An Uncomplicated Life Page 20

  Mister Number Two still draws the occasional glance from his Best Girl. She has moved on, and that is the way it should be. Number Two still gets that occasional wink, though.

  JILLIAN AND RYAN LIVE their once-upon-a-times. They are who the street-corner poets wrote about in the still of the night. Their relationship informs us. We look at them and say, “This is how it can be.”

  A few days later, Jillian writes this:

  Dear Ryan:

  I love you so much in my heart and this is amazing we are dating about 6 years. I have been thinking about our love and kisses too. We are wonderful together. I will make a love song for you.

  Ryan reads it, and reddens. “I love your daughter, sir,” he says.

  As the years have passed, we’ve loosened the leash. They’ve celebrated an anniversary with a dinner cruise on a stern-wheeler, where they delighted the other passengers with their dancing and, later, romancing on the deck of the boat as it plied the Ohio River past the city lights of Cincinnati.

  We like to think the way we interpret their relationship is also glimpsed and appreciated by the rest of the world. Acceptance and respect aren’t solely the province of “typical” couples. They can happen to anyone whose mind is open and whose heart is as willing as it is pure.

  The Dells once sang, hopefully, that “Love is so simple.” Most of us have disproved that pronouncement, through word and deed. We have regret and sadness. Not all of us, though. Not all of us.

  Two years ago, Jillian and Ryan went to dinner at the Cheesecake Factory at a local shopping mall. Ryan appeared especially nervous as we drove them to the restaurant. “You okay, Ryan?” Jillian asked him. “Yeah, fine,” Ryan said. We dropped them off and arranged a time to pick them up.

  After dinner, Ryan said, “I have somewhere I want us to go.”

  “On a trip?” Jillian asked.

  “No. Better.”

  They walked the length of the mall. Ryan held Jillian’s hand.

  “Where we going, Ryan?” she asked.

  “You’ll see,” he said. They arrived at a jewelry store.

  “Oh my God,” said Jillian.

  Ryan informed the clerk of his intentions: “We’ve been dating six years. We’re very serious.” Ryan introduced them. “My name is Ryan, and this is Jillian, my lovely girlfriend. I am going to marry her.”

  Ryan asked to see engagement rings. The clerk obliged. What the heck.

  Ryan took the first diamond between his thumb and forefinger. He got down on one knee in the middle of the jewelry store in the middle of the shopping mall. “Will you make me the happiest man?” Ryan asked.

  Of course, Jillian couldn’t say yes fast enough. She tried on several rings, decided she preferred a thin model. “I will definitely hold on to this ring,” the clerk said.

  Ryan said that would be great. “I’ll be coming back soon.”

  Soon being a relative term, of course.

  Ellen once said, in the midst of one of our contrarian discussions, “Everything you’ve fought for is for the bigger purpose of Jillian spreading her wings. I want Jillian and Ryan to be an inspiration to other families. They’re walking the front lines.

  “There should be more Ryans and Jillians. There can be. Their stories can be greater than ours.” Ellen imagined the evolution if kids with disabilities jumped on the Ryan-Jillian track at a far earlier age: “If they do in first grade what we didn’t do until high school, who knows how this thing can evolve?”

  Once when we were in the car, the big yellow taxi, I asked them why they got along so well. “You first, Ryan,” I said.

  “Because I love her and respect her and want to protect her,” Ryan said.

  “Jillian?”

  “Because I trust him and have fun being with him,” Jillian said.

  Then they went to dinner and a movie.

  CHAPTER 20

  I Hope You Dance

  And when you get the choice to

  sit it out or dance . . .

  —MARK D. SANDERS AND TIA SILLERS

  On the morning of her graduation from high school, Jillian arrives in our family room, wearing a purple and white sundress and a look of expectancy. This is it. Today is May 30, 2009—her day of all days. “How do I look, Dad?” she asks.

  I pull her close so she can’t see the hole I’m biting into my lip. I make my eyes big because I can feel the plumbing about to burst and hope the extra room will give the water some place to go other than down my face. This is her day of triumph, not mine. “You look beautiful,” I say.

  “You okay, Dad?”

  “Never better,” I say.

  I was proud of Jillian. I was proud of Kerry, who’d done 19 years of heavy hauling to get Jillian to this day. And of Kelly, whose love and support for his sister never lagged. I was proud of myself, too, in a way I could feel but not describe. It is true that the striving is the point. You do all you can, and the result will speak for itself. I was proud of myself for the daily tug, be it helping with homework or tying her shoes or pounding my fist on a conference table.

  There had been lots of Eureka! moments in our lives with Jillian to that point. None happened without the everyday push. I was proud of the everyday push.

  And it was true that I had never been better. There aren’t a lot of days in our lives that truly make us feel happy for being here. Births and weddings, certainly. And graduations. Especially this graduation. To this point, everything Kerry and I had ever dreamed for Jillian, every promise we’d made to her and to each other, had come to pass. All we’d ever done for Jillian was fight for her right to be Jillian. She’d done the rest.

  Graduation Day defined her. She might have other days as boldly glad as this one. All would engage the same sand and spirit she’d employed to become a high school graduate. Tears that morning honored the sand.

  Kerry had picked a tune to commemorate the day. I’m always pulling lyrics from songs, wishing I could give life to feelings the way songwriters do. Van Morrison, Jackson Browne, Bruce Springsteen: All bards to me, blessed with the gift of putting essential truths to music. When Jillian was born, I played Springsteen’s “Walk Like A Man” over and over. The tune isn’t about a father’s relationship with his daughter; it’s Bruce, dealing with his feelings for his dad. No matter. I appropriated it for my own heart. A line about “steps stolen” cut especially close.

  Bob Dylan informed Jillian’s first days of school, each succeeding year adding to her independence and leaving Dad increasingly forlorn and melancholy. I had seen Jillian’s ribbons and her bows, falling from her curls. Meantime, Jackson Browne told Jillian to “keep a fire burning in your eye.”

  And so on. Kerry wasn’t as connected to this stuff as I was. She was far too practical and striving to take time to wallow in heavy-duty soul wandering. Except on this day. Kerry bought a copy of a Lee Ann Womack CD that was released nine years earlier, when Jillian was ten years old. She’d have been in third grade then.

  As Jillian made her way downstairs on graduation morning, I slipped the CD’s title tune into the player. “I Hope You Dance” is not complex or monumental. It speaks universal truth, though, the way lots of country songs do.

  Promise me you’ll give faith a fighting chance . . .

  The song is about courage and preserved innocence and what Jillian would term “being my own a’vocate.” It’s the Jillian Daugherty Show, the two-wheeler, the homework, the dance team, the graduation Walk. You wanna piece of me, Daddy-O? It’s possible to sum up a life in a few wonderful and corny stanzas.

  I hope you never fear those mountains in the distance,

  Never settle for the path of least resistance

  I put my right arm across the breadth of Jillian’s shoulders. My left hand slips into her right, our fingers meshing like braided rope. “Let’s dance,” I say.

  I’d like to say the rest of the day was equally emotional. I am Irish. Blubbering at the slightest provocation comes with the sod. Van Morrison calls it the
“inarticulate speech of the heart.” In my heart’s eye, I foresaw a pageant of tears.

  I imagined Kerry and me and the healthy cast of family and friends as walking faucets. Jillian was the first child with Down syndrome ever to graduate from Loveland High School as a fully included student. The nightly Everest of homework had been scaled. The unfortunate battles with the school people had ended in an uneasy truce. Another Can-Do had been notched on Jillian Daugherty’s belt. Tissues all around.

  But it wasn’t that way. Except for the brief dance, the day was not emotional. We never doubted that Jillian would graduate. All the striving contained an assumption that this day would come. Tears would have flowed only if she’d been derailed. It was a step, not a summit. It was cause for pride and satisfaction, no different than when Kelly graduated from the same high school five years earlier.

  College was the next chapter, to be followed by a job. A life in full. High school graduation was meaningful not for the symbolism of a diploma line, but for the lessons it offered.

  Jillian was atypical mainly in the lengths she went to to earn this day. We never stopped working because she never stopped trying. It was a perfect intersection of effort and courage. Giving anything less than everything we had would have been a betrayal, both of Jillian and of the ideal we had set her up to represent. We never feared those mountains in the distance.

  That came with a mandate that she prove herself worthy of our pugnacious audacity. That kind of pressure might have bent a lesser kid. Jillian made it light. Jillian did the projects, wrote the papers, took the tests, earned the grades. Her papers were shorter, her tests modified to fit her abilities. The effort required was no less giant. Jillian lived up to the ideal we had created. Everest had been scaled. This was the day for planting prayer flags at the summit.

  KERRY’S PARENTS WERE IN town for the occasion, as was Kerry’s sister, Janis. Kerry’s aunts. My brother Jeff had come from his home in Columbia, Maryland. Kelly was home from Ohio State. Nancy and Bill Croskey, and Mary Smethurst. The day would be hectically joyous. I wanted mine and Kerry’s part of it to be quiet and embraceful. Before the collective roar, my daughter and I danced small circles to words of pure hope.

  Whenever one door closes, I hope one more opens.

  I find myself cupping the back of her head in the palm of my right hand, the same as I did when she was a few days old and her head needed supporting. We made promises to her then. She was living them now.

  I asked her, as we swayed, if she understood the meaning of the words to the song. “ ‘When you get the choice to sit it out or dance, I hope you dance.’ Why is that special to you?”

  Jillian, ever literal, said, “It means to be on the dance team.”

  “Yeah. But what else?”

  “Like going to college. That’s a hard thing,” Jillian said. “People don’t ’spect that for me.”

  There was one more triumph to attend to. It spoke loudly to Jillian’s impact on the people who allowed her to touch their lives. It involved a lanky six-foot-three senior named Evan Stanley.

  Loveland has a tradition at its graduations. Seniors enter to “Pomp and Circumstance,” two by two and do The Walk as partners to their seats. Whom you walk with is a big deal. Your partner is usually a close, longtime friend.

  We worried—no, check that, I worried—that Jillian would make this next walk of a lifetime by herself. Fully included in some things, as always, but not in this thing—this essential thing. Jillian had been to Homecomings and Proms with Ryan. She’d lived those joys. She’d danced. The essential fiber of high school is not acquired in the classroom. Thirty years later, no one remembers Algebra II. What if this most social of children did this walk alone?

  This was where the tide of Jillian’s natural, innocence-fueled optimism met the rocks of high school reality. She was a doer, a giver and a pure heart. What she wasn’t was cool. At least not as defined by her peers.

  The Walk was not the same as eating alone in the cafeteria. Or never being invited to the parties typical kids threw. Those were symptoms. So was The Walk—but on a far larger scale.

  “What if no one walks with her?” I asked Kerry.

  “I don’t know,” Kerry said. She wondered, too.

  As with all previous dilemmas involving Jillian’s nonacademic life, I didn’t really want an honest answer. I wanted affirmation that someone would walk with her.

  In the spring as graduation was approaching, Kerry was in the gym one day, teaching a class, when Evan Stanley walked in.

  “Got a minute, Mrs. Daugherty?”

  Of course. Kerry loved Evan, who befriended her daughter without reservation.

  Evan paused for the briefest of moments. Kerry knew something momentous was coming.

  “Would it be okay if I walked with Jillian at graduation?”

  There were times when Kerry and I knew what pure joy felt like. We’d never have experienced that without Jillian. We might have thought we did. Kelly did plenty of things that made us glad to be alive. None provided the sort of life-ecstasy of Jillian’s first porchlight evening. Or of Evan Stanley’s simple request.

  Sometimes, you want nothing more than having your kid belong. A seat at the table, a spot in the photo. We fought and fought, and we tried as hard as we could in the battles we could win. When the moments weren’t so easily won, we prayed fate would be kind.

  Evan didn’t think what he was doing was noble or extraordinary in any way. Jillian was a real friend to him, and doing The Walk with her was logical. But he had to know that his request meant everything to us. Kerry hugged Evan and cried.

  For a few weeks before graduation, Jillian spoke of nothing else.

  “I’m walking at graduation with my home dog,” she said.

  I doubt any of Jillian’s classmates knew how delighted she was about walking with Evan Stanley, her home dog. Very few of them probably gave their own walk a passing thought. They took it for granted. Jillian relished hers for weeks.

  It’s interesting how an extra chromosome is seen as a disability, yet its presence contributes to the sort of natural happiness Jillian possessed and shared. Evan knew that others looked at Jillian and saw Down syndrome. He saw her disability as a surface trait. “The person Jillian was, wasn’t characterized by her disability,” he said.

  Evan was a senior at Bowling Green State in Ohio a few years later when we talked about his friendship with Jillian. They maintain a close, if infrequent, relationship. I asked him what she’d taught him.

  “Don’t judge a book by its cover,” he said. “She taught me that, in its purest form. Having Jillian in my life definitely showed me to be open with anyone and everyone. Once you can look past what you see on the outside and the stereotypes that come with it, you can get that true friendship I think we all want and need.”

  Jillian and Evan Stanley, the night of their high school graduation.

  Graduation was held in the 10,000-seat Cintas Center on the Xavier University campus. We sat in the upper concourse as four-foot-eight Jillian Daugherty and six-foot-three Evan Stanley made the stately walk together down the center aisle, between the rows of folding chairs, from one end of the arena floor to the other. There have been other occasions when Jillian’s peers came through when it really mattered. There still are now. None meant more than that occasion.

  Jillian accepted her diploma. It was a testament to where we were emotionally that Kerry’s biggest concern was how Jillian would react, center stage, upon getting that validation. Please, Jillian, no dancing. Jillian got her diploma, smiled and pumped her fist.

  That’s about what we did too. Sitting in the stands, I’d expected to be besieged by memories and stricken with melancholia. “Your little girl’s growing up,” Jillian had said to me that morning as we danced.

  Instead, I was relieved. I felt we’d done our part, for Jillian and for other kids like her, younger kids, who one day would walk the same walk.

  Years later, I met with Kevin Boys, the
superintendent of Loveland Schools at the time Jillian graduated. I wanted to know why it had been so hard. After the race, it’s easy to say how the effort was all worth it. It’s harder in midstride. We never had doubts that Jillian would reach this day. We were saddened and surprised at the effort involved. Kerry and I had climbed our own Everest.

  Boys was thoughtful. Far removed from his duties as superintendent—he was the president of a local college by then—Boys was candid. He said our impression that Jillian had gotten a better education early in her school years, from teachers who seemed to care more, wasn’t based in fact. It came down to numbers.

  “How many kids were in Jillian’s second-grade class? Twenty-five? Third grade, the same. Fourth grade, the same. Those teachers have all day to influence and teach those kids,” Boys said.

  “You go to middle school, you have team teaching. There are maybe five times that many kids per teacher. High school? More. You can only spread yourself so thin. We had four counselors [at Loveland High] for 1,300 kids.” Boys called it “an organizational downfall of public education.”

  “High school teachers are different,” he said. “They’re much more subject-oriented than kid-oriented. [Their] job is to teach biology, not to teach kids biology.”

  I asked him why school officials didn’t share our vision for Jillian. That had nothing to do with numbers. Why wouldn’t teachers and administrators want to dream along with us? Jillian made dreaming easy. Who else loved Mondays? Sometimes, it seemed the school’s mission was to hold Jillian to what it believed was the proper path instead of allowing her to blaze her own trail, just like a typical kid. How do we fix that attitude?

  Boys admitted that schools “don’t spend enough time on that visioning aspect. Asking ourselves, even as parents, ‘What do we see our child doing’, and how does this schooling” meet that vision?

  “We don’t have a good way to measure it. We have an IQ test. The SAT, the ACT, they predict school success, not life success. They can’t judge Jillian’s ability to succeed. Part of the challenge is [finding] someone who’s in a position to say what a child can do. Educators can’t. We don’t have the tools. Parents might not be able to.”