An Uncomplicated Life (6 page)

“What’s better than raising a productive human being?” she asked.

My moods and self-worth fluctuated daily, depending on how well I thought my column was going. I was working for the
Cincinnati Post
then, writing four sports columns a week. Getting a column was a plum appointment. The
Post
hired me from New York, where I’d worked as a sports feature writer at
Newsday,
on Long Island.

Most columnists are egotists. A need to be noticed comes with the territory—as does a snobbish belief that we are the best writers at the paper. Without us, there’d be no paper. This isn’t true, of course, but some of us need that attitude to do what we do.

Writing a column isn’t like covering a beat. You have to know a little about a lot: A mile wide and an inch deep. You have to be connected to those with wisdom about subjects you don’t have the authority to speak about. You have to have an edge to your personality, even if that edge is soft. You have to have the stomach to face people you criticize. And you have to be prepared to grind out four columns a week, 50 weeks a year, whether you’ve got news you can react to or not.

Everyone thinks he can write a sports column. Everyone should try coming up with something to write in February.

The column assumes a tyrannical existence in a columnist’s life. In those first few years of figuring out how to do it, the column ruled me. The minute I finished each day’s column, it was time to start thinking about tomorrow’s. Some
days, the words flowed from brain to keyboard, strong and unimpeded. Others, they gathered some place in between, and took the day off. I’d go through stretches of ineffectiveness—writer’s clamp—that made me miserable to live with.

“Why Can’t I Do This!?” I’d yell to no one. Kerry and Kelly knew not to come into my office during those times. The dog tucked her tail between her legs. “I’ve been doing this my whole damned life!” I’d wail to the gods. “And now, it just . . . STOPS?” It wasn’t unlike a hitter in baseball who runs into a slump. You don’t know how you get into it or why you come out of it. Only that when it happens, it drives you mad.

So I was not always a gold-medal dad. I would be standard-issue. I wasn’t going to be Gibraltar. Gibraltar was Kerry’s department. Raising Kelly was who she was. And Jillian. Jillian would be Kerry’s life’s work. Any pressure Kerry felt was for Jillian to do well, even to thrive. Kerry assumed total responsibility for Jillian’s success or failure. She knew she couldn’t cure Jillian’s Down syndrome. She could help Jillian overcome it.

“I could help her so that she could do everything everyone else could do,” Kerry said. “If I didn’t do all I could do—the exercises, the therapy, the reading of books to her, practicing her letters—it would be my fault. That was my responsibility.”

Kerry was there to keep stitched the fabric of Jillian’s progress. While I was out playing in the toy department of the newspaper, she took Jillian to therapies and doctor’s appointments and play groups. She immersed herself in the latest news. She became expert in the vital and mundane laws designed to give Jillian a chance. She took part in parent forums. Eventually, parent groups invited her to speak.

It’s an amazing gift, motherhood. Some use it better than
others. Some have it presented to them in ways they’d never imagined. Kerry made it look easy. Her skill allowed me to pursue my passion.

I look back now, with wonder and with a small sadness at what I missed. Kerry will offer a Remember-When, and I won’t remember. It’s as if I’m hearing it for the first time. It could have been my way of coping with Jillian’s disability, or simply what I thought fatherhood should be. My dad was a rock when I needed him. He didn’t feel the need to be highly engaged otherwise. When my brother and I had kids of our own, my dad enjoyed them, but he didn’t dote. “I’m not a professional grandparent,” he explained.

He could be emotionally vague. I inherited some of that. I earned the money so Kerry could stay home and take care of the children. I wasn’t completely disengaged; I just directed my energies differently.

Kerry prepared diligently when she spoke to parent groups and attended school meetings regarding Jillian’s education. She’d ask if I wanted to know what she’d learned. I said no. I told her I had confidence in her ability to do everything right. This was true, but it was also an easy cop-out for someone who lacked the special determination to be a full-fledged partner in building the better Jillian.

I attended the meetings. I could make forceful appeals if things didn’t go as we believed they should. Beyond that, I was furniture. If Kerry couldn’t explain an issue involving our daughter to me in ten words or less, she lost me.

Kerry spent a decade at home, and she never strayed from the mission, giving her full attention to the smallest details. Every toy or game she bought for Jillian had some educational
purpose. No mother-daughter conversation was ever frivolous. The books Kerry chose for Jillian were not simpleminded or designed only to entertain. They were educational or award winners. If Kerry could have found a Caldecott-winning alphabet book, she would have bought two copies.

When she was in a hurry, she might have picked up Kelly and carried him upstairs for his nap. But she never picked up Jillian. She wanted Jillian to master the stairs herself. Eventually, that extended to social skills. Kids with Down syndrome are overtly, sometimes overly, affectionate. It’s endearing. It also adds to the stereotype. Early on, Kerry had Jillian shaking hands and making eye contact.

She also worried that all the attention paid Jillian would make Kelly feel neglected. Kerry took Kelly to Jillian’s therapy sessions. She involved him in Jillian’s games. She told him how much she loved him.

In ways subtle and profound, Jillian got something else from Kerry: An iron will she wielded like a magic wand. Jillian would always do what she set out to do.

With Jillian, Kerry got the sibling she wanted for Kelly, but she also got to do the work she’d always wanted to do. How it came about could not have been predicted. Jillian was my daughter. She was Kerry’s monument. Construction was just beginning.

CHAPTER 4

Therapy

We never had the luxury of being able to close our eyes and pretend.
—
FRANK DEFORD, FROM
ALEX, THE LIFE OF A CHILD

W
hat they don’t tell you about having a child with Down syndrome, what they can’t possibly know, is that very quickly you develop a syndrome of your own. It is equal parts fear and determination, anguish and love. It produces an alchemy of hope and sadness, a strange human metallurgy that stiffens your spine as your heart cracks. You don’t know what to do. So you do everything, and even then, everything isn’t enough. But its purpose is to sew you tightly so the worry doesn’t win.

We chased information. We kept moving. That way we eased our grief. We knew we couldn’t cure Jillian. We also believed it was worth the attempt. We became wrapped up in a measured mania. Not an obsession, just constant motion.
You can’t drown in sorrow when you’re spending all your time swimming.

We stayed afloat on the hope of the present. What can we do today to make Jillian better? The future became immediately and forever constricted. Our lives became a sports cliché. We took it one play at a time.

We had left the hospital as soon as we could. A nurse had asked Kerry if she wanted to be moved from the maternity ward. “Why would I want to do that?” my wife had asked. “I just had a baby.” The implication was that the maternity ward was a happy place. Our presence was anything but. We didn’t want to stay anyway. It wasn’t a happy place.

The hospital staff had offered mounds of literature. Armies of the well-meaning—doctors, nurses, counselors, volunteers from the local Down syndrome association—provided printed advice. “Here are some things you might like to know,” they had said. The pamphlets had titles like, “What Is Down Syndrome?,” “Knowing Your Baby” and “Up Syndrome.” We thanked them and threw the pamphlets in the trash. The writers knew their subject from a clinical perch; some even had firsthand experience. They did not know Jillian.

Kerry and I had no desire to discover what Jillian wouldn’t do. Not that first day, or any day thereafter. We didn’t want anyone defining Jillian. We would leave that to her.

“They didn’t give us that stuff when Kelly was born,” Kerry said. We were insulted and in denial, both. “I just assumed Jillian would do all the things everyone else does,” Kerry said. Tell us what she can do.

We developed a few mantras that day. They would expand and evolve, but the resolve they implied never did. The sayings
got us through the days. They were a banner that conspired against doubt and pain. We didn’t want to know what was behind the curtain. We didn’t want to know what was beyond the next five minutes. We plowed ahead, repeating phrases:

All You Can Do Is All You Can Do.

Nothing Is Definite.

Let Jillian Be Jillian.

And, above all: Expect. Don’t Accept.

You should get what you expect. Not what you accept. For us, it was the difference between battling and settling, between daydreams and real ones. It is how we’ve helped Jillian become Jillian. Her limitations are obvious. What’s less apparent is how many of those limitations disappear when we expect better and more from her and from ourselves—and from everyone charged, however briefly, with Jillian’s progress. Jillian’s potential would not be tethered to anyone’s preconceptions.

I read something not long ago in a book called
Choosing Naia: A Family’s Journey
by Mitchell Zuckoff. In it, a pediatrics professor at the University of Connecticut named Robert Greenstein, who was also director of the Division of Human Genetics at Connecticut Children’s Medical Center, is quoted as saying to the couple whose unborn daughter, Naia, had already been diagnosed with Down syndrome: “Nine out of ten things people are going to tell you about Down syndrome are going to be wrong. So it’s up to you. If you choose to have this baby, you have to be the expert. Take leadership. People are going to follow your lead. If you’re really positive about it, other people will be positive about it.”

We too were overloaded with facts and figures in those
early weeks and months. We’d see a geneticist and therapists of all types. Books were recommended and passed along, appointments were made. And we began to realize how different our lives would become.

During Jillian’s first few weeks, when people didn’t know what to say, what we heard most was, “God doesn’t give you anything you can’t handle.” I didn’t know what that meant. If Kerry and I were unfit parents, we wouldn’t have had a child with a disability? That seems an incentive to be a lukewarm parent. If God judged us barely adequate at bringing up kids, He wouldn’t have determined we were competent enough to raise a daughter with Down syndrome?

Well-intended people had trouble talking about our daughter. The phone kept ringing, and people were surprised when Kerry answered. Why would someone who just had a baby with Down syndrome be answering the phone? “It’s like they thought someone had died, and the next of kin doesn’t want to come to the phone,” Kerry said.

The nicest people said the strangest things. “I’m sorry” sounded both appropriate and offensive. We had no good reaction when someone said that. If we said “thank you” it affirmed that, yes, we were sorry, too. When we weren’t.

“How are you?” didn’t quite get it, either. That’s a common enough question. We got it when Kelly was born. The tone was different with Jillian, though. The question seemed freighted with genuine concern for our emotional well-being.

“We’re fine,” Kerry and I would say.

“Don’t worry, it will be all right” was another well-meaning reaction to Jillian’s arrival.

Who says it isn’t all right now?

I said “uh-huh” a lot.

“We’re so sorry,” someone might say.

Uh-huh.

“Will she get better?” was another.

I don’t know. Better than what?

She didn’t have the flu. “It’s not a disease,” I told someone. “It’s who she is.”

Not long after Jillian was born, we had her baptized. A day or two before the event, Kerry mentioned in passing to the minister that Jillian had Down syndrome. “That’s all right,” he said. “We’ll baptize her anyway.”

We learned to interpret people’s words through the filter of their best intentions. When someone said, “I’m sorry,” what that person meant was, “I know you’re sad and disappointed now, but it will get better.” When someone said, “Will she get better?” they wanted to know if through hard work and determination, Jillian could eventually overcome her disability. Her Down syndromeness.

The reactions were a sort of foreshadowing for Kerry and me. So this is how the world is going to be: Hesitant, fearful, well-meaning and removed. It would be filled with people offering condolences.

Less than five weeks after she was born, we enrolled Jillian in physical, occupational and speech therapies. She had checkups that went far beyond the normal baby-doctor visits because babies with Down syndrome come with a giant catalog of potential health sadness: Eye issues, stomach issues, holes in their hearts that have to be closed with surgery.

Other things happened, too. Good things. Life lessons happened daily. We learned that compassion, like charity, can
be both selfless and selfish. Doing for others makes us feel good about ourselves. Attending to Jillian’s needs was part of my job as her father, of course. But in those first days and weeks of her life, the feel-good I got far exceeded the effort I put in on her behalf. Jillian needed my attention. No more, though, than I needed hers.

“C’mere, Jillie,” I’d say.

She couldn’t come here yet, not at three weeks. She might lift her head, though, and aim her gaze in my direction. I’d grab her ankles and pull her gently across the rug in the family room. “Time for your massage. People pay good money for this stuff.”

Jillian was on her back, staring up at me with perfectly round brown eyes that looked like chocolate chips. She’d started cooing almost as soon as she came home. “A-oooh,” she’d say. It was a foreshadowing of words to come. Rivers of words, torrents—not all of them sensible or comprehensible. We would never have to worry about Jillian speaking. Occasionally, we would wish she’d stop.