“Your daughter’s heart is fine,” she said. “I thought you would want to know.”
Twelve hours later, with Peter down the hall checking in on our baby girl, I felt another wave of relief. She’s healthy, I told myself again and again.
When Peter returned, he looked more like himself—energetic, with bright eyes and a hint of a smile. “She is so tiny,” he said. “They’ve put this ten-pounder next to her in the nursery. I swear he’s a football player already! And they said she can come in here soon.”
“Do you know anyone with Down syndrome?” I asked.
He paused for a moment. “I did growing up. George Williams. Blake’s little brother. I didn’t know him well or anything. I think he died.” Peter looked at me, taking in the signs that I was deep in thought—arms crossed, forehead creased, biting the inside of my lip. “Why do you ask?”
“I don’t know anyone with Down syndrome. And this website says there are 350,000 in the United States. Which means . . .” I sighed. “Which means I’ve somehow missed this whole group of people.”
He sat down on the side of the bed, facing me. “And?”
“Well, what does that say about me?”
“It says . . .” He tapped his fingers together. “I don’t know what it says.”
“It says I’ve either ignored or avoided a whole group of people for my entire life. I’ve been thinking about our families. Kate had Mandy, her Best Buddy in college, remember? Mandy had Down syndrome. They got together every week for dinner. Kate loved her so much. She said Mandy was the best thing about her freshman year. And then Brooks volunteered at that orphanage in Peru, and her favorite kid was a kid with Down syndrome. I remember the pictures. And Elly was a Best Buddy in college, too. But I always thought that people with disabilities just weren’t my thing. I’m so ignorant.” I lay my head against the back of the chair and stared at the ceiling. “No, it’s more than that. I feel like I’ve never had time to even acknowledge these people’s existence, much less to actually get to know them.”
Peter walked over and knelt down next to the chair so that he was looking in my eyes. “Age,” he said, “don’t beat yourself up. What good will that do?”
“Even your dad knows more about special needs than we do.” I intended to argue my point, but the thought brought a smile to my face. Peter’s father worked as a regular substitute teacher these days, and one of his favorite assignments was kids with disabilities. He was from Denmark, and even though he had been in America for over thirty years, he still mixed up words occasionally. The last time we were together, he told us, “I particularly enjoy the acoustic children.” He had meant autistic. We all giggled, but I had been struck by the sincerity of his statement.
Peter squeezed my hand. “The bottom line is that we’ve got a lot to learn.”
He was talking about abstract knowledge, of course, but we also found ourselves ignorant about the most basic tasks. Bathing. Swaddling. Rocking her to sleep. The nurses made it look so easy. Peter and I held Penny as if she were a china doll that might shatter at any moment. They handled her more like a loaf of bread.
“Do you want to go see her?” Peter asked, and I realized I hadn’t left the room yet. He held my elbow as we walked down the hall. We entered the nursery, and I scanned the rows of clear plastic containers holding other newborns until I landed on Penny, flat on her back wearing only her diaper, tongue sticking out of her mouth. She turned her head toward her dad. He leaned close and stuck his tongue out in return.
We started asking questions, and soon enough a nurse was teaching us to bathe Penny with cotton balls, swabbing the soapy water under her neck, her armpits, running it across her chest and face. “Just make sure she doesn’t get too cold,” the nurse said. She fastened a new diaper in place and swaddled her tight. “Do you have some clothes for when she goes home?”
“My mom’s going to bring some preemie clothes,” I said, thinking back to the pile of outfits we had brought with us to the hospital. All of them had seemed tiny. But none of them would fit until Penny had gained three or four pounds, almost doubling her body weight.
Everyone in my family was due to return that day. Kate arrived first, her long blond hair swept back in a ponytail, no makeup, red eyes. Suddenly I felt like an older sister again, as she brushed away another tear with the back of her hand. I stood to greet her with a long hug.
After a loud exhale, Kate squared her shoulders and said, “Mom and Dad will be here soon. They’re just parking the car. How’s Penny?”
“She’s great,” I said as we both sat down. I pulled my legs toward my chest. “They say her heart is fine and her temperature is starting to get more stable. And she’s nursing well. She’s great.”
“How are you?”
“Better,” I said, realizing as I spoke that it was true. I hadn’t cried much the day before. Those hours had held a frightening calm, like the eye of a hurricane. It was different now. The calm felt peaceful, not ominous. “I think we’re going to be fine. I’m starting to learn about Down syndrome”— I motioned to the papers nearby—“and Peter’s doing a lot better. . . .” I trailed off.
“You’re crazy,” she said. Her tone was gentle, with a hint of humor. “I spent the whole day crying yesterday. I cried the whole ride down here. And here you are in real clothes, acting so normal, like having a Down syndrome baby is no big deal.”
I shrugged. Kate knew me well enough to understand that I had to think for a while before I would be able to feel much of anything. More tears would come, and probably some anger and hurt and guilt and fear. I could predict the emotions, but I couldn’t access them. For now, I had to work it out in my head. I had to construct a plan. And I needed some answers. Some of my questions were practical. The pediatrician had said Penny would need physical therapy—How do we set that up? Will insurance pay for it? And I wanted to meet all the other Down’s babies—or, as the information packet would have it, babies with Down syndrome—in the area. Where were they? And then there were the health concerns. How would we find the right doctors? Who would check her hearing and her eyesight and everything else?
There was another set of questions, questions that weren’t so easily answered by phone calls or a reference book. I hadn’t realized it until we received Penny’s diagnosis, but I had come into the hospital with a grid that ordered my sense of how the world worked. I believed that all people were created in the image of God, that every human being bore the mark of God’s goodness and light. But I also believed that everything that went wrong in the world was a consequence of sin. I didn’t think that God was doling out tornados or cancer or malaria as punishment for us doing bad things or something like that. I just believed that ultimately all the pain and injustice in the world could be traced back, somehow, to the human refusal to love God. The first human choice of self over God sent suffering and discord everywhere, like a fault line tearing through the universe.
Before Penny was born, I would have assumed that an extra chromosome was just that, a crack in the cosmos, evidence of the fractured nature of all creation. But how could I imagine such a thing about my daughter? I couldn’t figure it out.
I didn’t have time to try to articulate my thoughts. Peter wheeled Penny back in just as Mom and Dad walked through the door. She was fast asleep and swaddled tight. They crowded around. Her skin was smooth now, with a hint of olive underneath her pink cheeks. Peter picked her up and handed her to Dad. “Here you go, Grandpa.”
On the surface, we were introducing the firstborn grandchild to her grandfather. Big smiles. Oohs and aahs about how cute she was. But there was an undercurrent of hesitation. How do we say Congratulations and I’m sorry? How do we celebrate and grieve at the same moment?
Dad lowered himself into a chair with Penny. I couldn’t remember seeing him with an infant before. He held his body stiffly, shoulders hunched, using only his arms to hold her. He looked the same as ever—khakis, loafers, a button-down shirt with a frayed collar, a blu
e wool sweater with a few stains. But I had to wonder if he would become someone different now that he was a grandfather. Now that Penny was his granddaughter. She slept without stirring, and he smiled.
A new nurse walked in and started talking to Mom. “Can you tell Penny’s mom that Penny’s bilirubin level is still higher than we want? That’s why she looks a little jaundiced. But as long as it stays where it is, we’re in good shape.”
Mom interrupted. “Um, Penny’s mom is right here.” She pointed to me.
“Oh!” the nurse said to me. “I’m sorry. You look so comfortable for a woman who just gave birth. I thought you were one of the sisters. I heard there were a lot of them.”
“Two more on the way,” I said.
“How’s your pain?” the nurse asked.
Labor and delivery had been a lot easier than I had expected. “I’ve been taking the Motrin and using ice packs. It’s really not that bad.”
Kate said, “She comes from a long line of stoic New England women.”
The nurse gave a short laugh. “All right. Well, call if you need me.”
Soon we were sharing memories of the past few days, as if they had happened a long time ago. Mom talked again about how she had known something was wrong, how Penny had looked so floppy on the examining table. Kate mentioned her tears. Dad said he hadn’t been able to sleep on Friday night. “I’ve got a cold sore,” he noted, pointing to a bump on his lip.
I felt a strange urge to apologize, although I knew that none of them were looking for consolation, especially not from me. With Penny in the room, beautiful, peaceful, there was also a sense that it had been a false alarm, that all the fear and stress and sadness was for nothing.
Kate went over to Dad and said, “All right, Grandpa, hand her over.” She put her face close to Penny and bumped noses. After she sat down, she said, “Did any of you hear them on Friday night in the room next door?”
I had a vague recollection of shouts of praise through the wall.
“Yeah,” Peter said. “They had a baby girl a few hours after Penny.”
“But did you hear what they said?” Kate asked. “It was right after we’d gotten back from dinner. I walked into this room to see Age crying, and I knew there was something wrong. And just a few minutes after you told us, there was all this happy shouting next door. I heard someone say, ‘She’s perfect! She’s perfect!’ over and over. It was so weird.”
I hadn’t heard those exclamations. I looked at Penny in Kate’s arms. All the medical terminology implied anything but perfection. Birth defect. Chromosomal abnormality.
Kate bumped Penny’s nose with her own again and gave her a kiss.
“What I want to figure out is whether Down syndrome is a mistake,” I said. “I know that scientists and doctors would say that it is.” I gestured toward the papers on the table. “But how do I think about it in terms of God? Is it a manifestation of sin in the world? Is Penny less perfect than that little girl who was born next door?”
The room stayed silent. I thought back to the moment I first felt Penny kick. We were in Rome, living in a dorm room. Peter was there on a Fulbright scholarship with twenty other high school teachers. At least once each night I got out of our bed and walked across the linoleum floor to the communal bathroom. One of those nights, in mid-July, I couldn’t fall back to sleep. And that’s when I first felt her move. A flutter below my belly button. And then another. And three more. Hello, little one.
How could she be a mistake?
I looked up when Mom spoke in her gentle, level voice. “The only evidence of sin that I see in Penny’s birth is in how we respond to her.”
It was as if I had been looking through a kaleidoscope and it turned a notch. All the same pieces and parts, the same colors even, but a totally new pattern. A new way of seeing.
For the first time in months, I remembered those words in the car before Penny was born. But if you had waited, then you wouldn’t have had this child.
This child.
4
Consciously and unconsciously, we had implicit hopes, dreams, and expectations for Penny that having Down syndrome makes unlikely. At the same time, we didn’t want to be upset in any way concerning the birth of our daughter. We also realized that it was hardest to deal with this new reality when Penny wasn’t in the room with us. When she was out of the room, she became an abstract concept. When she was in the room—nursing, sleeping, just being held—she became who she is: our beautiful, sweet daughter. The more time we spent with her, the more pure joy we experienced. Who knows what the days and years ahead will hold, but one thing we know for certain: We could not be happier that Penny is our daughter.
From a letter by Peter, January 2006
“They really trust us to take care of a baby?” Peter asked.
“People do this every day,” I said. “Girls half my age. Besides, we have my mother to help.”
Penny lay in my arms, asleep again. She looked like a cherub, pudgy cheeks and a button nose and gentle breaths that moved her chest up and down. Mom and Dad had brought preemie clothes, and the warm white of her pajamas made her skin glow.
It was Sunday night, only forty-eight hours after giving birth. I was sore, but Motrin eased the pain. I could walk, get dressed, take a shower. Penny’s body temperature was stable. At five pounds, her weight was stable, too. She was small, and she had Down syndrome, but she was as healthy as could be. It was time to go home.
Penny slept through her introduction to our apartment. She didn’t stir as her aunts and grandparents gathered around. She didn’t notice when I picked up our cat, George, and let him study her face. The flash of the camera didn’t wake her when it captured our first family photo—Peter cradling Penny, me with George slung over my shoulder, three times her size.
Peter, Mom, and Dad moved toward the kitchen to work on dinner. My sisters followed me into Penny’s room. I scrolled through my memory, looking for a file marked bedtime. Penny had taken a bath at the hospital. She had a clean diaper. She was already wearing pajamas. It didn’t make any sense to read a book. A song. That was it. We would sing her a song.
As kids, Mom sang to us every night before we went to sleep. Each of us had our own lullaby, and I wanted to sing mine to Penny. We summoned Mom to lead us, as none of us could remember the words. What I could remember was the comfort of Mom sitting next to me on the bed as a child, singing softly with the lights out, her hand resting upon my shoulder.
All four of us chimed in at parts as Mom sang, “Close your eyes, close your eyes, go to sleep now, my darling . . .”
I kissed Penny’s forehead and placed her in a Moses basket. She lay still, bundled tight. I placed my hand on her chest once again, soothed by the steadiness of her breathing.
As we tiptoed out of the room, Kate said, “Of course, I’m not sure why we did that, since Pen was asleep the whole time.”
Kate giggled as soon as she said it, and I laughed out loud. Mom turned around with a smile, and pretty soon I was laughing the way I had as a little girl, when the four of us sat between Mom and Dad at family dinners and couldn’t contain our emotions. And just like those days when I was nine or ten, as soon as my laughter ebbed, I looked at Kate, saw her nostrils flare as she tried to contain giggles, and lost it once again. I wiped tears from my eyes and took a deep breath.
Before joining the family in the kitchen, I peeked in on Penny once more.
Go to sleep now, my darling.
———
A few hours later, Peter and I climbed into bed. I leaned back against a bank of pillows. My eyes wandered, resting on familiar objects as if to ensure I had truly made it home. Glimpses of our life together. The photo of Peter and me in front of the Louvre. The sturdy, weathered dresser that a friend had given us when we lived in Richmond. The framed poem Peter’s college roommate had written for us when we got married. The quilt of fabrics from Peter’s mother’s wardrobe.
George jumped up and peered into Penny’s basket, whi
ch we had placed on a table at the end of the bed. I moved onto my hands and knees to join him. There was our new addition. Our daughter.
For a moment it all seemed so right. So easy. A mother and father come home with a beautiful, healthy baby girl. To the cheers of aunts and proud grandparents. To a jealous cat. To a yellow room with a cozy armchair and a stack of novels to read while nursing and blankets and toys and clothes and everything else a baby could ever want.
But we were also coming home to a dorm that housed thirty boys—thirty boys who would return from vacation the next day. We were coming home to Peter’s colleagues, teachers, men and women with multiple advanced degrees, men and women like us who would cringe at the words mental retardation.
Peter had brought his laptop to bed. “I need to write a letter to the faculty,” he said.
“What are you going to tell them?”
“I’m going to tell them as much as we know. I don’t want rumors. I don’t want anyone to think we’re in denial. I don’t want anyone to think we’re trying to hide.”
“I hate the feeling that there’s a caveat when we announce the birth of our daughter.”
Peter started to type. I didn’t lie down yet, but I closed my eyes.
Until that point, boarding school life had seemed normal. Peter and I had met at a boarding school, and now we lived at one—Lawrenceville. Students from across the country and around the globe came here, lived here, in order to receive the best education possible. They would all go to college, and many of them would go on to have distinguished careers in finance or medicine or the arts. How does Penny fit into this place?
I glanced at Peter’s letter.
Our daughter, Penny Becker, was born on Friday evening. Penny is a beautiful little girl and the apple of her father’s eye.
A beautiful little girl.
Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny Page 4