An Uncomplicated Life Read online

  DEDICATION

  To Jillian, whose story resonates to all who hope

  CONTENTS

  Dedication

  Introduction

  Chapter 1: Praying Out Loud

  Chapter 2: Paul and Kerry

  Chapter 3: Kerry

  Chapter 4: Therapy

  Chapter 5: Dying to Breathe

  Chapter 6: Kelly

  Chapter 7: The First Angel

  Chapter 8: Jillian

  Chapter 9: Nancy

  Chapter 10: The Battleground of Dreams

  Chapter 11: Homework

  Chapter 12: The Coffee Song

  Chapter 13: The Two-Wheeler

  Chapter 14: Sometimes

  Chapter 15: Cymbidium Orchids Under the Porch Light

  Chapter 16: Kelly

  Chapter 17: An Appropriate Education

  Chapter 18: Belonging

  Chapter 19: Jillian and Ryan

  Chapter 20: I Hope You Dance

  Chapter 21: Missy and Tommy

  Chapter 22: College

  Chapter 23: In the Swing

  Chapter 24: Sometimes, We Drove

  Chapter 25: Dave Bezold

  Chapter 26: The Team

  Chapter 27: Jillian Turns 21

  Chapter 28: Testing

  Chapter 29: In Love and Moving Out

  Chapter 30: One More Drive

  Chapter 31: Vanuatu

  Chapter 32: Moving Day

  Chapter 33: Number 47

  Chapter 34: A Dream

  Epilogue: Jillian and Ryan Get Engaged

  Acknowledgments

  About the Author

  Also by Paul Daugherty

  Credits

  Copyright

  About the Publisher

  Jillian Phillips Daugherty.

  INTRODUCTION

  I wide bike.”

  This is a story about a dream and a child and the progress of each. It starts on our driveway in early spring.

  Jillian Daugherty straddles a comically tiny two-wheeler that, against considerable odds and long-held perceptions, she intends to ride. She is 12 years old and prone to doing what all kids do. She’s going to try to ride it.

  Jillian has seen the neighborhood kids riding their bikes. More important, she has seen her brother, Kelly, who is older by three years, use his bike to breach the boundaries of the yard. Jillian idolizes Kelly, and she assumes she can do whatever he does so she has determined that mastering a two-wheeler will be the next frontier.

  “Wide bike,” she’d announced a few months earlier.

  “What?” Eight years of speech therapy, and the r’s still emerge as w’s.

  “I wide bike. Like Kelly.”

  It’s a childhood rite of passage. Leaning to ride a bike is an afternoon of a parent steadying you and teaching you, holding you until you find your balance and your way, then letting you go. Unless you have Down syndrome. Then it’s a little more complicated.

  “Um, well . . .”

  “I can do it,” Jillian says. This would not be negotiable.

  In the lengthy catalog of “Things Kids with Down Syndrome Probably Won’t Do,” managing a two-wheeled bike is somewhere between memorizing the dictionary and commanding a rocket ship. These children aren’t sufficiently coordinated, and they don’t have the balance. They are at risk of hurting themselves. And so on.

  But my wife, Kerry, and I are hopelessly naïve or overly optimistic or both so we don’t see the odds of Jillian’s crashing to be much shorter than they are for any other kid. If she falls, she’ll spit on the hurt and try again. This isn’t the first time we’ve given a wide berth to our daughter’s ambitions.

  “Okay,” we tell her. “When the weather warms up, we’ll get you a bike.”

  “Tomorrow?” Jillian wonders.

  A few months later, I am grasping the back of the bicycle seat lightly, as if I’m cradling a newborn. Jillian is tightly clenching the handlebars as a blue-perfect spring morning had summoned us to try again.

  We’d been working at this for two months, at least. Jillian, being Jillian, had banged into this two-wheeled business with both feet. And both knees, both elbows and a forehead or two. It was like cracking a code or something in an effort to acquire the subtleties of balance and the blunt force of strength needed to keep the bicycle upright and beneath her.

  Every day, I’d drag poor Jillian out to the long common asphalt drive we share with three other houses. I’d help her up, get her started and hold the back of her seat as she began pedaling.

  Maybe this would be the day.

  “You ready, superstar?”

  “Yep.”

  Her bike looks like something a circus clown would use to chase elephants around a ring. It has wheels no more than a foot high, and a frame you could fold up and carry in your back pocket. It is small because so is Jillian. She’s not quite 4 feet tall and weighs maybe 60 pounds. The helmet she’s wearing drapes her head like a cheap slipcover. If Jillian looks down or to the side or in any direction other than perfectly straight ahead, the helmet pitches and yaws accordingly.

  At the moment, Jillian sits in the seat, straight as a ruler.

  “Dad, do you have me?” Jillian asks.

  My fingertips own a tentative hold on the back edge of the bicycle seat. Jillian’s audacity doesn’t prevent her anxiety. “I have you,” I say. “I will always have you.”

  WE’RE ALL CONNECTED.

  I don’t mean that in a saccharine, greeting-card sense. We’re joined by situation and geography and happenstance. What we do with the connections that occur defines who we become. We can’t thrive alone. Fulfillment needs partners.

  Jillian Daugherty’s life has been a happy conjoining of partners. Her story is about the power of a communal joining of hands and demonstrates that we were each put here to benefit the other. Three years after starting this project, this is what I will take from it. We’re only as good as the way we treat each other.

  The telling of Jillian’s story involves many people. They are ordinary folks moved to extraordinary goodness by a child they often met by chance. Their lives are as rich as my daughter’s, and every bit as sad and joyous, burdened and heroic. Spurred by compassion or justice or simple decency, they all helped Jillian become Jillian. In return, Jillian offered a mirror to their goodness. They couldn’t help but like what they saw. They have helped Jillian live. She has helped them live better.

  This was a book achieved in fits and starts. Bursts of adrenaline writing, surrounded by weeks and months of inactivity. I write about sports for a newspaper. I also write a daily blog. The random nature of it all means I am at once free and shackled. I work at home, usually, so I don’t have to waste time commuting or talking with co-workers or eating lunch. That’s good. I’m also on call. Teams don’t fire coaches between nine and five on weekdays. Networks don’t think about my dinnertime when they schedule games. Writing about sports requires flexibility and a tolerance for airport security lines. Your definition of a workweek is determined by when the games occur: All the time.

  I have written this book on scraps of paper in airport terminals, and on the Long Island Railroad, bound for Manhattan. I’ve scribbled notions over a western omelet, on a paper napkin pulled from a dispenser in a diner in suburban Washington, D.C. From a promontory on Angel Island in San Francisco Bay, I’ve watched as fog draped the Golden Gate Bridge in fine white linen. Then I’ve used a golfer’s pencil and the back of a ferry schedule to write down some ideas.

  I tried writing in a rented room, believing such a setting would provoke good words and thinking. It didn’t. We own a small cabin 70 miles east of our home in suburban Cincinnati. It’s hard in the middle of Amish country, where solidly flat O
hio yields to the pleasant heaves of Appalachia. I went there, believing big thoughts would emerge from the pastoral curves of the land. They didn’t.

  Inspiration comes when you’re not looking. I found it while wandering the vast and unharnessed Superstition Mountains outside Phoenix, where it was easy to see endless possibilities and how they’d impacted Jillian’s life. Every summer, my son and I visit the Blue Ridge Mountains of North Carolina. Traversing the spine of those ancient hills provoked thoughts of mortality and living in the moment as best we can. That birthed a chapter on savoring Jillian’s small wins.

  “Nothing survives,” Jackson Browne sang, “but the way we live our lives.”

  I don’t know Joel Meyerowitz or Buzz Bissinger, but I am in their debt. Meyerowitz photographs landscapes. I have two of his books, which are made up of photographs of Cape Cod, Massachusetts. Meyerowitz’s photos do for me what Edward Hopper’s work does for lovers of paintings. The pictures, one in particular, fill me with the sort of abiding love and melancholy longing so necessary to the telling of Jillian’s story.

  Bissinger is known as a tough-guy journalist, but he didn’t come off that way in his book Father’s Day, about a cross-country road trip with his son. Not just any son, but an adult son with mental disabilities since birth. Bissinger struggles with his role as Zach’s dad, and with his guilt for having not done better by him. I know the feeling.

  My wife, Kerry, was, is and always will be Jillian’s first champion. Kerry is a woman of extraordinary will and foresight. Jillian’s map emerged from Kerry’s determination. My son, Kelly, has been Jillian’s shoulder. His full appreciation of his sister’s presence has helped to give her the confidence to thrive in what otherwise might have been an overwhelming world.

  Jillian’s family is not just bound by blood. She owns a vast nation of family. Never underestimate the power of people to do good. The network of people who have influenced Jillian’s life could fill a map of the world.

  This book is mostly Jillian’s doing. It is her book, and it is to her credit that it never occurred to me her story was book-worthy. She was our kid, and we loved her. Was she special? Only in the way everyone’s kid is special.

  But as I started dusting the corners of where she’d been and who she’d touched, I recognized what a trip it had been.

  I began talking to the people Jillian had connected with: Teachers and coaches. Fathers and mothers, daughters and sons. I made the rounds of Jillian’s life and found lots of furniture moved. She had touched people. She’d affected anyone who’d given her a look-see.

  I started remembering things and interviewing people. I realized Jillian’s successes belonged to—and were owed to—people far beyond Jillian. I realized that sharing her story might call attention to the power of the human spirit. This isn’t a book about Jillian’s disability. It’s about how her disability has enabled more fully her life and the lives of others, none more than my own. Jillian makes us feel good for having been there.

  HALFWAY DOWN THE DRIVE, Jillian hits her stride on her tiny new bike. Something kicks in. Confidence, maybe. The knowledge that my hand is still on the back of her seat, even as my grip can’t hold a pencil. She pedals faster.

  “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.”

  CHAPTER 1

  Praying Out Loud

  After great pain a formal feeling comes;

  The nerves sit ceremonious like tombs.

  —EMILY DICKINSON<
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  Jillian 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.