams of water, which yields its fruit in season and whose leaf does not wither.

  When Pastor Mike had offered that verse, I smiled. It was an echo of the gift Virginia had sent before Penny was born, a picture of a young girl with a quote from this same psalm. From early on, I had taken those words as a statement of faith. I had been learning to trust that Penny’s life would be one that flourished in its season, that God intended for Penny’s life to be a fruitful one.

  For me, the orchid that had arrived shortly after Penny’s birth embodied this Bible
passage, this promise. Despite my fledgling green thumb, the orchid bloomed. And bloomed. And bloomed. In fact, it was in continuous bloom for eighteen months. Over time, the orchid had become a symbol of Penny’s existence, a visual reminder that she had flourished. She, like the orchid, was extraordinary, inexplicable, a gift. When Penny was eighteen months old, we left for the summer to spend two months at my parents’ beach cottage, and the orchid held twenty-five blossoms with another bud on its way.

  But in August, I got a call from the person tending the orchid. He hadn’t understood my instructions, and all the petals had fallen to the ground. My throat and chest constricted, as if he had called to relate a tragedy. After I hung up the phone, I walked outside to try to talk some sense into myself. I understood that I was mourning the loss of a plant, but I had an emotional connection to it. This was our Penny orchid. This was the orchid that would be in bloom forever, just like our daughter.

  We sat outside as a family that evening. The table was set with one of my favorite summer meals—squash casserole and grilled pork, fresh local tomatoes drizzled with balsamic vinegar. My parents and my three sisters filled the seats at the table. The sun was setting over the marsh. It was cool enough to pull a sweater around my shoulders. It should have been an idyllic evening, but I found my mind drifting toward regret. I was afraid that the orchid was a harbinger of things to come.

  I tried to join the dinner conversation, but I couldn’t find a place to jump in. Kate leaned over at one point and asked, “Are you okay?”

  I nodded, aware that the focus of attention had shifted to me. “I know it’s silly. I’m just upset about Penny’s orchid. I don’t know if I’m feeling superstitious or negligent or what. At the very least I feel like a bad mother because I let the stupid plant die.”

  No one seemed to know what to say about the orchid, but the conversation turned to Penny. First, Elly giggled. “My favorite thing Penny’s doing these days is signing aunt. She looks like a little prize fighter.” Elly mimicked the sign—the letter A, a closed fist, shaken near the jawbone.

  Mom said, “You all don’t even know how much she asks for you when you’re away. She takes the phone from the receiver and signs, Aunt, phone, please, over and over until I distract her or call one of you.”

  I felt a smile coming on in spite of myself.

  Brooks said, “But the best is when she blows her nose. How does she make so much noise come out of that tiny body? It’s hysterical.”

  I thought about the moment in early June when Penny grasped her nose and looked at me knowingly and made a loud noise. It had taken a few times for me to understand that she was blowing. Loudly. Obtrusively. Just like her dad did when he had a cold. She had learned that the noise got an enthusiastic reaction from her aunts, so it had become a staple of their interactions.

  As my sisters talked, the images poured through my consciousness. Penny swimming with her dad. Sitting in her stroller and waving to every passerby as if she had been hired to greet them. Chiming in at the end of a song. And as I thought about Penny—delightful, charming, smart, wonderful Penny—I realized that I didn’t need that orchid any longer. For almost two years it had stood as a symbol of my hopes for our daughter. It had even stood as a source of metaphorical protection against all my fears of what might be. But I didn’t need a symbol anymore. Penny was flourishing, with or without an orchid to prove it.

  ———

  We were headed back to Lawrenceville that fall, and I had enrolled Penny in preschool for the first time, two mornings a week. She would also move from the nursery into an official Sunday school classroom at church. I wanted everyone—Penny’s teachers, the other students in her classes, and the parents of the other students—to be able to see her for who she was. I sometimes felt as though Penny’s life were a document with all sorts of fascinating words written across the page and also with a big red stamp that read, “Down syndrome.” I had started to ignore the stamp and read the other words. But I was worried other people wouldn’t be able to do the same.

  So I got to work. I had Peter handle the camera as he videotaped Penny sitting on my lap, demonstrating dozens of signs. When I went back to watch the recording, I realized that her signs for cat, sleep, phone, and home were virtually indistinguishable. All of them originated on the side of the face. It was rare that I failed to understand her, but to an outsider watching the video, it looked dubious. I tried to remind myself that this was the school that had called me back, that theirs was the director who said, “We’ve had children with special needs before. I don’t think it will pose a problem. It will be good for everyone to have Penny with us.”

  Peter pushed the stroller as we walked Penny to her first day of school on a sunny morning at the end of August. She wore a dress her Nana had made for her Aunt Kate decades earlier—white fabric with an embroidered bunny rabbit. Her hair had glints of blond from the summer sun, and her eyes sparkled at the sight of five other children surrounded by books, dolls, and toys. The teachers invited us to stay so Penny would feel comfortable in her new setting.

  I used the time to assess the other kids. Penny was the oldest in the class by five months, and the smallest by a few inches. There were two other children who weren’t yet walking. By that point, Penny had become a proficient scooter, using her heels to propel her body wherever she wanted to end up. As soon as we entered the classroom, she scooted over to the basket filled with dolls and spent a good twenty minutes lining them up on the floor and then putting a blanket over them, hugging and kissing and occasionally mauling them. In the midst of watching the children clamber around the room, one of Penny’s teachers said, “It’s nice that none of them are talking yet. They’re all on the same level.”

  Only a few minutes earlier, I had explained that Penny used sign language to communicate, and I had handed over my video. I was already feeling self-conscious. I told myself, You’re turning into that mother, that ridiculous, takes-everything-too-seriously, over-involved mother. But I couldn’t resist. I said, “Penny is talking, actually. She’s just talking with her hands.”

  Miss Carol nodded. “Of course.”

  About half an hour later, Penny scooted close to me. She said, “Baba,” and then she signed, Home.

  Our introduction to the toddler class at church had started months earlier. When we were away over the summer, the director of Children’s Ministries had emailed me: “Anne Kass has volunteered to serve as Penny’s Buddy in Sunday school this year.”

  After I received the message, I closed my eyes and took a deep breath. I knew the good intentions. She wanted to ensure that Penny didn’t take up a disproportionate amount of the teacher’s time, and she wanted to keep Penny safe in the midst of bigger children who might knock her over. But I hated the thought of Penny being singled out presumptively. I hated the image of her in the corner with an adult, while all the other kids played with each other. I worked it out in my mind. If Penny had a Buddy now, she would always have a Buddy. She would always be the kid who needed special attention. She would always be set apart. So I wrote back, “Thanks so much for the offer of a Buddy for Penny. I don’t think it’s necessary at this point. Perhaps we could see how things go for a few weeks and then reassess.”

  When I picked Penny up at the end of her first class, the head teacher said, “Penny paid attention just like all the other kids!”

  I held back the sarcastic thought that wanted to spill forth. No way! At home, she just sits in the corner and drools. Instead, I said, “I’m so glad. I think you’ll find that as long as someone can help her in and out of her chair, she’s pretty much like the other children.”

  I tried to remember that none of the teachers had training with kids with special needs. They were volunteering their time. They had no obligation to become familiar with sign language or therapy plans. And they were a part of a routine that only happened once a week. They were doing their best to serve my child.

  And then there were the doctors. That fall, I to
ok Penny through the rounds of specialists: the developmental pediatrician, the ENT, the eye doctor. Six months earlier, the ophthalmologist had diagnosed Penny as farsighted. But, she said, there was no need to think about glasses for a few more years. “She’ll just make you mad by taking them off all the time.” Over the summer, I had been talking to a friend with a typically developing son about the same age as Penny. It turned out that he had the same degree of visual impairment as Penny, and his doctor had insisted on glasses right away. Maybe it was just a difference in physicians, but I couldn’t help thinking that when our doctor had seen a kid with Down syndrome, she had decided to try to make my life easier by waiting to prescribe the glasses.

  Everywhere we turned, I found people with marvelous intentions and misplaced compassion. As the heat of summer waned and the leaves began to show streaks of yellow and red, I found myself longing for the protection of the summer, the safe place of my family’s cottage, far away from schools and churches and doctors and all those people who didn’t understand.

  ———

  Even with close friends it could be difficult. Virginia came to visit in October, along with her three-month-old daughter, Kristin. On the night they arrived, Penny was ready for a bath, so after a quick hello, Virginia joined me in the bathroom. Penny sat in the tub, splashing merrily, and Virginia interrupted her own sentence to say, “Hey, actually, can I throw Kristin in there, too?”

  “Sure,” I said. “Go for it.”

  “I mean, Penny won’t freak out or anything, will she?”

  “I don’t think so.” I looked at Penny with her perennial smile. “Penny, sweetie,” I said, “when baby Kristin gets in the bath with you, you need to be very gentle.”

  Penny stopped splashing as soon as Kristin lay next to her and she signed baby, bath. It didn’t take long to finish the bath and get them ready for bed, and within an hour both were fast asleep. Virginia and I retreated to the living room.