“I’m sorry,” I finally said.
“I feel selfish even bringing it up. You’re here all day, and you do everything for her. I just come in and make faces for a few minutes.” He rested his chin on the top of my head.
“I remember something you said when I was pregnant. You said that having a child would give us more of each other. That I’d get to see you as a dad and you’d get to see me as a mom. This was supposed to bring us together. But I don’t blame you for feeling abandoned. I didn’t realize . . . I’m sorry.”
Our days were so different now. He put on a coat and tie every morning, ate his cereal and drank his coffee, kissed us good-bye, and walked out the door. He went on to interact with hundreds of people—lunch with colleagues, meetings about students in trouble, teaching, coaching. He came home in the evening, helped bathe Penny and put her to sleep, and we ate dinner together. Those dinner conversations were almost always a record of my day—the phone calls I’d made to doctors, the visits from therapists, the reading I’d done. My thoughts were consumed by our daughter.
I would report what I was learning: “Did you know the average age a kid with Down syndrome learns to ride a bike is ten?” Or I’d give him a detailed rundown of our schedule, when she slept and how much she ate. There were times he found me on the verge of tears—feeling fat and incompetent and worried I would never be interested in anything outside our home again. And days he found me beaming, hoping Penny would reproduce for him whatever feat I had seen that afternoon—grabbing a toy with two hands, smiling at me, turning her head from left to right.
It didn’t help that we had responded to Penny’s diagnosis so differently. Two days after our return from the hospital, Peter finished grieving and walked outside and never looked back. Penny was his beautiful daughter, and that was that. I trusted him—he had immersed himself in grief and had emerged ready to receive our daughter. He didn’t worry about her future. He didn’t wrestle with the theological questions surrounding Down syndrome. He just loved her.
I wasn’t there yet. I felt too fragile. Too protective of Penny. Too worried that I would hear comments or catch people staring. He didn’t push me. We knew from past experience that we would each work things out in time. So it wasn’t judgment that divided us. It was just difference.
———
We still spent time alone together. Every Thursday night, after Penny went to bed and with my mom as our baby-sitter, we went out to dinner. I always felt like an imposter—dressed up and eating a nice meal, and our daughter had Down syndrome. It was as if I thought that a prerequisite for eating pear and goat cheese salad was an absence of life’s complications. As if I thought that all the other people in the restaurant lived lives of ease. I guess part of it was that a date with my husband felt so familiar, eerily familiar, so disconnected from this new life I lived as a mother, this new life I lived as a mother of a child with special needs.
But even on the nights alone together, Down syndrome was all I could talk about. One of those evenings, I looked up from my salad and asked, “Do you blame me?”
Peter squinted a little, the way he did when he was confused. “Blame you for what?”
I felt a catch in my throat. “For the Down syndrome. For the extra chromosome. I read that it usually comes from the mother.”
He put his fork down and reached out his hand. “It hasn’t crossed my mind. No.”
I rested my hand in his, but I continued, “Because I really think it might be my fault. Because you know, usually it happens with older women. It made me think—what if my eggs, even though I’m only twenty-eight, what if my eggs are old? And what if that’s because I had an eating disorder? I’ve always heard that eating disorders can mess up fertility. What if I did this?” I blinked and looked away.
“Age,” he said, his voice low and gentle. “You didn’t do this. God did this. Penny is our daughter. That’s all that matters. There’s no one to blame. You aren’t allowed to take responsibility.”
The catch in my throat started to soften.
He squeezed my hand and picked up his fork.
“One more thing?” I asked.
Peter nodded.
“I’ve also been thinking that most babies with Down syndrome don’t make it. Even the ones who aren’t aborted, often their lives end in miscarriage. From what I’ve read, it’s something like 75 percent. So I thought if I’m going to feel guilty that she has an extra chromosome, then at least I can also feel proud that my body carried her to term.”
He shook his head. “Or you can just be grateful that she’s healthy and you’re healthy and we’ve got a wonderful family.”
The waiter cleared our plates and I laid my hands on the white tablecloth. I kept my eyes down, studying the ring on my right hand, a gift from my grandmother for my twenty-first birthday. Then I gazed at the diamond on my left hand that had come from Peter two days later, when he proposed.
“It’s funny,” I said. “For all those years that I didn’t think we’d have kids, once we decided to get pregnant, I always expected a big family.”
Peter sat back in his chair. “But?”
“Well, I don’t know how to think about having more kids now.”
After Penny was born, the doctors told us it had been “random” for me to conceive a child with Down syndrome. And I thought “random” meant it could never happen again, or at least that I went back into the same statistical pool as all the other twenty-eight-year-old women, with a 1 in 1,000 chance of having a child with Down syndrome. But then we had learned that my chance of having another was 1 in 100, as if my womb had just catapulted forward a decade.
“It makes me mad at the doctors, really,” I said. I could hear the indignation in my voice. I pictured the entire medical establishment as a middle-aged man with a slight paunch and a smug expression. I wanted to force that man to admit that there were some things he just didn’t know. I wanted him to uncross his arms and lose the smile and feel helpless. I wanted to punch him in the stomach and watch his eyes get big. “When they say that Down syndrome is random, they’re basically lying. What they mean is that they don’t know why it happened. That’s all.” I took a breath. “Sorry.”
“Are you done?” Peter asked. He held my gaze with kindness in his eyes, as if he would gladly listen to anything I needed to say.
“I’m done. But I’m still wondering what you think about having other kids.”
The main course arrived. Peter cut a few bites and then paused. “I guess I wonder if we should think about adoption. I mean, I can’t imagine what our friends would think if we had another baby with Down syndrome. Actually, I can imagine. They’d think we’re idiots.”
I wanted to protest. You just said that Penny’s birth was purposeful. How could you even think of adoption? And yet, if I was honest, he was speaking aloud my own concerns. I went around and around inside my head. On the one hand, any suggestion that I wouldn’t try to get pregnant again because I didn’t want another child with Down syndrome felt like a rejection of Penny. On the other, I didn’t want another child with Down syndrome. I was scared enough of what people thought about us now, much less what they would think if it happened again. I shook my head, as if I had been speaking out loud. “It’s still highly unlikely that we’d have another child with Down syndrome.”
Peter raised his eyebrows. “Highly unlikely doesn’t mean anything to me anymore.”
I looked away again, my thoughts flashing back to the phone call three years earlier and Peter’s mom saying, “I have a tumor in my liver.” Grand Penny’s cancer had been highly unlikely. She had no history of liver disease or cirrhosis. No hepatitis or intravenous drug use. It just happened. Just like our Penny, with her extra chromosome. It just happened. With no explanation. And it could happen again.
I knew Peter was thinking the same thing, so I said, “There are some things in our lives that are highly unlikely and good.”
“Such as?”
“Well, such as m
eeting in high school and staying together. No one would have predicted that. Or you getting the job at Lawrenceville with no teaching experience. Or the time we were upgraded to business class when we were flying back from Paris. They were all highly unlikely, too.” I was hoping we’d someday think of Penny’s extra chromosome in that category, the highly-unlikely-but-nevertheless-good category. Instead of the I’m-so-sad-this-happened-and-why-me category.
Peter sighed. “Well, you aren’t getting pregnant anytime soon, right? Let’s just see what happens.”
I nodded my agreement, but I didn’t feel settled after our conversation. The following week, the three of us would head to Philadelphia for our appointment with a genetic counselor, and I knew the topic of other children would come up. I tried to prepare myself. On the phone with Virginia, I rambled about our chances of having another child with an extra chromosome. And I said, “I wouldn’t rule out getting pregnant again just because we might have another child with Down syndrome. Having Penny has been good. She’s healthy and happy and we love her so much.”
And Virginia responded, “Yes, the tragedy for you has been emotional, not physical . . .”
I didn’t hear the rest. All I could think was, You just called my daughter a tragedy.
Later that same day in a similar conversation, I told another friend that I knew the chance of recurrence. “But,” I said, “perhaps the geneticist will be able to tell us something more specific.”
My friend responded, “And if you do have a high risk, then you have good options. You can always adopt.”
And I immediately thought—Right. We wouldn’t want to risk having another child like Penny.
I also attended my first of the Friday morning coffees for mothers of young children with Down syndrome. There were four other moms present that day. Penny, the youngest of the children, had fallen asleep on the drive over, and she napped in her car seat carrier for most of the morning. I put together a plate of fruit and a bagel and sat down next to Catherine, whom I remembered from our first meeting at the Arc a few months earlier.
“How’s Penny doing?” she asked.
“Pretty well, I think,” I said. “She’s a really easy baby. I don’t have any other kids to compare her to, but still.” I shrugged.
“It’s a well-kept secret,” said Lydia, turning to face us. “Jayden’s been much easier than either of his older siblings.”
“We are going to CHOP next week to meet with a genetic counselor. Did you all do that?”
Catherine pursed her lips. “Don’t expect it be uplifting,” she said. “Margaret was diagnosed prenatally, so we saw a genetic counselor then. It was terrible. She told us Margaret had something worse than Down syndrome.” Catherine was sitting cross-legged on the floor, and Margaret, now two, played with a set of blocks nearby. “I had an amnio—actually, two amnios—and both showed an absence of her first chromosome. They told me she would die in utero or a few days after birth.” She glanced over to Margaret and smiled, but there was anger in her eyes. “We don’t believe in abortion, but I also didn’t want to traumatize Christopher with a dead little sister. In the end, I couldn’t bring myself to do it, and so she was born. The amnio was wrong.” She skimmed her hand along the top of the carpet. “The genetic counselors don’t know as much as they might think.”
The stories flowed from there—Lydia had a good experience with a prenatal diagnosis and was supported by her doctor when she chose to continue the pregnancy. Tears streamed down Alicia’s cheeks when she described the day, at seven months’ gestation, when the doctors told her Ella had fluid around her lungs, a heart defect, kidney trouble, and signs of Down syndrome. The extra chromosome remained, but none of the health complications were present at birth. “I see it as an answer to prayer,” she said, wiping her cheeks.
Samantha let out a loud sigh before she began. “Tim was away on business in Europe. I was eleven weeks pregnant and I got a call from a nurse.” She was sitting across from me, but her eyes were focused above my head. “The nurse said I had a one in twelve chance of having a baby with Down syndrome. And then she said I could schedule a procedure for the next morning.”
I looked around the room at our children—Penny asleep; Jayden, six months old, happily lying on his back; Elizabeth, Ella, and Margaret smiling and babbling and reaching for toys.
And for a moment I wished we could have known ahead of time, just to say that we had chosen her, like these women—against the advice of the doctors, against the assumptions of the culture. I glanced at Penny again. I choose to receive you, my child.
———
We drove to the appointment a few days later. It was a lovely afternoon—springy and sunny. Penny slept the whole way. It soothed me to look at her peaceful face, to think of her earlier that morning, cooing and smiling and resisting tummy time.
My smile waned as we began to navigate the hospital. Through the parking garage to the elevator to the information desk. Down a hallway and over a bridge. Up the elevator to a receptionist to another receptionist to the waiting area. We were surrounded by children and their families. I tried to keep myself from staring. Still, I catalogued—a child in a wheelchair making grunting noises, a child with a backpack holding tubes that reached under her shirt, a young boy with leg braces, a young girl with facial deformities.
We waited ninety minutes for the doctor. Her appearance surprised me—gray hair, a hint of a mustache, a short, plump body. A gentle demeanor, but she spoke quickly and directly. She lay Penny on the crisp white paper of her examination table and started to manipulate her arms and legs. Then she flipped through Penny’s chart, scanning my handwritten answers to the form she had provided.
She handed Penny back to Peter, almost as an afterthought, her eyes directed toward the form.
“Okay. First things first. See her eyes? She has an extra fold of skin. It’s called an epicanthal fold. And you may have noticed the line across her palm? And the fact that she does some tongue-thrusting? Those are all consistent with a diagnosis of Down syndrome. I know you already have her karyotype, but part of this visit is to offer official confirmation. Your daughter has trisomy 21. So there it is. Good news is that her muscle tone is good. Her home environment is good. And her karyotype indicates that this isn’t a case of translocation, so your risk of recurrence is 1 percent and increases with age.”
I sat up straighter in my chair. Had I noticed the line across Penny’s palm? I wanted to tell her that I had memorized that palm, the creases in her elbows, the dimples in her pudgy cheeks . . .
“Now,” she said. “The bad news. Down syndrome means mental retardation.”
I interrupted, “Does her physical development tell us anything about her mental ability?”
“No. Typically individuals with Down syndrome have an IQ that falls between 50 and 75, but you won’t know where she is until she’s older, between the ages of two and three. It is rare for them to have an IQ below 50, which would mean she wouldn’t be able to dress herself or toilet. It is also rare to have an IQ above 75. Somewhere around 70 brings with it semi-independence. Even then, she’ll have trouble with problem solving and with numbers. As a teenager she might be able to walk herself to school, for instance, but if there was ever a detour, she wouldn’t know how to get home. Or, for example, one girl I see with Down syndrome can do addition, but only by counting it out on her fingers.”
She said, “You should also know that your risk of having another child with Down syndrome is 1 in 100, and that it increases as you age.”
I held back from saying she was repeating herself and instead asked, “If I did have another child with Down syndrome, do we know whether that child would be as healthy as Penny?”
She shook her head, holding her clipboard tight to her chest. “No. There is no guarantee whatsoever. And I will say that having two children with special needs can put a great strain on a family. If you get pregnant again, I recommend an amniocentesis.”
I couldn’t bring m
yself to ask her why. Because we would certainly terminate a pregnancy if we discovered we were having another child with Down syndrome? Because we were irresponsible to bring this child into the world? I didn’t want to explain that for us the choice came before conception. That had we known about Penny’s trisomy 21 even on the first day of her life as an embryo, we would have kept her. That we would do the same again. Because we believed there was purpose in her life, as she was.
On the car ride home I curled up in a ball in the passenger seat, hugging my knees toward my chest. “I just want good stories,” I said to Peter. “I want to hear that this kid with Down syndrome loves the tuba and this other one loves playing golf with his dad and this one had a hard time with spelling but loves to dance. Or whatever it is. I don’t want statistics and predictions of who she will never be. I just want stories.”
———
That night, we put Penny in her swing while we ate dinner. She giggled and her eyes got wide as the lights over her head flashed—red, yellow, blue. I thought about all the ways she was already telling us about herself. The frowns when a dog barked nearby, the cries when she needed attention or rest or food, the inquisitive look when she sucked her fingers, the smiles when Peter or I came near.
After dinner, as we were clearing the dishes, Louis Armstrong came on the radio. Peter pulled my arm and said, “Shall we dance?” He twirled me around the kitchen, dips and spins and our bodies pressed against one another with my cheek resting against his chest, the warmth of his hand upon the small of my back.
And then he whispered, “I need to let Penny cut in for a minute.” He lifted her out of the swing, all nine pounds of her, and held her against his body. Her eyes sparkled as he twirled her around.
Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny Page 9