An Uncomplicated Life Read online

  Kerry spent a decade at home, and she never strayed from the mission, giving her full attention to the smallest details. Every toy or game she bought for Jillian had some educational purpose. No mother-daughter conversation was ever frivolous. The books Kerry chose for Jillian were not simpleminded or designed only to entertain. They were educational or award winners. If Kerry could have found a Caldecott-winning alphabet book, she would have bought two copies.

  When she was in a hurry, she might have picked up Kelly and carried him upstairs for his nap. But she never picked up Jillian. She wanted Jillian to master the stairs herself. Eventually, that extended to social skills. Kids with Down syndrome are overtly, sometimes overly, affectionate. It’s endearing. It also adds to the stereotype. Early on, Kerry had Jillian shaking hands and making eye contact.

  She also worried that all the attention paid Jillian would make Kelly feel neglected. Kerry took Kelly to Jillian’s therapy sessions. She involved him in Jillian’s games. She told him how much she loved him.

  In ways subtle and profound, Jillian got something else from Kerry: An iron will she wielded like a magic wand. Jillian would always do what she set out to do.

  With Jillian, Kerry got the sibling she wanted for Kelly, but she also got to do the work she’d always wanted to do. How it came about could not have been predicted. Jillian was my daughter. She was Kerry’s monument. Construction was just beginning.

  CHAPTER 4

  Therapy

  We never had the luxury of being able to close our eyes and pretend.

  —FRANK DEFORD, FROM ALEX, THE LIFE OF A CHILD

  What they don’t tell you about having a child with Down syndrome, what they can’t possibly know, is that very quickly you develop a syndrome of your own. It is equal parts fear and determination, anguish and love. It produces an alchemy of hope and sadness, a strange human metallurgy that stiffens your spine as your heart cracks. You don’t know what to do. So you do everything, and even then, everything isn’t enough. But its purpose is to sew you tightly so the worry doesn’t win.

  We chased information. We kept moving. That way we eased our grief. We knew we couldn’t cure Jillian. We also believed it was worth the attempt. We became wrapped up in a measured mania. Not an obsession, just constant motion. You can’t drown in sorrow when you’re spending all your time swimming.

  We stayed afloat on the hope of the present. What can we do today to make Jillian better? The future became immediately and forever constricted. Our lives became a sports cliché. We took it one play at a time.

  We had left the hospital as soon as we could. A nurse had asked Kerry if she wanted to be moved from the maternity ward. “Why would I want to do that?” my wife had asked. “I just had a baby.” The implication was that the maternity ward was a happy place. Our presence was anything but. We didn’t want to stay anyway. It wasn’t a happy place.

  The hospital staff had offered mounds of literature. Armies of the well-meaning—doctors, nurses, counselors, volunteers from the local Down syndrome association—provided printed advice. “Here are some things you might like to know,” they had said. The pamphlets had titles like, “What Is Down Syndrome?,” “Knowing Your Baby” and “Up Syndrome.” We thanked them and threw the pamphlets in the trash. The writers knew their subject from a clinical perch; some even had firsthand experience. They did not know Jillian.

  Kerry and I had no desire to discover what Jillian wouldn’t do. Not that first day, or any day thereafter. We didn’t want anyone defining Jillian. We would leave that to her.

  “They didn’t give us that stuff when Kelly was born,” Kerry said. We were insulted and in denial, both. “I just assumed Jillian would do all the things everyone else does,” Kerry said. Tell us what she can do.

  We developed a few mantras that day. They would expand and evolve, but the resolve they implied never did. The sayings got us through the days. They were a banner that conspired against doubt and pain. We didn’t want to know what was behind the curtain. We didn’t want to know what was beyond the next five minutes. We plowed ahead, repeating phrases:

  All You Can Do Is All You Can Do.

  Nothing Is Definite.

  Let Jillian Be Jillian.

  And, above all: Expect. Don’t Accept.

  You should get what you expect. Not what you accept. For us, it was the difference between battling and settling, between daydreams and real ones. It is how we’ve helped Jillian become Jillian. Her limitations are obvious. What’s less apparent is how many of those limitations disappear when we expect better and more from her and from ourselves—and from everyone charged, however briefly, with Jillian’s progress. Jillian’s potential would not be tethered to anyone’s preconceptions.

  I read something not long ago in a book called Choosing Naia: A Family’s Journey by Mitchell Zuckoff. In it, a pediatrics professor at the University of Connecticut named Robert Greenstein, who was also director of the Division of Human Genetics at Connecticut Children’s Medical Center, is quoted as saying to the couple whose unborn daughter, Naia, had already been diagnosed with Down syndrome: “Nine out of ten things people are going to tell you about Down syndrome are going to be wrong. So it’s up to you. If you choose to have this baby, you have to be the expert. Take leadership. People are going to follow your lead. If you’re really positive about it, other people will be positive about it.”

  We too were overloaded with facts and figures in those early weeks and months. We’d see a geneticist and therapists of all types. Books were recommended and passed along, appointments were made. And we began to realize how different our lives would become.

  During Jillian’s first few weeks, when people didn’t know what to say, what we heard most was, “God doesn’t give you anything you can’t handle.” I didn’t know what that meant. If Kerry and I were unfit parents, we wouldn’t have had a child with a disability? That seems an incentive to be a lukewarm parent. If God judged us barely adequate at bringing up kids, He wouldn’t have determined we were competent enough to raise a daughter with Down syndrome?

  Well-intended people had trouble talking about our daughter. The phone kept ringing, and people were surprised when Kerry answered. Why would someone who just had a baby with Down syndrome be answering the phone? “It’s like they thought someone had died, and the next of kin doesn’t want to come to the phone,” Kerry said.

  The nicest people said the strangest things. “I’m sorry” sounded both appropriate and offensive. We had no good reaction when someone said that. If we said “thank you” it affirmed that, yes, we were sorry, too. When we weren’t.

  “How are you?” didn’t quite get it, either. That’s a common enough question. We got it when Kelly was born. The tone was different with Jillian, though. The question seemed freighted with genuine concern for our emotional well-being.

  “We’re fine,” Kerry and I would say.

  “Don’t worry, it will be all right” was another well-meaning reaction to Jillian’s arrival.

  Who says it isn’t all right now?

  I said “uh-huh” a lot.

  “We’re so sorry,” someone might say.

  Uh-huh.

  “Will she get better?” was another.

  I don’t know. Better than what?

  She didn’t have the flu. “It’s not a disease,” I told someone. “It’s who she is.”

  Not long after Jillian was born, we had her baptized. A day or two before the event, Kerry mentioned in passing to the minister that Jillian had Down syndrome. “That’s all right,” he said. “We’ll baptize her anyway.”

  We learned to interpret people’s words through the filter of their best intentions. When someone said, “I’m sorry,” what that person meant was, “I know you’re sad and disappointed now, but it will get better.” When someone said, “Will she get better?” they wanted to know if through hard work and determination, Jillian could eventually overcome her disability. Her Down syndromeness.

  The reactions wer
e a sort of foreshadowing for Kerry and me. So this is how the world is going to be: Hesitant, fearful, well-meaning and removed. It would be filled with people offering condolences.

  Less than five weeks after she was born, we enrolled Jillian in physical, occupational and speech therapies. She had checkups that went far beyond the normal baby-doctor visits because babies with Down syndrome come with a giant catalog of potential health sadness: Eye issues, stomach issues, holes in their hearts that have to be closed with surgery.

  Other things happened, too. Good things. Life lessons happened daily. We learned that compassion, like charity, can be both selfless and selfish. Doing for others makes us feel good about ourselves. Attending to Jillian’s needs was part of my job as her father, of course. But in those first days and weeks of her life, the feel-good I got far exceeded the effort I put in on her behalf. Jillian needed my attention. No more, though, than I needed hers.

  “C’mere, Jillie,” I’d say.

  She couldn’t come here yet, not at three weeks. She might lift her head, though, and aim her gaze in my direction. I’d grab her ankles and pull her gently across the rug in the family room. “Time for your massage. People pay good money for this stuff.”

  Jillian was on her back, staring up at me with perfectly round brown eyes that looked like chocolate chips. She’d started cooing almost as soon as she came home. “A-oooh,” she’d say. It was a foreshadowing of words to come. Rivers of words, torrents—not all of them sensible or comprehensible. We would never have to worry about Jillian speaking. Occasionally, we would wish she’d stop.

  “Okay, sweets,” I’d say. With my thumbs, I’d rub the palms of Jillian’s hands and the soles of her feet. The doctors said touching was very important early on; it stimulated the nerves. Also, kids with Down syndrome can have an aversion to touch. They recommended the rubbing to remedy that. I’d have done it anyway. It felt good. I needed that. Therapy for the therapist.

  Working her tiny hands and feet came with a peace all its own. My thumb practically covered Jillian’s palm. It was maybe a half shoe-size smaller than the sole of her foot. Pressing lightly made Jillian happy. Her eyes assumed an expressive softness. Early on, we understood that Jillian would be what the doctors and textbooks call “cognitively delayed.” We also realized at about the same time there would be nothing delayed about her emotions. Jillian could love and be loved.

  I’ve thought about that often over the years. What if Jillian had been born severely autistic? If she had been limited in her ability to show us affection, how much harder would our lives have been? We immediately related to Jillian on a basic human level. Her personality helped us deal with that. We rubbed her hands and feet; she stared back, enthralled. The transaction made all of us happy. We all fell in love. What if that hadn’t happened?

  Jillian was “floppy” as well. That’s a dismissive way of saying she had low muscle tone. The physical therapists attacked that. Our at-home regimen was simply to work Jillian’s arms and legs up and down, as if we were maneuvering the appendages of a Barbie doll. Jillian wasn’t much bigger than a Barbie doll, so it made sense.

  We’d brush her, too. We had a small, soft-bristled brush, the kind you might use in the shower. Three times a day, we brushed Jillian’s skin, all over. She liked that. “Aoooh,” she said. If I found myself snagged in the weeds of the column and in need of something to take my mind off it, I’d come down from my office in the spare bedroom to do the rubbing and the brushing.

  Trying to be topical and entertaining in print four or five days a week isn’t always easy. On the days when the words are graceful and the subject compelling, it can be like stealing money. On the other days, it’s like putting your brain in a vise. I’d start swinging and missing, and I’d want to kill my laptop. Instead I’d walk downstairs and treat myself to giving Jillian a massage. It might not remove the writer’s clamp, but at least I wasn’t breaking anything.

  FOR ME, MUCH OF what’s been written by parents of children with Down syndrome takes on a pitying and self-absorbed tone. What’s going to happen to us? Why did this happen to me? This isn’t the child I wanted. My Book about My Syndrome.

  Guilt is common. Guilt for being older, when the risks are greater for having a child with a disability. Guilt for feeling sad about having a baby not seen as perfect. Guilt for lamenting the child you didn’t have, and the remorse you feel because of it.

  Kerry and I had no guilt or remorse. We did nothing wrong. A child is born, and she’s perfect except she has an extra chromosome. We do what we can, the best we can. We take the situation on our terms. Guilt wasn’t in the playbook.

  Others who have written on the subject express a need for forgiveness. As if they have brought into the world an unsatisfactory human being.

  Kerry and I didn’t need forgiveness. We didn’t expect it. We didn’t have time to think about it. There was no need to “forgive” Jillian for who she was. It would have detracted from who she could become.

  That said, when the calamities of the day subsided and the house turned inescapably still, we were sad. We allowed ourselves that. Kerry sometimes cried during her nightly bath, occasionally wondering if our burden would ever feel light. “I don’t know if I can care for her” she said one night.

  She could, of course. She has, magnificently. But in the footlights of the moment, sometimes it’s hard to dance.

  The bond with your child is thicker when she isn’t perfect. Everything exaggerates. Senses, awareness, caring. Slights, perceived and real. Your emotions are sensitive to the touch. In those first few weeks and months, we kept moving because we didn’t know what would happen if we stopped. Fairly quickly, Kerry and I realized Jillian wasn’t the only one who needed therapy.

  WE NEEDED SOMETHING BEYOND the perpetual motion and striving. An affirmation, some sort of intimate reassurance that, truly, everything would be all right. For me, it came with a dance.

  At the end of each day of that first year, I curled my right forearm beneath Jillian’s bottom. The fingers of my left hand cupped the back of her head, which at that point wasn’t much bigger than a softball. Her arms hung on my shoulders, like wisteria on a plantation oak. Her head fit like a violin between the top of my shoulder and the base of my jaw. I cued a version of the song “Goodnight, My Love” that Los Lobos had recorded for the soundtrack to the movie La Bamba.

  “May I have this dance, my lady?” I asked Jillian.

  “Ah-oooh.”

  And off we went. We orbited the small space of the living room, weightless and silent, but for the breathing. I sang to her:

  Goodnight, my love;

  Pleasant dreams, sleep tonight my love;

  May tomorrow be sunny and bright.

  Father and daughter, old and frightened, needy and new, living in the moment, dancing around the room. It was the best we could do.

  I was looking for something beyond perpetual motion to help me negotiate the days. I spent a few days after Jillian’s birth damning God to hell. A week later, I was back in church. It didn’t take me long to stop seeing Jillian’s birth as a tragic roll of the chromosomal dice and start seeing it as a lifelong love affair. I still required an emotional brace, though. I needed Jillian to tell me everything would be okay. I needed her presence at my own salvation. She would have to help me through.

  May tomorrow be sunny and bright.

  Infants need that closeness. It simulates the womb they just left. Doctors tell you to keep them wrapped tightly in the days after birth. Blanket or arms—either will do. I preferred arms. Because deep down, this part wasn’t about Jillian at all.

  If you should awake, in the still of the night

  Please, have no fear

  I’ll be there, you know I care

  Please give your love to me.

  I didn’t want to hold Jillian; I needed to hold her. My sadness was large. My need to protect against it was overwhelming. So I hugged for dear life, just to feel good about something. If I hugged Jilli
an hard enough, maybe the Down syndrome would go away. Please give your love to me. At the end of each day, my daughter performed therapy on me. She danced with me, around the room.

  All we can do is all we can do. We aren’t remarkable, Kerry and I. We lined up the mantras all in a row, like well-trained soldiers, and they did our bidding. Trails will be blazed, moons will be jumped. Jillian will decide who she is, as much as humanly possible. All that will happen, you will see.

  First, though, we danced.

  I held Jillian in my arms and danced a crescent around the room. The space filled with the light from a starry sky as we circled gently around the days of our lives. What is not possible?

  May tomorrow be sunny and bright.

  And then she almost died.

  CHAPTER 5

  Dying to Breathe

  If children have the ability to ignore all odds and

  percentages, then maybe we can all learn from them.

  When you think about it, what other choice is there

  but to hope? We have two options, medically and

  emotionally: Give up, or fight like hell.

  —LANCE ARMSTRONG

  Jillian was five weeks old when she returned to the hospital, literally dying to breathe.

  I can’t begin to explain what it is like to see a 6-pound, 15-ounce child diminish before your eyes. Words have not been made to bridge the gap between standard-issue fear and outright terror. We spent the first five weeks of Jillian’s life worrying about Down syndrome. Suddenly, Down syndrome was the least of our concerns.

  She had been having trouble breathing, which isn’t uncommon for babies with Down syndrome. Their lungs are often slow to develop, and their nasal passages are small. We first thought she had a cold that, with help from doctors, wouldn’t last too long.