She was beautiful. But she also looked different. Mom had seen it immediately. The doctors could list all her distinguishing features. Her beauty was unconventional. The type of beauty I had rarely been able to see.
When Peter and I were in school, everyone had taken a poll for the yearbook and voted on which senior girl was the best looking. A friend of mine held the honor. After she was announced the winner, she almost dropped out of school, almost didn’t make it through the spring. I don’t know what triggered it exactly, but she started losing weight in January, and a few pounds became ten, then twenty, until her clothes hung off her body, the structure of her face became pronounced, and her collarbones jutted out of her shoulders.
She wasn’t alone. I spent those high school years saying that I didn’t care how I looked. I didn’t wear makeup or do anything to my hair, and I only took a shower when it seemed absolutely necessary. But the thought of gaining even one pound left me panicked. I found a journal from my sophomore year that recorded my eating patterns on a typical day: Apple. Salad. Frozen Yogurt. Apple. Diet Coke. It recorded exercise, too: Three mile run. Ninety-minute soccer practice. Thirty minutes on the stationary bike. Fifty sit-ups. The same journal contained a vow I had written to myself: “I pledge that I will not eat more than 1,000 calories per day.” It was signed and dated. A covenant with the gods of thinness, the currency of beauty.
The pledge to starve myself hadn’t lasted very long. A few months, and then I went home for Christmas break and couldn’t keep it up. Mom cooked dinner, so I had to either feign illness or eat. The odd thing was, when I started eating again, my body rejected the food. I didn’t make myself throw up. It just happened, as if the food had nowhere to go.
I told Mom about this strange sickness, and once the hubbub of Christmas had passed, we went to the doctor. A series of tests ensued until finally, six weeks later, after I had lost fifteen of my 102 pounds, doctors diagnosed me with gastro paresis, paralysis of the stomach. It took six more years before I ate healthily again.
The girls at Lawrenceville reminded me of myself in high school. Lots of energy and drive. A willingness, even eagerness, to address serious intellectual issues. An ability to argue a point. Grades and SAT scores that were higher than the boys’. And a fixation on thinness. It was rare to see anyone on this campus who was overweight.
Just like those girls, I’d always valued thinness and conventional notions of beauty even though I told myself it was shallow, even though I had prayed over the years to be able to see the world differently. I remembered one week in college, in the midst of one of those prayer bouts, when I was able to look at Janet, a girl in my English class, and see that the sweetness of her spirit made her beautiful. Or Ashley, down the hall, with the short brown hair and pocked face and glasses. I noticed the gracefulness of her hands.
But it didn’t last long, that ability to see.
And here at Lawrenceville, looking good mattered just as much as it had when I was in high school. Penny already looked different. Almond-shaped eyes. Flat facial features. Tiny ears. Penny looked different, and she was beautiful. Could Lawrenceville see it? Could Lawrenceville see her? Could I?
“I’m going to ask Chris to read this to the faculty when they meet in the morning,” Peter said, placing the laptop on my outstretched legs.
I read out loud:
“Hi Lawrenceville friends,
Our daughter, Penny, was born on Friday evening. Penny is a beautiful little girl and the apple of her father's eye. But there is more to the story than we first thought. About two hours after Penny came into the world, the doctors told us she is going to have special needs related to a chromosomal abnormality, Down syndrome. Needless to say, this news was utterly shocking to us and we are still (and will be for a long time to come) adjusting to this new reality.
On the one hand, Penny is a beautiful baby who is very healthy, especially for an infant with Down syndrome—her heart is strong, her intestines are working well, and she loves her mother's milk. On the other hand, the future is going to look a lot different than we thought it would, and there is very real grief associated with that. The Lawrenceville community has always comforted and supported us when we've needed it in the past, and we are so glad that this will be Penny's home. Our hope and prayer is that she will be as much of a blessing to this community as we know you will be to her. We sincerely look forward to seeing you all and reentering life here, and we thank you in advance for your thoughts and prayers. It has been a real comfort to be surrounded by family and friends these last two days, so please don't be strangers.
Love,
Peter and Amy Julia”
“It’s perfect,” I said, handing back the laptop and pulling the covers to my chin. Peter had such faith in this place, these people. But there was so much in me that doubted. So much that feared.
Peter squeezed my leg. “They’re going to love her,” he said.
I kept my eyes closed for a minute, but then I pushed myself up. No words needed. Just a kiss good-night and my cheek resting against his chest. And then sleep.
———
We had fun that night. Penny woke me with little grunts every two or three hours. I nudged Peter awake, and together we pulled back the comforter, lay a towel on the bed, and began the process of changing her diaper.
“Why did this look so easy in the hospital?” Peter asked as his big fingers fumbled with the tabs.
“Because the nurses know what they’re doing,” I said.
As soon as he had the diaper secure, just as I was sliding Penny’s arms back into her pajamas, we heard it. Another diaper needed.
I was leaning over to get more supplies when I heard Peter cry out.
“What?”
“She peed on me.” At first he sounded puzzled, but soon his face spread into a smile. “And somehow, this little creature managed to pee on her pajamas and the towel, too.”
I handed over the new diaper, shaking my head.
Penny blinked at us, serene.
This is good, I thought.
In fits and starts, we were settling into a rhythm of care. We were beginning to learn our daughter.
———
The next day was more of the same. Try to keep her awake while she nurses. Cycle through as many diapers as it takes to keep her clean and dry. Remember to take Motrin. But mostly, watch as people come to meet her. Peter’s brother Christian and his wife, Jennifer, spent the day with us, and Kate’s fiancé, Frank, drove down. Penny slept through it all, cuddled in the arms of one of her relatives, and even though she hardly opened her eyes, her presence brought peace. Lines on Christian’s face softened with her in his arms. Dad’s shoulders relaxed. Somber tones became spirited, and by the afternoon, the joy in the apartment was palpable.
I still had so many questions, but I was able to hold them at bay. Or perhaps the presence of our family held them at bay. Carried us.
The day wore on, and we could hear doors slamming, feet trudging along the upstairs hallway. The rest of the house began to wake up as the boys returned. I usually welcomed those signs of their presence, but I didn’t want to see them yet. I felt safe within the walls of our apartment, with only our family around. I couldn’t imagine walking out that door with the eyes of sixteen-year-olds on me. It would be like running through town wearing only a towel. Exposed. Vulnerable.
At nine o’clock that night, Mom and I sat in the living room of our apartment with the door open. The rest of the family had departed, and Peter had gathered the boys for a house meeting in the common room downstairs. I could envision them—a few propped against the pool table, some sitting on the floor, others lounging along the window seat. The jet-lagged ones from Korea and Japan blinking to keep their eyes open. The cool kids raising eyebrows at each other in subtle signs of hello from across the room. Complaining about being back. Happy to be back.
The room quieted, and just a few seconds later, Mom and I heard cheers. Whoops and hollers and applause. Pe
ter had told them that Penny was here. But then the room settled down again. I could guess his next sentence: “Boys, there’s more to the story.” And I could picture him there—sitting on the arm of a chair so he could see them all, elbows on his knees, hands moving to illustrate his point. I could imagine him telling them all about it. About the doctors’ words. About his own tears and fears. About Down syndrome. And then, about Penny. His love for her. The way her presence made him want to dance. He was inviting them into our story.
Thirty minutes passed, and then the cheers rose again, up the stairwell and into our living room, welcoming our daughter into the world.
5
The days feel like a spiral, where I circle around to sadness or delight or confusion and disbelief. And I know it is ground I have already covered, but I have to go back and scope out the territory again, settle into the landscape, assess the contours of the horizon, try to put one foot in front of the other and move forward. Try to think it will not always come back to fear and sorrow, but that we will circle around until their time is done and we truly can accept this new life as ours, as our family, as normal for us . . .
January 2006
The cheers of the boys in our house set the tone. Within hours of sending an email to family and friends that explained the likelihood that Penny would have “special needs,” calls and cards and gifts and flowers poured in. One friend hand-delivered a high-tech jogging stroller. A woman from church called to say that we would receive three meals a week until the end of February. One of Peter’s colleagues volunteered to teach a class for him through the rest of the winter term. Throughout the month of January, gifts arrived from around the globe—Denmark, England, Mexico, Korea. Penny received seventeen blankets—pink cashmere, light pink fleece, dark pink fleece with PTB embroidered in the corner. Four silver spoons. Eleven bouquets of flowers.
I kept wondering whether people were rejoicing with us in the birth of our firstborn child, or consoling us because she had Down syndrome, or simply doing the best they could to demonstrate their love and support. Or all of the above. I wasn’t even sure what I wanted, celebration or sympathy.
And then there was the orchid, which arrived in the middle of our first week home. Two stalks with six blossoms each, all a deep fuchsia. George nudged them with his head and batted his paws at the swaying petals, but there was strength within their delicate construction. It was gorgeous. Over-the-top. A picture of abundance, of life. I was inclined to take it as a sign, a promise.
The gift came from the mother of one of the boys in our house. She couldn’t have known that Penny’s namesake loved orchids, that her house in New Orleans had been filled with them when she died. She couldn’t have known that before Penny was born, my friend Virginia had sent a gift with a quote from Psalm 1: “Penelope Truesdell Becker, like a tree planted by streams of water, which yields its fruit in season and whose leaf does not wither.” She couldn’t have known how much I hoped, even though I couldn’t have said it out loud, that Penny would grow up to be strong, and delicate, and beautiful.
We also received a series of cards—advice, comfort, congratulations. I felt relieved when I read the words “I don’t know what to say.” But others wrote, “All parents go through uncertainty and fear when a child is born,” or, “She’s not really that different.” It was then that I wanted to protest. They hadn’t cried in the hospital. They hadn’t come home with information on support groups and questions about life expectancy. They didn’t need to report back for a blood draw on the fifth day of their baby’s life. They didn’t have the pediatrician calling daily, just to check in.
But plenty of people could relate to the sweetness of rocking a baby to sleep or the warmth of a baby’s soft skin against their own. Or the nervous energy of all the firsts: the first diaper, the first night home, the first weight check, the first bath.
On Monday, our second evening with Penny in the apartment, Peter and I lay her on a towel on the floor of her room with a space heater nearby. She stretched her scrawny arms and kicked her legs. Since she slept almost all the time in those early days, it was a rare treat to find her wide awake, staring at us and starting to respond to our faces. She puffed out her cheeks and wrinkled her forehead and went through what seemed like a repertoire of tricks. We laughed and I jumped up to get the camera to capture her potbelly and golden skin.
Plenty of people could relate to the love we felt for her.
At the end of that first bath, Mom brought me the phone. I handed Penny to her in return. “It’s Virginia,” she said.
I dried my hands. “Hello?”
There was no answer.
“Hello?”
I heard something muffled, and I finally realized she was crying. I wished I could reach out my hand and cover the hundreds of miles between us. We had moved to Lawrenceville from Richmond two years earlier, but Virginia was still the first person I had thought to call in the hospital. “Oh, Virginia,” I said. “We’re okay.”
She still didn’t respond.
“Penny’s doing well. She’s healthy and we’re happy and it’s all good.”
I could almost see her nodding and wiping away the tears and swallowing back her emotions. She said, “We were on vacation with my family. I just got home and got your messages. I’m so mad that I was away when this happened. I’m so sorry.”
It was as if I were talking to myself a few days earlier, when anger and grief and shock were the only possibilities. All those things were still present, they just had started to be knit together with joy and pride and love and laughter.
“How are you?” she asked.
“I’m doing well. Labor was pretty easy. I took a walk outside today. And nursing doesn’t hurt, either. Actually, you’d probably hate me if Penny didn’t have Down syndrome.”
She tried to laugh. But she knew, and I knew, that she wasn’t asking about my body.
“I can tell people are praying for us,” I said. “In some ways, it feels like it did after Jack died.” A few years earlier, Virginia’s younger brother Jack died in a car accident. I had spent hours each day in her house doing simple tasks—folding laundry, answering the door, unloading groceries. And when I was there, I could feel the prayers for her and her family. They were as tangible as the crumb cakes and cards and flowers. Prayers for comfort and strength in the midst of the grief.
“Sometimes I feel a strange nostalgia for that week,” she said. “It was so intense, and so sad, but there was something good about it, too.”
“Peter said the other day that he thinks our highs will be higher and our lows will be lower than most parents’. That the joy will be more joyful, her accomplishments even more exciting. But the fear and sadness will be deeper, too.”
“Yeah,” she said, and she sounded like herself again, with her usual tone of thoughtful confidence. “That makes sense. And there’s where I think this is different than with Jack. For us, the grief has faded, and sometimes I struggle to remember what it was about that time that was good.” An image flashed into my head of Virginia, seven months pregnant, with her dad’s arm around her, holding her as she wept. “I wonder whether it will be different for you. Almost like the sadness will go with you throughout Penny’s life, but so will the blessing.”
I hated admitting that there was grief in relation to Penny’s birth, even though it was true. When Virginia called, I was feeling fine. We’d been giggling and taking pictures and were filled with the giddiness of new parents. But I didn’t talk about how the grief still came, every day, and knocked me over. How we had been deeply submerged in despair last weekend, and now we were just in up to our necks. So we could breathe, could cry for help, could even get out of the water and onto dry land for a moment or two. I hadn’t told her how I thought that someday we might find that the water only reached our hips and we could wade forward. And after that, merely dip a toe in now and then.
I hadn’t told her how afraid I felt, afraid for the short term, that Penny wouldn’t g
ain weight, that I wasn’t feeding her enough, that my milk would dry up, that she would be too hot or too cold or too wet. And afraid for the long term: that she would die early, that she wouldn’t be able to live on her own, that she wouldn’t ever know deep love from one other person, a husband, that she wouldn’t be able to do things she wanted to do, that her joints would be out of whack, that she wouldn’t be smart or funny or cute, that other people wouldn’t love her, that I wouldn’t love her, that we would see her as a burden instead of a blessing.
I hadn’t told her that it had to get better, the sadness, or I wouldn’t survive.
Virginia waited through my silence.
I finally said, “Sorry. Lost in thought.”
She said, “I’m sure you need to go, but there is one other thing I think I should tell you.”
“Okay.”
“When I first got your message, I was so upset. As you can tell. And I don’t mean to sound all weird here, and I wasn’t sure I was even going to tell you this yet, but I think I should. I was praying for you, and I was reminded of Jesus saying, ‘Whoever receives this child, receives me.’ So I looked it up. It’s in Mark. I think I was supposed to tell you that.”
Whoever receives this child.
This child.
I heard it again, that voice from the fall. But then you wouldn’t have had this child.
“Thank you,” I said.
I returned the phone to its receiver and stood in the hallway that stretched the length of our apartment. We had filled the wall with family photos. There was one of Mom and Dad on their wedding day, Mom reaching forward with a bright smile, Dad leaning back with his typical brooding expression. Next to them hung Peter’s class photographs from kindergarten and first grade. He was easy to pick out. As an adult, his cheeks were no longer round, but he still had the dimples. Then a black-and-white photo of my great-grandparents shoulder to shoulder, with mountains in the background, in Glacier National Park. She sat up straight, in a silk suit with pearls. He looked more relaxed, with his arm slung behind her shoulder, wearing a jacket and tie. It made me smile to think of the two of them, all dressed up, exploring the wilderness. But I settled my gaze on the photographs of Peter’s mother, whom we had taken to calling Grand Penny.
Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny Page 5