An Uncomplicated Life Page 15

  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

  Jillian 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 go
od 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.

  Kids grow, and the road forks. The Rutkousky girls were never anything but gracious. But their lives weren’t Jillian’s life.

  Jillian was 12 years old when she last had a party that included typical kids. Ally Ballentine, a girl Jillian had been friends with since kindergarten, and Nancy Croskey’s daughter Lauren came. They were polite. Twelve-year-olds are not practiced at the art of grin and bear it, though. It was the last time either was at our house.

  Being in regular-ed classrooms didn’t ensure a regular childhood. No amount of scholastic striving could overcome being excluded. Jillian’s classmates were never mean to her. They just moved on. Jillian would make her way in the world. If she couldn’t share the journey with friends and lovers, what would it mean?

  I wanted her to experience the expectant glow of a porch light with a young man late in the evening. I wanted her to know the smell of his cologne. She had a right to experience the mysteries of attraction, shared under moonbeams with a boy who made her happy. Everyone has that right. This was my greatest hope. It was my deepest ache, too, because I couldn’t do anything about it.

  The possibility existed that some routine evening, Jillian would appear before us to announce she was different and want to know why. What would happen when the world stopped being her friend?

  An image haunted me as Jillian passed through fourth grade to fifth, from the cocoon of elementary school to the multiple classrooms of intermediate school and beyond: A poster I’d seen, circa 1980, of a boy with Down syndrome. His head was bowed, his gaze ached. “I just want a friend,” it had read.

  One Friday night when Jillian was in sixth grade, as Kerry and I honored our exhaustion with a movie, a pizza and the couch, the poster came to life. Jillian entered the room crying.

  “What’s the matter, sweets?”

  “I don’t have any friends.”

  We told her that wasn’t true. Actually, Jillian did have one very good friend. Katie Daly’s family had moved to town three years earlier. Katie had Down syndrome. She was a year younger than Jillian, and they’d become inseparable. Still, hearing Jillian say she had no friends ached me in a deep and different place. There is no loneliness like the loneliness of a child.

  Up to this time, we had owned a sort of reverse snobbery when it came to Jillian’s social life. We had wanted so much for her to be fully included in school that we didn’t put her in situations where she was associating with the kids in the special-education rooms. We wanted her role models and peers to be typical kids. Jillian went to tap class; she took ballet. Up to fourth grade, she played basketball and soccer with typical kids.

  As she grew older, that left Jillian in an awkward and limiting place. She was too advanced socially—at least in our thinking—to be friends only with special-needs kids. Yet she was too far behind to hang with typical children. She was neither here nor there. Jillian’s choices narrowed.

  Kerry, who always had a better grasp on the actual, recognized that it was time to fix what she could fix. While I was dwelling on Jillian’s fading bond with typical kids, Kerry marshaled the alternatives. “It wasn’t a fear for me,” Kerry said of Jillian’s loss. “It was an inevitability.”

  She took the offensive, even while Jillian was still active with typical kids. When Jillian was in seventh grade, Kerry enrolled her in Special Olympics swimming and TOPSoccer, a program for kids with all manner of disabilities. The league’s mission was straightforward: “To allow every child with special needs the opportunity to participate, contribute and excel in the game of soccer.” Kids in wheelchairs played. Kids in walkers, kids on crutches. Autistic kids. Lots of kids with Down syndrome.

  There was coaching and teaching. There were games and trophies and championships. Mostly, it was social. It was a chance for kids with disabilities to hang out. It was relaxed. Given the over-exuberance that rules youth sports now, it was nice. As someone who covers sports for a living, I thought the kids in TOPSoccer owned a perspective the rest of us should borrow.

  It was also where Jillian met Ryan Mavriplis.

  Ryan was two years older, and he attended a nearby public high school. He was every bit her equal, intellectually and socially. His parents had raised him the same way we’d raised Jillian. His mother, Ellen, would become so passionate about Ryan’s education that she’d make it a career choice. The shingle hanging outside her office speaks to her philosophy:

  Inclusion Advocates.

  Jillian was about to turn 15 when she found herself alone with Ryan on the far corner of the practice field, acres from the eager ears of parents and teammates. It was her second year of TOPSoccer, and she’d known Ryan for more than a year. Ellen’s husband, Dimitri, was her coach. Moms at practice had noticed their flirtations. Most thought nothing of it. Kids flirt all the time—even kids with disabilities.

  “I would like to ask you something,” Ryan began.

  “What?” Jillian answered.

  “Do you know that my school, Sycamore, has a Homecoming?” Ryan began.

  “No.”

  “It’s a dance. You go to dinner before. Have you ever been to a Homecoming?”

  “No.”

  “Would you like to go with me to Sycamore’s?”

  Well.

  I wasn’t there when Jillian got that proposal. They both told us about it later. I wish I had been. Sunshine, in human form. I spent years fretting her social life. In one instant, all that vanished. My little girl would be going to Homecoming. Cymbidium orchids under the porch light.

  Ryan approached the exalted moment with some trepidation. He was nervous. “I was afraid she might say no,” he remembers

  That was never a possibility. Jillian was at once happy and amazed. She pronounced Ryan “a gentleman.” She began to blush: “You should have seen the expression on my face. I loved this guy.”

  “Love at first sight,” Ryan says.

  Kerry watched from a distance a
s Jillian and Ryan approached, beaming. Jillian was reserved for about a second. Then she smiled. Then she ran. “I have a date! I have a date!”

  I’m not sure whom I wanted that moment for more. Jillian, of course. But for me too. Kerry and I had always been too busy advocating for Jillian to cry for her. I’d said to Kerry many times, “If Jillian isn’t sad, we shouldn’t be, either.” Of course, I didn’t believe that, even though Jillian was almost never sad. Kerry saw it differently. She had never doubted that Jillian would have boyfriends.

  Jillian spent that night running around the house, offering joy in a singsong voice: “I got a da-a-a-a-te! I got a da-a-a-a-te! Woohoo!”

  She needed a dress. She needed shoes—open-toed, which meant she would need a pedicure. There is some sort of women’s code that says no one can have a pedicure without also having a manicure. So Jillian would have that too.

  She and Kerry spent an entire Saturday shopping for a dress. Fathers and sons play catch. Mothers and daughters hit the mall. They went to at least five stores, where Jillian tried on ten dresses. She loved them all. She couldn’t stop looking at herself. Jillian’s primary requirement was that the dress she chose be sheer enough to swoosh when she spun around. She spent an afternoon in dressing rooms, swooshing in lots of dresses.

  They settled on a teal number that stopped just short of her knees. It had spaghetti straps. It sparkled.

  Finding shoes was a challenge. Jillian’s size-two feet were as tiny as she was. Short of buying a Barbie doll and stealing its high heels, the shoes had to be dressy, without looking like something a six-year-old would wear. They settled on a pair of black strapped shoes.

  Kerry sewed Jillian a shawl to match the dress. On the day of the dance, she spent an hour doing Jillian’s hair into a perfect mass of well-mannered braids and made sure her makeup was perfect. She applied the powder, the blush, the mascara and the lip gloss. Jillian liked the makeup. It allowed her to look at herself in the mirror, never a bad thing as far as she was concerned. It also gave her a reason to feel special in a way not always associated with kids like her. This wasn’t just Dad’s dream being realized. Jillian beheld her reflection and found it pleasing.