An Uncomplicated Life (36 page)

I wave as I make the right turn from the lot and toward home. “Bye,” I say, through the open car window. She can’t hear me. The traffic drowns it out. I say it again, anyway. Goodbye, Jillian.

It’s possible to be devastated and overjoyed, all at once.

I punch up Jackson Browne on the Pandora. There are no coincidences in life. Fate is fate. “For a Dancer” is the first tune:

Keep a fire burnin’ in your eye
Pay attention to the open sky . . .
Into a dancer you have grown.

I drive home to a house that is suddenly larger and less joyous. Just as it is meant to be.

Three days later, on Monday morning, I call Jillian at 7:50 a.m. I am standing in that nowhere/everywhere place between sad and elated that I think only dads and daughters can know.

“You at the bus stop?”

“Yes, I am,” she says.

“Well. Have a great day,” I say.

“Oh, I will,” Jillian says. “I’m so happy.”

CHAPTER 31

Vanuatu

We have food. No one goes hungry. We have a close
family. I have a girlfriend and the beach. What else
do you need in the world?
—
A NATIVE OF ST. LUCIA, TO VIDEOGRAPHER TONY MARTIN,
IN
ISLANDS
MAGAZINE, MARCH
2011
If you love someone, they’ll love you back.
—
JILLIAN

A
week after I dropped Jillian at the bus stop for the last time, I was on an airplane, headed to a football game. Being trapped in a 737 is a good time to sleep or ponder or do nothing at all. I was about to do nothing when I spotted the top of a magazine in the seat pocket:
Islands
.

My periodical tastes run narrow:
Time
for news,
Sports Illustrated
for sports. The occasional
Esquire
or
Gentlemen’s Quarterly
for a fix of masculine prose. Magazines like
Islands
don’t get my dime because I’m not someone who owns a yacht. The trendiest beachfront bars on Jost Van Dyke aren’t even in the daydream bucket.

I am a sucker for escapism though. I dream of cabins in the woods and toes in the sand, curling local beers while pondering nothing as weighty as the next five minutes. I am an idyllist, staring at that Meyerowitz photo, wondering what’s beyond the door.

Jillian receives her certificate, during graduation ceremonies at Northern Kentucky University.

Kerry and I did spend our 20th anniversary in a bungalow high in the hills of St. John, above the rapturously named Chocolate Hole, and number 25 adjacent to Smuggler’s Cove on Tortola, in a house that could have been on the cover of, well,
Islands
magazine.

So what the hell. I open the magazine, and the first page I find has a headline that asks: “Is This the Happiest Place on Earth?”

It’s a story about Vanuatu, a strand of 83 islands and 220,000 souls in the South Pacific
where the per capita income is slightly more than $3,000 a year. In 2011, something called the New Economics Foundation, a London-based think tank, decreed Vanuatu happiness to be superior to the everyday version. Vanuatuans—“ni-Vans” to the locals—get the nod because they “are satisfied with their lot, live long and do little damage to the planet.”

The author asks a ni-Van why this is so. “They don’t know troubles the way you know troubles.” Ni-Vans, she says, “put people ahead of things. We measure wealth not by what you keep, but by what you give away. The richest man in Vanuatu is the man who can give away the most pigs.”

As another ni-Van says, “We are not so impatient. Here, it is about family.” The story expounds on notions of trust, love and spiritual well-being. Ni-Vans live essential lives, defined by core virtues. They don’t get snagged on life’s muddy periphery. It helps that they live in a place most of us would consider in the Top 10 on the Paradise List. People travel thousands of miles to visit spots like Vanuatu for a few days of sand, sun and good vibrations. It’s not a sad life on Bali Ha’i.

Climate is superficial, though. Geography doesn’t define well-being or explain it. Paradise would be a barren place if not shared.

Jillian could live on Vanuatu. She could be a ni-Van. She knows what they know. Jillian loves unconditionally and universally. She trusts those close to her. Her schedule is complex—Jillian’s social and school calendar is full—but her life is not complicated. The junk that clutters our days—anger, anxiety, jealousy, finances, cynicism, guile, agendas—has no place in her world.

Her concerns are defined by who she loves, and who loves her. Is everyone around her okay?

Jillian is not simple. I do wonder, though, if her disability has blessed her with an ability to fix on essences. One of the worst things you can say about my daughter is also one of the most accurate. I hear it all the time: “These kids are so loving.”

I can almost feel the pat on Jillian’s head.

These kids?

Compared to whom?
Those
kids?

Being “loving” is not yet a disability trait. It’s not compensation. God help us when it is. I’d like to think Jillian would be a fine human being, even without the 47th chromosome. If your daughter’s a blond beauty queen, do people assume she’s stupid? A cynical world looks at happy and uncomplicated people as unknowing. Jillian knows things.

But more than that, she feels. Down syndrome did not bestow her with the authentic grace and compassion with which she navigates her days. Her natural empathy wasn’t genetically arranged. Happiness isn’t a tradeoff for her inability to process Algebra II.

Most of life is hieroglyphics. Jillian gets the big parts right. Who loves her, whom she loves. The energy to be optimistic, the effort to be kind. Jillian sees only your good. I want to be more like that. Who doesn’t?

Jillian is happy. She’s the happiest person I know and would be if she lived in Vanuatu or on an ice floe.

I wonder where Jillian’s niceness comes from. It’s not genetic. Kerry’s nice, but not to an extreme. Kelly is nice because he takes after Kerry. No one has ever accused me of being
nice. Jillian’s niceness? I can’t explain it. It’s like explaining what water tastes like. I learn from Jillian’s niceness. I hope that being exposed to it causes some of it to take. I’d like to think I can be nice by association.

I’d like to find all mornings in the great shape Jillian finds them. Monday is her favorite day. Monday means a whole new week of fine possibilities. “I love my school,” she says, ten months of the year. “I love my job,” she says, the other two months.

I’d like to dress my days in the sort of optimism Jillian takes for granted. Happiness isn’t a choice for her. It just is. Jillian owns a first-time innocence, all the time.

We’ve spent 23 years trying to get the world to see Jillian, rather than simply look at her. Seeing opens doors. It’s how all of us should regard the world. Jillian comes by it naturally. She sees everything.

Her heart is generous because it isn’t cluttered with accessory concerns. Jillian’s heart is her gatekeeper. I can’t tell you why. Her brain is equally active. She broods and grieves. Her teenage moodiness arrived after she turned 20. Another example of being developmentally delayed, I suppose.

But nothing invades her intellect without approval from her emotion.

“How’s Grandpa’s heart doing?” Jillian might ask.

Kerry’s father had undergone bypass surgery to clear a valve that had been 90 percent blocked. Jillian’s question would have been acutely relevant had Sid’s operation been last week. It was five years ago.

“His heart is fine, Jills,” I say.

She still misses Uncle Pete, a sentiment she revives every
few months. Pete Tranelli was Kerry’s uncle. He was the most easygoing of men, the kind of guy who really would pluck a quarter from behind your ear. Jillian sensed his gentleness. He was a favorite of hers, and vice versa. Pete passed a decade ago.

“I still miss my uncle Pete” is what Jillian says about that.

Compassion has a standing reservation at Jillian’s table—especially for anyone who has endured physically. My mother had a knee replaced several years ago, and it’s not unusual for Jillian to ask: “How’s Grandmother’s knee doing?” My dad has had circulation issues in one of his legs. Jillian: “How’s your dad’s leg?”

I’ve had back problems on occasion. They’re aggravated by sitting for long periods of time, usually behind the wheel of a car. When I drove Jillian to the Metro bus stop every morning, she would slide her hand between my seat and my lower back and do what she could to rub out the knots. Even if I currently didn’t have any.

“Jillian, my back hasn’t hurt for a month,” I might say.

“Just making sure,” she’d answer.

These aren’t occasional bits of conversation. Jillian does this every day. If she sees Nancy Croskey, she’ll ask about her two children and her husband. One of my golf buddies was out of work for several months. During that time, whenever Randy’s name came up, Jillian would ask if he’d found a job.

Lots of us engage this way. The difference is that Jillian isn’t making small talk. She cares about the answer and the people involved. I’ve asked people those same questions and five minutes later, had no recollection of their response. Jillian’s curiosity is real. She either isn’t interested in pretend
niceties, or she lacks the capacity. Regardless, Jillian isn’t wily enough to fake concern.

Her innocence is a by-product of her disability. I’ll yield to that generalization. Jillian lacks the intellectual capacity to grasp a lot of what’s dangerous in the world. Her stresses are minimal. Her circle is tight. It includes her family, her boyfriend, her dog, her school and her job. They’re all good. They rarely disappoint. While she’s acutely aware of our stresses, and reacts to them, that is owed to her sensitivity, not her intellect.

Times when Kerry and I have suffered through routine arguments over mindless things, Jillian has asked us if we’re getting divorced. “I don’t want to lose you guys,” she has said.

Her compassion is especially acute when it comes to pets. We’ve lost pets; all families do. As with everything else, though, Jillian’s authentic emotion has made us all feel more deeply.

Every family goes through its share of incidental pets. These aren’t the pets that show up in the vacation video or the family portrait. They’re the pets you get because you think your child should have a living thing to take care of. Decades later, you’re not wistfully recalling your first turtle. You don’t take incidental pets for a walk or, if you’re Jillian Daugherty, use them as both pillow and mode of transportation, the way she did our dog. No one gives his kid a goldfish for Christmas.

Kelly had multiple goldfish. None lived in the luxury of an actual tank, with a filter and aeration and colored gravel. They hung out in a bowl of tap water. We changed the water every day and fed the inhabitants as instructed. They all died within a few weeks. We didn’t especially miss them.

Jillian had Jake, the guinea pig. Jake was incidental in that he didn’t relate to us in any meaningful way. Jake liked to eat. He’d express pleasure when he knew food was coming. Beyond that, we were scenery.

Kelly once tortured his little sister with a diabolical scheme to test Jake’s aerodynamics. “How do you think Jake would look in a parachute?” he asked her. The plan was to outfit Jake in a custom-tailored sandwich bag, wrap it (and him) in string and throw him out Jillian’s second-floor bedroom window. The plan stalled when Kelly couldn’t properly attach the string to the bag. Or Jake to the string. Otherwise, young Jake would have had an early demise.

Jake didn’t get out much, because when he did, he ran and hid and that made Jillian cry. Jake spent most of his life in a glass box. He was on extended incidental time, to everyone but Jillian. Jillian loved Jake.

That’s why it hurt to tell her Jake had passed on. We gathered our courage and knocked on Jillian’s bedroom door. She was 11 years old at the time. Jake was 3. “Come in,” she said.

“Jake’s dead,” we told her.

“No, he’s not,” Jillian said.

“He died last night. Remember how he was coughing a lot?” Jake had developed some sort of wicked guinea pig asthma. At least that’s what we diagnosed. We didn’t take Jake to the veterinarian because, well, he was a guinea pig.

“Jake’s in heaven now,” we said.

“When’s he coming back?” Jillian wanted to know.

Jillian insisted we give Jake a proper burial, so we wrapped him in a hand towel and placed him in a shoe box. We forced a
shovel into the frozen ground in the backyard. When the hole was sufficiently deep, Jillian lowered the box and said some things that needed saying.

“I’ll miss you, Jake. I love you. Even though you’re dead, you’re still a good boy.”

We all agreed.

Eleven years later, in random moments, Jillian will offer, “I really miss my guinea pig.”

Her first dog was Walker, a huge black Labrador retriever we got when Jillian was five years old. Walker was not a dedicated lover of all things people. She owned a cat’s personality. Walker made you earn her affection. She got along great with Jillian, though. Walker allowed Jillian to use her back as a mattress. She was okay with Jillian riding her around the yard. Some winter nights, Walker would disappear. After a few instances of frantically canvassing the house, we learned that Walker could be found at the bottom of Jillian’s bed, completely under the covers.