An Uncomplicated Life (33 page)

J
illian celebrated the rest of us all the time. Every so often, the rest of us celebrated Jillian. She turned 21 on a Sunday in October. We let people know we were going to note the milestone by gathering at a local sports bar, where well-wishers could watch the guest of honor drink her first beer, an event she’d anticipated for months.

“I can’t wait until I get my first beer,” Jillian would announce at random moments. That made for interesting conversation with her teachers, friends and parents of friends. Jillian was not deterred.

It was to be an informal affair. Beer, appetizers, football on
the big screens. Come when you will, go when you like. We figured 20 to 30 people would be there: Kelly, his girlfriend, Ruby, both sets of grandparents, longtime family friends, people from the neighborhood. The restaurant pulled together two eight-top tables and assigned us one server for the four hours we intended to stay.

Close to 70 people showed up.

Friends, family, neighbors. People we didn’t know and had never seen. They just dropped by. “All these people are here because of you,” I said to Jillian, a few hours into it.

“I don’t know what to say, Dad,” she said. “I love my life.”

I tried to summon some significance beyond the obvious. I looked for the water pressure behind the eyes. Jillian was 21 years old and thriving. An outward display of emotion seemed the way to go. It didn’t happen. Twenty-one was like graduation, like Jillian’s first day at Northern Kentucky.

The pride we felt on Jillian’s major days was the same we felt with Kelly’s. We’d planned for them, we’d worked for them. We’d expected them. Jillian did the rest. When they occurred, we noted them and celebrated them. At that point, tears would have been something of a conceit: Look what we’ve done for our 21-year-old with a disability.

The smaller moments elicited tears though. The little wins prompted them.

“I’m a big girl now,” Jillian had said that morning on her birthday.

“You’ve been a big girl for a while,” I said.

“Now I’m official,” Jillian said. And then this:

“Dad, I’m so happy now. I’m your little girl, and I get to drink beer. Thank you and Mom for being the best parents to
me. You guys are the best. I know I’m going to move out soon, and I will miss you guys. But I will always love you.”

“Thank you, Jills. You’re moving out?”

“Well, not right away, Dad. But soon. I know you’ll be a wreck.”

“Probably,” I said. “And Jillian?”

“Yeah?”

“One beer today.”

My mother and father sat quietly in the back, away from the thick of the festivities, which were centered around Jillian’s high-top table. They’d come from Florida for the party. They’d moved to the gulf coast in 1982, when my dad was 49 years old. He’d worked for the federal government for 25 years. He’d had enough. My mother’s parents had retired in Bradenton, and she wanted to be close to them.

I was 24 years old when they moved; my brother and sister were 27. Eventually, my sister moved to the same town, but my brother and I stayed north, he in Maryland, I in Ohio. A family, separated by a thousand miles. Absentee love. The distance created a regret my mother has only recently expressed. Five grandchildren have grown up seeing their grandparents only for a few days in the summertime and on the occasional Christmas visit. Love was given and received on the telephone, in thank-you notes, in well wishes after graduations and traditional holidays. It was abiding but fleeting.

More than 30 years after my parents moved to Florida, they wish they hadn’t. At least not so soon. Being closer to one part of the family meant more distance from the rest of us. My mother never got to know her grandchildren. “I missed out on all of it,” she said.

She and my dad had planned to stay an hour or two at the party, then retreat back to our house. They aren’t big on socializing and are less enthusiastic about large crowds. Instead, they stayed the entire time. My father, whose affinity for grandparenting was tepid at best, was genuinely moved by the occasion.

“Write about this,” he said. “People need to know how this works.”

How this works. What an apt phrase.

Jillian embraced all her family, even the members who weren’t related to her. Sometimes, especially those people. Dave Bezold and Danny Boehmker. Evan Stanley and Tony Rack. These weren’t simply friends to Jillian. They were essential relationships, as defining and meaningful as any she had.

Jillian had the basic support of a nuclear clan. Most of us have that, whether out of love or obligation or both. Jillian inspired a larger family.

These were people who, from a distance, made her life better. They came together on days such as this one, not out of obligation (they had none) or love (not in the literal, family sense), but because they knew she genuinely appreciated their presence. And because wishing Jillian well made them feel better about themselves.

This was how it worked.

Kerry’s parents, Sid and Jean, were part of the Jillian posse. They lived close enough—in Pittsburgh, not quite five hours away—to come for birthdays and Christmas and special moments in between. My parents loved from a distance. On this day, they realized a little of what that distance had caused
them to miss—especially because I wasn’t great at getting my kids down to Florida on even a semi-regular basis.

Jillian would always have a strong, blood-related family. We were her base camp, from which further exploration was possible. The legions of other family members allowed her to roam. They broadened the confidence we instilled. Without them, Jillian would not be Jillian.

Her 21st birthday would go on for a week. Every day, someone would give her a present or take her to lunch. The basketball team sang “Happy Birthday” to her. An assistant coach baked cupcakes for her. In the middle of the seemingly endless tributes, I asked her, “Do you know why people are always so nice to you?”

We were in the car, on the way to NKU, where the women’s basketball coaching staff was taking Jillian to lunch that day.

“Because I’m a good person?” Jillian answered.

Yes.

Back at the sports bar, a man named Bob Young said, “Thanks for inviting me.” I’d met Bob once before. He’s a regular contributor to the blog I write for the
Enquirer
. He’d never met Jillian. He’d read about the party and had brought along his college-age son. “What an inspiration Jillian is,” he said.

The inspiration worked the crowd. “Thank you for coming to my party,” Jillian said. “Nice to meet you. Are you having a good time?” People were attracted to her. People she’d never met. A wonder of Jillian is the joy she inspires in others. Her disability enables.

They came and went on a fine autumn Sunday, when they
could have been doing something else. We thanked them all. I wanted to ask them why they came. But I knew. I knew why they came.

Jillian ordered a Sam Adams Light at 1:00 p.m., as soon as we arrived. At 5:00 p.m., she finished it. “I loved my beer, Dad,” she said as we walked from the restaurant. “I loved my day.”

CHAPTER 28

Testing

They’re grieving for the loss of perfect.
—
DR. RONALD JAEKLE, DIRECTOR OF
PERINATAL SERVICES, UNIVERSITY
OF CINCINNATI HOSPITAL

M
odern science has made it possible to grieve and celebrate all at once. In some corners, science is capable of pounding both sides of the same drum, producing sounds so different, you wouldn’t dream they’d be coming from the same instrument.

Just as Jillian Daugherty and her big family gathered to celebrate her present and future, doctors and researchers were working to make it meaningless. You don’t have to have a child with Down syndrome now. An expectant mother can undergo something called nuchal translucency screening. It’s as easy as a finger prick and a blood draw, and it’s done between the 11th and 14th weeks of pregnancy. Even then, fetal
DNA floats freely in the mother’s bloodstream. Technically, the test doesn’t provide a diagnosis of Down syndrome; it tells a woman if she is at increased risk. But the test does identify between 85 and 95 percent of Down syndrome babies, which makes it a rather accurate forecast.

“Prenatal technology,” they call it. Building better babies through medical breakthroughs. Bioengineering is not science fiction. It’s science.

What would you do?

It’s rare now that hospitals suggest that parents of a newborn with Down syndrome give the baby up for adoption. It’s all but unheard of that parents are asked if they intend to keep their child. Instead, the option is entirely preemptive. Don’t have the child at all.

Nuchal translucency screening was not available in 1989; amniocentesis was. Kerry’s could not be performed. We had no decision to make, a non-occurrence for which I still say prayers.

It’s easier than ever to make everything right. Bodies are worked like pieces of clay. Tightened and tucked. Parts are replaced, lines are erased. Parents start preparing their kindergarten kids for college. Heaven help them if they’re not playing Select soccer or Beethoven by the age of ten.

None of us is perfect. Some of us try to be. Others see it as a right.

A forecast of a child with a “chromosomal abnormality” doesn’t meet anyone’s definition of perfect. Today about 90 percent of women who are told they’re likely to have a baby born with Down syndrome will choose to abort. That is the cold, hard calculus in the age of designer children.

Science doesn’t get a free pass, though. It squirms in the presence of moral judgment. Are we making choices that aren’t ours to make? Do we have the right to have a “perfect” child? If we do, define perfection. Is it permissible to wipe out an entire segment of the population? What becomes of those left in that group, when humans like them can be so easily eliminated?

“So many people are focused on the negative aspect,” says Dr. Ronald Jaekle. He is a professor of clinical ob-gyn at the University of Cincinnati Medical School. He’s also the director of perinatal services at University Hospital there. “None of us were guaranteed a perfect life.”

Dr. Jaekle does between 30 and 35 ultrasounds a day. One in 25 will reveal a birth defect. He welcomes the nuchal screening. Not for the life-or-death option it provides, but for the preparedness it offers. Prepared parents are better parents, he says. “Parents with the pre-natal diagnosis are more effective parents for the first two or three years of the child’s life,” he says. “That’s our only goal here.”

Dr. Jaekle disputes the high termination rate. He claims that “less than 5 percent” of his patients choose to terminate the pregnancy. “I get frustrated when someone’s baby has a non-lethal anomaly, and they wonder if they should terminate. It’s not my place to make that decision. I’ll explain the reasons they shouldn’t, but I’m not going to be judgmental.”

At that point, the doctor functions as an unofficial grief counselor.

“That’s their biggest reaction. They think they’re grieving for the loss of the baby. They’re really grieving for the loss of perfect. Women during a pregnancy sculpt their kids’ entire lives. What color dress for senior prom? What about the wedding?
It’s a storybook. That’s where the grief comes in. It’s a normal response we want to work through.”

Mothers aren’t the only ones lost in that dream. Before Jillian was born, I imagined cymbidium orchids under a porch light.

Dr. Jaekle doesn’t come to the subject blindly. His 25-year-old daughter Melissa was born 13 weeks premature with cerebral palsy. She weighed 2 pounds, 13 ounces. Five minutes after her birth, Melissa was still receiving chest compressions and had an Apgar score of zero. “You don’t have to do this for us,” Dr. Jaekle told the medical staff keeping his baby girl alive.

Melissa survived. She spent the first year of her life in the hospital. Doctors told the Jaekles their daughter likely wouldn’t walk or talk. Melissa has thrived, thanks to informed and insistent parents. “The biggest challenge has always been making sure everyone else had the same expectations for Melissa that we did,” said Dr. Jaekle.

Armed with that vast continent of empathy, the doctor addresses couples at one of the biggest crossroads of their lives.

“My job is to get them to come to terms with what we have found,” Dr. Jaekle said. “What we traditionally say is, ‘You need to recognize that the overwhelming majority of the kids with Down syndrome are valued and valuable members of their family.’ It’s not a devastating end, just a different direction. I want them to be able to embrace this different future and go forward.”

Tough sell, that.

On the surface, the answer couldn’t be easier. Do you want a child with a disability, or a child without one?

The fear doesn’t end when the child is born, regardless of the preparedness. Media reports are sprinkled with parental misgivings. In a November 2011 story in
Time
magazine, a woman pregnant with a child with Down syndrome wondered what the child “would do to her marriage and her two older children.”

Another story in
Time,
in February 2012, featured a new mother who admitted she waited eight hours before she “mustered the nerve” to visit her new baby girl in the neonatal intensive care unit. “I was so afraid of what she was going to look like,” she said.

Even Ron Jaekle said it took him “many years” to come to terms with Melissa’s disability.

It doesn’t help that society can still view people with cognitive disabilities as lesser beings, an image the media sometimes does not discourage. In 2012, political commentator Ann Coulter referred to President Obama as a “retard.” Baltimore Ravens quarterback Joe Flacco used the Super Bowl stage in February 2013 to label “retarded” the notion of playing the game in a cold-weather city.

George Clooney made reference to a “retarded” individual in
The Descendants,
a movie that was nominated for an Oscar. In a November 2008 edition of the London Sunday
Times,
respected columnist Minette Marrin had this to say, in a column tangentially about abortion: “What more powerful social reason could there be for an abortion than the virtual certainty that the fetus would be condemned to a life of frustration, disappointment, dependence, serious illness and poverty, to the great sorrow and hardship of its family?”