Read An Uncomplicated Life Online
Authors: Paul Daugherty
“Dad . . . ?”
The driveway is a few hundred yards long, a safe distance from the street and a good place to meander. It’s one of those suburban creations, at once welcoming and self-contained. The common drive allows you to be close to your neighbors—or apart from them. It’s what you make of it.
We didn’t choose this house for its driveway. Not entirely. But we embraced it soon enough. No bouncing balls would find their way into the path of a car. Kelly was a year old when we moved in. Jillian has lived here always. Until we got this bicycle, her world was the house and the yard. Now it’s about to be something more.
“Dad . . . ?”
This is a book about letting go. Kerry and I have prepared for this moment, and for all the moments to come. From the day we said hello to Jillian, we began to say goodbye. It’s what parents do, with all our children. We love them so they can leave. Each parental act is a gentle palm in the small of the back. At some point, if we’re lucky, our desire becomes their experience. We teach, we steady, we hold. And then we let go of the bicycle seat.
Even if our children have a disability. Maybe especially so.
“Dad? Are you back there?”
I am but a little less so. Letting go is a brisk walk, then a jog. It takes everything you have. When it’s your daughter and she has Down syndrome, it takes more than that. More than everything.
I shift into a light trot so I can keep up with Jillian as she gains speed. I curl an index finger beneath the back of the seat.
“Dad, am I doing it?” she asks. “Am I wide?”
Jillian pedals harder. The bike wobbles, attuned to her uncertainty. I keep an airy hold, as much as is needed.
“I have you,” I say. And then I don’t.
The end of the driveway is just up ahead. So is the beginning of something brand new. Jillian says something, but it is lost in the breeze. I am standing halfway down the drive, hands stuffed in my pockets, no longer attached to my daughter’s bike, trying not to cry. Jillian ker-bumps off the curb and onto the street, laughing.
She is a blueprint for how the rest of us can be. She lives the lessons we give.
I say this not because Jillian is my daughter, but because it is so. Jillian is a soul map of our best intentions.
She has affected everyone who has taken the time to see her. Seeing isn’t easy. It requires participation. It implies understanding. Seeing is a mandatory swatch of the human fabric. It invokes a civil right.
Do not judge me on what I look like. See me for who I am.
The narrow day-to-day confines of who we are don’t always advance the promise of who we can be. Occasionally we need guidance. It doesn’t have to be a bolt of lightning or wisdom from a book. It can come in the form of a child whose initial presence was terrifying and overwhelmingly sad and who just now hopped from the curb on the two-wheeler she was never expected to ride.
“Dad,” Jillian said. “I wide!”
WHAT SORT OF PEOPLE
do you like?
Who asks you in and prompts you to stay? People who are
kind, probably. Kindness is at the center of all we hope to be. If you are kind, you are trusting and trustful. You don’t judge. Judging implies superiority. It makes people uncomfortable.
Chances are, you appreciate people without guile. They see the best in you. They’re not looking for something beyond what the relationship suggests. They put you at ease. You never worry about agendas with guileless people. They’re easy to be around.
People whose hearts are big and open. You like them. You like being around them because of the joy they make and the vulnerability they express. Their obvious frailties prompt your confidence. Big-hearted people own a broader humanity. They accept. Their wide soul berth inspires you.
Your best friend might aspire as well. He will say, “Why not?” He might fashion those Why-Not’s into reality because he honors himself by always doing his best. He doesn’t want to let you down, either. That’s part of it. He knows how to be happy, and to make others happy.
You are drawn to people with patience because you’ve felt the power of the patience others have shown you. You like humility because you’ve been humbled. You appreciate grace because it’s so often lacking.
What if you could know someone who has all that?
Jillian’s heart is an uncomplicated place. It’s hardwired to her brain. What Jillian feels, she mostly says. We can be in the car, or at lunch, or watching TV. We can be just about anywhere, when Jillian will launch a sigh and a smile, just because and apropos of nothing.
“I love my life,” she’ll say. “I just love my life.”
After great pain a formal feeling comes;
The nerves sit ceremonious like tombs.
—
EMILY DICKINSON
J
illian emerged in a rush, a week early and without labor. She was a watermelon seed between thumb and forefinger. She couldn’t wait to be born.
Her brother’s birth had taken fourteen hours. Half a day to make up his mind, and even then Kelly arrived without commotion. He didn’t cry. He was curious. His saucer-eyes cased the delivery room. So, this is life.
Jillian burst from Kerry on October 17, 1989. In full throat, arms flailing, legs squirming, eyes seeking every possibility. Here I am. She was rockets-red-glare from the start.
I was a sports columnist for the
Cincinnati Post
, and I was in San Francisco for the World Series when Kerry called to say she was in labor and heading to the hospital. The San Francisco
Giants and Oakland A’s would have to wait. I caught the red-eye at about 11:00 p.m. West Coast time. Jillian was born before I left California airspace.
I got to the airport in Cincinnati at about 6:00 a.m. and called the hospital from baggage claim.
“How’s the baby?” I asked Kerry.
“Great,” she said.
“You?”
“Fine.”
“Girl, right?”
“Girl,” said Kerry.
My wife of six years had given birth to a girl. My girl. Daddy’s girl. Pink dresses and tea parties. Cymbidium orchids beneath the porch light, warmed by moon glow and kisses after the first big dance. A stately walk of a lifetime, down a church aisle. I would get to do that now.
I fairly floated to baggage claim. The soliloquy from the musical
Carousel
played in my head:
You can have fun with a son
But you gotta be a father to a girl.
A few hours later, I began my negotiations with God.
Kerry was sitting up in bed when I arrived at Good Samaritan Hospital in Cincinnati, Room 507. Your wife never looks more beautiful than on her wedding day—unless it’s in the hours after she has given birth. Kerry looked to have been kissed by the sun and the moon.
“Okay?” I asked.
Yes, she was. She was fine and radiant. She held Jillian
in her arms, covered in a pink blanket. One eye, brown and almond-shaped, peaked out from under the swaddling. An arm no bigger than an oak twig, a fist the size of a golf ball. A pinky finger, curled slightly and strangely inward, as if it were arthritic.
“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.