I wish I had Jillian’s heart. I’d like to love unconditionally. Heart quakes, unprompted. I’d settle for knowing what that feels like. How is it to trust without fear and to live without guile? It must be like flying, only freer.
I’ll probably never get to Vanuatu. I can read about it, though, in a magazine on an airplane eight miles high while flying across the tissue of earth’s atmosphere. I can experience it, too. Jillian is in the passenger seat. She leans over and offers a hand in the small of my spine.
“How’s your back feeling?” she asks.
CHAPTER 32
Moving Day
The bird cage is empty.
Yeah, but the trees are full.
—OPIE TAYLOR AND HIS FATHER, SHERIFF
ANDY TAYLOR, ON THE ANDY GRIFFITH SHOW
You can’t live your life in a day. You can only feel as if you have.
The apartment was just across the street from the Metro stop. It was five minutes from Ellen and Dimitri and ten minutes from us. It was convenient: The happy couple could walk to the supermarket, the sports bar and the discount department store. This was a fine perk, given that they didn’t drive and their legs were short.
It was an older, established complex, rambling and leafy, filled with two-story units, attractive to young, single professionals. It had a fitness center, where the couple could take classes. The clubhouse bar had nightly happy hours. In the summer, the bar opened to the swimming pool and hot tub. Parties were the norm.
We found a one-bedroom apartment for Jillian and Ryan on the second floor, at the far edge of a cul de sac. Their deck overlooked woods and a pond. It resembled a treehouse.
They both agreed it was a fantastic place to begin a life together.
“Awesome,” Ryan said.
“My dream house,” said Jillian.
The day was all business. We had known this day was coming. We’d planned on it. The actual move was just a formality. It was a lifetime achievement award.
We recruited Ellen’s brother, Ryan’s uncle Rick, who owned an ancient pickup truck. We hauled Jillian’s queen bed from her room at our house, the same room where the moon had etched a silver ribbon across her face 22 years earlier. We donated a kitchen table and chairs. We packed her life into cardboard produce boxes we got from the grocery store. Books, photos, CDs, journals, movies. Pieces of what had defined her, placed neatly in rows.
Jillian took a chair and her laptop and a few things to hang on a wall. She took a framed poster of the NKU men’s basketball team. And that was it.
We dropped off the bed at the apartment. The satellite TV man was there, installing. We drove the five minutes to Ryan’s, where we hauled an armoire down a flight of stairs. We loaded a new couch and a used coffee table into the bed of the truck and tied it all down. We drove back to the apartment, lugged everything upstairs and set it all up.
It’s amazing how portable a lifetime can be. The whole move took about two hours.
We gathered around the coffee table and opened a bottle of champagne. The Daughertys and Mavriplises had made a habit of toasting occasions great and small: Homecomings and proms, graduations and college acceptances. Also, simple evenings out or ones spent on the deck in the arms of a summer moon.
Ellen and Dimitri knew what Kerry and I knew: The smallest of greatnesses are always worth cheering.
To Jillian and Ryan and your new lives together.
Everyone spoke. I don’t remember what was said. If I’d made more than a cursory toast, I’d have saluted everyone in the room. We’d prepared forever for this day. We’d assumed it would occur. We’d never doubted it. We might have been naïve about the challenges we would face, but our naïveté fueled our optimism, and that optimism guided our lives.
More than two decades earlier, we’d been entrusted with gifts. We knew that then. We know it more on this day. Now we set out to make two lives whole. We wasted no time lamenting or looking back. We’d pushed and prodded and made a nuisance of ourselves. We’d asked that Jillian and Ryan be allowed to define their potential, not have it assigned to them. Everyone has the right to aspire.
We demanded they be seen, not looked at.
We expected it, and we accepted nothing less.
And now, here we were. In their apartment, toasting an idea, and a dream not denied or deferred, but fully alive.
Salud.
“I just want to say, we love you guys, and we’ll never forget you,” Jillian said.
“Cheers,” Ryan said.
Everything builds. This is what Kerry and I took from the day. Jillian the toddler would stumble and fall. We waited for her to pick herself from the floor. We’d make Jillian look people in the eye when she was talking to them. We had her answer the telephone and order her own meals at restaurants.
We wanted her to get lost because those who are never lost can never be found.
In high school, at Northern Kentucky. On campus, on the bus. We were happy, though nervous, when Jillian called from downtown to say she’d missed her connecting bus. That meant she had to figure out her next move. To get to NKU, she needed a Plan B. Failure is a good teacher, but only if you’re allowed to fail.
“An opportunity to problem-solve,” Kerry called it.
Jillian and Ryan solve problems. They wouldn’t have made it to moving day if they didn’t.
“They have fights,” Kerry said. “But they’ve learned how to fight. That’s important, too. I’m glad they’ve had fights. They’ve talked it out, and they’re better for it.”
Jillian and Ryan have always been a good match. Ryan is book smart. He reads the newspaper every day. He can tell you if the Cincinnati Reds won the night before, and who the Cincinnati Bengals will play on Sunday. He is better than Jillian at the vital everyday: Reading signs and menus, following written instructions.
Jillian is street smart. She is decisive and poised in social situations. Together, they figure things out.
ADULTS WITH DOWN SYNDROME do live on their own. More often than not, they need outside help: Group homes with live-in caregivers, usually, or shared apartments where they receive regular visits from social workers.
Jillian and Ryan weren’t blazing a trail, but they weren’t far behind the leaders. We assumed they would need help budgeting and planning meals. A certain vigilance would be expected from us.
Turn off the stove and the burners. Don’t play your music too loud. Don’t leave a log burning in the fireplace when you go to bed. Blow out the candles.
Here’s how to use the dishwasher, here’s how to re-set the DirecTV after a storm. Here’s what to do if you blow a fuse in the bathroom while running the hair dryer. Don’t keep spoiled food, don’t leave the milk out. Here’s how to write a check.
The mechanics of running a household could be taught. As with everything else, it would take a little longer for them. That wasn’t important. Ryan and Jillian had the building blocks. They had the fundamentals. That was important. You can’t spend five minutes teaching love and trust. Earning respect isn’t like changing a lightbulb.
“I can’t imagine having a richer life. To them, it’s all about love and what really matters,” Ellen said. “It’s not special. It’s just what’s good.”
“I’m happy to know they are where they should be,” Kerry said at the end of moving day.
Jillian and Ryan, in their first apartment.
I took a picture of them, just after the toast and before we parents left. Jillian and Ryan stood on their treehouse deck in full embrace. Her arms wrapped around his waist. His arms started at her shoulders and creased her back, his hands locked and forming a V at the base of her spine. They are looking away from the apartment and into the tree branches that hung just a few feet from the railing. They don’t know I’ve trained the camera on them.
It is a blue early-Indian-summer day. A spot of sunshine has snaked its way through the trees, eluding the branches to alight on the floor of the deck, exactly and entirely where Jillian and Ryan h
ave placed their feet.
A Joel Meyerowitz, Cape Light moment, perhaps.
It is their new day, full of its own mysteries, yielding its own endless possibilities. “Goodbye, you guys,” we say to them, as we make our way out their door. “Have fun.”
The door clicked shut behind us. It seemed to close and open all at the same time.
CHAPTER 33
Number 47
All of us want to do well. But if we do not do good,
too, then doing well will never be enough.
—ANNA QUINDLEN
A few weeks after she was born, we received official word from the geneticist that Jillian did, indeed, have Down syndrome. Jillian owned three copies of Chromosome 21, instead of the usual two. Trisomy 21, it’s called, the most common form of Down syndrome.
Human cells contain 23 pairs of chromosomes, 46 in all. This was Number 47. This bit of the-earth-is-round information came with its own sadness. Until then, Kerry and I still held tiny hope the earth would be flat.
Number 47 has, in fact, been king. But not in the way we might have guessed. We knew it would limit her intellectually. We understood that the physical traits it mandated would have permanent social consequences. We were ready to make her life as good as it could be.
We just didn’t understand how good Jillian would be. In the literal sense.
If you believe there are no coincidences, you have to at least entertain the notion that Number 47 has a purpose beyond sadness. If you are anything other than terminally pessimistic, you believe the extra chromosome has some beneficial reason for being.
Number 47 contains a lot that makes us good. It has to. Somewhere in that bonus wiring is a connection to compassion and kindness—a plan for how to be better. Number 47 puts out the fires of ego and envy and vanity and guile. It filters anger. Thanks to 47, Jillian lives a life of joy, giving and receiving in equal time. Nothing defines her more. Number 47 isn’t a governor on her aspirations. It’s an extra storage tank for all her good stuff.
Not long ago, I sat with my mother in the living room of my parents’ home in Florida. She was nearing 80 years old when we gathered in the morning to have coffee. We talked about Jillian, as we have lots of times over the years. And my mother said this: “Jillian is the best Christian I know.”
Elsye Daugherty isn’t devout. She is spiritual. It’s an important part of her life and my father’s. It isn’t an important part of mine. So I asked her, “What does that mean?”
Twenty-three years earlier, a day after Jillian was born, my mother had had a vision of Christ, telling her Jillian would be fine. I’ve never had a similar experience, nor has anyone else, as far as I know. All our visions have been self-generated. What has come true has been the result of an all-earthly-angels-on-deck offensive, not some assurance from on high.
What does that mean, being the best Christian? “She’s kind,” my mother said.
“She loves genuinely. She gives. She enjoys life. Do you remember the story you told me about Jillian on the Metro bus?”
I said yes.
I’d gotten an e-mail from a passenger on the bus Jillian rides daily to and from downtown Cincinnati. He knew me because of my job. I’d written about Jillian several times. He wanted me to know some things he saw one winter morning:
Paul,
Just wanted to send you a quick note. I was in a sour mood this morning when my bus didn’t show up so I had to wait an extra 40 minutes in the cold for the next bus to arrive. This bus was packed, standing room only, but a young woman in an NKU sweatshirt gave up her seat to a passenger who just got on the bus. Then, this same young woman offered her coat to someone else on the bus who said she was cold. I overheard someone else talking to her and called her “Jillian.” I struck up a conversation with her about school and the NKU basketball team (of which she told me she was a manager). I concluded that I just met your daughter. What a terrific person she is. She brightened the day for me and a few others packed into the bus today because of her kind actions, and I just wanted to pass it along.
Mike Herrel
“That’s Jillian,” my mother said. “She acts like the rest of the world should act but doesn’t.”
Jillian not only has those qualities. She inspires them in others. Those who know her are moved to do better, to be better. To do good. We’re only as good as the way we treat each other. It’s hard not to be good when Jillian is around.
“You and Mom and my brother are my heart,” Jillian says. I couldn’t tell you when, exactly. She says it a lot.
“What about Ryan?” I ask. “Isn’t he your heart, too?”
“Oh, definitely,” she says. “Ryan is my favorite boy.”
To get to Jillian’s heart, simply open yours. If her heart ever breaks, we’ll all be lesser for it. Maybe that’s what my mother meant.
It’s an intrinsic knowing. Knowing what matters, and what to do with it. Knowing the smallest of joys. A hug offered, a smile received. Jillian’s knowing isn’t learned. It’s not inherited. It’s innate. It’s Number 47 on her shoulder, riding shotgun. Her nearest angel.
Without 47, Jillian isn’t Jillian. Maybe she keeps her seat and her coat and for Mike Herrel, the day stays gray. She doesn’t change Nancy Croskey’s life or Dave Bezold’s perspective. Kelly Daugherty doesn’t spend an extra hour on yet another analysis of Hemingway.
Without 47, Kerry doesn’t get to express her true calling to its fullest. Motherhood satisfies her, but it isn’t triumphant. Without 47, maybe I forget the feel of Jillian’s hand in mine as we walk to the school bus stop. Maybe I never even notice.
I’m not allowed to take life for granted, not for the last 23 years. Forty-Seven did that for me.
Forty-Seven won’t allow Jillian to attend Harvard Law or complete the Sunday crossword in the New York Times. She won’t drive a car or bear a child. She will draw the occasional double-glance and misguided wonderment. She will be subject to simple minds and judged by hearts too weak to know.
All this is true and sad and immutable.
Forty-Seven is a soul engine, though. It doesn’t quit. It’s there every time Jillian asks about Grandpa’s heart or misses Uncle Pete. It is front and center in her declarations of affection for people and experiences and life. Forty-Seven is right there, earnest in its simplicity.
If you love someone, they’ll love you back.
Anna Quindlen wrote, “All of us want to do well. But if we do not do good, too, then doing well will never be enough.”
Jillian bridges the gap between doing well and doing good. Lots of us do well. We have successful careers, we make enough money, we live easily, we enjoy a certain physical comfort. We’re not especially tolerant when we don’t.
How many of us do good?
A friend of mine once described her grandfather as someone who “lived in quiet appreciation of all that God provided.” No one would describe the Jillian Daugherty Show as quiet. But the appreciation part never strays.
That’s Number 47 at work, I think. I hope. I believe.
CHAPTER 34
A Dream
He did not know he could not fly;
And so he did.
—GUY CLARK
Paul, Jillian, Kerry and Kelly in St. Augustine, Florida.
In the dream, I am flying a box kite on the beach in St. Augustine, Florida, a place where we have spent many family vacations. It is the gentle end to a timeless day, a breezy early evening, clear and a deepening blue. The box kite is adept at handling big winds. On two of its sides are the faces of Jillian and Ryan.
The kite is soaring in the updraft. The faces of Jillian and Ryan are tugging at the string, laughing as they pull away. Higher and higher.
I dream rarely. When I do, I remember only nonsensical shards. But this dream is clear.
I am the keeper of the string. My hands and fingers claim a thrilling ache as they struggle to keep the string taut and the kite rising. I love this kite. I love the way it owns the wind and tempts
the heavens as it escapes. It is fearless and yearning. It is limited only by my hands and the length of string my hands control.
Jillian and Ryan appear on the beach, in person, to stand with me as the day’s light ebbs. They laugh when they see their likenesses, way up there. They watch me struggle with the kite and the wind. The ache spreads from my fingers and hands to my arms, until all are joined in a collective, thrilling pain. I am Santiago, fighting the marlin.
I run down the beach with the wind. I am fighting the kite, while accepting its needs. The push-pull is comforting and familiar. Jillian and Ryan run alongside, our bare feet in triplicate on the firm, damp sand. They laugh at their likenesses, far above.
The beach is empty, the tide is receding. I stop to catch my breath. As the sun slips below the dunes and toward the marsh and the river beyond, its reclining light paints pastels across Jillian’s gaze. It’s the same glow from long ago, when she was a baby in her crib and the moon was doing the painting.
So many years pass so quickly. The mantra—expect, don’t accept—has done its duty. The battles at school are long since decided. They’re monuments in a field, dedicated to all who strive. The aspirations we’ve had for Jillian have become reality. The race has been run. We will still be here for her. But only when she needs us. Pride and melancholia mix. They feel like my arms and hands. Worthwhile pain as my kite tugs at me, seeking its own place in the sky.
“It’s time to let go, Dad,” Jillian says.
“No. I still got it.” The kite is a dot, but somehow, I still see the faces on it, of Jillian and Ryan. I see them, and it makes me hold on tighter. The ache extends to everywhere. Jillian says, “You need to let it go.”
But why? Just a little longer. “I still got it,” I repeat.
Ryan says then, “Sir. It’s time.”
He’s right. It’s time. I uncurl my cramping hands to unleash the string. The string tears through my fingers and into the air, so quickly. The kite sails away, higher. The faces disappear. When last I see them, they’re on the horizon, borne on the wind, laughing and seeking their way.
An Uncomplicated Life Page 29