For some, it seemed that Penny was a rebuke to our perfectionist tendencies, our overachieving ways. For others, she was a reward. And yet all this talk seemed to me to come at the expense of our daughter. In either scenario, her existence was all about us.
That summer, we slept with the windows open, hoping to coax a breeze into our room. I would awaken while it was still dark to the cries of the birds outside. Once, I dreamed that Penny climbed out of her crib and began to crawl across the floor. And in the dream, I felt relieved. Not only was she able to crawl, but she surprised me and everyone else by crawling early. Another night, I dreamed that Penny and I were taking a walk. From her stroller, she pointed and said, “Squirrel.” Again, relief washed over me. But then I lay in bed chastising my subconscious for wanting her to be different than she was. As the darkness turned to the gray light of early morning, I reminded myself that most kids with Down syndrome didn’t crawl until they were nearly two, and many didn’t speak until they were three or four. Some hardly spoke at all, even as adults. And the question remained—did I recognize the value of my daughter independent of her accomplishments, or would she need to prove herself to me?
In the light of morning, the nighttime demons scuttled away. Every day brought with it cause for excitement. She ate a whole jar of peas! She tried to pull herself up on my hands! Her hearing test showed only a mild loss!
My parents’ house proved an easy rest stop for anyone traveling the I-95 corridor, and we welcomed visits from friends throughout the summer. In August, Virginia and her two children arrived. I hadn’t seen her in person in nearly a year, since she had hosted a baby shower for me and Peter. She looked the same as ever—cropped blond hair, the body of a college-aged girl, a bright smile for me and bright eyes that landed on Penny. She reached out her arms and held Penny on her hip. “Hello, my friend!”
Penny blinked.
Virginia crouched down to introduce Penny to her own children, aged two and four. Penny’s head moved from one to the next until her face broke out in a big smile.
“I think she likes you,” I said.
Within an hour, we had piled towels, shovels, water bottles, and suntan lotion into the base of Penny’s stroller, and we set out for the beach. Penny wore a floppy white hat with stencils of animals around the brim. I lay a towel on the sand and plopped her into its midst. I was ready to ease her onto her back, but she stayed upright.
“Virginia, look!”
Virginia turned her head from helping her kids start a sand castle.
“She’s sitting up!” I cried. And she was. Penny was sitting up on her own. I hovered around her until, a few minutes later, she toppled over and landed on the towel I had propped behind her. She grasped both feet with her hands and smiled into the sunlight. And then she did it again. And again.
“She’s not supposed to be able to sit up,” I said, scanning a chart in my head. “I think it’s supposed to be a couple months from now.”
Virginia leaned close to Penny and tickled her round belly. “Yes, sweet girl, you are just so strong and amazing, aren’t you?”
We sat side by side. I looked out across the water, taking in the rocks I had scraped my knees against as a kid, the seaweed clustered along the high-tide line, the sailboats in the distance. I held the thrill of Penny’s accomplishment inside my chest, as if it were a butterfly cupped in my hands. I didn’t want to let it go, and yet I was afraid I would damage those fragile wings.
And then Virginia pulled herself away from Penny and laughed. “Six months old is a perfectly normal time to sit up!”
I laughed, too, although something started to knock around in the back of my brain, some discomfort I wanted to shake off.
Virginia went on, her smile wide, her tone light: “So Penny will get Cs and Bs in school instead of making the honor roll. And maybe she’ll play JV instead of varsity. And I bet it will still be really hard for you and Peter.”
I forced a smile. She was trying to encourage me, but I was already second-guessing my pride in Penny’s newest accomplishment. I had been trying to resist the temptation to put everything on a timeline, to measure and quantify my daughter. And I resisted Virginia’s words, too. Penny wasn’t going to get Bs and Cs or play JV sports. At least, I had to get used to the idea that she wouldn’t.
I picked up a handful of sand and let it run through my fingers. It was coarse, with specks of black that stuck to my skin. I was grateful for my sunglasses, for the distractions of kids making sand castles.
Penny toppled over and I summoned a cheery voice. “Do you need a rest, sweet girl? Come sit with Mama.” She sat in my lap holding her hands together, raising them every so often, as if to applaud, when she spotted a bird or a little wave crashed on the shore.
Later that night as I lay in bed, I argued with God—We have plenty of friends who are equally driven and who have equally high expectations for their families. Why are we the only ones with a child with special needs? I realized then that I was angry not at our solitary status but at the presumption altogether. Virginia’s words stood as a summary of a host of comments that had come in the guise of explanation and consolation, and I had repeated those comments to myself. But now I thought, Am I really so awful—such a controlling perfectionist—that I needed a child with an extra chromosome? Could I not have learned through a typical child? Nice as it had been to have an answer for Penny’s diagnosis, I wasn’t satisfied with it any longer.
———
Around the same time, we were invited to visit two families with adult sons with Down syndrome. First, we spent an afternoon with Buddy. Peter had met his family through Lawrenceville, and they invited us to join them for lunch. Buddy’s father opened the door to greet us. He ushered us to the backyard, where the whole family was scattered about. When I first saw Buddy, I felt shy. We were peers of a sort, as I was only two years older. And yet I didn’t know what we would find to talk about.
He put me at ease, hand extended. “Nice to meet you!”
We perched Penny upon a glass-topped table, showing off her newfound ability to sit up straight. Buddy tickled her under the chin and sat down nearby. He looks just like his dad, I thought. He had a thick neck and big hands. He sat back in his chair for a moment, but soon he sprang to his feet and grabbed a Nerf football.
“Buddy, tell them about your job,” his dad said.
His face lit up. “My job? I work in Hartford. At a law firm.” He pounded the football against the palm of his hand.
“What do you do there?” Peter asked.
“Oh, you know, errands. I make copies. The people are really nice.”
“What do you do when you aren’t working?” I asked.
He jumped in place and said, “I’m starting a hip-hop class soon.”
“Maybe I’ll join you,” his dad said.
Buddy spun around. “You aren’t energetic enough, Dad.”
He wandered away, and his father leaned forward. “He’s a great kid. A great kid. The one thing is that he really wants to live on his own. So we’re working on that. Right now, he’s in an assisted living facility with a few other young men and some aides. We think we’re going to be able to arrange for him to have a separate house nearby.”
I nodded. It seemed so far away, but even with a six-month-old, social workers and older parents had suggested we start planning for Penny’s adult life. They encouraged us to save for the possibility that she would never be self-sufficient. We had recently purchased a run-down summer cottage near my parents’ home in Connecticut, and I envisioned it many years into the future, fixed up as a house where we could retire. Maybe Penny would have her own apartment over the garage.
We stayed through lunch, and Buddy and his family all commented on how “well” Penny was doing. I appreciated their encouragement, but what mattered most to me was seeing this family together. Buddy was a brother, a son. He was a young man in his own right, with a big smile and broad shoulders, with slightly garbled speech and a qui
rky sense of humor.
The following week we met Dave and his parents. He lived alone in a single-story white house near the center of town. I found myself comparing him to Buddy. He was smaller, more subdued. His words were harder to understand. He told us about his love for music, just like Buddy. He talked about his job and his girlfriend. He gave us a tour of his house. At the end of our time together, Penny sat next to him on the couch in his living room. She waved her hands and babbled as if she had a lifetime of stories to tell him. He gazed at her, rapt with attention.
On the drive home I said, “I’ve never seen Penny respond to anyone like she did to Dave.”
Peter shook his head. “I know. It’s as if she was able to sense some degree of gentleness or, I don’t know, shared chromosomal makeup or something.”
“Yeah, but it wasn’t the same with Buddy. That’s part of what was so good for me in meeting them back to back. I know there were similarities. But they were such individuals. Dave was kind of shy and I could tell that Buddy could be an annoying, loud younger brother sometimes. It’s like their families mattered more than anything else in making them who they are.”
Peter continued my thought, “And that talking about Down syndrome in general terms isn’t all that helpful.” He tapped his fingers on the steering wheel. “You know, one of the things I’ve loved this summer is that the grocery stores around here have baggers with Down syndrome. It’s funny. Every time I go to Stop and Shop, I ignore the cashiers because I’m so excited to say hello to the baggers. And before Penny was born, I would never have said, ‘I really hope my first child is a grocery bagger when she grows up,’ but that’s because I just didn’t get it. The woman at Stop and Shop and the man at the Big Y—they’re both good at their jobs, and they always greet me so nicely. I have to imagine that their lives are just as satisfying as mine is. For Buddy and Dave, same thing. It makes me so happy to be her dad.” He glanced in the rearview mirror. “You’ve shown me a whole new world, my love.”
———
That night, as I continued to work through the thoughts and questions and encounters of the previous week, I remembered another story from John’s gospel. In it, Jesus’s disciples approached a blind man. But they didn’t see him as an individual. They saw him as a theological problem, a rhetorical question. They asked—Who sinned, this man or his parents, that he was born blind? I felt as though we had been asked, and that we were asking ourselves, a variation of that question. Who sinned, Peter or Amy Julia, that this baby was born with Down syndrome? Why did God do this? Is this a punishment, a rebuke?
Or maybe there was a more contemporary spin to put on it. Whose genes are screwed up? What environmental factors in Amy Julia’s or Peter’s life led to this outcome?
In John’s story, Jesus answered His disciples by saying, “Neither this man nor his parents sinned, but this happened that the glory of the Lord might be revealed.”
And as much as I wanted order and reasons—as much as I wanted answers, even if those answers included judgment—instead I received this truth: Penny is neither a rebuke nor a reward. She is a child, not a product of sin or of biological happenstance or of any lesson we needed to learn. No. This happened that the glory of God might be revealed.
With that thought, I felt my anger dissolve. I didn’t remember my dreams that night. And it wasn’t the birds I heard in the morning. It was the babbling sounds of my daughter, awakening me to the day.
13
On the one hand, Penny has a hole in her heart and she can’t roll over and her teeth are crooked and emerging randomly. I get frightened when she gets a cold because her body is more vulnerable to infection. On the other hand, she is sweet and smiley and patient and fun. She gives me kisses and works hard. And somehow it is all intricately bound together—the extra chromosome and the physical difficulties and the sweetness. I used to think it was a trite consolation, along the lines of a date having “a good personality,” to say that kids with Down syndrome tend to be mentally and physically delayed and also really loving. But I must have thought that because I didn’t value the loving part. Is there something “wrong” with my child? I don’t really know. All I can say is that there are many things that are right—exactly right. Crooked teeth and all, exactly right.
October 2006
When I was a little girl, my mother often said, “If I could bottle up Elly’s laugh and sell it, we’d be millionaires.” After that comment I always pictured my baby sister Elly giggling, her curly white-blond hair framing her round cheeks, ready to be released upon a dreary world in need of joy. As summer turned to fall, I started to feel something similar about Penny.
We returned to Lawrenceville for another school year, and I found myself delighted with Penny’s every look, every sound, every movement. Now that she could sit up, she did, all day long, like a judge in a courtroom, proper and stern. She was content to observe her surroundings, and she rarely moved around or fell over. If she did find herself on her back, she would pull her feet into her mouth and nibble on her big toes. Most visitors received a big grin and a slobbery kiss, and she usually watched me talk with a friend as if she were taking mental notes on the art of conversation.
She kept learning new things. One day I walked into her room and said, “Good morning, sunshine. Time to get up.”
She raised her arms in the air, as if she understood.
She started to turn toward me at the sound of her name. She learned to eat avocado, raspberries, peas. We took our first trip to the grocery store. She began to roll from her tummy to her back. In September, she cut her first tooth.
A few weeks after we returned, I was sitting with Penny in her room, folding clothes. She was nine months old, but the labels on most of her clothing still read “3 to 6 months.” I had a prick of nostalgia as I realized she was outgrowing her pink plaid jumper, the pajamas with the frogs on them, the polka-dotted sundress. I tucked them into a bag in the closet as the phone rang.
“Hello?”
“Hi. It’s me.” It was Virginia.
We exchanged pleasantries for a bit, and then she said, “I just read a novel where one of the characters has Down syndrome.”
I stopped folding the laundry and sat down. Penny craned her neck to see me.
Virginia said, “I just wanted to call to say I’m sorry.”
“Sorry for what?”
“Well, I just don’t think I really got it. How permanent this is. I mean, the character in the book is wonderful, but Down syndrome affects her for her whole life. And I just don’t think I understood that very well.”
I felt my body relax. “Thanks for calling,” I said. I couldn’t quite tell her what I was thinking. Thank you, and yet at the same time, Don’t be sorry. “Send me the book if you get a chance. I’d love to read it, too.”
It was strange to realize that when I looked to the future, Down syndrome no longer felt ominous. It just felt unknown. Sure, it would impact Penny, and us, for the rest of our lives, but I didn’t know exactly how it would impact us. It was only the inconsequential things that were different now, like introducing a straw instead of a sippy cup because sippy cups increase tongue protrusion. Or avoiding exersaucers and jumparoos because they would heighten Penny’s hip instability. Or realizing that no clothes were designed to fit her short arms.
In the future I imagined more of the same. Some of it might be scary, but much of it would be normal for us. And if my recent experience with Penny was any indication, the rest of my life as her mother would be filled with delight.
The most natural words to describe her were ones like cute, sweet, fun, outgoing. But then the clinical words flitted through my mind: chromosomal abnormality, mental retardation, disabled. And the politically correct ones: special needs, intellectually challenged. I still didn’t know how to describe her in a way that didn’t ignore or minimize her extra chromosome but that also didn’t define her in entirely negative terms. The words mental retardation were helpful in describing the f
act that Penny would learn differently, and more slowly, than typical children. But the fact that retard and retarded had become slurs in our culture eliminated their helpfulness. Then there were the words disability and abnormality. I thought of those signs on the highway about disabled vehicles. Penny might not be able to do the same things on the same timeline as others, but she was not a “dis-abled” human being, she was not a broken-down, can’t-function-until-a-mechanic-comes-along, little girl.
One word I did like was vulnerable. Penny was vulnerable—physically, mentally, even socially and emotionally. Another was dependent. Penny was, and would be, dependent upon others for some level of care throughout her life. Perhaps the reason I liked those words was because they described what I wanted to admit about myself. That I, too, was vulnerable, much as I liked to see myself as invincible. That I, too, was dependent upon others, much as I liked to think of myself as self-sufficient.
———
One afternoon, Peter came home from work and held out a piece of paper. “Take a look,” he said.
I followed him down the hall to our bedroom and sat on the bed to read. The document was entitled “Proposal for the Moral Education of Lawrenceville Students.” As Peter changed out of his jacket and tie, I sat on the bed, scanning the page. When I had finished, I tapped the paper with my index finger. “Okay, she’s arguing that because Lawrenceville students have the ability to reason, they have the ability to make moral choices. Right?”
Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny Page 12