An Uncomplicated Life

DEDICATION

To Jillian, whose story resonates to all who hope

CONTENTS

1. Dedication
   
2. Introduction
   
3. Chapter 1: Praying Out Loud
   
4. Chapter 2: Paul and Kerry
   
5. Chapter 3: Kerry
   
6. Chapter 4: Therapy
   
7. Chapter 5: Dying to Breathe
   
8. Chapter 6: Kelly
   
9. Chapter 7: The First Angel
   
10. Chapter 8: Jillian
    
11. Chapter 9: Nancy
    
12. Chapter 10: The Battleground of Dreams
    
13. Chapter 11: Homework
    
14. Chapter 12: The Coffee Song
    
15. Chapter 13: The Two-Wheeler
    
16. Chapter 14: Sometimes
    
17. Chapter 15: Cymbidium Orchids Under the Porch Light
    
18. Chapter 16: Kelly
    
19. Chapter 17: An Appropriate Education
    
20. Chapter 18: Belonging
    
21. Chapter 19: Jillian and Ryan
    
22. Chapter 20: I Hope You Dance
    
23. Chapter 21: Missy and Tommy
    
24. Chapter 22: College
    
25. Chapter 23: In the Swing
    
26. Chapter 24: Sometimes, We Drove
    
27. Chapter 25: Dave Bezold
    
28. Chapter 26: The Team
    
29. Chapter 27: Jillian Turns 21
    
30. Chapter 28: Testing
    
31. Chapter 29: In Love and Moving Out
    
32. Chapter 30: One More Drive
    
33. Chapter 31: Vanuatu
    
34. Chapter 32: Moving Day
    
35. Chapter 33: Number 47
    
36. Chapter 34: A Dream
    
37. Epilogue: Jillian and Ryan Get Engaged
    
38. Acknowledgments
    
39. About the Author
    
40. Also by Paul Daugherty
    
41. Credits
    
42. Copyright
    
43. 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 Ohio 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.