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

by Amy Julia Becker

  I pivoted so I could lean against him, feel the rhythm of his chest, his arms across my body, holding me together, keeping me safe. “Thank you,” I said.

  ———

  The following weekend, we packed the car for a few days with Peter’s college roommates. He had lived with ten other guys for his junior and senior years, and they still kept in touch and got together on an annual basis. Over time the reunion grew to include wives and children, and this year we were all convening in a rental house on the Maryland Shore.

  Our family arrived after dinner. Penny had fallen asleep in the car, so we whispered greetings to our friends and put her straight to bed. When we emerged, Peter joined his old roommates for a game of spades, and I accepted a cup of tea from Susannah and curled up in a chair near the other women.

  I had seen Susannah at Penny’s baptism two months earlier, but it had been nearly a year since the rest of us had been together. There were two new babies and another on the way. The conversation took a natural turn and one of the other wives asked me, “So, do ya’ll hope to have more kids?” It was an inevitable question, but I wasn’t prepared.

  “We do. How about you?”

  I didn’t really listen to her answer or to the reflections on pregnancy and childbirth from the other moms lounging nearby. I just kept thinking about Dr. Mayer’s concerns. My appointment to discuss the miscarriage had come earlier that week. Dr. Mayer wondered out loud whether every time Peter and I conceived we passed along a chromosomal abnormality. She wanted to perform tests on both of us. She had said to me, “You deserve a typical child.” I winced a little at the memory. I didn’t deserve the child I already had. And people who couldn’t conceive weren’t undeserving. I needed to be open to the possibility that I couldn’t get pregnant again, or that I would get pregnant with another child with Down syndrome, or that we needed to consider adoption, or that Penny would be an only child.

  And yet I wanted a brother or sister for Penny. And I wanted her for them. All I could do was hold out that hope, and wait.

  I looked around the room at all the other young mothers, feeling a seed of resentment take root inside me. I knew I wasn’t being fair—the year before, two of these same women had shared stories of miscarriages of their own. And another, who wasn’t present that night, had talked about her struggle with infertility. But I couldn’t wrench myself from the sense that mine was the precarious position, the lonely road. I feigned a yawn and headed to bed.

  ———

  In the morning, Penny and I let Peter sleep while we joined the other mothers and children in the kitchen. I plopped Penny onto the floor. Of the four other children, two were her age, and two were six months younger. I told myself not to make comparisons, but as I watched Ellen Grace, just a few days older than Penny, run from one side of the room to the other, I couldn’t contain the feeling of being on an elevator that had lost its connection. I was plummeting down, and there was no way to stop the descent.

  Earlier that week, we had sat with Penny’s social worker and Missy, her therapist, to revise her Individualized Family Service Plan, her “IFSP.” Penny had reached her first birthday, so it was time for another evaluation. Missy concluded that Penny’s gross motor skills were at a seven-month level. She scored Penny’s cognitive, communication, and social/emotional skills at ten months, her fine motor at eleven, self-help at fourteen. Missy was specifically trained as a physical therapist, and she would continue to work with Penny once a week. But now she recommended other specialists—speech therapy twice a month, occupational therapy twice a month, possibly a special educator within the next year. I tried to take it all as an encouragement. There was a state-funded system that supported our daughter’s development. I was able to learn from these professionals in our own home with one-on-one instruction. But all my positive thoughts faded in the wake of one-year-olds toddling around the room while Penny sat still, unable even to move herself into a standing position.

  I turned my attention to the younger ones. I noticed the strength in their bodies, as if their muscles knew how to hold them upright intuitively, whereas Penny’s had to be taught what to do to navigate the world. But when I waved to little Simon, he didn’t acknowledge me. Penny, on the other hand, responded to my gesture with a wave, a clap, hands up over her head, and then waving again with two hands at once.

  She brought a smile to my face, but I couldn’t stop evaluating. All day I calculated how long it would be until Penny could climb on the couch like the other kids, how long it would be before the younger ones surpassed her.

  I went to bed that night with a sense of defeat. I had never spent a day with other kids who were so close to Penny in age, and I had never succumbed so fully to the temptation to compare. I thought back to an email that had been forwarded to me a few days earlier. It contrasted “spectrum moms” (moms with children on the autism spectrum) and “soccer moms.” It talked about all the noble things we moms of kids with disabilities did: driving to multiple therapists and negotiating school options and figuring out food and exercise and learning for our kids. It was a nice reminder that I wasn’t alone, that there were plenty of other parents working out the same issues on behalf of their children. It even reminded me that plenty of parents and children face far more difficult challenges than I did every day. I was uneasy, though, with the tone, a tone I knew I took on when comparing myself with my friends—that same tone of proud self-pity that had hovered over me all day. When I read that email, it made me think how grateful I was that Early Intervention and the Americans with Disabilities Act and Individualized Family Service Plans existed. How thankful I was that Penny could come with us this weekend, that kids with extra chromosomes weren’t institutionalized automatically anymore. How thankful I was that Penny would be able to contribute in a meaningful way to our community. And how much I needed to remember that everyone had more going on—more stress, more pain, more fear—than they ever admitted.

  As I lay in bed, I realized that the question I had been asking all day long was, “What can she do?” When I asked it of Penny in comparison to the other kids, she came up short every time. But I finally thought to ask, “Who is she?” and I started to remember all the traits that were unique to her—the slobbery kisses, the eyes that followed me around a room, the laughter and sweetness. And when I asked that question of the other kids, I didn’t come up with answers based upon how they might perform on a test, but answers based upon their personalities. I thought about Ellen Grace wanting to hold her dad’s hand whenever he was in the room, or the way Simon reached out his arms for his mother, the way Josie carried her blue teddy bear wherever she went. There was no need to compare the answers to “Who are you?” It was just a way to find the good, the particular, about anyone. And it made me realize that our daughter’s character measured up to everyone else’s. She couldn’t walk or run. Ten years from now she might not be able to do multiplication tables at the same rate as the other children her age. She might not be reading the same books. But if I thought about her in terms of her character, and not some set of competencies, then I could embrace her alongside her peers.

  We took a photograph of all five kids on the sofa the next morning. The parents swarmed the room with cameras and exaggerated happiness. One by one, each of our children began to cry until all five of them were in the arms of a mother or father. They weren’t that different after all.

  17

  My favorite things Penny is doing these days include “blow,” where she puffs out air and causes her bangs to fly up; “bath,” where she rubs her belly with both hands, grinning and twisting side to side; and “Down came the rain and washed the spider out,” where she waits, hands above her head, and lets them fall and then shimmies her shoulders and demonstrates “washed out.”

  Her communication ability surprises me every day. I started to teach her the sign for “car” a few days ago, but hadn’t tried again since. This morning I said, “Penny, we’re going in the car,” and she respon
ded with the sign. Every day she learns more and more.

  April 2007

  In early February, Penny awoke in the middle of the night. She was coughing, and it sounded painful, like a dog barking. Peter and I both hurried into her room. We rubbed her back until she fell asleep again. The next morning, there were traces of that raspy sound, but she was cheerful. I made a doctor’s appointment just to be safe.

  Dr. Bill was more concerned than I expected. He prescribed an antibiotic, Tylenol, and decongestant around the clock. That afternoon, her head felt feverish. She refused to eat lunch, and the barking cough returned. I rocked her to sleep.

  An hour later, Peter stopped into the apartment between classes and his squash practice. He found me at my computer and said, “Age, I was listening to Penny while I changed my clothes. She doesn’t sound good.”

  She was awake, coughing. Her eyes looked glassy.

  “Let’s take her temperature,” I said.

  We laid her on her back. She coughed again, but this time she started to choke. The color drained out of her face, from pink to white to blue.

  Somehow we found ourselves driving to the emergency room—me clutching Penny to my chest as Peter ran red lights and exceeded the speed limit and passed cars on a double yellow line. Penny was limp and pale and we could barely keep her awake, even with the windows down and cold air pumping. As she slumped over my shoulder, I focused my attention on her hands. I kept saying, “How big is Penny?” in the most cheerful voice I could muster, and I watched for a flicker of movement. She didn’t have the strength for her usual response—both arms up with a big smile—but I saw her fingers move every time I said it. Then her eyes would close and her body would go limp again, and I tried to ignore the panicked voice in my head. I told myself, “She’s just tired. Her nap was interrupted. She’s going to be fine.”

  Throughout the car ride, I pushed away thoughts that she might not make it. It was as if I had a ticket to cash in with God. You can’t let anything happen to her. Not now. You promised. The Lord protects the simple-hearted.

  What should have been a twelve-minute ride to the emergency room took seven. Holding Penny close, I ran through the sliding doors. “My daughter needs a doctor right now!”

  The woman behind the desk looked up. “What’s the problem?”

  “I don’t know. We were changing her diaper and she started coughing and turned blue.” I looked at Penny. She still lay against my shoulder, but her eyes were open now, scanning the room.

  “Okay. I’ll get you to a nurse as soon as possible.”

  “No,” I said. I felt my face harden. “I need to see a doctor right now.”

  A nurse approached us. “I’ll take you in here, honey. It’s going to be fine.”

  I could hear Penny’s labored breathing. Her heart pounded through the blanket, but her eyes were open and focused. We sat down. The nurse took Penny’s temperature—103—and Penny offered me a wan smile.

  “In the car, she couldn’t lift her head,” I said. “She seems a little better now.”

  “Sweetie,” the nurse said. “I know this is scary. But your daughter is going to be fine. I’m going to take you to a bed right now.”

  Peter had parked the car, and he walked in just as we headed back to our section of the ER, a small bay with a chair and a stretcher.

  After a flurry of initial tests, Penny slept on my chest, naked except for a diaper and a pink blanket pulled over her back. Her hair was matted with sweat, a blood oxygen monitor hugged her big toe, and three cotton balls with tape on them marked the places they had drawn blood. But her body was calm. I could feel the soft whisper of her breath on my neck. Sitting in the dim light, with the beeps and general commotion of the ER outside the curtain, I wasn’t thinking about anything. All I wanted was this moment, this peaceful security. I was totally content with nothing to do other than hold my baby girl and feel her sleeping safely in my arms.

  Within a few hours, her fever had gone down to 100. Her cheeks were rosy, and she was sitting up in bed, waving to the hospital personnel. Chest X rays revealed bronchitis, and her white blood count was slightly higher than normal, but not high enough to pose grave concern. The doctor assumed she had choked on a large wad of phlegm that had begun to dislodge itself by the time we reached the hospital. They discharged us five hours after we arrived, with instructions to check on her every hour throughout the night.

  One of the nurses brought Penny a gift when we were in the hospital—a soft white dog with the words “Jesus me ama” written in pink on its bib. Penny beamed whenever we wound it up and listened to the song. And as it played that simple tune, with words that hearkened back to the faith of a child, I could only nod my head.

  Yes, Penny. Jesus loves you. As do we. Very, very much.

  ———

  Penny recovered from her bout with bronchitis, but I started to linger in her room in the evenings just before I went to bed. I watched her asleep in her crib—on her side, one leg crossed over the other, tangled up in her blanket, breathing peacefully. And I wondered whether it would ever be possible for me to love another child the way I loved her, to experience joy and pride and sorrow and fear for anyone else to the same degree I did for her. I looked at her sleeping there and thought, You are perfect. Perfect.

  And yet every night I was also thinking about a very real imperfection in her body, that little opening between her heart and her lungs. We were due for another hospital visit at the end of February, this one planned months in advance. For weeks, I thought about what was coming. I reviewed the questions I had asked the cardiologist, the assurances I had received that this outpatient procedure would be easy and painless. Penny would check in to the Children’s Hospital of Philadelphia for the day. A surgeon would insert a catheter and a camera through her groin in order to repair the hole. If all went well, we would bring her home that night.

  Fifty percent of children with Down syndrome were born with heart defects. Oddly enough, I hadn’t ever considered Penny to be in that category. To me, “congenital heart defect” implied emergency open-heart surgery. Bandages. Wounds. Long hospital spells. Not an outpatient procedure. Not the doctor’s words, “She’ll be fine the next day. No pain. No discomfort.” Her heart problems were minor compared to some other kids with Down syndrome. I knew parents whose children had been in the hospital for weeks after a much more significant reconstruction. And yet once I realized that Penny’s heart was one of the “defective” ones, it helped me understand how little a list of problems in a book could capture the reality of our particular experience, of her particular life.

  On the day of the procedure, Penny woke up and used a sign spontaneously for the first time. She looked me in the eye, then raised her hand to her mouth and patted her lips. Eat. We had been working on sign language for a few months. Dr. Post had recommended it, and I had been convinced by recent studies that showed that all children could understand the world before they could speak. Penny’s ability to form words would be even more delayed than a typical kid’s, so we figured signing would help us bridge the gap. We picked five signs with practical application—eat, drink, more, get down, and all done—and we repeated them all day long. At every meal, before Penny ate anything, I showed her the sign for eat. And then I took her hand and moved her fingers to her mouth, all the while saying out loud, “eat.” Only after she had mimicked the sign would I give her food. But that morning was the first time she had used a sign without any prompting.

  “Oh sweetie, I’m so sorry. You aren’t allowed to eat today.”

  Her big blue eyes didn’t waver. Eat, she signed.

  Peter, who had been outside clearing the car of snow, walked into her room. She turned her head to him and signed, Eat.

  “I’m sorry, kiddo. Try to remember that one for tomorrow.”

  Peter scooped her into his arms.

  I had learned the details of the procedure the week before. Penny had a PDA, a patent ductus arteriosis, an open blood vessel betw
een her lungs and her heart. It put her at risk for pulmonary hypertension as a young adult. The hole existed for every newborn, so Penny’s initial echocardiogram hadn’t raised any concern. But for most children, the hole closed on its own within the first few days of life. Penny’s wasn’t getting any smaller. So they would insert a catheter with a camera into her heart to see how much blood was flowing through the hole. Then they would drop a metal coil into place, wait to make sure blood pooled on either side of the coil, indicating that the hole was closed, and release her. We would spend six hours in the recovery room and then go home. And that should be that.

  After our ride to the emergency room a few weeks earlier, Peter had told me, “I thought we were going to lose her.” But I had refused to worry, even with Penny limp in my arms. It was impossible for me to imagine a world without her.

  Penny lay on a table in a purple gown that swallowed her body. Technically, she wasn’t even big enough to qualify for the procedure. Fourteen months old. Sixteen pounds. Still wearing clothes designed for babies half her age. She screamed as the nurses took her vital signs, and I wondered how much she remembered about her hospital visit from a few weeks earlier. Peter and I each held one arm, and I kissed the tears that streamed down her cheeks as a technician inserted the IV. But as soon as the poking and prodding was done, Penny sat up. We sang her favorite songs and played until another nurse arrived to give her a sedative and put her to sleep.

  Two hours later, they were done. The hole was closed. But we had six hours to go in the recovery unit. I had thought we were waiting to ensure that Penny had recovered from the sedation, but her nurse gave us further instructions. “You need to keep her on her back with her legs straight and still,” she said, checking Penny’s monitors and giving her a sip of juice.