An Uncomplicated Life Read online

  “I’m your dad,” I said.

  My wife’s friend Gayle had taken her to the hospital. She was there when Jillian was born. “She’s perfect,” Gayle said. As the nurse stitched her up, Kerry filmed the goings-on.

  “No Down syndrome?” she had asked Gayle.

  “No Down syndrome.”

  It was not an offhand question.

  For nine months, we had kept seeing people with Down syndrome. We’d noticed them, where we never had before. At the mall, at the movies, at the grocery store. Here and there. We’d spent 15 days in Europe in June. At a café in the French coastal town of Arromanches, a woman sipped coffee in an outdoor courtyard while she held her baby, who had Down syndrome.

  “It doesn’t mean anything,” I’d said to Kerry that day.

  Kerry was 34 years old when Jillian was conceived. We worried about that, but not much. Kerry was healthy. She’d emerged from Kelly’s birth with no complications. She had been preparing for this moment her whole life. Being a wife and mother was who she always wanted to be. She didn’t drink alcohol in college because she knew she wanted to have kids. During her pregnancy with Jillian, Kerry left the room when Kelly and I were gluing a model airplane. For nine months, she ate nothing stronger than toast.

  My mother had been ignorant of the prenatal precautions we take for granted now and smoked and drank while she carried me. I was born six weeks early, weighed barely four pounds and spent my first week in an incubator. Jillian faced none of that. She emerged robust and curious and pink.

  We had scheduled an amniocentesis for the 20-week mark of Kerry’s pregnancy. A woman of 35 isn’t old to bear children, but she’s not young either. The potential was there for disability. We also wanted to know the sex, so Kelly could become familiar with his younger sibling before her birth. Two nurses explained to us the procedure: They’d do an ultrasound to see where Jillian was in the womb. They’d note the position of the amniotic sac. Then they would insert a needle and withdraw a small amount of amniotic fluid. That would be tested for a few days and would tell them if Jillian had Down syndrome, or any number of other disabilities.

  Medical technology has advanced since that time. Blood tests, carried out during a woman’s first trimester of pregnancy, are safer and less invasive. Amniocentesis can cause miscarriages and generally isn’t performed until the second trimester, when aborting a pregnancy can be more traumatic and harder to obtain. New science will provide prospective parents with a scientific clarity we didn’t have in 1989. It will also open a Pandora’s box of moral choices.

  In 2010, a woman had a one in 733 chance of carrying a child with Down syndrome. Close to 90 percent of pregnant women who receive the diagnosis choose to abort. What would new tests offering greater accuracy do to that statistic?

  “Will babies with Down syndrome slowly disappear?” wondered Brian Skotko, a fellow in genetics at Children’s Hospital in Boston.

  We choose to celebrate some of our differences now. Will we choose also to eliminate others? Who decides?

  This wasn’t an issue in the spring of 1989 as Kerry lay on a doctor’s office table, awaiting the amnio. I was there to lend moral support and manly courage to the proceedings. No woman should have to endure that alone. I was there, quietly strong, at least until the nurses described the procedure. Then I went weak in the legs and folded at the waist. The room turned.

  The nurses caught me, one on each arm, and led me from the room. I had to take all that manly moral support out to the waiting area, where I spent some time fanning myself and recovering from the trauma of hearing about the procedure. After a while, everyone came out.

  “Well?” I asked.

  “They couldn’t do it,” Kerry said.

  “Why not?”

  “The baby was in the way.”

  Our baby girl’s position in the womb made drawing the fluid dangerous. So they didn’t. Several weeks later, Kerry had an ultrasound to learn the sex. It was a girl. We named her Jillian three months before she was born. We didn’t know if the technicians who performed the procedure had seen anything to suggest to them the baby had Down syndrome. We still don’t know. We’ve never asked.

  We left the doctor’s office unconcerned. Kerry laughed at all the “help” I’d been, and I went back to work.

  Now, it’s 19 weeks later, and I am holding my wife and our newborn briefly. I am going home to get Kelly so I can introduce him to his sister. “I’m your dad” is what I say again, as I walk out of Room 507 for the 30-minute drive home.

  Jillian’s birth was different for me than Kelly’s. I was more ready to be a father. I’m not saying I wasn’t daunted again. If the gravity of parenthood doesn’t grip you every time, you shouldn’t be in the game. But the weight felt lighter this time. I knew some things about being a parent. I knew the lay of the land.

  Parenting is trial and error, no matter how long you do it. But I’d been to the big leagues once already. I’d hit the pitching.

  I was more willing, too. Kerry had been full-bloom ready to be a mother when Kelly was born. I was very much riding shotgun. The prospect of fatherhood scared me, but not as much as I believed it would limit me.

  We’d been married for more than three years when Kelly arrived. They were easy years. I woke up every morning next to my best friend, with whom I shared interests and passions. We had a small bungalow in Norfolk, Virginia, two hours from the mountains and 20 minutes from the beach. We did what we wanted, when we wanted. I liked the freedom and the companionship. I was reluctant to give that up.

  We had a 60-pound shepherd-collie named Deja-Vu. Wasn’t that child enough?

  You don’t realize that time shared with a baby is every bit as intimate as time shared alone together. At least I didn’t. All I could think was “there go the weekends in the Shenandoahs.”

  As I walked in our front door to pick up Kelly, the phone was ringing. It was Kerry. She offered a low guttural moan like nothing I’d ever heard. “You need to come back now,” she said. “The doctors think Jillian has Down syndrome.”

  There are days you remember always, for the weight of their woe. I remember the day my mother downed 100 sleeping pills to ease her pain forever. I remember the day we put down our first dog, caressing her muzzle as the vet injected the lethal dose. And I remember this day, when the wife I’d left happy and glowing with a baby in her arms called to tell me our baby had Down syndrome.

  After I left, a doctor Kerry had never seen had told her. He declared it in matter-of-fact tones. He proclaimed my daughter “floppy” in reference to her low muscle tone. He thought Kerry knew.

  She called me immediately. I held the phone to my ear. “What?” I said.

  At a moment like that, you want only to be told you misheard. You think, maybe it’s a wrong number. There is another Kerry, and she is calling another Paul. It’s all a big mistake. Has to be.

  Kerry repeated the news.

  “Oh, no,” I said.

  I don’t know how other parents react to hearing that they have an imperfect baby. I’ve never asked. I dealt with that moment by making perfectly logical, impossible demands. I didn’t want a miracle. That wouldn’t be enough.

  I started my negotiation with God.

  “Take me,” I said.

  I pleaded with God because at that moment, no one else would do. A life for a life, right now, straight up. I am 31 years old. I have seen things, felt things, done things. Life has made its mark on me. Jillian is the first day of spring.

  I am not especially religious, but I am religious enough to believe this was not a random act perpetrated upon my little girl. Jillian, my daughter of six hours, has Down syndrome. A bum spin of the chromosomal wheel has produced the peculiar genetics that will rule her life.

  I had a deal. What The Man had done, He could undo.

  “Take me,” I said.

  Meanwhile, Kelly wouldn’t be coming to see his sister just yet. I checked with the neighbor who was watching him, told her the black n
ews, then got back in the car and returned to Good Samaritan Hospital.

  This is how we change. It’s not gradual. It comes in a flash and is beholden to events we can’t foresee or control. Change is instant. Reacting is a lifetime. What must I have looked like to those passing me on the interstate? What’s with that guy, crying and slamming his fists on the steering wheel, yelling to himself?

  Take me. I was as insistent as I was irrational. This might be a negotiation, but the wiggle room was limited. In this profound instant of grief, I wanted what I wanted. “Don’t do this to her. She’s just a little girl. Take me. Make her better. Tell us the doctors are wrong. Don’t do this to my little girl. Oh, god.” Oh, God.

  My mind was cottony as I made my way back to Room 507. Voices converged. I wasn’t in a 12-by-12 private room anymore. I wasn’t listening to one distinct voice across a space that suddenly had become as quiet as Sunday morning. My brain was layered in gauze. I couldn’t discern the voice that came from the man—or is it a woman?—wearing the white scrubs and the stethoscope. I heard a crowd, as if we were at a ball game or a bar. Disbelief muffled everything.

  “Things are so much better for these kids now . . .”

  These kids?

  I wanted to float to the top of the room. I wanted to fly away.

  Just yesterday I was in a rental car, driving Highway 1 north of San Francisco. It was a golden autumn day. The blue of the Pacific and the velvety brown of the hills stretched for miles in front of me. Anything was possible.

  I wished it were still yesterday and would be forever.

  “We will get you all the information you need . . .”

  I take Jillian in my arms again. I wonder if she feels different than she did an hour earlier. The weight of a newborn isn’t measured in pounds because hope has no scale. Intellectually, I’m already making the turn to “what’s next?” Emotionally, I have miles to go. I stare unblinking into the central moment of the rest of my life.

  Jillian is wearing a pink gown and a white knit hat. She alternates between curious staring and soft sleep. The doctors say she weighs 6 pounds, 11 ounces, but she feels heavier. Joy is portable. It is born on the wind. Feeling good involves a sort of weightlessness. Joy travels well.

  Grief stays put. It is resolute, something to be carried until your back bends.

  Lift up your hearts. Lay down your burden.

  That first day, Jillian weighed a million pounds. We all did.

  I held Jillian in my arms, ponderously.

  “She’s beautiful, Ker’” is the best I could do.

  Words aren’t solace. Nothing is. Wisdom comes later and is properly hard-earned. First, we cry.

  In the haze, Kerry tried to rationalize. She returned to her premonitions during pregnancy. “I thought the whole time it might not be true,” she said. “But I knew. I did.”

  Official results from genetic testing would take a few weeks to confirm the initial diagnosis. On this first day, the doctors were observing Jillian’s pinky fingers that curled in. I looked at the medical chart hanging from the bottom of the hospital bed. “Simian creases on the palms” someone had written. I took Jillian’s hand in mine. I turned it over, palm upward. Horizontal lines ran the breadth of her tiny palm. I looked at my own palm. Different lines. At moments like that, fear assumes its own visceral presence. It becomes part of you. Eyes, ears, mouth. Heart, lungs, blood. Fear.

  I go home for a second time to pick up Kelly and bring him to the hospital and introduce him to his little sister.

  By mid-morning, Kerry’s parents arrive at the hospital from their home in Pittsburgh. She tells them. Sid Phillips, her father, says nothing. He sits down, mulling it. We wonder if he knows what Down syndrome is. Kerry’s mother, Jean, covers her in a hug. Both cry silently. “Don’t cry, Mom,” Kerry said. “I don’t want Kelly to think there’s anything wrong with his sister.”

  Kelly sits in a chair, holding a stuffed bear meant for Jillian. He is three years old. “You have a cool little sister” is what I tell him.

  I call my parents in Florida for the second time that day. On that first day, heartbreak runs in a continuous loop.

  “I need you to sit down,” I tell my stepmother. I break the news.

  “I’ll have to call you back,” she says. Later she will tell me she spent that afternoon meditating and had a vision of Jesus, holding Jillian in His arms and telling her everything would be fine. But for now, my stepmother has to get off the phone and cry.

  My dad gets on. “Who does she look like?” he asks. The most beautiful and personal moments of a lifetime can die in a hospital room. It was all he could think to ask.

  “Dad, she doesn’t look like anyone.”

  And so it went. Kerry’s parents left after a while. They took Kelly back to our house. I took a shower in the hospital room. I needed something to be washed away. I wasn’t sure what it was. Guilt, maybe. Regret. Sadness. Surely, sadness. The water felt like tears from a faucet.

  The negotiation with God was a failure. I was still here. Jillian still had Down syndrome. Figuring I had nothing to lose at this point, I hurled invectives like fastballs at the Almighty. A just God would not have allowed this. So screw Him.

  At 8:00 p.m., ABC sports broadcaster Al Michaels was in the television booth at Candlestick Park, setting up the first pitch of the first game of the 1989 World Series. Then the earth shook all around him. Michaels nearly fell from his stool. The earthquake would delay the Series an entire week. People died. Journalists would work by candlelight. They would feel their way, wondering if the earth was done quaking. A friend covering the Series told me it felt as if the Bay Area—disconnected, broken, devastated—was the last, worst place on earth.

  “You have no idea,” he said.

  “Yes,” I replied. “I do.”

  It was 2:00 a.m. when Kerry’s crying woke me up. The heartbreak in that small space in time seemed irreversible. There was nothing to do but cry. Kerry hadn’t cried all day. Every time she wanted to, some counselor would come in. She didn’t want to upset Sid, Jean and Kelly, either, but they were back at our house now.

  “I don’t know what we’re going to do, Paul,” Kerry says.

  I knew what we were going to do. But only for that moment. I didn’t know it then, but I would learn: When you have a child with a disability, all that matters is now. What can you do this minute, this hour, this day? The circle is as tight and dense as a fist. Yesterday is meaningless, tomorrow is overwhelming. Now is the only thing you can do something about.

  With one hand, I rub my wife’s red and swollen face and push the hair from her eyes. With the other, I take her arm.

  “Come on,” I say.

  I pull her up slowly. Grief weighs. Kerry had spent nine months adding weight. Some 24 hours earlier, she’d shed it, gloriously. Now, she feels leaden and a little less alive. With both hands, I help her from the bed.

  “Let’s go.”

  At 2:00 a.m. a hospital ward comes with its own contradictions. Quiet and too quiet. Hopeful and hopeless, peaceful and full of dread. All at once. Nurses with reassuring words, delivered in patronizing tones. Brightly lit corridors remove all the gray areas and prevent you from hiding your terror. They illuminate your sadness and hope equally.

  We leave Room 507 with its mocking array of balloons, cards and flower arrangements, and walk down the hall. On the left is a window and through that window is a nursery full of newborn babies.

  “Jillian Daugherty,” I say to a nurse.

  Nothing in life is better than birth. Hope knocks anew. You might have screwed up everything else in your life, but when your baby arrives, your soul’s calendar flips to a fresh page. This feeling might not last forever. It could disappear the moment you leave the womb of the maternity ward. In that first moment, though, it’s there. Plain as a sunrise. You have a new purpose.

  And now?

  The nurse brings our child. She is wrapped deeply in her pink blanket. Someone has attached a pink bow
to the wisps of her soft brown hair. Jillian is sleeping. I give her to Kerry. “It’s going to be okay,” I say. Whether I believe that or not doesn’t matter. I need to say it. Kerry needs to hear. “Our little girl is going to be all right.”

  Kerry takes the miracle and holds it lightly. Love is weightless. “I know,” she says.

  There are things you learn along the way, things that help you deal with that awful moment and, eventually, to understand that it wasn’t so awful. Having a child with a disability is like having a life coach you didn’t ask for. You realize that perspective is a blessing that’s available to anyone who seeks it. Or has it forced upon him.

  The miracle of an imperfect child is the light she casts on your own imperfections. After a time, she will teach you far more than you will teach her, and you will discover that “normal” comes with a sliding scale.

  You realize a kind of love you never knew you had. Nothing magical that happens, from the first tying of shoes to the first solo flight on a two-wheeler to the first time she shows us her paycheck, is ever again assumed. Life’s everyday worthwhiles take their proper place in the happiness queue.

  The potential for kindness becomes self-evident and the universal need for compassion abides.

  Twenty-four years later, if Kerry and I know anything, we know this: We’re better human beings for knowing Jillian. She was put here to make us better people. That’s the all of it.

  I have forgotten lots of things about Jillian’s life in the 24 years since that first day. Poignant, funny things. Things that made me rage. Snapshots of who she was becoming. I’ve relied on the better memories of others to color what’s gray. I haven’t forgotten that phone call, though. I’ve never again experienced the dark kaleidoscope of emotions encountered in those first 24 hours. I’ve never felt more alive. I’ve never wished more that I weren’t.

  Jillian was born October 17, 1989. It was the last bad day.