An Uncomplicated Life (34 page)

In her biography on her website, Marrin says she has “a
special interest in learning disabilities” because “someone close to me in our family” is learning disabled. This intimate knowledge fortifies her conviction; she’s the anti–Ron Jaekle.

“I am convinced that it is a grave misfortune for babies to be born with Down’s or any comparably serious syndrome,” Marrin writes. “It’s a misfortune for their parents and their siblings as well.”

Words color perception. Perception is reality. Imagine dropping the “N-word” so causally these days. We make allowances for the physical disabilities. Those with mental disabilities aren’t as lucky—especially in how they are perceived.

The issue comes with the ultimate irony. Science is operating at cross-purposes when it comes to what to do with people with disabilities. Just as advanced testing threatens/promises to eliminate a whole group of people, other medical advances offer the hope that those people could thrive far beyond current expectations.

In July 2011, a story appeared in the
New York Times
about the work of Dr. Albert Costa, a physician and neuroscientist. Costa’s daughter, born in 1995, has Down syndrome. Costa experimented on mice with a drug known as memantine, used to treat Alzheimer’s. The results were hopeful. The mice showed improved memory. Costa concluded that they were able to learn as well as standard mice. He suggested that a similar treatment might be effective for people with cognitive disabilities.

Later that year, the Swiss biotech giant Roche announced a clinical trial “to investigate the safety and tolerability of a molecule designed to address the cognitive and behavioral deficits associated with Down syndrome.” Even this research
is viewed with an arched brow. Some parents of children with Down fear any improvement in intellect would come with a change in personality. They wonder if the tradeoff would be worth it.

And so it goes. There is no right or wrong answer. There is only personal experience.

Sarah Klein is Jillian’s best friend. Her mother, Catherine, gave birth to Sarah, knowing Sarah would have Down syndrome. Catherine was 38 years old in 1993 so she underwent what at the time were standard tests for birth defects. Hospital staff administered an alpha-fetoprotein test, a blood draw that can detect chromosomal abnormalities in the fetus.

That result came back borderline. That day, Catherine underwent a sonogram, which showed nothing unusual, then an amniocentesis. She and her husband, Walt, were not prepared for what happened next. The phone call came days later, from her obstetrician. Walt was at work in New York City, an hour by train from their Connecticut home. Catherine had Sarah’s older sister Jenny, then 18 months, in her arms when the phone rang. “You’re going to have a baby girl with Down syndrome,” the doctor said, with all the warmth of an audit.

“At that moment, my support group was Jenny,” Catherine recalls.

The Kleins next visited a geneticist, who was equally dispassionate. He greeted them with “a litany of all that could go wrong,” says Walt. “It was like an anvil falling on you.” As Catherine sobbed, the doctor dispatched an intern to find some tissues. “He mentioned institutions,” says Walt. “They still had them in Connecticut.”

The hospital assigned the Kleins a social worker, whom
they met with three times. On each occasion, the social worker asked Catherine if she was sure she did not want to terminate the pregnancy. “It’s not too late,” the woman suggested.

“There seemed to be a big assumption within the medical community that I should terminate,” Catherine says. She had suffered three miscarriages in a previous marriage. She never considered not having Sarah.

Walt says the couple never discussed abortion. “We were deeply in love. We mourned, but that passed quickly. We were a great family for this child. We had a great nucleus and a supportive extended family. It quickly felt like the right thing to do.”

What will happen to research designed to help those with Down syndrome? The medical field might be merciful, miraculous even. It is not charitable. If the market shrinks, so will the profit motive. Just as society is grasping the benefits of including its citizens with Down syndrome, science has discovered how to eliminate them. “Weed them out” as the author of the
Time
story put it.

It’s like taking one too many steps to reach the mountaintop.

Jillian wouldn’t be Jillian without the enhanced and enlightened public support she has received. She would be the victim of “breakthroughs.”

In the
New York Times
story, Dr. Costa says the emergence of safer and more effective prenatal testing has meant fewer dollars for Down syndrome research: Money from the National Institutes of Health plunged from $23 million in 2003 to $16 million in 2007, before rebounding to $22 million
in 2011. In comparison, cystic fibrosis research received $68 million in 2011.

“If we’re not quick enough to offer alternatives, this field might collapse,” Costa said.

Then what?

Experience, no matter how fulfilling, is no match for scientific certainty. Condemning those who choose to abort imperfection isn’t something I’m comfortable doing. I didn’t walk that mile. I’ve walked only mine. It’s been a good walk.

I don’t dwell on Jillian’s shortcomings any more than I do Kelly’s. Neither of them is ever going to design a rocket or cure a disease, and I can live with that. Could I live without them? I’d rather not. They’re good people.

I asked Walt and Catherine Klein what they might say to a couple faced with the choice the Kleins made. Sarah is 21 years old now. She graduated from high school. She’s in her third year at Northern Kentucky University.

“Don’t be scared” is what Catherine would say. “This child will need some extra help. Every child you have needs your help, in different ways. You can’t control how your children will need you.

“A wonderful community has opened up to our entire family. The connections we’ve made are remarkable. Sarah has touched more lives than I will, if I live to 150.”

“Come see our daughter,” says Walt. “I think you’ll be impressed.”

Dr. Ronald Jaekle’s daughter Melissa lives independently in a community for disabled adults outside Houston. “Having Melissa as a daughter has broadened my scope and allowed
me to be more empathic in doing my job,” Dr. Jaekle says. “It allows me to talk about the challenges, with heartfelt conviction.”

Jillian Daugherty is thriving in the social mainstream, engaging and engaged, helped by a million hands, seen and unseen. The tapestry of Jillian’s experience could be lost forever in the name of perfection. Which is ironic. Because in some very tangible way, Jillian is closer to perfect than anyone I’ve known.

CHAPTER 29

In Love and Moving Out

I love you so much in my heart and this is amazing
we are dating for seven years. I think I want you forever.
Can I keep you for my love?
—
JILLIAN, TO RYAN

O
n the way home from a date on a night in May 2012, the happy couple sat in the backseat of Kerry’s car and dreamed aloud. The subject was their impending independence. Jillian was 22 years old, and Ryan was 24. They were ready, they decided, for their own place. They had big plans.

“We can go to Reds games,” Jillian suggested, “and plant flowers.”

“We can eat out whenever we want,” said Ryan.

Both agreed that staying up all hours of the night would be a big plus to living together alone. There was also a mutual understanding that a dog would be involved. “I’ll make you pancakes on Saturdays,” Jillian suggested, “after we sleep really late.”

Ryan said, “Ooooh, yeah.”

Kerry and I chuckled. “Living together is a non-stop party,” I said.

“We can’t wait,” Jillian said.

Ryan, somewhat more practical, asked, “What do you mean?”

Later that night, Jillian, Kerry and I gathered on the deck. Although Jillian enjoyed talking about leaving, and the promise of unlimited late nights and pancake breakfasts, she also had her reservations. “I’m just a little bit nervous, a little bit,” she said.

“I know, Jills.”

“It’s going to be hard to say goodbye to you guys.”

We assured her that any apartment they chose would be very close to us. We also reminded her that we didn’t see her much now anyway, with her spending all day at school, managing the basketball team and the still-obligatory Jillian Daugherty Show time, in the basement or her room.

“It’s true you won’t be right down the hall anymore,” I said. “You won’t be able to tell us goodnight or give Lucy a hug.” Lucy is our eight-year-old golden retriever. I wasn’t trying to make Jillian feel awful, even though that’s what I did. I wanted her to know that getting a place of her own wasn’t all ball-games and flower boxes. “This would be a lot of hard work for you and Ryan,” I said.

Jillian sniffled and pondered that for a moment. “No matter what, we stick together because we love each other,” she said.

“I know you and Ryan love each other. You just need to understand that it’s a lot more responsibility. You have to cook and clean. You have to get yourself up and on the bus in the morning. You have to shop for food and do laundry.”

“I don’t mind,” Jillian said. And in truth, she didn’t. She’d been talking about moving out for months. In Jillian’s mind, the transition from “I wide bike” to “I’m ready for my own place” was small and seamless. When she determines she wants to do something, there is no dissuading her.

Kerry and I had been thinking the same. It was the next logical step. It was the biggest step of all. We’d been working toward it for only the past 21-plus years. A few months after her 21st birthday, Jillian started banging the drum.

“I think your little girl is ready to move out,” she announced.

“Is that right, big-time? What makes you think that?” I asked.

“I can count money.”

Really?

“Yep. And I can make dinner.”

It was true about dinner. Kerry had started giving her recipes to follow. As Jillian proceeded through the steps, Kerry took pictures: The ingredients, aligned on the kitchen counter and then being prepared for cooking. What the finished product looked like. Kerry put the pictures and the recipes in a three-ring binder.

“I make my world-famous meat loaf,” Jillian explained.

“That you do,” I said.

Early on, Jillian had some trouble reading recipes. Occasionally, measurements threw her. There’s a big difference between a tablespoon of salt and half a cup. The nights Jillian cooked, I was ready for just about anything, including a call to the pizza guys.

But Jillian learned. She’d begun helping me on the grill: Salmon, turkey burgers, hot dogs. Jillian’s capabilities extended
to spaghetti and meatballs and baked chicken. Her repertoire was far more extensive than mine was at age 21. If it didn’t fit in a Crock-Pot, I didn’t eat it.

“There’s more to moving out than cooking,” I said.

“I do my own laundry,” Jillian shot back. Actually, she did some of her laundry, occasionally. Jillian was still a little shaky when it came to water levels and temperatures. And she needed a stepstool to reach the knobs on the washing machine and dryer.

“Yeah, you do laundry. Once every three months.”

“Dad.”

“Jillian, if we let you do laundry only when you wanted, you’d walk around looking stricken,” I noted. “Child Services would come after us.”

“Da-a-a-a-d.”

Every couple of days after that, Jillian tossed out some form of moving-out pronouncement. We could be discussing the fate of the free world or where to find a good $5 cigar, and Jillian would interject, “I’m not your little girl anymore.”

“You’ll always be my little girl.”

“What I mean is, I’m ready to move out.”

We’d started to make a plan. With Ellen and Dimitri, Kerry and I set fall 2012 as the target time. We picked September, which would coincide hopefully with the start of Jillian and Ryan’s last year at Northern Kentucky. We didn’t want to combine the stress of their finding jobs with the strain of living on their own. A year of having the certainty and regimentation of college would ease the transition. We didn’t tell Jillian and Ryan this. They still had to learn some things.

Managing money, eating properly, keeping an apartment
relatively clean, and not bothering the neighbors. And, ah, well, um . . . sex.

They would share a bed and all the typical urges. It would be wrong to assume that adults with disabilities don’t have the same desires as the rest of us. Jillian and Ryan experience the same culture. They go to the same movies, watch the same TV shows, and absorb the same obsessions. They’re curious, too.

We had to take this in stages. We didn’t dismiss their capacity for love or their understanding of the different ways to express it. We encouraged it. But those with intellectual disabilities bloom late on the emotional side, too. Things needed to be explained. Things needed to be tried.

The first step was to leave Jillian home alone for a night. Not long after Jillian’s 21st birthday, in October 2010, Kerry and I spent the night at a local hotel, ten minutes from the house. We checked in late in the afternoon. We armed Jillian with copious Post-it notes—lock all the doors, don’t answer the land line, feed Lucy—a box of spaghetti, a bag of frozen meatballs and one request: “If you get scared, you can call.”

Jillian did call that night, at 8:30 p.m. or so. I could hear music in the background. “What are you doing?” I yelled into the cell phone.

“I’m having a great time,” she said.

She’d cooked dinner, cleaned the kitchen, and made popcorn. She planned on watching a movie. For the moment, she was listening to music and singing loudly. “You okay?” I asked.

“Yes, I am. You guys stay as long as you want.”

Well, all right then.

That test aced, Jillian assumed she was ready for bigger things. “I’ll stay with Ryan,” she declared.

Well. That would take more prep work.

We’d started a few years earlier, when Jillian was 19 and Ryan was 21—by encouraging them to spend time alone after dates. The basement was the room of choice. We’d give them an hour or two. No rules about keeping lights on, or feet on the floor. We’d had The Talk. Actually, we’d had several. They were the same talks we’d had with Kelly, covering the same, well-worn ground. Ellen and Dimitri did the same with Ryan.