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

by Amy Julia Becker

  I turned on NPR as I drove home, and the story was about a new ethics recommendation from the American College of Obstetricians and Gynecologists (ACOG). It stated that doctors unwilling to provide abortions had an obligation to refer their patients to another physician who would provide the procedure. In the words of the spokesperson on NPR, “If a physician has a personal belief that deviates from evidence-based standards of care . . . they have a duty to refer patients in a timely fashion if they do not feel comfortable providing a given service.” I thought about all the women who were offered prenatal tests to screen for Down syndrome. And I had to wonder how much those tests really offered care for those women, for those babies. I knew that new medical guidelines—evidence-based standards of care—suggested that all pregnant women, regardless of age, be screened for trisomy 21. And I knew that studies showed that women who received a prenatal diagnosis of trisomy 21 terminated their pregnancies the vast majority of the time. Evidence-based standards of care resulted, more often than not, in the elimination of people like Penny from our society.

  I felt the anger surge. The report came across as so factual, so neutral. But I knew from talking to my friends who had children with Down syndrome that the information about that extra chromosome was rarely delivered in a neutral manner. I thought back to Samantha and the phone call she had received when she was eleven weeks pregnant. “We can schedule the procedure for tomorrow so that the termination happens within the first trimester.” Or Catherine, whose amniocentesis had shown trisomy 21, but had also shown the absence of the first chromosome. “Your baby’s chromosomal makeup is incompatible with life,” she was told. And now I knew Elizabeth and Margaret—both three years old. Running. Signing. Making faces in the mirror. Giggling.

  It struck me that I hadn’t done my own research about the ultrascreen. When I got home, I looked it up online. As a test, it was 90 percent effective in identifying Down syndrome. It was 50 percent effective in identifying heart defects. I shook my head. My relief had been false. The ultrascreen was a way to make Dr. Mayer feel more confident about the baby’s chromosomes. It hadn’t been what I wanted at all.

  My mind wandered back to the NPR report. ACOG had pitted “personal beliefs” against evidence, as if a physician who was unwilling to perform an abortion had defied the evidence about how to care for this woman, this child. I knew abortion was complicated. I had friends who had terminated pregnancies when faced with the news of fatal heart defects and anencephaly. Their grief was real. Their decisions were made in an attempt to care for their whole families. And yet I had to believe that many women who chose to terminate a pregnancy with a prenatal diagnosis of Down syndrome did so based upon probabilities, fear, and misinformation.

  I thought back to the list of potential problems we had received in the hospital after Penny was born. Apparently, “evidence-based standards of care” didn’t include the fact that the life expectancy of people with Down syndrome had doubled in the past twenty-five years, or that the average IQ of a person with Down syndrome had doubled over the course of the twentieth century, or that many physical “defects” could be corrected relatively easily due to recent medical advances.

  “Evidence-based standards of care” included all the physical problems Penny could face, but not the joy she could bring or the abilities she might have. It didn’t include the stories I learned many months after she was born, stories about kids and adults with Down syndrome who played on varsity teams in high school, competed and won national art competitions, swam across Lake Tahoe. Or the simpler stories of kindness and love, of people with Down syndrome just being one more member of one more family. “Evidence-based standards of care” didn’t include the reality that all of life is fragile and uncertain, with potential for heartbreak and potential for great delight.

  ———

  A few weeks later Penny was home sick from school, so I took her with me to my twenty-five-week prenatal visit. The receptionist, the nurses, the doctors always asked about Penny. I had shown them pictures and told them stories, but I hadn’t ever brought her with me. I was worried she might not be herself. What if she got shy and wouldn’t answer questions? What if memories of other doctors’ visits made her cry? But that day she couldn’t go to school, and I couldn’t reschedule, so we walked together into the waiting room.

  Penny climbed onto the chair next to me. With a half dozen expectant mothers watching, Penny said, “Read.” We paged through a few books, and she then climbed down and started walking around the room.

  Someone asked, “What’s your name?”

  “Penny,” she said, without missing a beat, pointing to her chest.

  In the next chair over, another woman said, “How old are you?”

  She put up one finger and said, “Two.”

  “Is your mommy having a baby?”

  “Yeah,” she said, “boy.”

  A nurse opened the door. “Becker?”

  Penny waved good-bye to her admirers and joined me in the back.

  Her presence didn’t change the pamphlet on the wall that listed trisomy 21 as an abnormality. But I had to imagine she might have changed one of those women’s impressions of what it was like to live with Down syndrome. I had to imagine they had a glimpse of our joy.

  21

  We’re starting to settle in to life as a family of four, I think. (Although I will confess that Peter and I looked at each other a few nights ago and said, “We’re capable adults. How on earth can this be so difficult?”) William is eating and sleeping pretty well. Penny is delighted to be a big sister. She offers him food, loves hugging and kissing him, holding him on her lap.

  On our first night home, Peter and I put Penny to bed. She folded her hands together and said, “Pray.”

  “Who do you want to pray for?” we asked.

  She nodded. “Wuwum.”

  And so we prayed for William, and gave thanks to God for both our children.

  August 2008

  One day I found Penny in our front hallway. She was sitting cross-legged with my black pocket Bible in her lap, flipping through the pages.

  “Do you know what this book is?” I asked her.

  She shook her head.

  “It’s a book about God and Jesus,” I said.

  “Oh,” she replied, wide-eyed.

  “Sweetie, we have a Bible just for you in your room. Would you like to see it?”

  Together we padded down the hallway, hand in hand. I took a picture book with stories about Jesus from her shelf. We looped her glasses over her ears and she nestled into my lap. I could feel the baby kicking. We started with the story of Zacchaeus, the little man who wanted to see Jesus.

  “See Jesus!” Penny agreed, bouncing up and down. She pointed to the Jesus figure in the story, and I realized that the book never showed His face. All afternoon she repeated, “See Jesus!” until I finally found an image of a man with a flowing robe and shaggy beard. “Jesus probably kind of looked like this,” I said.

  That night, “Read . . . read . . . Bible,” Penny requested. This time we read the story of the little children and Jesus. The disciples tried to turn the children away, but Jesus rebuked them and summoned the children to himself in order to bless them.

  At the end I said, “Jesus loves Penny.”

  She beamed.

  “And sweetie, you can talk to Jesus, just like the children in the story.”

  She nodded, put her hands together, and said, “Pway.”

  We started reading the Jesus stories daily. She often sat in her room and flipped through the pages on her own. She began reminding me to “pway” before meals and at bedtime. I wasn’t sure where the interest came from. Maybe there was more going on in Sunday school than I knew. I was pretty sure her spiritual acuity didn’t come from Peter or me. We didn’t have family devotions. We didn’t listen to Christian radio. Until Penny initiated, I hadn’t even been trying to tell her about Jesus. She just seemed to like Him all on her own.

  One ni
ght at dinner I said to Peter, “How will I ever love another child as much as I love Penny? This is not a rhetorical question. I can’t imagine feeling about anyone else the way I feel about her.” I rested my hands on the top of my belly, wondering how much the little boy within was going to take me away from the little girl sleeping down the hall.

  “I don’t think that’s how love works,” Peter said. “It’s not as if you have a set amount of love for Penny and now you have to slice it in half and give some of it to the baby instead. The nature of love is to expand.” He reached across the table and placed his hand on mine. “I’ve had less time with you since Penny was born, and it was a rough transition at first. But it wasn’t because I lost your love. It was because your love was expanding to include this other person. And so I went from just knowing you as a wife to knowing you as a mother. Penny is going to go from being a daughter to also being a sister. You’ll have more love for her than you ever had before. And you’ll love her little brother just as much. I’m sure of it.”

  As my pregnancy progressed, Peter’s words grew within me. I would love this baby, this kicking, wriggling, growing baby boy, just as much as his sister. I might even love them both more than I loved Penny now, hard as it was to imagine.

  ———

  Once again, at the end of the school year, we headed north to my parents’ house in Connecticut. I was moving slowly by then, with eight more weeks until I was due. The days at the shore took on a nostalgic quality. I couldn’t lift Penny easily. She no longer fit in my lap. I spent more time than usual watching her interact with the rest of the family. She sat for hours in a plastic wading pool, pouring cups of water and watching the droplets trickle down her arms. Occasionally she emerged to lie next to one of her sunbathing aunts. I would find her outside, on her back, hands behind her head, eyes closed, legs crossed. A little goddess. Every so often, she looked up at me and said, “Happy!”

  She started singing songs about the people closest to her: “Nana, Nana, Nananana . . . Baby, Bay Bay Baby! . . . Dadadada Dada.” She tottered close to me and kissed my belly and declared, “Didah!” her word for “sister.” In the mornings she would wake up and read books on her own, glasses perched on the end of her nose, as if she were a stern librarian. She was growing up. I started to envision her not just as my little girl, but as our son’s big sister.

  One night in early August, I came back from dinner at my grandparents’ house down the road. It took one contraction for me to know it was time. The pain was deep and prolonged. It took my breath away. Five minutes later, it came again. “We need to call the hospital now,” I said. Peter packed our bags while I gave Mom instructions for Penny.

  The contractions continued apace, forcing me to brace myself, hands pressed against a wall every five minutes. Labor with Penny had been slow and, for many hours, easy. This was different. I knew the pain would only increase, and I had a sense that this baby would come soon. But before we headed to the hospital, I stood in the doorway of Penny’s bedroom. There were tears in my eyes—anticipation of the good things to come, but also the sadness of seeing this chapter of our life close. I stood at the side of her crib, watching her body move up and down in a gentle rhythm. I loved the idea of our family expanding. I loved Peter’s point that love would only grow. And yet I would miss the singularity of my relationship with Penny. Bringing another baby into this world was a part of letting her go. Another contraction came. I clutched the bar of the crib, and when the pain passed, I placed my hand on her forehead and then tiptoed out of the room.

  Every contraction gripped my midsection as if to strangle the baby out of my body. I tried to breathe deeply, tried to remember to pray. “Pull over,” I said just before we entered the highway. I stumbled out of the car, placed my hands on my knees, and vomited.

  We entered the emergency room of Yale New Haven hospital around midnight. “I want an epidural,” I panted. It took two hours. Peter coached me through the pain the best he could.

  “I hate it hate it hate it,” I moaned. The contractions were back to back, lasting for two minutes with one minute in between.

  The midwife looked at the monitor and said, “This is one dramatic baby.”

  The epidural numbed the pain enough to doze for an hour. And then, in the very early morning, it was time to push. I remembered Dr. Mayer exhorting me with Penny, but this was a new midwife and a new doctor, and once again I couldn’t seem to figure it out. After two hours, the obstetrician decided it was time to intervene. “We’ll have to use the vacuum,” he said. “These contractions aren’t good for either of you.”

  And a few moments later, there he was, our son, crying a hearty cry. I raised my head from the pillow just to look at him. “Ten out of ten on his Apgar,” the nurse said.

  I was too weak to hold him on my own, and soon my body began to shake. It took another few hours before I could sit up, but finally I held him in my arms. “Hello, William,” I said. “It is very nice to meet you.” His face looked puffy, just like Penny’s had after she was born. His eyes flickered open long enough for me to see that they were slate gray. He didn’t have as much hair as his sister had at birth, but it was dark like hers had been. I stroked the side of his cheek as he nuzzled against my shoulder.

  By then, Peter had called our parents and siblings and friends. It was a gorgeous day with wisps of white in the sky and sunshine filling the room. We had a view of the water in the distance. After William returned to the nursery, I called Mom. “How’s Penny?” I asked.

  “She’s taking a nap right now,” Mom said. “It was the cutest thing. I told her this morning that her baby brother had been born, but I didn’t say anything else. She said, ‘Wuwum!’ How did she know his name?”

  I shook my head, even though Mom couldn’t see me. “We’ve had his name for a few months now, and we only told Penny. But she wouldn’t even try to say it out loud. I thought maybe she didn’t understand. I can’t wait to hear her say it.”

  “Before she went to sleep this afternoon, she said, ‘Mama, Dada, Wuwum.’ She definitely understands. I could hear her on the monitor even after I left the room, just repeating your names. I think we’ll come visit tomorrow morning, if that’s okay.”

  I didn’t want to wait that long, but I knew it made sense. The hospital was thirty minutes away, and I still needed some time to recover from the night before. “Tell Penny we miss her,” I said.

  When I hung up the phone, Peter was holding William, standing by the picture window that gave us a view of the city. He was named for Mom’s father, my grandfather. A few weeks after we found out he was a boy, we had compiled a list of family names, and at first I had wanted one that would be unusual. But as we talked, I realized that what mattered most to me in a name was the character of the person it came from. It mattered to me that we had named Penny for her grandmother. Already I saw signs of Grand Penny—precocious, sharp, caring, beautiful—within our daughter. Similarly, I wanted our son’s name to come from someone I admired. Someone I would love for him to be like when he grew up.

  And so we named him for my grandfather, a man with a gentle spirit and a quiet faith. A man who laughed out loud on a regular basis and who said, “Hello, beautiful!” or “Hello, my friend!” whenever he saw me. A man who played the harmonica to his great-granddaughter.

  William started to fuss, and his noises shook me out of my reverie. I took him in my arms to nurse. It struck me then that there were no tears to shed, no difficult phone calls to make. I felt love for William, but it was mellow and easy, distinct from the ferocious and complicated love I had experienced upon Penny’s arrival. My body hurt, but that was it. The pain was contained. It would soon heal. William closed his eyes, and I could feel his breath on the bare skin of my chest.

  “He has the same hairline as you do,” I said to Peter. And then I laid my head back on the pillow and fell asleep.

  ———

  As promised, Mom brought Penny to visit the next morning. William was
nestled into my shoulder, his legs tucked under his body, as if he missed the tight space of my womb. Penny and Mom stood in the doorway. Penny wore a pink dress with a white cardigan and Teva sandals on her feet.

  Peter walked over and squatted down to greet her. “Hi, love,” he said. Her eyes were big, taking in the room’s equipment and machines.

  She stared at the blood pressure cuff. “Squeeze?” she asked, squeezing her own arm.

  Peter shook his head. “No, sweetie. No squeeze. You’re just here to visit Mama and meet your little brother. But can I have a hug first?”

  She held out her arms and they embraced. Then he picked her up and carried her to the bed. William stayed asleep as Peter placed Penny next to me with the bed rail behind her.

  “Let’s take off those shoes,” he said, and together they pulled the straps loose.

  “Hi, Penny,” I said.

  “Mama,” she replied, and she blew me a kiss with a dramatic “mmm—aaa.”

  “Will you give your brother a kiss?”

  She blew another kiss in his direction.

  “What is his name?” I asked.

  “Wuwum!” she said, and then she placed both hands on one cheek, the sign for sleep.

  “That’s right, sweetie. William is asleep. He sleeps a lot.”

  She signed sleep again, and pointed to herself.

  “Oh,” I said. “You want to go to sleep?”

  She laid her head on my chest, looking at her brother, and giggled. I stroked her hair.

  Soon she was sitting up again, and she pulled her foot to her face.

  Peter laughed. “Penny, what are you doing?”

  She was scratching her nose with her big toe. We often marveled at how flexible she was—one of the perks of low muscle tone.

  “Penny,” Peter said, “I can honestly say that you can do lots of things that your brother will never be able to do.”