An Uncomplicated Life (20 page)

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 as 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.

“I beautiful, Mom,” she said.

“Yes,” Kerry answered. “You are.”

Fifteen minutes away, Ryan Mavriplis was slipping into a suit and tie. He’d spent part of the day getting a haircut and a shave. He was 16 years old, a freshman in high school. I’ve often marveled since that night at the coincidences of great fortune that have filled Jillian’s life. There have been so many of them that I don’t find them coincidental anymore:

The amniocentesis that wasn’t. The anger Jillian used in the hospital to help her breathe. Nancy Croskey, teaching fourth grade in our school district. And Ryan Mavriplis, being raised nearby, also to believe opportunity was a birthright.

He arrives at our house at 6:00 p.m. sharp. He is a young man in a black suit, white shirt, and a red tie. He strides purposefully up the sidewalk and to the door, offering me his hand. “Good evening, sir,” he announces. “I am here to take your daughter to the Homecoming.”

His parents, Dimitri and Ellen, stood just behind him, beaming, and followed Ryan inside.

We had no idea, then, what this evening would portend. It was just a first date. Lives are filled with first dates. Living with Jillian meant living in the moment. Anything else could be overwhelming. This was a fine moment.

Jillian stands at the top of the stairs, just out of Ryan’s gaze. Her formal construction is complete: Dress and shawl, shoes and pedicure, manicure, braids, and makeup. I look up
at her from the landing below. Ryan has moved on to more introductions, in the family room.

“Dad, I so nervous,” Jillian says.

It’s impossible to describe what she looked like in that instant. That’s why we have poets and sunrises. Jillian was slim in her form-fitting aqua dress. Audaciously red lipstick propelled her into womanhood. She paused at the top of the stairs to catch her breath. She gathered her poise as she prepared to pass through this blooming window of time.

“Don’t be nervous, sweetie” is what I manage to say. “It’s going to be a great night. The best.”

“Is Ryan handsome?” she asks.

“Yes, Jills. He is.”

She begins a slow stride down the stairs and across some new and indefinable threshold. She holds the railing until she reaches my outstretched hand. “I so nervous,” Jillian says again.

The day Jillian was born, I thought of this moment. I thought it would never occur, and I grieved. I pondered the cruelty of her best steps stolen, before she ever got to dance. Nearly 15 years earlier, to the day, I had hurt for my baby girl and what I believed would be a half full existence. A life without Homecomings and proms—and the promise of both—is no life at all. I wondered why God would do this to my daughter. Now, I am at the bottom of the stairs, holding her hand. Knowing that, in a few hours, she will dance.

“You look beautiful,” I say.

In the years after this, as Homecomings, proms and anniversaries with Ryan assumed a familiarity, Jillian would wait downstairs and stare out the window until she saw Ryan’s car
turn onto the common drive. Then she’d run upstairs so Kerry could give her a proper entrance.

“In-tro-ducing . . . Miss Jillian . . . Phillips . . . Daugherty!”

She’d enter then, with all the poise and confidence of a runway model.

Not this time though. This was the first time, so she held my hand, maybe for the first time in the few years since she had asked that I not escort her to the bus stop.

“Ready?” I ask.

“Yes,” she says.

Jillian takes the first walk of a lifetime then, down the hall and into the family room. Ryan waits, standing tall, a corsage box in his hand.

“Hey, Ryan,” Jillian says.

“Hey, Jillian,” Ryan says. “You look beautiful.”

He removes the wrist corsage—an orchid!—from the box. “You want to put it on me?” Jillian asks. Ryan asks how. I help him get the corsage safely from the box. Kerry helps place the corsage on Jillian’s wrist.

“That okay?” he asks.

The flower is on the underside of Jillian’s wrist. She turns it upright. “Thanks, Ryan. You’re so sweet. I got something for you, too.”

Kerry takes Ryan’s corsage from its box and pins it to the lapel of his suit.

Jillian says, “We’re a good team.”

They leave then, with Ellen and Dimitri, arm-in-arm across the lawn. We follow them to Ryan’s house, where several of Ryan and Jillian’s friends have gathered. Kids from soccer and
Special Olympics, mostly. They’re all going to dinner first, and then the dance. Sparkling grape juice fills champagne flutes.

Ryan offers a toast: “I want to thank everyone for being here. To my good friends Ben and Robbie and Jacob and Margo and Jillian. I’m happy I have a date. Amen.”

Jillian adds her own words: “I love this time to spend with my boyfriend. I love my coach. I love this very lovely evening. I really love you guys.”

A year later, in the same spot, Ryan offered another tribute to the assembled revelers: “To my girlfriend I love with all my body and love I have in my heart. She’s an angel and good at soccer and everything. Amen.”

And amen.

Ellen swears now that in the backseat of the car, on the way to dinner that first night, Jillian said, “Ryan and me gonna get a ’partment and get married.” We take Ellen’s word on that one. None of us were that far along yet—at least not that night. The hope was there though that Jillian and Ryan would have such a chance.

They danced that night. “All the slow ones,” Ryan said.

Jillian praised her boyfriend’s dancing prowess: “Lots of good moves. I felt like I was in love.”

I had worried Jillian’s disability would come to define her. Then Ryan arrived. The door opened. Everything was possible again.

There have been nights, more than I could ever have imagined, when Jillian and Ryan have lived my dreams for her. They’ve lingered in the porch glow. The scent of cologne has become familiar. Ryan has felt the delicate touch of a young lady’s fingertips on the back of his neck as they danced around
the room. They have shared the mysteries. They’ve earned what lovers own.