It had been a little over two years now since she died. And just as Virginia had said, the grief had softened. It didn’t have sharp edges anymore, couldn’t wake me up or interrupt my day. Her death seemed connected to this birth, in more ways than just sharing her name with her granddaughter. There was the unlikely nature of it. Grand Penny’s liver cancer came out of the blue. It was simply an unpredictable menace to her body that resulted in her untimely death. Just as it was unlikely that our firstborn child would have Down syndrome. And just as out of our control.
On the face of it, these were bad things. Cancer. Down syndrome. Yet there was such grace and beauty and goodness throughout the time when Grand Penny was sick. There was even beauty in her death, amidst the horror of it all. It was a time when heaven and earth touched, when we had a glimpse of life beyond this world, of color and music and celebration. Of love.
There was something in Grand Penny’s death that was linked to the birth of our daughter, that had even prepared us for her birth. Grief, yes. Grief over the loss of the baby we had expected. Grief over the difficulties and challenges she would face as she grew older. Grief over the loss of the life we thought we would lead together. But it was more than that.
At the end of Grand Penny’s life, I was able to tell stories of forgiveness and healing and transformation and friendship. If that could happen in death, how much more so now, in Penny’s life. It would be harder than I had ever imagined. And better, too. I had to believe that.
I looked at the pictures of Grand Penny again. There were four of them in all. Two were from her debutante year. In both, though she looked lovely, her smile seemed forced. In the third, a portrait from her days in boarding school, she gazed into the distance, her lips together. It was in the fourth picture that she stood as a mother, holding Peter on the day of his baptism. And there she smiled her smile, a smile of delight and abandon. I wished she were here to meet her granddaughter.
Mom wandered into the hallway. “Somebody’s looking for you,” she said.
Penny’s mouth opened and closed. Time to eat.
An hour later, Peter was already fast asleep with the light on. Penny was awake, calm, looking around our bedroom. I had a rush of gratitude—for her rustling noises and Peter’s breathing, his faithful presence. But even as the gratitude washed over me, the tears brimmed in my eyes. I couldn’t say why exactly—fear, anger, sadness, guilt, grief? The slowly growing realization that our lives would change more than we ever could have anticipated. The constant questions I had for myself, thinking back through the months of pregnancy and the tests and the ultrasounds and the delivery itself and wondering, What could I have done differently? And then the countering thought that her life, extra chromosome and all, was purposeful—even, somehow, good.
Trying to make sense of it was too much. I brushed the back of my index finger against her smooth plump cheek, rocking her back and forth, lulling my own thoughts to sleep. Back and forth, back and forth, back and forth. Sleep, my child. Sleep, my child. And the reminder that came in a gentle whisper, Whoever receives this child, receives me.
6
A friend with a Down syndrome grandchild remarked upon the blessing it was to us that we didn’t know ahead of time. It makes sense now that I think of it. Had I known, I would have prepared for Down syndrome. Instead, I prepared for Penny. I prepared for a child, a family, a gift—not a condition, a syndrome, a problem.
January 2006
Two and a half weeks into her life, we reached Penny’s due date. By then Peter was not only back at work full time, but he seemed unfazed by Penny’s diagnosis. After those first twenty-four hours in the hospital, he treated Down syndrome with a shrug of his shoulders, as if to say, “So what? She’s our daughter. That’s the important part.” I wasn’t there yet, but I had settled into a routine. Journaling every day. Getting outside for a walk. Nursing Penny every three hours or so, delighting in her noises as she sucked and swallowed, smiling at the milk dribbling out of her mouth as she gulped it in. I loved her soft skin against mine. I loved her features, her blue eyes watching shadows, her long eyelashes, her dimpled ears and fat cheeks. I loved being able to hold her with just one hand. I loved my love for her, a fierce, protective love that worked hard and around the clock to ward off my fears and doubts and questions.
But day after day, they found a way in. First I opened a letter from the hospital. This letter was written to inform you that your child failed a newborn hearing screening test. Please call to schedule an appointment.
Then the results of her blood tests came back. Just a few days after leaving the hospital, Peter and I had taken Penny back for a blood draw to confirm her diagnosis. The phlebotomist took one look at her and said, as if she were reprimanding us for our presence, “I will try once. If I don’t get any blood, you’ll have to bring her back when she’s older.” Peter held Penny, and I waited in the hallway as she screamed. But the technician had succeeded on that first try, and now I held a piece of paper that showed me Penny’s chromosomal makeup in picture form. I hadn’t ever seen a karyotype before, with the twenty-three pairs of chromosomes, numbers underneath. The chromosomes themselves were stumpy lines. It looked as if a child had taken a bunch of twigs and tried to pair them up on the ground. I scanned the image until I reached number 21. The twenty-first chromosomes were shorter than the others. And there they were, all in a row, like three men squatting side by side. I shook my head, not in disagreement, but with a strange sense of awe. Up until that moment, there was a part of me that thought it wasn’t true. There was still a part of me that had been hoping it was all a mistake.
A few days later, a member of the local Down syndrome society called. I felt confused throughout the whole conversation, even though she was as clear and kind as she could possibly be. “I got your name from Kathy at the hospital,” she explained, and I vaguely remembered one of our nurses saying she would contact a local support group for us. “I just want to welcome your daughter into the world and see if you have any questions.”
On a typical day my questions looped through my brain like the words at the bottom of a CNN screen. They were constantly updated and yet always seemed to go back to the same starting point. But now that I had someone who might be able to answer them, they had disappeared. “We’re doing fine,” I said. “Trying to take it day by day and just figure out how we’re supposed to handle all the medical stuff.”
“Well, remember that no other parents were sent home from the hospital with a list of all the things that might go wrong with their baby. It sounds like Penny is doing well, so just pay attention to that. You have plenty of time to figure it out.”
I started gnawing on the inside of my lip, knowing that she was probably right, but also wondering, Shouldn’t we have a therapist by now? If the first few years of brain development are the most important, aren’t we missing out already?
She interrupted my thoughts. “I also wanted to let you know that once a year, our organization has a new-parents’ meeting. I know it’s still early for you, but the meeting happens to be on Thursday night this week. Do you think you might want to come?”
I wrote down the information and hung up the phone. Fingering the slip of paper, I sat on our sofa for a while. Before Penny was born, Thursdays had been our date night. When we moved into the dorm, I had insisted on this weekly ritual. It was an escape from the inevitable knock on the door—a boy from the house requesting permission to go away for the weekend, a student handing in an assignment, a faculty member needing to discuss a kid in trouble. It was a refuge from the sounds of teenage boys wrestling in the corridor above our heads, from the parents who wanted to talk about their son’s grade in chemistry or his failure to call home yet again this week. And it was a reason to get off campus, a reminder of us as a couple, apart from Peter’s job.
The last time we had gone out to dinner was the night before Penny was born. I wanted to resume the pattern, but I hadn’t expected it to start with a Down syndrome
support group. The next two days, waiting for that meeting, felt like one big, deep breath of anticipation. Mom had gone home a few days earlier, but she returned to spend Thursday night. On the evening of this first outing, Penny lay in her Moses basket, gazing at a red lampshade overhead. Her Nana sat nearby, knitting a sweater for her granddaughter. She was in good hands.
When we stepped outside, the cold air felt like an affront. I squared my shoulders. Peter took my hand in his. We didn’t talk in the car. We were driving through an unknown neighborhood, craning to see street signs and find the parking lot. Our destination was the headquarters of the local Arc. I had looked it up online and I discovered that the name had originated in an acronym: The Association of Retarded Citizens. They dropped the acronym as the word retarded became more and more pejorative. Now it was just “the Arc.” When we finally arrived, the building was dark. It took us a few tries to locate an unbolted entrance. I squeezed Peter’s hand as we walked down the corridor, and a part of me was hoping that we wouldn’t find the meeting after all. But I heard voices coming from a room with an open door, and soon we stood in the doorway. Ten faces turned toward us. “Hello!” and “Welcome!” and someone motioned to two empty chairs.
I had hoped it might feel like coming home, but the tone of those cheery greetings sounded false. All but three of the people around the table were relatively new parents. We all had questions. We all had fears. We all were afraid of saying the wrong thing. And there didn’t seem to be anyone in charge. I had been in pastoral care classes at the seminary for two years, and I was tempted to pull out my training and ask everyone to go around the circle and share their name and where they were from and a high point and low point of their experience with their child so far. It all came out eventually, but it came in fits and starts, as if we were blindfolded—searching together, bumping into each other sometimes, groping in the dark at others. There were probably four different conversations going on at once. I caught bits and pieces.
Next to me sat Lydia. “How old is your child?” I asked.
“Three months,” she said. “And you?”
“She’s three weeks,” I replied. “Actually, her due date was just a few days ago.”
“Jayden came early, too,” she said. “I guess it’s pretty common.”
Peter was talking with the woman next to him, Catherine. I heard her say she had gone to the University of Virginia, as had he. Her daughter Margaret was a year and a half. They had been traveling to Baltimore to visit a developmental pediatrician, but recently a local hospital had opened a clinic for kids with Down syndrome.
We shared scraps of ourselves, and the thoughts and questions started to come out. I heard about occupational therapy and physical therapy and speech delays and feeding problems. Catherine wondered out loud when she should tell her five-year-old son that his younger sister had Down syndrome. All of us with new children sat back in our chairs, our bodies speaking for us, arms crossed. The two parents of teenagers in the room leaned forward, as if they had a secret to share. They talked about their children with obvious admiration—a daughter who worked three days a week at a local mall, a son who loved art class and dancing. But I was used to stories of high school students who were reading Dickens and Shakespeare, joining the debate club, scoring a winning goal for the soccer team. And I was used to those same students, and their parents, thinking they could always work harder and achieve more. I didn’t understand how art class and a minimum-wage job could even begin to compare.
Across from me sat Joe, playing games with his daughter Ella. She was the only child present, and I tried not to stare. “How big is Ella?” he said, and she threw up her arms. She caught my gaze with her bright eyes and cocked her head with an inviting smile. “She’s thirteen months old, and she’s not walking yet,” Joe said, eyes cast down, as if he were addressing the table. “Not even crawling.”
Tim, round-faced and British, replied. I could hear the pride in his voice, but I could only focus on his words, “Yes, Elizabeth isn’t walking yet. Actually she’s not really crawling, either.”
I smiled and nodded, as if to say, How nice. And that’s what I was thinking. What a nice group of people. How wonderful that your little girl can smile and throw her arms in the air and that your son can write a thank-you note. How nice. But underneath that thought and the frozen smile that accompanied it were the words, Please, not my daughter.
———
The next day I was on the phone with an old friend. She had four kids, and the youngest had been born just a few months before Penny. When I asked her, “How are things in your household?” she talked about being tired of nursing already and how the fourth time around it was easier to know what to do and harder to keep her household in order. I was refreshed by her candor, by the ordinary banter, and then she said, “Of course, it would help if my husband could get his act together. The other day, I fished another beer can out of the trash. It’s like he just can’t remember that we recycle. I mean what is he, retarded?”
My heart started pounding so hard that I didn’t hear the rest of the thought. I tried to force a short laugh, to pretend that it was nothing. She didn’t seem to notice the change.
After I hung up the phone, I sat with Penny. I leaned against the cushions, her head upon my knees, her body supported by my legs. I gazed at her—black hair and fat cheeks and crinkly ears and pink lips and ever-so-slightly upturned eyes. She was so cuddly and lively. She sat on my lap and wiggled her fingers and cooed. And already, she worked so hard. The night before, Peter had placed her facedown on the floor with his hands behind her feet, and, to a chorus of encouragement, she had pushed against his palms with a series of grunts and cries. She spent hours every day gazing at patterns and the face of any new person who stopped by. I still couldn’t believe those words that first had been uttered in the hospital and that showed up whenever I read information about Down syndrome: mental retardation. I couldn’t believe she would be slowed down, delayed. But that was our new reality, wasn’t it?
I thought back to the phone conversation, to the answer I hadn’t given my friend. No, your husband, who went to an Ivy League school and has a master’s degree, is not retarded. But my daughter is.
———
Every visitor seemed to bring with them a reminder of the distance. One day I mentioned that Penny had gained nine ounces, and one of Peter’s colleagues said with a smile, “Life. It’s all about cell division, cell division, cell division.” She had no reason to think that her words would fall like a blow. But for Penny, as each cell replicated itself, it passed along extra, abnormal genetic material. I feared Penny would, with time, be overtaken by that extra chromosome. That she would become less and less herself, more and more defined by her diagnosis.
At least once a day someone told me, “Down’s babies are so cute,” and I wondered if they could see Penny when they looked at her, or if they could only see her diagnosis—the pudgy face and tiny features and the extra fold of skin around the eyes. It felt as though everything came back to Down syndrome. “Down syndrome babies are so pleasant,” or “She will be stubborn . . . happy . . . an angel . . .” No one made such blanket predictions about other babies. It was as if instead of giving her credit for being delightful, Down syndrome got the credit. The extra chromosome got the credit.
And then there was the long line of people who wanted to insist that our situation wasn’t any different from most parents’. I would smile and nod when they said, “None of us can predict what will happen with our children.” I wanted to explain that part of what they were saying was true—none of us can predict whether our kids will break the law or fail a test or get mono, and it was no less likely that Penny would get hit by a car than Emma or Peyton or Hallie or Maddie. I wanted to pull out the lists and charts that said Penny would certainly need physical therapy, had a 75 percent chance of hearing loss, and a higher likelihood of childhood leukemia. I wanted to ask them if they had gotten an email recently about becomi
ng the legal guardian of their child when he or she reached eighteen years of age. Sure, none of us could predict the bad stuff. But I was walking around with guarantees of it. Guarantees that this little girl—whose cries calmed when I walked into the room, whose soft body nuzzled against my chest, whose delicate fingers curled around mine, whose eyes seemed to drink in the features of my face—that this delightful daughter of mine was going to endure a list of things that I would never choose for her.
A part of me wanted to run back to the Arc and reconvene that group of parents, to run away from all the generalizations and comparisons and careless comments, to declare that they were not only my new friends but my only friends, the only ones who could possibly understand. Instead, I found myself giving people permission to talk about Down syndrome. Even people who knew us well seemed to need me to bring it up, or else it became taboo—the topic on everyone’s mind without ever being broached.
And in the midst of all the visitors, all the information, all the frustration and words I wished hadn’t been said, I received an email from an old friend. It said, “I can’t wait to see the ministry that Penny will have.” It hadn’t crossed my mind that Penny would have a “ministry,” a means of giving to other people. And that simple sentence, with its hopeful words, made me realize that as much as I insisted that our experience was different from other parents’, and that our child was different from other children, different didn’t mean less than. Penny would give to us. She would not only be blessed. She would be a blessing.
Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny Page 6