An Uncomplicated Life (3 page)

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 news, 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.

CHAPTER 2

Paul and Kerry

For us, there is only the trying.
The rest is not our business.
—
T. S. ELIOT

I
was six years old and in the second grade when my mother first tried to kill herself. I had just come home from school when I found her lying on the kitchen floor, blood from her opened wrists pooling on the linoleum.

“What do you want me to do?” I asked her.

My mother said something I didn’t understand.

“What?”

This was 1964, and there was no 9-1-1 in those days. There were numbers in a phone book for doctors and ambulances and police, but I didn’t know how to find them. I stumbled through another plea. “What can I do?”

I knocked on the door of the neighbor’s apartment and rang the bell. No answer.

I returned to the kitchen. This was the first time I’d seen blood. “What do you want me to do?” I said again. Maybe my mother said “Call Dad,” but I don’t remember. I didn’t know his work number anyway.

That’s when I went out to play.

I don’t remember the rest of the day. My dad must have come home fairly soon after that, and they must have gone to the emergency room. Someone sewed my mother’s wrists. Later that night, my father woke me up.

“You saw your mother lying there and didn’t do anything?”

“I didn’t know what to do,” I said weakly.

“So you went outside to play?”

For a long time after that, my mother’s wrists were wrapped in bandages, and she would wear long sleeves to cover her arms. She looked sad, tired, disappointed, defeated.

“I didn’t know what to do,” I repeated.

That’s when my dad told me what to do if something like this ever happened again. He was giving a six-year-old instructions on what to do the next time his mother tried to kill herself.

TWO YEARS LATER, WHEN
I was in the fourth grade, my mother completed her task. We were living in a first-floor, garden-style apartment with a front door and a sliding glass door in the back. The day she died, both doors were locked. That day I got off the school bus, walked to the apartment and tried the front door. When I discovered it was locked, I went around to the glass door. I knocked on it, but I could tell my mother wasn’t home. I sat in a chair on the porch and did my homework.

This was unusual, but not completely strange. Sometime before that, my mother had bought a handgun and shot a hole through the ceiling of our apartment. I didn’t know why she did that. I’ve never asked. Doctors said she was “schizophrenic.” She’d been put on medication.

“Who would you rather live with? Me or Mommy?” my dad had once asked me during an especially unhappy night.

“I love you both,” I said.

Understanding something as complex as a flawed human brain is beyond most of us. It wasn’t on my radar as a kid in elementary school. It wasn’t even a concept. The times my mother checked into the “mental hospital” were explained to me as you might expect:

“Mom is sick. These people are going to make her well.”

Well, okay. Who’s going to make dinner?

WHEN YOU ARE A
child, all you really want is no surprises. There ought to be a comforting sameness. Cake on birthdays. Sleepovers, dinner at six and no TV until the homework is done. The calculus of a kid’s life should not be complex: Love, security and a place to go. And that place should be immovable so his world spins in a tight circle. Home is where you go that makes nowhere else matter. The monsters you see shouldn’t be the ones that scare you.