Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny

by Amy Julia Becker

  “Amy Julia,” Virginia said. Her tone of voice alerted me that a serious comment was on its way. She held my gaze for a minute before she looked down at our plate of cheese and crackers. “Sometimes I feel so self-conscious when I talk to you about Penny. I’m afraid I’ll say the wrong thing, and I’ll hurt you. I get so awkward.” She sat back and took a sip of wine. “I mean, like in the bath tonight. I didn’t mean to say that thing about Penny freaking out. I wouldn’t have said it if she didn’t have Down syndrome. I just felt stuck—like what if I’m being insensitive for not asking, but what if I’m making a false judgment if I do ask. . . . I guess I’m just hoping you’ll believe me when I say I’m trying.”

  I opened my mouth, but then I closed it again. I hadn’t realized that the bath comment was unusual. Virginia had three kids, so I figured she was just thinking of Penny as an only child who hadn’t bathed with a baby before. I was about to dismiss her comment altogether, but I thought back to other things she had said in the past. Like the time she had told me Penny was my “cross to bear.” The thought had struck me as somewhat absurd—the image of lugging Penny around like a burden of grief or guilt or punishment. Or the time she had said it was a relief Penny wouldn’t know that she was different when she got older. I had wanted to snap at her then. What, she won’t be smart enough to know people are making fun of her? She’ll be too much of a sweet Down’s kid to feel sad? But even at the time, I knew she was trying to understand, and so I had disagreed as gently as I knew how. I still remembered the comments, but they hadn’t gotten in the way of our friendship.

  Virginia said, “See, here I go again. I’m trying to figure out what’s going on with you right now, and I can’t read your face.”

  I smiled and pulled my legs under my body. “Start with not being so worried. Really. We’re fine. I actually had no idea that you were being weird about the bath earlier, for better or for worse. I’m just trying to think of how to respond.” I tapped my finger against my lip. “Okay, the thing is, you have said things that have hurt me in the past. But what I love about you and about our friendship is your candor. I love it that you speak your mind and that I don’t have to second-guess what you’re thinking. I love it that you don’t hold back. A lot of what you have to say is exactly what I need to hear. I’d rather have the hurtful stuff, or the awkward stuff, or whatever, and trust that it will work out in the end.”

  I munched on a cracker for a minute and then said, “I read a book recently that distinguished between pity and compassion. The author said that they can seem very similar, but pity is when someone looks at your life and says, ‘I’m so sorry.’ And the way they say it involves a distancing mechanism, as if they’re holding up a hand to stop you from getting any closer. And what they really mean to say is, ‘I’m so glad that’s not my life.’ I feel the pity people have for us. Like when someone comes up to me at church and says, as if my mother just died, ‘I’m praying for you all,’ and pats me on the arm. I can tell that they aren’t with me. They just feel bad for us.

  “The difference is that compassion also says, ‘I’m so sorry,’ but it says it as a way of moving closer, of sharing the burden, of coming into the life of the person in need.” I thought about a man at church who said hello to Penny with a big grin every week and how when he said, “I’m praying for you,” I received his words as if they were a hearty meal on a cold day. Virginia’s presence was like his. Safe and loving. I said, “And even though you haven’t always said the right thing, I know that everything you’ve said has been out of compassion. It has always been trying to get closer, trying to understand, trying to be in this with me. I get that. And I’m really grateful for it.”

  Her face softened. “Bear with me, okay?”

  ———

  The next day we were sitting on the floor in the playroom. Once Kristin was down for her nap, Penny scooted next to Virginia. She signed, Read, please, and they sat together for the next twenty minutes, paging through book after book. I felt relieved that they could interact so naturally, and yet I also found myself about to jump in. It was as if I wanted Penny to perform—to prove all the things she could do, the new signs and colors and sounds. But I kept my mouth shut as Penny climbed into Virginia’s lap and listened to my friend read her a story.

  We all took a walk later that day. Penny, as always, sat forward in her stroller, poised to greet anyone we passed. Kristin batted at the toys above her head.

  “Tell me how your kids are doing,” I said. Virginia had two older children—her daughter was five, and her son was almost three, a year older than Penny.

  “They’re great. Being with Penny makes me miss James, actually. I wouldn’t have said it at first. He’s really physical. He’s been walking forever, and he’s huge compared to her. But he’s really social, just like she is. Actually, Penny has a bigger vocabulary than he did a year ago, and she certainly likes books more than he does. Sarah’s doing well, too. She’s five going on thirteen, so we’re wondering if it would be good for her to be in an all-girls school.”

  Penny looked up at me and pointed. She made the sign for squirrel.

  “That’s right, sweetie. I see the squirrel.”

  “Amy Julia,” Virginia said. “I know you don’t like this word, but I’m going to say it anyway. Your daughter is not retarded.”

  Once again, I didn’t know what to say. I finally responded, “I used to think the words mental retardation meant that everything in Penny’s life would be slower. But now I just think that I have a child with some physical delays who will probably have some learning disabilities, but we don’t know what those are.”

  We returned to the apartment an hour later, cheeks rosy, our noses cold to the touch. I carried Penny up the stairs to our apartment and she scooted into the living room. I followed after her, and something on the windowsill caught my eye. It was the orchid. A shoot had begun a few weeks earlier, and now a bud had appeared. I shook my head. There was more growth to come.

  20

  Penny was given a Madame Alexander doll and stroller today. Little did the giver know how appropriate a gift it was, but as Penny is happy to tell the world: “There is a baby in Mommy’s belly!” (She does this through signing, with the sign for baby, pointing to my belly, and then saying “Baba,” her name for me.) We’re expecting Becker #2 around August 12, and, from what we can tell, Penny is very excited to be a big sister.

  February 2008

  At the end of October, Penny had taken three independent steps. She was just shy of twenty-two months old. We cheered and called family members and announced the achievement to everyone we knew. Penny started to pull herself up and immediately let go of the support just to revel in the independence of standing on her own two feet. It only compounded our delight to see the big smile across her face.

  Those steps brought me back to the first meeting we had attended with the other parents of young children with Down syndrome, and I remembered the pit in my stomach when I heard about the eighteen-month-old who wasn’t crawling or walking. Back then, I had vowed that Penny would be different, as if somehow it was a mark of shame to have a child who didn’t walk at the time most pediatricians would predict. But I had grown accustomed to the idea that Penny wouldn’t walk until she was at least two. More than that, I had learned why she wasn’t walking. I could see how hard it was for her to control her limbs and coordinate their movements. It was as if every gross motor skill consisted of ten components. Most kids went through numbers one through ten all at once, with a little trial and error. For Penny and other children like her, each component took work. So those three halting steps, in my mind, were an even greater accomplishment than they would have been a year earlier with a different child.

  That fall, Penny and I spent much of our time in the playroom with a space heater nearby. The sunlight had begun to wane in the afternoon, and the cool air rushed through the grand old windows in our apartment. Three days a week, a different therapist joined us for an hour of ins
truction. Missy continued to work on Penny’s gross motor development—walking and learning to use her core muscles. Sharon used “purposeful play” to challenge Penny’s cognitive skills. They matched shapes and built blocks and read books. Carolyn worked on Penny’s speech.

  I could only assume their presence was making a difference. In November, Penny said “Mamama” for the first time, and she managed a “moo” (up until then, cows said “mmm”). She picked up a baby one day and said “wawa,” and entertained her dad when he walked in the door with her impression of a gorilla, “hoo hoo,” and corresponding arm motions.

  Penny was becoming her own person, enjoying the world in her own way, whether by counting pieces of toast, sitting on the floor of her room and “reading” books, pleading for one more round of Tickle Me Elmo, or doing the motions for “Head, Shoulders, Knees, and Toes.” She started saying “yeah,” with the inflection of a teenager, and “wow” as often as possible. I no longer felt that old ache of fear and worry and guilt underneath the love and pride and joy. It was fun just to be with her.

  As Penny approached her second birthday, I discovered I was pregnant. That, too, felt different from the year before. The line on the test was an unambiguous blue. I felt confident from the start that this baby would make it. I didn’t tell anyone, though, other than Peter. We celebrated Christmas and Penny’s birthday and I hugged my midsection and thought about the bundle of cells inside, cells that already had multiplied enough to form a heart and a teeny body, cells that were becoming our son or daughter.

  In early January I had my first prenatal appointment with Dr. Mayer. “Congratulations!” she said. “Let’s go ahead and get an ultrasound scheduled so you can see the heartbeat.”

  I smiled at the thought.

  “And we need to talk about prenatal testing.” Her words, as upbeat and matter-of-fact as they were, nonetheless made me feel uncomfortable.

  “I don’t need to know if the baby has Down syndrome,” I said. “But I do think we should try to find out if there are heart defects or other physical abnormalities.”

  She nodded and leaned back against the wall. “Have you and Peter talked about this? Sometimes, you know, it’s different for each member of a couple.”

  I liked Dr. Mayer, but I hated having to defend our choices. I knew she was trying to help, trying to make sure that I didn’t do something I would regret, but I wanted her to trust my marriage, to trust our love for Penny, to trust our faith that every human life was a gift, no matter how it arrived. I closed my eyes for a moment. “I’m sure he agrees with me,” I said.

  “Okay. Then let’s have an ultrascreen at eleven or twelve weeks,” she said.

  “I’m not sure that’s necessary,” I replied. I had heard about ultrascreens from a doctor friend. They were a new kind of test that identified Down syndrome early on in pregnancy. To me, they seemed like a way to arrange for an early abortion if the markers were positive.

  She pushed back. “It’s a test that looks for Down’s, yes, but it also takes a detailed look at the heart. It’s just a way of getting more information.”

  I swallowed hard. “Okay.” I was unable to shake my sense that a cloud had passed in front of the sun.

  The shadow persisted throughout the pregnancy. Despite the excitement of it all, I felt as if I had to don a protective vest before entering the world of medical and cultural assumptions about what type of baby I would want, about who would be acceptable to me.

  I wasn’t worried about the baby having Down syndrome in a general sense, but I was worried about having a baby with major physical complications. I went into the ultrascreen appointment fearful of heart defects, and I lay on the table with cold blue gel across my abdomen, trying to keep my breathing calm and even.

  The technician showed me the baby’s beating heart and talked me through it as she measured the baby’s body parts and drew my blood. “I’ll be back with the doctor in a few minutes,” she said.

  When he arrived, I was certain he was about to deliver bad news. But he said, “This baby’s heart looks fine,” and my whole body relaxed. “There are no markers for Down syndrome that I can see, but that’s better determined through the blood test.”

  Later that day, we told Penny that I was going to have a baby. She clapped her hands and touched my belly, and I wondered, Why wouldn’t I want another child just like her?

  A week later, a nurse called to give me the full results of the ultrascreen. “You have a one in ten thousand chance of having a baby with Down syndrome,” she said.

  “Oh,” I replied. My first reaction was one of disbelief, almost of protest. I wanted to say, “But I don’t know how to raise a child without Down syndrome.” Instead I said, “Thank you.” I hung up the phone with a strange sense of disorientation, as if for a moment I didn’t know where I was standing. In the kitchen, I told myself. You are standing in your kitchen and this baby does not have Down syndrome.

  The pregnancy continued without incident. I soon unearthed my maternity clothes and pulled out the prenatal yoga video. In mid-March, Peter joined me for a Level Two Ultrasound. Through another series of conversations with Dr. Mayer, I had refused an amniocentesis, but I agreed to the more intensive ultrasound as yet another way to identify any potential physical abnormalities. Throughout the exam, the technician reported on each body part as she scanned it. “Perfect,” she said, again and again.

  The genetic counselor was less certain. “You do know that these tests are only 85 percent conclusive in identifying Down syndrome?”

  “Yes,” I said. “We understand. We don’t think any further tests are necessary.”

  Peter squeezed my hand, and I could only imagine we were sharing a memory of the day, almost three years earlier, when we had thought a Level Two Ultrasound was foolproof. Peter said, “We’re grateful for the baby, no matter what.”

  Just as we had with Penny, we asked the technician to write the baby’s gender on a piece of paper. Peter and I sat on a bench in the hallway together, side by side, and opened the envelope. “It’s a boy!”

  “It can’t be a boy!” I said.

  Peter laughed. “Why not?”

  “I don’t know what to do with a boy!” I smiled as I said it, but I also felt a growing sense of disbelief. Somehow, as the oldest of four girls, I didn’t think it would be possible to raise a boy. “I mean, diaper changes and potty training and activities and everything else . . .”

  “It will be great,” Peter said. “He will be great. You will be a wonderful mother.”

  I leaned against his chest with a smile, hands laced across my middle. “I hope so,” I said. “At least I know he will have a fabulous big sister.”

  The next morning I dropped Penny off at school. It was raining, so I kept my head down as I hurried back to the car. A colleague of Peter’s, a biology teacher, called across the parking lot, “I didn’t know you were expecting!”

  I grinned and patted my round belly, “Hard to miss. I’m at the halfway mark.”

  I opened the car door and wiped water from my face. But she walked toward me and continued, “I assume you’ve done all the screening on this one to find out, if, you know . . .”

  “Well, we found out that we’re having a boy,” I said. “But I’m not having an amnio.”

  “But then how will you know if this one has Down’s? I mean, when I was having kids, I was already in my late thirties, so I had to have the amnios. It wasn’t even a choice.”

  I could feel the water trickling down the side of my face. “You know, we’re really happy with who Penny is, so we’re just not that worried about having another child with Down syndrome. It isn’t necessary information for us.”

  “But Penny has a really mild case,” she said.

  I pulled the hood of my jacket back a bit so I could look her in the eye. “Penny has an extra chromosome in every cell of her body. And she’s walking and talking and doing really well.”

  She stared right back at me. “But aren�
��t you at risk for having another?”

  “I know exactly what the risks are.” I felt as though I was in a contest between two kids, waiting to see who would blink first. “I’ve got to get out of the rain,” I said.

  As I drove home, I told myself she just didn’t understand. She didn’t mean to suggest that Peter and I wished our daughter didn’t exist. And yet that implication rose to the surface every time I was asked about the tests we were doing for the baby in my womb.

  I wanted to go back to the parking lot and shake her. I wanted to force her to spend a day with Penny, to watch as Penny told me what she did at school, and the names of her friends, and what she would like for her afternoon snack. I wanted to list all the ways Penny was like other two-year-olds, eating with a spoon and fork, albeit messily, learning her shapes, giving lots of hugs. And I wanted to tell her that asking whether I was at risk for having another child with Down syndrome was akin to asking whether I was at risk for having another child with brown hair, with gorgeous green eyes, with Peter’s hand-eye coordination or my love for books. It implied that Down syndrome was something separate from Penny, something that could be extracted, if only we had the proper tools and procedures. But that extra chromosome was intrinsic to Penny’s being. To take away Down syndrome would be to take away my daughter.

  The same sentiments had come up before. “Aren’t you brave to have another child!” from one acquaintance. “Lightning never strikes twice!” from another. And, “Of course, you’ve done all the testing this time,” as if we had been naïve consumers the first go-round, and now we were seasoned professionals. But we didn’t have buyers’ remorse. And Penny wasn’t a product, an object of consumption. She was a human being, with her own particular challenges and her own particular gifts.