An Uncomplicated Life (19 page)

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, depending 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.

I’ve told this story a hundred times. I get to the end, and I say, “One of these days.” I admire people with the courage to take audacious leaps. I daydream about it. “One of these days . . .”

I won’t though. I won’t leap. One of these days is someone else’s idyll.

Kerry and I do have a post-retirement bucket list. We want to go to Las Vegas on the first weekend of the NCAA basketball tournament, to spend hours in a casino sports book, making silly bets. We want to spend several months living in Ireland. We want to rent a villa in Tuscany. And we want to watch the Super Bowl at Skinny Legs. These are wonderful wishes, but they are fragments of a dream. What we want to do will always be harnessed to what we have to do.

Typical parents might say, “Let’s move to Southern California and live in the sunshine every day.” They might decide, after retiring, that Italy would be a pleasant place to spend a few years. Ireland works for me. We could do that—if Jillian agreed to come along.

Financially, Jillian limits us, too. There is government money, but not a lot. We want Jillian to be as independent as possible. The more money she earns, the less she’ll get from the feds. That’s as it should be. It’s also another chain on our retirement. Helping Jillian more means helping ourselves less.

A few years ago, I was on an airplane, coming back from covering a Cincinnati Bengals game in Oakland. A woman sitting in the center seat of the row in front of me was looking at family pictures on her laptop computer. Snapshot after snapshot of healthy, smiling daughters, two of them, maybe ten and eight years old: Swimming in a backyard pool, at a costume party, posing with their mother and father. Perfect.

I gazed between the seats at the images. I was jealous. I resented this woman and her two beautiful, perfect kids and the smooth arc I imagined they’d follow through life.

These kids, this family: They have no idea. No IEP meetings for them. No constriction. No strangers noticing their kids’ faces, the way some notice Jillian’s, then looking away, into the safe middle distance. The taxi service stops at age 16 for those parents. The bank vault closes five or six years later.

After that horrible first night of Jillian’s life, I stopped feeling as if I’d been robbed. It was pointless to feel cheated or guilty or ashamed. It dishonored the effort needed to build a better Jillian. As the months and years progressed, I even started to feel blessed to have fathered a child with a disability.

I know things that you do not. Jillian has taught me.

But I’m still selfish enough to look at this beautiful 13-year-old before me and see someone whose needs will take precedence over my own. It feels unfair.

A few hours after I got off the plane, after peering at the perfect little girls on the laptop screen, I came from the garage of my house and into my kitchen, where Jillian jumped into my arms and told me how much she missed me. I’d been gone barely 48 hours. “You’re my best father,” Jillian decided.

Life has its tradeoffs.

I don’t think much about South Carolina anymore. Instead of dreaming of retirement, I pray I can stay employed in a choppy economy with little use for newspaper columnists. I get wishful though. That’s when I stare at Joel Meyerowitz’s photo. It is a late morning in early summer, sunny and bright and potentially momentous. The front door is open, the screen door awaits. I stare for a while. I imagine what that day must be like.

CHAPTER 15

Cymbidium Orchids Under the Porch Light

(Today I Met) The Boy I’m Gonna Marry.
—
ELLIE GREENWICH, TONY POWERS, PHILLIP SPECTOR

J
illian breezed through her days so effortlessly that we wondered sometimes what we weren’t seeing. You hand your kids to strangers for six or seven hours a day, and you hope for the best. Until something dramatic occurs, you don’t think much about it.

I didn’t work in Jillian’s classroom anymore. Intermediate school is a little advanced for that. We’d get the nightly ’signment book updates, attend the IEP meetings as needed. We’d listen to Jillian say her day was “great.” We took it on faith, mostly. Part of me wanted to be at school, to see how Jillian
was getting along. She wasn’t shy, she was incurably positive. Jillian was easy to like. Who liked her?

You can’t make the world see your kid the way you do. The random moments that told us who Jillian was, and who she could become, weren’t often on public display. Just because we saw her as extraordinary didn’t mean everyone else did. Every parent thinks his child is extraordinary.

We did well with things we could control. Jillian’s education could be managed, even if it meant wielding the law like a cudgel. We could teach her social skills and basics such as counting money, ordering from a menu and, later, negotiating the byzantine public transportation system. We would give free rein to her will and her spirit. Mastering the bicycle was persistence exemplary enough to hang on a museum wall. There was never a problem allowing Jillian to be Jillian.

We couldn’t make her peers be her friends, though. At a certain point, Jillian stopped getting invited to birthday parties and sleepovers. She ate alone in the school cafeteria. We couldn’t do anything about that.

Perceptions can be changed. How kids choose their relationships is a little trickier. Jillian was fully included—but not in all things.

She never talked about the empty times at school. She didn’t partly because she didn’t believe there were any. No one was overtly cruel. If a peer had referred to her as a “retard” or something equally awful, Jillian would have been hurt. No one did that, ever. The separation was more subtle, and Jillian’s mind wasn’t locked into subtleties. She had plenty of room for compassion and empathy, but not much for introspection or acute observation.

If kids said “hi” to her, if they maintained a surface cordiality, that was enough.

We poked and prodded a little. Her answers were always the same:

“How was school?”

“Oh, I had a great time.”

“What did you do?”

“Same stuff.”

“What did you do at lunch? Sit with anyone?”

“Not really.”

I never wanted to put it into Jillian’s mind that sadness or self-pity could be a legitimate response to her occasional isolation. I never said, “Do you ever get lonely at school?” Instead, I’d ask of her solo lunch times, “Are you okay with that?”

“Yes, Dad. I fine.”

I wondered what the other kids thought of Jillian. I imagined them liking her, in an arm’s-length sort of way. Someone to say hello to, then move on. I put myself in their 12- or 13-year-old shoes. Would I be friends with Jillian? Would we hang out? Would the widening gap in her ability to communicate scare me away?

She looks different. How much does that matter?

I have no problem dealing with people with disabilities. I’m used to it. I’m an adult. What if I weren’t?

When I was 10 or 11 years old, after my mother died and before my dad remarried, I spent the afternoons after school with my best friend. Mrs. McKee and Aunt Aline, who looked after me until my dad picked me up after work, lived on his street. The kids in the neighborhood spent lots of time playing
sports in the street. One of them, a boy named Patrick, had Down syndrome.

On the infrequent afternoons when Patrick came outside, we included him in our games. Patrick wasn’t as coordinated as the rest of us. He played with difficulty. When we played football, no one wanted to play center, so we assigned it to Patrick. We had no issues with him—he hiked the ball and blocked. But we didn’t talk much to Patrick. I never found myself one-on-one with him, and I was glad about that. I didn’t dislike him. He just made me uncomfortable.

We cheered when Patrick achieved things the rest of us did ordinarily. Nice block, Patrick. Way to hike the ball. It made us feel good about ourselves. When we finished our games, Patrick went home by himself. No one invited him to have a Coke. We didn’t include him.

I look back at that time now with an informed regret. Feeling good and doing good aren’t always the same. We patronized Patrick; we didn’t befriend him. Sympathy without empathy can be hollow. If I met Patricks’ parents now, I’d tell them I was sorry.

This isn’t 1968, and Jillian isn’t Patrick. But some of the same hesitations remain. That’s how I perceived things with Jillian and her peers as she moved from elementary school to the intermediate building.

I wanted more for her than that. The seismic fun of childhood is a co-dependency. From the time she entered kindergarten, Jillian had willed herself into the mix. Socially fearless and engaging, Jillian wasn’t left out until fourth or fifth grade when kids started to notice she was different. It was a constant tug. Each new achievement took Jillian closer to a life
of independence and choices. Each advancing school season deepened the separation.

We’d gotten glimpses of Jillian’s future. The Rutkousky girls next door outgrew her, one by one. First Elisabeth, the oldest and Jillian’s age, then Jessie, a year younger. Finally, Anna, who was younger than Jillian by three years. Paths that once intersected on the common drive now diverged. It was the natural order of things.

“I go Jessie’s house,” Jillian said. It was a morning in summer, when Jillian was eight years old. She was up early, dressed and ready to rumble, before the rest of us had even pondered the day.

“I go Jessie’s.”

For a while, that was fine. Occasionally, Jessie would appear at our door, as Elisabeth had before her, and Anna would after. Jillian and Jessie would play. But after a few months, Jessie had other things to do. “But I love my Jess,” Jillian would say, when we had to tell her Jessie was busy and couldn’t play.

Months, even years, after Jessie had made it plain that she had other things going on, Jillian would spot her on the drive, and go tearing out of the house. “Jess, Jess!” she’d scream, delightedly. Jessie would get the best Jillian hug.

“Want come over my house?” Jillian would ask.

Kerry and I would intervene before it became too uncomfortable. “You need to give Jessie a little space,” we’d say.