I nodded, casting a sidelong glance at Peter.
“And I think you should be really encouraged by all the things Penny’s doing.”
“We are,” Peter said. He leaned forward in his chair, spinning his wedding band on his ring finger.
Then, sounding apologetic, she said, “Penny is in the twelfth percentile compared to other children her age.”
“The twelfth? Compared to typical kids?” I thought back to our regular checkups at the pediatrician’s office, where Dr. Bill hesitated to show me Penny’s growth on the charts he used with everyone else. Even on the chart specific to kids with Down syndrome, she only measured in the tenth percentile. When it came to the regular charts, she didn’t register at all. So when this therapist told me, as if it were bad news, that Penny’s fine motor skills were delayed, I didn’t register her disappointment. “You mean Penny is on the chart? Wow.”
I looked at Peter straight on this time, noting the pleased expression on his face. His hands were quiet now.
She smiled. “Your daughter is doing great.”
There it was again, that flutter in my chest. It was as if I had given up on any thought that Penny might excel in some areas. I didn’t want my love for her to be linked to her achievements. I didn’t want to get caught up in comparisons. I didn’t want to set myself, or her, up for disappointment. But I did want to believe in her.
“She’s a lovely little girl,” the therapist said. She tore off a carbon copy of the scores and handed them to me.
From there, we wheeled Penny’s stroller across the hall to meet with a physical therapist.
“She’s been sitting up since seven months, but she hasn’t seemed very interested in doing anything else,” Peter told her.
“I have a son with Down syndrome,” the therapist replied. “They do things in their own time. I’ll just try to give you a sense of when that time might be for Penny.”
Peter and I described Penny’s progress. That she had started to roll and then stopped. That she hated tummy time. That she did have a physical therapist but she tired easily. Throughout our description, Penny sat. She craned her neck to take in her surroundings, never wavering from that firm spot on the floor. The therapist tried to motivate Penny to reach for a toy and topple onto the mat. Penny moved a few inches and then snapped back to attention. The therapist said, “You know, it may be another year before Penny is crawling.”
Gulp. Heart pounding. Eyes closed for a moment. She’s doing great.
“What’s the next thing she needs to learn?” Peter asked.
“Well, she needs to be willing to lose her balance,” the therapist said. “See.” She pulled Penny’s hands to the side, forcing one hip off the floor. “She’s so proud of herself for sitting up that she doesn’t want to risk leaning over. It’s not really that she can’t do it. Just that she won’t.”
I thought of myself in yoga class. Our teacher always talked about strength, flexibility, and balance. I had adequate strength. My body had never been particularly flexible. But balance. There I excelled. I could sway with my hands overhead in tree pose—one leg straight, the other propped on the inner thigh—for longer than anyone else in the class. Put me in dancer—one leg extended behind me and grasped with my hand. It might not look pretty, but I didn’t wobble. The same was true in my life. A change in plans, a spontaneous outing, a friend who popped in to say hi during Penny’s nap—even happy interruptions often made me grumble. But making sure I got enough sleep and worked when I said I would work and kept my daughter on a schedule and ate dinner at the same time every night—a healthy work/family/life balance came naturally. At least in the gross motor skills department, Penny was just like me.
“You know,” the therapist said a few minutes later, as she gently and repeatedly pushed Penny off her bottom and onto the floor. “I think this baby wants to move, and I think she may even be crawling within the next six months.”
I pulled my hand to my mouth, as if to hide the thought that was making me smile. Penny just needed to get comfortable with losing her balance.
Our last stop was with Dr. Post herself. We had waited months for this appointment, and I felt a strange sense of anticipation, as if Dr. Post were a celebrity deigning to offer me an autograph.
She was all business. She had a briefcase of plastic tools and a scoring system and a brusque clinical demeanor. But her eyes were kind, with crinkles that told me she laughed a lot, at least when she wasn’t in the office. A scribe took notes as we narrated Penny’s development to that point, and then Dr. Post turned to our daughter.
“Penny, what do you do when I say ‘up’?” Penny raised her hands. Dr. Post pulled out a mirror and watched Penny gaze at herself. She dropped a block and observed Penny’s eyes. She put the block in front of Penny. She put two blocks in front. She asked us questions, checking boxes and nodding.
“Well,” she said, leaning back in her rolling chair once she’d finished the assessment. “You may have heard that children with Down syndrome are at an increased risk for autism.”
Peter’s eyes grew wide. I nodded and recited what I remembered from reading statistics early on in Penny’s life: “Ten percent of kids with Down syndrome have autism.”
“She’s young, but I just want you to know that your daughter does not fall anywhere on the autism spectrum. Her communication skills are close to age-appropriate. But she’s not going to be able to talk for a while even though she wants to communicate. I highly recommend sign language until she’s ready to speak her words.”
“Okay,” I nodded, making a note of it. “Is there anything you’re concerned about?”
“Well, she’s lagging as far as gross motor, but that will come with time. She just needs to increase her strength. I’ll send you a full report with my recommendations, but all told, you really have nothing to worry about. You’re welcome to return for another visit next fall, but it won’t be necessary, as long as you’re able to get the proper supports in place.”
When we left, the flutter in my chest seemed permanent. I had thrown away my comparisons to baby books that told me what Penny ought to be able to do. I wasn’t about to go back. But now I was starting to discard the ideas I had of what she shouldn’t be able to do. It threw me off balance, this inability to plan for her future. But it was fun, too. A bit like toppling over and finding a big mat filled with toys right in front of me.
———
A week later, we boarded a plane for my family’s annual vacation. I had memories from years past of lying on the beach and reading novel after novel, laughing with my sisters, gathering for a cocktail to watch the sunset, cooking dinner together, and staying up late playing games or just talking.
I wondered if Penny’s presence would feel like a burden—nursing, naps, the constant mess of learning to eat solid food. But instead she brought laughter wherever she went. In the morning, banging pots and pans on the floor as Mom puttered about and Peter and I tried to get more sleep. Throughout the day, sitting in her high chair smearing food on the tray in front of her, with Aunt Elly’s cowboy hat drooped over her head. In the evening, leaning in for a kiss that covered her Uncle Frank’s cheek in drool.
That week Penny started to call me “Baba.” She started waving whenever a family member walked into view. She stuffed handfuls of sand into her mouth and crinkled her nose.
One afternoon I was sitting by the pool. Kate lay on her stomach on a lounge chair nearby. I stationed Penny in front of me and said, “Kate, look! She’s standing!” What I really meant was that she was bearing a little weight on her legs for the first time.
Kate rolled over and propped herself up to see Penny. She clapped as Penny’s knees buckled. A smile spread across Penny’s face. She was dressed in a hot pink suit with a ruffle and a flower, and she sat down with an emphatic thump, bouncing a few times on the mesh of the lounge chair.
“You know,” Kate said, “sometimes I think Penny’s life is more significant than any of the rest o
f ours.”
I could feel my forehead wrinkle. “What do you mean?” I thought about our family. Dad was a successful businessman. Mom taught preschool and had raised the four of us while Dad worked. Kate and her husband, Frank, both ran successful small businesses. Brooks had only recently graduated from college, but she had a job as an events planner and a steady boyfriend. Elly was getting good grades and was social chair of her sorority at UVa. All of them were considered nice people. Everyone had a significant life by any measure I’d ever used.
Kate pushed herself up from her chair. “Well, the fact that Penny has an extra chromosome makes her unusual. And I know some people see that as a negative, but I see it as a positive. It sets her apart. She’s so similar to us that we can understand her, but, I don’t know, it’s like even though she has to work harder, she has this amazing attitude. It just makes me think she has more to offer.”
I found myself nodding, even though I wasn’t totally sure I understood, or totally sure I agreed. “But you knew more about Down syndrome than I did when Penny was born, and you cried and cried and cried.” I had always wondered about Kate’s response to Penny’s birth. It had scared me—that my sister who treasured her friendship with her Best Buddy, Mandy, had nonetheless wept when her niece was born with the same condition.
“I wasn’t crying for Penny, I don’t think,” she said. “I was crying because I’ve seen how hard it can be—that people make fun of people with Down syndrome, or stare at a family walking into a restaurant. Or when I went back to work the day after she was born and saw all my kids in class and thought of Penny struggling to be friends with them or to do ballet . . . You’re right. I cried all day. But it wasn’t because of Penny. It was because of the rest of us.” She took off her sunglasses and ran her index finger under her eyes, giving me a quick smile. “Want to go for a swim, my love?” she asked her niece.
And soon they were in the pool, with Kate singing, “Puh-puh-puh Penny, beautiful Penny, you’re the only little girl that I adore . . .” as I pondered her words.
———
We went to a local hotel’s restaurant for Thanksgiving dinner. Being in such a public place made me remember all those comments that had come throughout my life, especially on vacation, about our “perfect family.” Here we were, strolling around a resort with a baby with Down syndrome. Most people didn’t seem to notice. There was a steel drum band playing, and Peter took Penny close so she could bounce and sway to the music. He held her in his arms and twirled around, her eyes wide with delight.
During a break, the band leader approached Peter and Penny. He squatted down so he could look Penny in the eye. After a long pause, he turned to Peter. “She’s beautiful,” he said. “She has an old soul.”
———
A few days later we returned to Lawrenceville. Eliza, one of the girls from Bible study, stopped by for a visit. Penny sat on the floor, clapping, bouncing, waving, and every so often doing her newest cute trick, which was to bring both hands to the sides of her face with a coy smile.
I shook my head at this little girl, with her sparkling eyes and round cheeks and perpetual smile. “I never could have imagined that my daughter with Down syndrome would be like this.”
And Eliza responded, “She’s not really your daughter with Down syndrome. She’s just Penny.”
I felt a wave of recognition wash over me, as if my heart had been waiting to hear the truth of her statement.
It had taken us nearly a year, but we finally figured it out. She wasn’t a mistake. She wasn’t a Down syndrome baby. To us, she was no longer even our-daughter-with-Down-syndrome. She was just Penny.
15
I am filled with contradictory emotions: “The hopes and fears of all the years are met in thee tonight.” Struck by how much hope I have for Penny—that she will live a full life with friends and laughter and arguments with her siblings and an ability to give back to her community and a knowledge of God’s love. Hope that she will go to public school and that her heart will heal and that she will speak clearly and read and write and walk and run and dance. Hope that she will sing and play music and ride horses. Hope that she will be received by many for who she is, valued by many, loved. Hope that she will surpass expectations—physical, mental, social, emotional. So much hope.
And with that hope comes intense fear that little of it will come to pass, that she will suffer, be mocked, that her little body will betray her. Fear that she won’t succeed, or that she won’t have friends, or that we won’t be able to give her what she needs. Fear that Down syndrome is what I thought it was a year ago. Fear that our culture is right, that she is undesirable, that an extra chromosome is a mistake. I don’t want to hope, sometimes, because I don’t want the fear that accompanies the hope.
December 2006
I hugged my arms across my chest. It was a clear night—cold, no wind, two days before Christmas. We had left Penny at my parents’ house with a baby-sitter, and Peter and I were walking through a local park on our way to meet my family for dinner in town. I took in the silhouettes of weeping willows, the duck pond, the outline of a picturesque wooden bridge. The water was black, with hints of ice on its surface. I glanced at Peter.
“I think I had a miscarriage last month.”
He nodded, and his face looked rigid, whether from my statement or from the cold, I couldn’t tell.
Five weeks earlier, I had taken a pregnancy test. I had been about to throw it away when I noticed a faint blue line. I woke Peter up. “There’s something I need you to take a look at,” I said. And there it was, this tiny acknowledgment of life within my body, of another member of our family. The baby would have been about three weeks old, a clump of cells, with the material in place for a heart and skeleton and brain and skin and all the other organs. After I told him, we had prayed together, kneeling on the floor with Penny babbling on the bed in front of us.
Later that same day, I had started to bleed. I told Peter that the test had been wrong. I insisted to myself that I hadn’t really been pregnant, even though I was a week late, even though the bleeding was heavy, even though I knew it was near impossible to have a false positive. But once December came, and I went through another monthly cycle, I couldn’t deny the physical facts anymore. It had been a miscarriage. Early, very early, but a miscarriage nonetheless.
We walked on, my arm linked in his. The cold stung my cheeks.
“How are you?” Peter asked. Though I didn’t look at him, I could hear the concern in his voice.
“I’m okay.” My reply was immediate, as if I didn’t want to think about my answer, as if I wanted to take the pond’s thin layer of ice into myself. “I can’t say I’m sad. There wasn’t enough time to start thinking of it as a baby, really. It’s just . . . Well, I guess I just need to call Dr. Mayer.”
Something similar had happened when Penny was five months old. After some unexplained bleeding, Dr. Mayer had asked me to take a pregnancy test and it had come back positive. An hour later, I took another test, and it turned out negative. I wasn’t pregnant. Dr. Mayer had called it a “chemical pregnancy.” I hadn’t thought too much of it. I hadn’t wanted to be pregnant, and I figured the test had just been wrong. But now I was starting to think I had miscarried twice in six months.
“I’m really scared,” I said.
Peter reached out and touched my shoulder until I slowed my pace. He held me for a moment, just long enough to slow my thoughts. My shoulders shuddered.
“I never thought this would be us,” I said.
“I know,” Peter replied.
What else could he say?
———
On Christmas Eve we drove to my grandparents’ home, a rambling Victorian house in a classic New England town. My grandfather greeted us at the back door. He put his face close to Penny and said, “Well hello, beautiful!” She laughed.
Grampa stood up straight to give us both a hug. Penny responded by sticking out her tongue, puffing her cheeks full of air
, and spitting in his face.
Eyebrows raised, Grampa said, “Why Penelope, my dear, tell me how you really feel!”
We joined a host of cousins and aunts and uncles in the living room. A fire crackled in the fireplace and Handel’s Messiah played in the background. Everyone wanted to see Penny in her red velvet dress with white trim and matching hat, spitting and kissing and giggling with anyone who came her way. I took her in my arms to give her a tour of the house. “See, Penny, this is your mama when she was a baby. . . . And this is a painting of your great-great-great-great-grandfather, who lived in this town a long time ago. . . . And these are the carolers your Nana made. . . .” I pointed to a row of figures. Eleven in all—the four sisters and our seven cousins, each with an identifying prop. This year Penny would be added to the lineup.
“It’s a very special family,” I told her.
She wriggled in my arms.
We soon headed down the street to church for the annual Christmas pageant and took our customary seats in the balcony. As Penny grew restless, Peter leaned over. “I’ll take her out for a while.”
I turned my attention back to the scene unfolding before me, the reenactment of what had happened all those years ago, the people streaming to visit the baby in the manger, the angels making pronouncements about the meaning of His life. I remembered from my theology classes that many of the early Christians hadn’t emphasized Jesus’s death on the cross or resurrection from the dead as the events that saved the world. They had focused instead on His birth, the incarnation.
We stood to sing “O Little Town of Bethlehem.” The tune was familiar, but I hadn’t ever paid attention to the words before. The hopes and fears of all the years are met in thee tonight.
So much depended upon this birth, this life, this child. In the very act of becoming a baby, God was overcoming everything that divided humanity from the heavenly realm. God had opened the chasm and bridged the gap simply by entering into human flesh, into our world.
Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny Page 14