“Straight and still?”
“Yep. We need to make sure that her wounds don’t open up or bleed too much or cause her to lose circulation.”
I nodded, wondering if my face betrayed me. Oh. That’s all. Explain to my fourteen-month-old daughter that she should lie still for six hours. Of course.
Penny was sleepy at first. She gave us a little wave, but no smile. Her eyes were bleary, she had pressure bandages on both legs, five wires connected to her chest, a blood oxygen monitor, a blood pressure cuff, and an IV. Her skin looked pale, her body limp. Then she began to wake up, and she also began to fight. All the color drained from her face and her lips and she vomited. Her tongue hung out of her mouth. But soon she settled down and dozed. She was never fully asleep. The whole time, if Peter or I moved away, her eyes fluttered open and she would struggle until she could feel the assurance of one of our hands upon her own.
We took her home that night. I was relieved to drive away, relieved to know that this little hole that only a few years ago would have required a surgical incision and a week in the hospital, this little hole that decades earlier would have guaranteed early death, this little hole was closed forever. We would return for an echocardiogram in ten days just to be sure. After that, she needed to be monitored every three to five years. But my relief went beyond my concern for Penny. I was also relieved to get away from the bright white linoleum floors and the beeping monitors and the sadness. The room with a message on the window: Happy 13th birthday, Laura.
The next day Penny slept more than usual, and I winced to see the bruise that covered most of one of her thighs, but otherwise she seemed like herself. She repeated her feat of the previous morning and signed, Eat. Already, she had more energy. She started to hurl herself backward when sitting up, usually with a quick glance behind to make sure she would land on a soft surface. She stood at the ottoman, needing less support than ever. She started to make sounds I hadn’t heard before.
Missy, the therapist who had known her the longest, came for her weekly visit three days after Penny’s time in the hospital. They went through their normal routine—moving from sitting to stomach, rolling over, pushing herself back to sitting, pulling herself up to stand. Then Missy looked at me with a smile. “This child is ready to do physical therapy.”
“What do you mean?” I frowned, thinking back to the work we’d been doing for the past year.
“That heart procedure made a huge difference. She’s so much stronger already.”
It made sense. Penny’s body had been working inefficiently, and now the blood was flowing where it was supposed to. But it still came as an unexpected gift. I had thought the procedure would simply prevent illness later in life, not give her energy today. It inspired me. When Missy left, I set up an appointment to have Penny fitted for ankle braces, and I contacted a man who made mini treadmills for kids with Down syndrome to help them learn how to walk.
Penny’s cognitive abilities seemed different after the surgery, too. She was already on the road to signing, but throughout the month of March her learning accelerated. Within a week she had added more and get down to her signing vocabulary. And then a few weeks after that, I was trying to get her to move from sitting up to lying on her stomach, so I placed a toy just out of reach on a blanket and went into the kitchen for a glass of water. When I returned, she was still sitting up, and she had the toy. Instead of toppling over to grab it, she had pulled the blanket closer. She had outsmarted me.
I thought back to that visit almost a year earlier with the genetic counselor who told us Penny would never be able to problem-solve. She had given the example of Penny walking to school. She said Penny would be able to memorize the route, but she wouldn’t be able to figure out an alternate route if for some reason her regular path were obstructed. But this toy in her lap seemed like pretty good problem solving to me.
It wasn’t long before Penny was putting her signs together. More drink. More book. And then came the moment. It was mid-April and a nor’easter was pummeling the East Coast. After her nap, I held Penny on my hip and we looked out the window at the storm. “Look, Penny, it’s raining,” I said, and I demonstrated the sign for rain, my fingers wiggling down through the air.
She looked outside, looked at me again, and mimicked my motion.
Then I pointed to a tree. “Tree,” I said and pivoted my arm from elbow to hand. Again, she looked, thought, and mimicked.
And I knew that something had changed. She wasn’t learning by rote anymore. Something connected in her brain and helped her understand that every object had a corresponding word. From then on, instead of spending a week working on a single sign, she picked up words every day. Before long, her signing vocabulary went from a dozen to fifty or more. I bought a Dictionary of American Sign Language to keep up.
In the midst of Penny’s growth spurt, I read a book by Michael Bérubé called Life As We Know It. Bérubé was a professor of English, and his book contained his philosophical and practical reflections about Down syndrome in general and about his son Jamie in particular. In one chapter, Bérubé discussed the sociology of Down syndrome. He explained how our “scientific” understanding of trisomy 21 had changed over the course of the twentieth century. For example, parents who had a son or daughter with Down syndrome a century ago were told, in contrast to the average IQ of 100, their child would have an IQ between 20 and 40. Doctors stated that these kids would be “profoundly mentally retarded,” would never speak or read, never solve problems, possibly never learn to walk. Down syndrome was a tragedy. By mid-century, parents of children with Down syndrome were told to expect an IQ between 40 and 60, with possibilities for walking and talking, but no chance of independent living and a drastically curtailed life expectancy. Now Penny’s life expectancy was double that of a child born with Down syndrome even twenty years earlier. And literature from Dr. Post told us to expect an IQ between 60 and 80. And I had to wonder, Who knows what doctors will be telling parents of children with Down syndrome in another thirty years?
When Penny was born, expectations I didn’t even know I had rose to the surface and were shattered by the words mental retardation. In the early months of her life, I had reset those expectations. I came to peace with the idea, or, as I then believed, the reality, that though Penny’s intelligence would be limited, her spirit could soar. I grew accustomed to the thought that Penny wouldn’t ever be “book smart,” but that her personality and her “emotional intelligence” would be off the charts. And that seemed fine to me, even somewhat exciting and good. But Bérubé’s simple progression of IQ predictions suggested I should give up any attempt to predict Penny’s limits going forward.
She began to achieve many of her developmental milestones “on time.” She showed her knowledge of the purpose of common objects by tapping her socks to her feet. She demonstrated an understanding of cause and effect by turning on and off light switches. She learned new words. I had to adjust my expectations again. And this time I said, Who knows? Who knows if my child will join a book club or love poetry? Who knows if she’ll sing in a choir or dance in a recital or speak in public? Who knows if she’ll drive a car or get married or have children of her own? Who knows if she’ll have a best friend or a boyfriend or sibling rivalry?
I didn’t know what she would be able to do, but I hoped for more and more. I understood that this extra chromosome of Penny’s would slow her down sometimes. But I was no longer willing to trust the experts who tried to tell me exactly how she would be slowed down, or to what degree. Instead, I was willing to wait and see. I didn’t have specific expectations for her athletic endeavors as a teenager or her college degree or her spouse. I simply expected that over and over again, I would be surprised, and delighted, by our daughter.
18
Every day it becomes more and more clear that Penny is not a “Down’s kid.” Penny is a child with wonderful and fascinating aspects to her personality. Penny is a child who knows and loves her family, who has a big v
ocabulary and loves books, who blows kisses to anyone who says hello, who is learning to climb stairs, and, oh, yes, Penny is also a child who has Down syndrome.
May 2007
In the late spring my friend Samantha called. “There’s a new baby with Down syndrome, and the parents want to get connected. I’m swamped this week—do you think you could call them back?”
“Sure,” I said. “Let me grab a pen and paper.”
I took their names and number. When I left a message, I found myself trying to tamp down my own enthusiasm. “This is Amy Julia Becker from the Down Syndrome Association. I hear you have a daughter with Down syndrome, and I just wanted to call to welcome you to our community and answer any questions you might have for another parent. My daughter is sixteen months old, and she’s a delight.” I left our number and hung up the phone. Penny was on the floor nearby, swaying to her reflection in the mirror.
Linda and John and their daughter, Hope, came over for Sunday brunch. Peter greeted them at the door and led them back to the kitchen. I held Penny on my hip. She waved and said, “Ha!” her version of “Hi!”
“Welcome!” I said.
“Here, let me get that.” Peter reached out his hand to take Linda’s diaper bag. Hope had been asleep in her car seat carrier, but by the time they made it to the kitchen she had opened her eyes. Linda picked her up, cradling Hope’s neck with her hand. I remembered Penny’s floppiness at the same age, the way her head would lurch back without warning. I hadn’t realized how much stronger she was now.
Linda and John sat down at the kitchen table. Her body looked as rigid as the straight-backed chair. I wanted to hug her and say, “No really—it will all be fine. Your daughter will be your pride and joy. Don’t worry!” But I knew that the same words to me a year earlier would have sounded impossible.
Hope was five months old with curly black hair from her mother and round cheeks from her dad. For most of our time together, she sat in Linda’s lap without making a sound.
Penny sat in her high chair, banging her hands and babbling. “Baba!” she said.
“What, sweetie?”
She signed, Eat.
“Penny’s been learning sign language,” I said to Linda and John. “It’s such a gift because we can understand what she needs.”
Linda nodded and gave a tight smile. I recalled the feeling when I first met kids with Down syndrome who were a little older than Penny, how I had wanted to run away, how I had resisted the thought that we might need sign language to communicate or that walking would take a long time or that therapists would be a part of our daily life.
John said, “So, how did you find out that Penny had Down syndrome?”
We shared our stories and discovered that they were like us—they didn’t learn Hope’s diagnosis until after she was born.
“You know,” I said, cracking eggs as I talked, “I don’t think about Down syndrome all the time anymore. It might seem strange to say that because it is certainly part of our everyday reality, with the therapists and doctor’s appointments and all the rest. But it’s different than it was a year ago.”
Linda nodded, but she looked skeptical.
Penny smeared yogurt on her cheeks.
I said, “Like the other day, the women who help clean our apartment were here, and I walked into the room. They were holding one of the books we have about Down syndrome and pointing to a little boy on the cover. They seemed so embarrassed when I found them. And I realized that I used to feel embarrassed when people saw that Penny had Down syndrome. But now I want them to know that this is what it can look like.” I put down the eggs and motioned toward Penny. “This happy little girl with yogurt in her hair who says hi and is learning sign language and loves giving slobbery kisses. This is what it looks like to have Down syndrome.”
Linda and John stayed for about an hour. They asked about therapists and insurance plans and doctors. We told them we’d be happy to help in any way we could. But I also knew that Hope was going to be the one to help them. She would grow up and love them and they would find that their love for her was enough to replace the sadness and the fear. And all the things that seemed so overwhelming would become normal.
After we walked them to the door, I turned to Peter. “You know, Samantha was telling me the other day about when she first got connected to the Down syndrome group. It was late spring, so I guess two years ago, and the first thing she was invited to was the picnic. She said she cried all day at work, and she kept telling people, ‘But I don’t want to be invited to a Down syndrome picnic!’ And now she’s going to be a member of the board. She said she can’t wait for the picnic this year.”
Peter nodded. “I never thought this would be my life. But I love it.”
He kissed Penny and held both hands to the side of his cheek, the sign for nap. “Time to go night-night?” he asked her. She held out her arms.
———
Our time with Linda and John highlighted for me how my view of the world, and of Penny, had changed. But often I forgot that the same transformation hadn’t occurred in the people around me. The following weekend, we had three couples over for dinner. Someone asked about Penny’s recovery from her heart procedure, and I launched into a description of the past two months. “It’s pretty incredible,” I said. “She’s signing a ton and getting stronger and stronger on her feet.”
Peter chimed in, “Have you seen her treadmill?” The mini treadmill had arrived, and Peter had made it his mission to get Penny up and walking. We had set up a big mirror so she could see herself, and after a few weeks of getting steadier on her feet, Penny had started to love it. Peter said, “She’s up to three miles per hour, and it’s the cutest thing—every so often she lets go of the bar with one hand and waves to herself in the mirror.”
Everyone smiled as Peter mimicked Penny’s gestures—her happy expression and delicate wave.
“What’s amazed me,” I said, “is how much repairing her heart seems to have increased her cognition.” I recited the information I had learned recently about IQ and then added my own thoughts: “Penny’s generation of kids with Down syndrome is so different from the past. They have Early Intervention and they live at home, not to mention all the medical breakthroughs. I wouldn’t be surprised if Penny or some of her peers with Down syndrome grow up with normal intelligence.”
I could almost touch the discomfort. It wafted through the air like the stench from an open garbage can. One friend lowered her eyes. Another stole a glance at her husband. He said, “But isn’t it a false construct to talk about normal intelligence?”
And then his wife: “Haven’t you talked a lot about wanting to value things other than intelligence?”
“Yes. Of course. But I just think Penny might be capable of a lot more than we were told when she was first born. Like the genetics counselor who told us she wouldn’t be able to add 9+6 without counting on her fingers . . .”
One of the men interrupted, “My wife still has trouble adding 9+6 without counting on her fingers!” Everyone laughed.
I felt myself retreating. It reminded me of my freshman year in college, when I announced to my new friends that upon graduation I would be marrying Peter, who was a senior in high school at the time. Back then, I had seen those same looks—the sympathetic glances, the gentle attempts to make sure I didn’t have my hopes in the wrong place. Now I could imagine the unspoken comment, “Sorry. Your kid is retarded. It’s as simple as that.” Or, “Don’t worry. We all love her no matter her IQ.”
A part of me wanted to face it head-on, to protest that I had come to accept that Penny’s intelligence would be different from mine, that IQ wasn’t any way to measure a person’s worth, that I really didn’t care what school she attended or what grades she got. I wanted to protest that I knew the reality of Down syndrome in far greater detail than any of them—her floppy limbs and difficulty producing consonant sounds and the hearing deficit and raspy voice and all the rest. But I also wanted to protest that Pe
nny solved problems. She communicated. She loved books and music and people. I wasn’t willing to argue about it, but I also wasn’t willing to deny the reality that my “mentally retarded” daughter was smart.
———
A few weeks later, we were visiting my parents. Penny had gone to bed, and my mother’s book club was meeting in her living room. I entered the conversation at the end of the evening, and one of Mom’s friends asked about Penny. Mom and I kept interrupting each other to offer more. Mom said, “As a preschool teacher, it is just wonderful to see how much Penny is able to learn.”
I added, “She knows her animal sounds and body parts and she has over one hundred signs.”
Mom’s friend cocked her head and said, looking at me, “How nice. And does Penny know who you are?”
Just a minute earlier, I had felt like a grown-up version of my daughter, who tended to bounce in place from the excitement of being alive. But the energy leaked out of me as soon as she asked her question. I said, “Yes. My daughter knows who I am.” I gave a tight-lipped smile and walked away.
Another woman present said, “Do you think about other children? I’m sure it’s hard, since your daughter is such a challenge.”
I felt the mask slide into place. “We’d love to have other children. Thanks.”
A wall of disdain threatened to separate me from anyone who made an ignorant comment. As I walked upstairs, I told myself I wasn’t being fair. I wasn’t being gracious. I might have said the same things in the past. But their words stung, and I couldn’t let them go.
———
Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny Page 17