I wanted time to slow on Saturday. That morning, I promised myself to view the day in slow motion, as if I were a football referee staring into a replay camera, after a coach’s challenge. This singular day, this triumphant moment, would not elude me.
Only, it did.
The whir of a wedding, when you are directly involved, assumes a life of its own. There are so many people to thank, especially when the bride and groom have special needs. In my toast, I thanked everyone. Not only for coming, but for being there for Jillian and Ryan. It does take a village. Everyone at the wedding, all 160 of them, played a part in helping J and R get to this moment. All of them took the time to See our kids, rather than simply Look at them.
Seeing is active. It requires empathy and engagement. Seeing people for who they are, rather than looking at them and passing judgment, is essential. Not only to people like Jillian and Ryan, but to all of us. Don’t judge me by what I look like. See me for who I am. It is a basic civil right.
The wedding was borne on a wind of joy. No one who attended was not moved. Among the best traits of people born with Down syndrome is their singular inability to fake anything. The emotions you see are the emotions you get. They have no agendas, no guile. They’re only occasionally self conscious. On Saturday, that made for two of the most unabashedly happy people the world has ever known.
I commend to your viewing pleasure the video and photos of the event, which will be up here today. My wife Kerry, fresh from orchestrating the wedding, now is free to administer the website. It will get better for her participation. I promise.
That’s it for now.
Expect. Don’t Accept.
For months, Jillian would say, “I’m getting nervous about my wedding” and I would answer with, “Jills, it’s not for another 13 months.” Or a year, or six months or. . .
It’s here. On Saturday night at 6, my 25-year-old daughter and her boyfriend of more than a decade, the estimable Ryan Mavriplis, will be wed. It’s the latest dream completed, the newest springboard to whatever magic comes next.
“I’m so happy, Dad,” is what Jillian said about that on Sunday, when she took me out for a Father’s Day breakfast. “And I’m still nervous.”
They met nearly 11 years ago, on a soccer field. TOPS soccer is a league for kids with disabilities. Ryan’s dad was the coach. One day after practice, Ryan pulled Jillian aside. He had something to ask her. “There is this thing called Homecoming,” he began. “It’s a dance. Have you heard of it?”
Jillian had not. But it sounded exciting.
“I would like to take you,” Ryan said.
They stood together across the field, away from where the parents sat in their lawn chairs, awaiting the end of practice. After the invite, Jillian burst across the field, smiling as if she’d just won the world and all the joy in it. “I have a date!” she said. “I have a date!”
My biggest worry for our daughter never involved getting her educated or helping her become a responsible and independent adult. We’d manage that. It was that she would not enjoy the fun and rituals of growing up with friends. The sleepovers, the play dates, the proms and the Homecomings. The feel of a young man’s arm across her shoulders. The pomp of corsages, the comfort in belonging. All the things that put the living in life.
Kerry and I could force the school people to follow the law. We couldn’t force Jillian’s peers to accept her. I worried about the empty weekend nights.
That all ended 11 years ago, with that first Homecoming evening.
Jillian and Ryan have been together ever since. They love, they fight, they’ve been apart, they’ve reconciled. Just like the rest of us. Through the years, they’ve earned a mutual respect and trust. It culminates Saturday at 6, in an outdoor ceremony within a nature preserve. Some 160 folks will bear witness. In some way, each has been touched by the couple’s pure kindness. In turn, Jillian and Ryan’s lives have been improved by each member of the village that will attend Saturday.
That’s how it’s supposed to work.
On our list of possibilities for Jillian, marriage was assumed. Kerry and I never thought Jillian wouldn’t get married. And here she is.
Check back here next week. We’ll post some photos. I’ll write a little something, once I’ve regained my composure.
I wrote this, for the Cincinnati Enquirer. A reminder that time is a thief. Best to live for whatever it gives. Jillian is 25 now. She was 18 last week, I think.
Time changes everything Age leads to new beat in life’s dance BY PAUL DAUGHERTY | PDAUGHERTY@ENQUIRER.COM
Jillian turned 18 Wednesday, youth-to-woman, some secret threshold crossed, no turning back. I saw her differently. She got a necklace for her birthday, a couple pairs of shoes and $70 cash. She liked the cash. “Seventy bucks!” she said. “Big money.” Children will always be children in their parents’ eyes. But the young lady before me bears no resemblance to the girl I saw yesterday. Yesterday. . . I grabbed her up from her spot in the hospital crib. She was no larger than a thought. Six pounds and some, six weeks old. I hummed her an old standard from the early ’60s. The Spaniels, I believe. “Goodnight, My Love.” ” … Pleasant dreams, sleep tight my love. “May tomorrow be sunny and bright.” We danced. After a few minutes, she was asleep. The doctors at Children’s took her from me and reconnected the tubes that kept her hydrated. Jillian had bronchiolitis. She was dying to breathe. And then she wasn’t. After a week or so, not long after the doctors said we might need to put Jillian on a respirator, a nurse stuck a needle in her heel. That ticked off my daughter sufficiently enough, she screamed aggravated homicide. The yowling dislodged enough gunk from her lungs, she started to breathe normally. She gets her temper from her mother. Yesterday, Jillian was 6 and playing soccer. Very hard, and well enough for a kid with a disability. Then she was 10 and 12 and 14 and acting in the middle school play. She was 15 and managing the high school volleyball team and 16 and dancing on the JV dance team and … dating. Yesterday, I worried my daughter with Down Syndrome would not know the joy of a goodnight kiss on prom night on the porch of her house, moonglow warming the cymbidium orchid attached to her wrist. I wanted most of all for her to experience the seismic glory of being a child. I wanted her to dance. She has. She always has. Now she is 18, a young lady in a new necklace and shoes. She wants a job and a car. She’s had the same boyfriend for three years. I work two jobs to keep her in Homecoming dresses. I’d like her life to slow down, so I can keep up. We glimpse our own mortality through the aging of others. When a sports star dies or retires, we feel for him. But no more than we feel for ourselves. We remember him when. I watched Jack Nicklaus win the Masters when he was 46. He seemed impossibly old at the time. In another two months, I’ll be 50. The river runs away, too swiftly. When it comes to noting birthdays, I’ve made the usual passage: Anticipation to dread to shrug. Soon enough, anticipation will return because, well, marking yet another anniversary beats the alternative. Time is a thief, and he gets better as the years accumulate. A good thing about getting older is, your body slows but, for the briefest of moments, your brain does not. In this most amazing of interludes, everything you moved too fast to notice when you were younger starts blooming before your very eyes. Put simply, at almost 50, I see things. The arc of a yellow leaf as it twists from tree to forest floor. The sideways gallop of my retriever when she sprints down a trail. The look in the eyes of my 18-year-old daughter when I wish her a happy birthday. You better live life for whatever it gives. That’s what I know now that I didn’t know then. You better go while the going’s good. Jab with your brain, lead with your heart and enjoy the passing show. Jackson Browne wrote, “Take good care of each other. And remember to be kind.” That’s about right. My daughter wanted to be 18 as soon as she turned 17. She goes for life. On the night of her 18th birthday, she looks at me most proud. “I’m not your little girl anymore,” she says. “Jills,” I say. “You’ll always be my little girl.”
Jillian and I will be signing An Uncomplicated Life tonight at 7, at the original Montgomery Inn. We had to cancel last night; storm KO’d the MI’s power. Jillian, who fashions herself an A-lister around here now, will be happy to tell you all about her wedding, which is a week from tomorrow. If I behave, she might even let me answer a few audience questions. The event is on the 2nd floor. Grab a bite and a book! Twenty dollars, cash or check. Terrific Father’s Day gift, whether you have a child with a disability or not.
JILLIAN’S THOUGHT FOR THE DAY: “If you love someone, they’ll love you back.”
A FEW WORDS ON FATHERHOOD. . . The older I get, the more I appreciate what it means to be a dad. When we’re younger, with younger kids, we try to DO all we can, in all aspects of our lives. Now, it’s more about BEING all we can, to our kids. What I try to be for Jillian and her nearly 29-year-old brother Kelly, is available and engaged. An every day “how are you?” phone call. An encouraging text. Anything that lets them know my shoulder is always available.
Thanks for reading. Hope to see you tonight.
In these posts, I will continue Jillian’s saga.