An Uncomplicated Life Page 14

  “Sit straight up on your seat,” I’d say. “Don’t lean either way.”

  “I’m scared.”

  “Everybody’s scared the first time they ride a bike,” I said. “You’ll be fine.”

  We graduated to me holding the back of the seat as Jillian offered those first tentative pushes of her legs on the pedals. “Don’t let go,” she said.

  “I won’t,” I answered.

  “Okay, Daddy-O. Let’s go.”

  Jillian has never seen herself as disabled. She knows she has Down syndrome, but she doesn’t believe she’s different, if that makes sense. Her disability is more of a concept to her. She lacks the capability to take an intellectual accounting of who she is, and how she’s different from her peers. It just doesn’t occur to her. Or if it has, we’ve never heard her talk about it. We’ve never heard her say, “I wish I didn’t have Down syndrome.”

  “Jillian doesn’t even know she’s short,” Kerry has noted. And she is. She’s four feet eight inches tall, and she has stopped growing.

  At a party once, Jillian was making the rounds with a buddy of hers, who also has Down syndrome. “This is my friend Allison,” Jillian said to everyone she and Allison met that day. “She has Down syndrome.”

  While she was learning to ride the bike, there were days when Jillian stood in the garage, helmet slippy, bike at the ready, and I knew she didn’t want to do it. Maybe she’d fallen especially hard the day before. We’d gotten pads for her knees and elbows, ones like those worn by roller bladers. The padding was scuffed and driveway-stained after the first day.

  “I a little bit nervous, a little bit,” Jillian said.

  “I know, sweetie. But you’re getting better. It won’t be long now.”

  We’d wheel the bike down the driveway, to the flatness of the common drive. I’d place both my hands on the back of the seat. She’d climb into the saddle and start pedaling. I’d jog lightly behind her. She’d ask if I had her. I’d assure her I did.

  It went this way for a few weeks. Whenever I’d let go completely, Jillian would turn the wheel abruptly and without reason, fall over and scrunch up her face, auditioning a cry. Sometimes we’d quit at that point. But not often.

  “Let’s go,” she’d say.

  Kelly had figured out his two-wheeler in one afternoon. He might have had training wheels. I don’t recall. He mastered it in a few hours. Maybe that’s why I don’t have the slightest memory of it. What was the day like? Cloudy, sunny, or cool? How old was he? What was the look on his face? What look did I have on my face?

  I remember what it felt like when my father first let me go. It was a whoosh of freedom. It was weightless elation. I’d escaped some earthly shackle even as the tires were in complete connection with the road. I’ll always remember it.

  Did Kelly feel the same?

  I don’t remember if I even asked him.

  Learning to ride a two-wheeler is a landmark experience in a kid’s life, but without the struggle, it’s an assumed act. It’s special, without being special. That describes so much of typical childhood.

  I let Jillian go a few fingers at a time. Ten fingers gave way to eight. Two thumbs gripping the top of the seat back were loosed. “You have me?” Jillian would ask, halfway down the drive.

  “Yes.”

  Something occurred during those sessions with the bike. Time slowed, so memory could keep up. The more we practiced, the finer the clarity of the recollection became. Imagine printing a photograph in a darkroom. You dropped the photo paper into the developing solution, then swished it around the bottom of the pan. The image appeared, though it was hazy at first. The longer you swished, the richer the detail got.

  I remember the day Jillian conquered the bike. It was blue-perfect, page one in the spring catalog of days. A small wind was blowing, nothing serious enough to alter the course of the bike; it was just warm enough to remind us summer was on its way. Ten fingers on the seat became eight. That became four—index and middle fingers, asserting minor control on the navigation system. Four fingers became two. Barely holding on now . . . holding on the way a fork holds soup.

  “You have me?” Jillian wanted to know.

  I said yeah. Then I didn’t.

  Jillian was 20 yards down the drive before she realized she was alone. “I wide!” she proclaimed.

  I remember that. It was more than a decade ago, but I can summon it easily. Shiny copper, freshly minted on the new penny of recollection.

  It’s a moment I lean on now. I’ll be on the golf course late in the day, and I will notice the particular slant of dusk as it leans over a fairway in June before settling like a quilt over the greenness. I will take in the warmth and the solitude and the softness. On an especially cold and bruised day in January, I will close my eyes and fetch that sunset memory. I will make it do my bidding.

  Ordinary blessings are noted and recalled. The out-of-the-blue phone call from Kelly, now working in Brooklyn, a 12-hour drive away. The airy warmth of Kerry’s fingers on the back of my neck, and the solitude of our local park, on the hyper-blue day after a winter ice storm. The spot in the center of our golden retriever’s back, where the itch is perpetual, and she can’t reach it. I get down on my knees, she hops up. I place her front paws squarely on my shoulders. I scratch the itch she can’t reach.

  Bruce Springsteen once sang about it not being a sin to be glad to be alive.

  Jillian pedaled down the drive and away. “Dad,” she announced. “I doing it!”

  She’d moved the stars and the sky. I was there to bear witness. And to recall. To recall.

  The Little Miami Bike Trail is a wonderfully maintained path a few miles from our house. It is straight and level and blacktopped. It follows an old railroad route along the meander of the Little Miami River for 75 miles, from Cincinnati almost to the state capital in Columbus. In certain spots where the trail bisects a small town, traffic can be heavy. Mostly, it’s open road through farmland. It’s a great place for a kid to stretch her wings and fly on her two-wheeler. The last time we rode, Jillian and I did 25 miles on that trail.

  Not bad for a child who wasn’t supposed to be able to ride a two-wheeler. Better for her ancient dad, who gets to savor the ride twice. In person and in memory.

  CHAPTER 14

  Sometimes

  Regrets, I’ve had a few

  But then again, too few to mention.

  —PAUL ANKA

  Helping Jillian master the bicycle was like planting a prayer flag atop Mount Everest. Other times, the effort simply wore us out. Raising a child with a disability can be like eating at a five-star restaurant and having someone pick your food for you. The experience will be good but not what you expected.

  Sometimes, I wish Jillian were a typical child.

  It is a selfish wish, confined to its own atoll by the daily joy Jillian brings. But it’s there, nonetheless, even as I wish it would go away. I love Jillian with a part of me no one can touch. It’s a deeper chamber, protected by its own moats and deadbolts. That place can’t be diminished or compromised. But the limitations imposed by Jillian’s needs are never fully reconciled.

  A framed photograph hangs on the wall of my office at home. Called “Hartwig House, Truro,” it was taken in 1976 by a well-known professional named Joel Meyerowitz. It looks down a first-floor hallway to the screened front door of an older home on Cape Cod, Massachusetts. The hallway walls are covered in thick white paint, generations of coats. The floor is wide-planked hardwood, painted a grayish blue. I’m thinking that by now, a new owner might have sanded away the dull floor paint to reveal the scars and heaves of the original floor.

  The two throw rugs, white with floral stitching, rectangular and faded, dress up the gray-blue.

  This is a sturdy house, a house of generations leaving but always coming back, dutiful fathers and mothers and respectful children, catching fireflies in Mason jars at dusk. Enjoying.

  The photograph shows a bedroom, barely. It appears on the far r
ight, offering a sliver of a glimpse inside. We see part of a bed and a wooden dresser, above which hangs what looks to be a black-and-white wedding picture. The groom appears to be about to remove the bride’s garter, but it’s hard to tell. The bedroom is mysterious but incidental.

  It’s a clear day, probably early in June. It’s late morning. Soft sunlight colors the hallway walls and floor. Not yet the garish glare of midday. This is what I’m guessing as I stare into the picture.

  Directly down the hall is the wooden front door, heavy and permanent, half open to a screen door, beyond which are teases of green. The photo is an invitation to come into the daylight. Explore, seek, wander. It is a new day, a summer day, full of its own mysteries, yielding its own endless possibilities.

  Walk down the hall, past the bedroom on the right and the suggestively half-open front door. Push open the screen door. Escape.

  That’s what I think of whenever I stare at that photo on the wall of the office in my house. Escape. If I stare at it long and hard enough, I can will myself into that summer day.

  Expanding Jillian’s dreams means constricting our own. This isn’t a complaint. It’s not bitterness. It’s just a fact. Her goals tug at ours. They are not compatible. Our lives are less separable than the lives of typical parents and their grown children.

  Sometimes, I resent that.

  Centuries and generations ago, homes were multigenerational. Economics demanded it. So did a lack of easy mobility. Children became adults in the same place where they grew up because they couldn’t afford to get away. That’s happening again now as the economy continues to lurch. But it is the exception.

  Most parents tote the world for 18 or 22 years, maybe a little longer depending on how many children they have. Then, they heave that refrigerator off their backs and begin seeing the world instead of lifting it. How they define that world is up to them: Hawaii, Europe, Atlantic City, a mortgage-burning party.

  After a finite amount of time they are paroled.

  We will never be paroled.

  Kerry and I celebrate Jillian’s milestones. We rejoice when she is 14 years old, in seventh grade, in a regular-ed classroom, fully included. She rides a two-wheeler, she makes her bed. She is respected at school, if not always befriended. Our combined efforts have been entirely worthwhile. Rewarded and rewarding. And yet, the effort needed to get Jillian to where she is now has come at the cost of pursuing our own interests. We have gained much in helping Jillian to the life she has. What we’ve lost—and will continue to lose—is time to explore our own lives.

  Our best friends are the parents of Jillian’s friends. Our social life revolves around Jillian’s needs, social and otherwise. This is unusual only in the number of years we will have to do it. All parents sacrifice for their children, whether it’s escorting them on dates or taking a second job to pay for college. But in homes with typical children, that responsibility comes with a shelf life. Ours is open ended.

  I want to retire somewhere south of Ohio. Winter in this state can be a time for reflection and solitude and the beauty of fresh snow on a fallow field. It can also be gray, depressing and a reason to move. In Ohio, it gets to 35 degrees and cloudy sometime after Thanksgiving, and stays there until the first of March. This is three-plus months of wondering what we’re doing here considering that we are people of free will.

  I dream of South Carolina. I picture short winters and long days on the golf course. There is no snow shovel in my dream—nor is there a car that has quit for lack of a battery spark. There are long, cool drinks on the deck out back and short days of fulfilling, semi-retired labor. Being retired is something to which I aspire easily.

  It won’t happen.

  We won’t leave the social network Jillian has established in Cincinnati. I won’t retire, at least not completely, until I am forced to. I will have to allow for myself and Kerry, and also for Jillian, for as long as I am able. Jillian will work. It might even be full-time work. She will earn a living. But it probably won’t be enough for her to live on.

  Jillian won’t have children. Kerry and I will be grandparents only if Kelly has kids.

  I realize all this. I accept it. But when I study it and dwell on it, I look at that photo of that house in Truro, Massachusetts, on that fine summer morning of infinite promise, and I feel cheated.

  I read Karl Taro Greenfeld’s book Boy Alone not long ago. It is the story of a family’s game attempt at dealing with a mentally challenged son. It takes place the 1970s, and Noah Greenfeld is profoundly autistic. Karl is Noah’s brother. The way Karl Greenfeld describes it, his family is held captive to this child who is incapable of responding to even the simplest gestures of human communion. Noah avoids eye contact. He smiles at odd times. He rocks on the floor, and he manipulates rubber bands with his fingers.

  Karl wonders, how do you love someone who doesn’t love you back? At what point does love harden into obligation? Your heart never leaves the equation, not entirely. It recedes, from the pounding it takes. You never stop trying, even when you stop believing.

  Karl’s father writes of the strain Noah’s disability puts on his marriage: “How can we have faith in a marriage that has biologically backfired?” In Life magazine in 1970, Josh Greenfeld writes, “Until I had a child like Noah, I automatically believed in the institutions of organized medicine, private philanthropy and public programs. Where there’s an ill, I naively thought, there must be a way. The school Noah has been attending does not have the operating capital to provide the mentally ill or mentally retarded child with the same full-time, one-on-one treatment therapy he so desperately needs.”

  Ultimately, the Greenfelds break. They assign Noah to a group home in Southern California. Noah is sent away for being Noah, like the family dog who bites the neighbor’s kid. It doesn’t work out. Noah is bruised and shows signs of sexual abuse so they bring him home. Eventually, when all the wells have been tapped and found dry, the family exiles Noah to save what’s left of itself. Noah winds up in an institution. “Twice-imprisoned” is how Karl Greenfeld describes it. The father isn’t so kind. Josh Greenfeld refers to his autistic son as “genetic rot.”

  Josh even consults the playwright Arthur Miller, who had a son with Down syndrome. Miller tells Josh Greenfeld, “I put him in a nursing home straight from the hospital. I had a Down syndrome cousin. Ruined the family. Brought the family down trying to care for him.” Miller eventually moved his son to a state institution. “He’s a healthy kid, and we visit him. But it’s different. It’s not as if we became attached to him.” Trying to reach the unreachable boy, Karl Greenfeld alternates between caring deeply for his brother and discovering how deep his own well of resentment can be.

  Beyond the ceaseless striving to always do what’s best, there isn’t much in Boy Alone that resonates with us. Jillian is communicative and all-loving. Her disability is far more receptive to whatever one might define as “treatment,” most of which is opportunity and patience. There was never discussion of adoption when she was born. There is no talk of “group homes” now. Jillian has added immeasurably to all our lives. She gives more than she receives.

  But to an extent, Jillian rules our days. And she always will. Disability puts a ring around your life. It is a moat that surrounds even those who can swim.

  It’s not terrible. It’s not even burdensome, most of the time. It is annoying but not life-changing that Jillian will always need to be driven places, even as she masters public transit. It irritates when traffic backs up or I’m mad about something else.

  What gets to me are the dream restrictions. Sometimes.

  Kerry and I celebrated our 20th anniversary in 2003 with a week in a bungalow high in the hills of St. John, in the US Virgin Islands. A rutted, perpetually muddy road, negotiable only by four-wheel-drive vehicle and a multitude of resident goats, led to the one-room house we rented for a week. The views were spectacular: Thick forest canopy, sloping to crescents of sand. Water changing from green to blue and back, depend
ing on its depth and the way the sunlight struck its surface. The place was a Caribbean postcard.

  The house was in Coral Bay, at the far end of St. John, away from the cruise boats and the day-trippers over from St. Thomas, snorkels and underwater cameras in tow. At the base of our hill, by a small boat dock, was a restaurant: Skinny Legs. Calling this place a restaurant was generous. In 2003, it was an island dive, a roof, a bar, some stools and several four-top tables. Two guys originally from the States ran Skinny Legs. You could get cheeseburgers there, and Carib beer, and not much else.

  I befriended one of the guys. Doug Sica lost his job as an electrician in New Jersey in 1978. He applied for 52 jobs, and the first offer he got was on St. John. He and his wife and two small kids moved from Jersey in August of that year. The job didn’t start for four months. In the meantime, Sica tended bar. He tended bar for the next 12 years. Someone else took his electrician’s job.

  Sica had a friend already on the island when he arrived. Moe Chabuz was also a bartender, in Cruz Bay, the island’s largest town. In 1991, the pair sold a boat they owned jointly and spent the proceeds on a ramshackle watering hole called Red Beards, at the other end of St. John, in Coral Bay.

  They renamed the place Skinny Legs after Moe’s pencil-legs. It opened in May of that year, and struggled. Opening a restaurant where most of your customers arrived by sailboat maybe was not a spotless idea. In 1991, Skinny Legs had no tables or food, only alcohol. “It took us nine months to save enough money to buy the grill and the [exhaust] fan,” Sica told me. By the time Kerry and I visited 12 years later, Skinny Legs was alive with grill smoke and bottled beer.

  Sica told me he didn’t have bad days. “I don’t allow them,” he said. Living in paradise doesn’t immunize one from bad days, but it can’t hurt. Paradise doesn’t come cheaply, though. Paradise takes guts. Sica took a big chance, and it made all the difference.

  Doug Sica died two years after we spoke, at the age of 56. “After a short illness,” according to the Skinny Legs website. Moe sold the place on April Fool’s Day in 2012. But what a time they had.