An Uncomplicated Life (16 page)

“A . . .”

“No. Not
A
. What else?”

“E . . .”

“No, Jills. E sounds like
Eeee
or
Ehhh
. What else?”

She paused a few seconds. There came a point during every homework session when her determination would overtake my patience. Usually it wouldn’t take long. Her will was built for the long haul. My patience ran a hundred meters. Because she was nothing if not sensitive and eternally trying to please—and a little afraid of the impending eruption of Mount Dad—she considered her next response carefully.

“O?”

“Yesss!” I sounded like Marv Albert, announcing a New York Knicks game. I threw my arms into the air. “
S-T-O
. . .”

Jillian said, “S-T-O.”

I made the
R
sound, my tongue tapping the roof of my mouth. “
Rrrrr
.
S-T-O-Rrrrr
. . .”

“S-R,” Jillian said.

“Okay,” I said. “Let’s try it again
. Ssss-tuh
.”

“
Ssss-tuh
,” Jillian repeated.

“
Aw
,” I said.

“
Aw
.”

“
Ssss-tuh
. . .
aw
. . .
Rrrrr
.”

“S-T-O-R?” Jillian asked.

“Yesss!” I about roared. “Now, spell ‘store.’”

“S-T-O-R,” Jillian said.

So close. No time for frustration yet. That’d be like jogging the last ten meters.

“What letter did we say was sometimes silent?” I asked.

“
E
?” Jillian asked, hesitantly. She knew we were close, too.

“Yep. Now spell store.”

“
S-T-O-E-R
,” Jillian exclaimed, pleasure making her face a moonbeam.

“Not quite, sweetie. Remember how we said that the silent
E
was usually at the end?”

She did.

“Okay. Then just put the
E
at the end,” I said.

“S-T-O-R-E,” Jillian announced.

I burst from my chair. I raised my arms in the air and did a little man-dance around the kitchen, I chanted, “
S-T-O-R-E
, store, store, store!” I high-fived my brilliant, fourth-grade
daughter who, after 20 minutes and countless repetitions, was now the owner of a brand new word.

Remember about the little wins?

Kelly had been able to spell “store” in kindergarten. We never quizzed him on how to spell “store.” We simply assumed he could. But with Jillian, we relished her ability to spell “store.”

I called Kerry down from her bath. “Spell ‘store’ for Mom,” I said.

Jillian stretched it out for dramatic effect, like those kids in the National Spelling Bee. At least that’s how I saw it. Maybe she was concentrating on every letter. That was more likely. No matter. “
S . . . T . . . O . . . R . . . E
,” Jillian said.

Hugs all around. We weren’t going to take this leap for granted. No sir. Jillian spelled “store” by gosh. Yes, she did.

And then . . .

“Again,” Jillian said.

Again?

“Let’s do it again.”

And so we would. Every letter, every word. All eight words, until Jillian was perfect. Sometimes, it would take three hours. Three hours, to spell eight words. Eight high-fives, eight trips around the kitchen, eight reasons for joy. There we were at 11:00 p.m., dancing around the room.

The next morning at breakfast, Jillian would request that we go over the words again, one last time before the test. “I get one hundred percent,” she’d say.

It went like this for about three years. The index cards, the blends, the vowel sounds. Don’t forget the silent
E
. The hours in the kitchen, at the table, hope and fear and pride and dread.
Despondent wondering in the dark. Kerry lighting the candle. Jillian’s forever ability to put one foot in front of the other, for as long as she needed to walk the trail. Kerry’s better nature and patience. My well-intended wrath. The dancing.

Night after night after night. Homework was frustrating and exhilarating, triumphant and desperate. It was Jillian at her absolute, resolute finest, hauling her well-intended, sometimes fretful dad and her entirely on-board mom along for her ride.

Homework was the whole Down syndrome experience wrapped up in a single word.

CHAPTER 12

The Coffee Song

I like coffee
Coffee like me . . .
—
PAUL

I
dislike mornings. I favor evenings. Perky people irritate me. I am a sunset person. The day is done, the work has been put in. Time to sit back and assess, preferably with a beer and a cheap cigar. I’ve taken sunset photos all over the world, from the Parthenon to the Gulf Coast of Florida to Sydney, Australia. I achieve, then I reflect. I’d rather reflect.

Jillian, being Jillian, would rather achieve. Each school day, she sprang to life like a toy with new batteries. I stumbled down the stairs. We were the oddest of partners.

One school morning in her sixth grade of learning, she wondered, “Dad, why you not a morning person?”

I ask her not to speak to me.

“I a big morning person,” she said.

Well, of course. Blasting from the womb in five minutes flat, I guess you would be. “Eat your Frosted Flakes,” I said.

Kerry had left for school earlier, and Kelly had his own routine. By 7:00 a.m., both were out of the house. It was up to me to get Jillian ready for the bus. Most days, it was bearable. But if I’d been up late covering a game, it was something less. I was as functional as a bowlful of peas.

“Whatchoo doing today, Daddy-O?”

Huh?

“Are you working today, sports person?”

“Yes, as a matter of fact, I am writing today.”

“’Bout what?”

“I dunno yet. Eat. You have five minutes.”

“I have a spelling test today.”

“Congratulations.”

“I go get an A.”

“That’d be great. Three minutes.”

“I be ready,” she says. “I always ready.”

That was true.

Jillian was six years old and starting first grade the first time I walked her to the school bus stop at the end of the common drive. I held her hand as we walked, and thus began a ritual that would last for three years. Jillian was so small, she had to crawl up the bus steps. She looked like a climber, scrambling the last few feet up El Capitan. A year or so later, she did the same thing. I couldn’t figure out why. She’d grown, in height and coordination. Why the crawl up the bus steps? I found out after school, when Jillian’s teacher sent home a note wondering why someone had dressed her with both feet in the same leg of her culottes.

When Jillian was in fourth grade, she decided handholding was out. Well, okay. We still walked down together, though, a morning glory that never failed to amuse and enlighten.

“What are you going to learn today?” I’d ask.

“Everything,” she’d say.

By sixth grade, Jillian was setting her alarm, making her bed and dressing herself. I’d stopped the gentle wake-up nudges the previous year. I missed them. They seemed the natural evolution from our evening dances around the family room. I never had to wake her or tell her how late she was. Sometimes, she had to wake me. By the time she got to intermediate school, fifth grade, she didn’t need my help. I might as well have been furniture.

Jillian and I were partners at sunrise, committing conversation at the breakfast table. I didn’t arise at dawn for her benefit. I took comfort in the ritual sameness, even as it evolved and I began to matter less. You never know how the bonding will occur with your children. You can’t arrange it. It’s the spontaneous product of the everyday. With Jillian and me, it was weekday mornings, across the table.

I’d quiz her on the homework from the night before. “Who lives in the White House?”

“George Washington.”

“No. I mean now.”

“George Bush.”

I’d make sure the shirt she was wearing matched the shorts. For a while, I tied her shoes. I made her breakfast. Cereal and toast. I packed her lunch.

“No carrots,” Jillian might say.

“They’re good for you.”

“They’re not good. I don’t like carrots.”

“No,” I’d say. “I don’t mean they taste good. Even though they do. They’re good for you. They’re healthy.”

Jillian had occasional trouble with the subtleties of the language. She was very literal.

“I don’t like healthy.”

Jillian usually complained about something. Just because you have Down syndrome doesn’t mean you don’t eat like a typical kid. I’d pack the carrots in a plastic bag, next to a peanut butter and jelly sandwich in a plastic bag, next to a pudding cup in a plastic container, next to a plastic spoon, in a paper sack. Heaven help the earth.

“You better eat those carrots,” I’d say.

I’d ask her about her friends. “Katie be mean to me,” she’d say.

Katie Daly was Jillian’s best friend. Why?

“I not sure,” she says. “She says she not going to sit with me for lunch.”

“I’m sure you guys will work it out.”

I invented a jingle about my morning cup of coffee. I called it, believe it or not, “The Coffee Song.” It was brilliant:

I like coffee
Coffee like me
I don’t like tea
Make-a-me pee

This never failed to get a giggle from Jillian, who was never too cool to manage a laugh at the strange things her father did. “Sing the Coffee Song, Dad,” she’d say nearly every morning.

I invented new verses, equally memorable:

I like coffee
It’s my favorite drink
It doesn’t stink
Like N-Sync

“N-Sync doesn’t stink,” Jillian protested.

I’d announce a new rendition of the Coffee Song by tapping my spoon on the side of my cup. At which point Jillian would either leave the room or giggle, depending on her mood and tolerance level that day.

Tap-tap-tap-tap.

I like coffee
And ya should, too
It’s my favorite brew
Doodle-dee-doo

This was the daily dialogue of our lives. For 15 or 20 minutes, 5 days a week, 10 months a year, Jillian and I paused long enough to solve the world’s problems. I never did this with Kelly; he didn’t need the sort of morning direction I believed his sister did. He’d hurtle down the stairs like a cattle stampede, slam a Pop-Tart into the toaster, give it all of 30 seconds and be out the door, not so much as a “See Ya” in his wake.

“Go to school,” I’d mumble. “Learn something.”

Jillian Time was slower. It allowed for discovery.

“Who are you eating lunch with these days?” I’d ask.

“My friends.”

We might have heard from one of her teachers that Jillian was eating lunch alone. Her gregariousness kept her popular among her peers, but her disability could keep them distant. By the time Jillian reached intermediate school, the other kids were becoming arm’s-length friendly. We worried that Jillian was lonely.

“What friends?” I’d ask.

Jillian would reel off half a dozen names. Well, okay.

“Everything good at school?”

“I love my school.”

We’d leave the house for the bus stop, where we’d be joined by other kids from the neighborhood and their moms. Where we lived, everyone seemed to have children about the same age. Loveland was Mayfield, but without June Cleaver’s pearls. Five or six kids from our block would be waiting for the bus at the same time. We parents would drink coffee and converse until it came. Just me and the other moms.

On the morning of her first day of sixth grade, it occurred to Jillian that walking with her father to the bus stop was no longer cool. It had occurred to me earlier than that, but being a selfish dolt, I waited for Jillian to bring it up. Jillian, being Jillian, resisted as long as she could.

She broached the subject at breakfast. “Dad, we need talk ’bout something.”

“Okay.”

“You know how I always be your little girl?”

Uh-oh.

Every time Jillian achieved some new bit of independence, whether it was tying her shoes or dressing herself or roaming the wilds of the neighborhood unassisted, she would suggest
that she wouldn’t always be my little girl. My reply always had something to do with even if she became the king of England, she’d still be my little girl.

“Yes, Jills. You will always be my little girl.”

“Well, your little girl is growing up.”

“I know.”

“I don’t want to hurt your feelings,” she said.

“You won’t. What’s up?”

“Well, I in sixth grade now.”

“Yes. Very proud of you.”

“I know you like to walk to the bus stop with me, and I like it, too,” she said. “I know you’re my best father, and you’re in my heart.” Her lip started to bounce. Maybe mine did, too. “I know you love me, Dad, but I have to say something.”

Okay.

“I think I want to go to the bus stop by myself now.”

She was a big girl, she said, almost 13 years old. Maybe it was “not ’propriate” that a dad be seen at the bus stop with his entering-sixth-grade, almost-teenaged daughter.

After I took a second to digest the new vocabulary—“Jillian, you said ‘appropriate,’ that’s awesome”—I agreed that, sigh, a father doesn’t need to be walking his blooming teenager to the school bus stop.

The first day I didn’t walk her to the bus stop was the most melancholy of days. Mortality hit me like a brick. After years of it, I should have been a pro, accustomed to the ritual of her leaving home and coming back. It should have been a comforting era of “Have-a-Good-Day,” followed later by “How-Was-Your-Day.” My kids left every day, but they always came back.

But I wasn’t a pro, and I never got used to it. Every year
was a little harder. My melancholia danced in lockstep with my advancing years. Overnight, I’d go from school’s out and a houseful of people around me to the deafening silence of nothing but the dog at my feet. That first day of school was always the ultimate evidence that things would never be the same.