An Uncomplicated Life (37 page)

But Walker wasn’t completely passive. Until the age of five, when she blew out a knee terrorizing the neighbor’s Dalmatian, Walker was a lunatic. She jumped through every window screen on the first floor. She left skid marks on the tender, early spring grass. She excavated the yard, seeking moles. Walker wasn’t obedient. She didn’t come when you called, unless meat was involved. She didn’t sit or do tricks. She lived a decade without doing anything she didn’t want to do.

She sensed Jillian’s gentleness, though. She let Jillian abuse her with abandon.

Walker lived her last days motionless on our driveway, eyes open to the world she once ruled and riled. Her liver was shot.
Jillian knew something was up. She was 15 years old by then and had seen Jake and her uncle Pete leave. She was familiar with the permanence of death. She’d walk out to the driveway and sit with Walker for long stretches of time.

“I don’t want to lose my Walky-dog,” she’d say.

We waited for Jillian to go to school before we helped Walker from the driveway and took her to the vet for the last time.

There is a higher heaven for dogs. It’s entirely uncomplicated by baser human emotions. Dogs are nicer than people. They elicit our best intentions. They teach us things, but the instruction never sticks. Their love is unconditional. We love them back.

The vet injected Walker with a lethal dose of anesthetic. Kerry and I rubbed the fur on her back and said our goodbyes. Jillian was at lunch in the school cafeteria.

Later, she would note Walker’s absence by saying, “The floor is empty.”

Jillian feels. For all the right reasons. She understands that a significance of death is that it reminds us how good it is to be alive. She cried buckets when Jake died. She thinks of him still. She has a new dog now, Lucy the golden retriever. Lucy is eight years old. At random moments, Jillian will announce her love for Lucy, with an asterisk: “But I still miss my Walky.”

The soul is an engine that hums by spirit and feel. It works best when the heart is aligned and in tune. Walker was a good soul, and she recognized a kindred spirit. Maybe Walker misses Jillian too.

It seems callous to compare Jillian to a beloved family pet, and maybe it is. But when we seek companions with the
qualities Jillian possesses, we don’t often find them in other humans.

Libraries and bookstores are weighted with books about What Really Matters. We seek wisdom on loving, coping, relating and doing better. It’s not a cottage industry. It’s more of a mansion.

Could it be the answer is right in front of us? Or right in front of me? The five-year-old asking to hold my hand as we walk to the bus stop for her first day of kindergarten. The young lady seeking my assurance as she descends the stairs to greet her date for that first Homecoming dance.
Yes, Jills, you are beautiful. And nervous is okay.

In April 2011, Jillian had a rough morning. She still gets congested when the pollen rolls in. The mucus makes its way from her nose to her lungs. When it backs up, she vomits. It happens several times a year, a remnant, maybe, of those 11 days spent in the hospital as a six-week-old, when the mucus nearly suffocated her.

She spent the morning bent over a trash can in her bed. “I’m sorry I’m sick,” she said.

I rubbed her back some. I told her to lie down and relax. “Maybe the yucky stuff will calm down if you do,” I say.

“I hate my nose,” Jillian says.

I brought her some toast and rubbed her back a little more. “I’m sorry, sweetie,” I say. Then I walk out and close the door behind me. Later, Jillian improves enough to go to the YMCA for a workout. In the car, she says this:

“I miss my father-daughter time.”

“Me, too,” I manage.

“We still in love, Dad,” she says. It’s a statement, not up for debate.

“Yes, we are,” I say.

“If you love someone, they’ll love you back.”

“So,” I say, “I took care of you this morning, and you love me?”

“ ’Zackly,” Jillian says.

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

Y
ou 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 have 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.