An Uncomplicated Life Page 7

  12/2, 5:30 p.m.: Dr. Brokaw decided to have her stay overnight with no aerosol treatments, to observe, then send her home tomorrow a.m.

  Jillian attacked life from the day she became a member. Jillian has never been less than fearless and engaged. In baseball parlance, Jillian gets her hacks.

  There is that. And this:

  Her existence has a point. Jillian might have gotten a bad dice roll, but her presence is not happenstance. She is here for something. This is what I took with me from Children’s Hospital after 12 days. Jillian survived. She is here for something.

  This is what I believed then. This is what I hold dear.

  Kerry’s last note:

  12/6: Jillian began cooing at us, and also in response to us.

  Ah-oooh.

  CHAPTER 6

  Kelly

  . . . and remember to be kind.

  —JACKSON BROWNE

  The first time Jillian laughed was after Kelly made a face. He’d been working on it for days. He’d contort his gaze into all manner of goofiness.

  He would test the elasticity of his nose, up and down and side to side.

  “Hey, Jillian, look at me! Look, Jillian!”

  He’d use his fingers to pry open his mouth. He’d do fantastic things with his face and tongue. The human gaze is a marvelous instrument of expression. Kelly turned his into Comedy Central. Kelly did this because that’s what little kids do, but also even at age three, he was beginning to understand there was something different about his sister.

  The first laugh happened when Jillian was two months old and freshly freed from the hospital. What we heard was a staccato rumble from somewhere deep. Kelly was busy making his funny faces, and Jillian was sitting up, propped by the couch.

  “Did you hear that?” Kerry said.

  I did.

  A laugh doesn’t seem like much, but we hadn’t done a lot of laughing in those first eight weeks. During Jillian’s hospital stay, laughter was an obscene, awful foreign language. We had to learn it all over again, and to be grateful for its presence.

  It wasn’t difficult. We hadn’t lost Jillian, and in the process, we’d found something. Calling it “perspective” is clichéd. Everyone who knows someone with a disability talks about the perspective they’ve gained from the knowing. You might find “perspective” when Jillian is right in front of you. You lose it the next time you’re sitting in traffic.

  And yet from the moment we left the hospital with Jillian for a second time, we knew nothing would be quite the same. We would not be so busy with each day that we would presume its best moments.

  Jillian wasn’t struck with our sober single-mindedness. She had no idea. When Kelly was making faces, all Jillian knew was that her brother was making her happy. So she laughed. This was the start of something big.

  Eventually, the village embracing and protecting Jillian would spread. As she ventured deeper into the world, her influence would spread, too. At this moment, the village was tight but no less important.

  There is no predicting how a kid will react to having a competitor in the house, especially when the new sister has a disability that requires extra attention. But Kelly’s eagerness to make his sister laugh was a clear and pleasant beginning and a start toward good things.

  We enjoyed the moment. We allowed that. It was extraordinary.

  Meantime, Kerry and I worried about how all this attention paid to Jillian would affect Kelly.

  He was three years old then and was shy around strangers, but there was nothing strange about his house. He’d called dibs on that from the first. Now, a stranger had arrived and . . . stayed.

  Kelly celebrated Jillian’s original homecoming by hanging from the mantel in the family room. Jillian was two days old. Kelly had been around three years. He’d earned his spot in the family hierarchy. She was coming here? To my place? Well, okay. But she can’t do what I can do. She can’t hang from the mantel.

  His size-two feet dangled a foot above the floor. His fingers were bone-white from clutching the wood. He was incredibly proud of himself. “Look at me!” Kelly announced. “Look at what I’m doing! Jillian can’t do this!”

  Kelly also told us he had teeth. He did have a full set of gleaming baby teeth, all in a row. “Look at me eat these Oreos! Jillian can’t eat Oreos!” Kelly proudly jammed a few fingers into his sister’s mouth to advance his theory. “See? No teeth! Jillian can’t eat Oreos! Jillian doesn’t have teeth!”

  Kerry wanted Kelly to have Jillian. She wanted him to have the experience she had with her older sister. Kerry and Janis weren’t always best friends. But they were close even when they were apart, in a way only sisters can be. Soon after Jillian’s diagnosis was made, nurses at the hospital asked Kerry her most immediate concern.

  “I’m worried about my son,” she said.

  We had named Jillian long before she was born so Kelly could know her before she arrived. We kept him informed of her progress. We didn’t want him to feel left out. Kelly felt Jillian kick in the womb. He heard the whoosh-whooshing her heart sounds made on the ultrasound. He watched the video from that procedure. We had a sno-globe that played the Tony Bennett standard “I Left My Heart in San Francisco.” Kelly liked to wind it up and put it on Kerry’s stomach.

  He was ready for a sibling, as much as any three-year-old could be. But maybe not for this sibling.

  “Look how much I grew!” Kelly said as he threatened to separate the mantel from the wall.

  “We saw you yesterday,” I reminded him.

  He insisted on tossing a ball in the house. It nearly went through a window. He whooshed like a big wind. “Look at me! I’m fast!” I’m thinking, So this is how it’s gonna be. One kid won’t do enough. The other will do too much.

  Their lives began entirely differently. Jillian entered center stage, shouting triumphantly, seeking applause in the footlights. Three years and a few months earlier, her brother had emerged in silence. He was awestruck and simply stared.

  Kerry’s legs were still airborne, in the stirrups. A doctor stood at the foot of the bed. Beneath his feet lay a wastebasket. I remember thinking, Is that in case Kelly slides out so quickly, the doctor doesn’t catch him? Headfirst, into a trash can. What a way to begin life.

  That didn’t happen. Kelly’s head emerged first, facedown. He cork-screwed as he left Kerry’s womb, so when he finally arrived, he was looking up at the ceiling. It took him a few minutes to decide he really wanted to be here.

  More than two decades later, Kelly is still inquisitive and curious, wary and contemplative. One toe in the water, nine high and dry. He’s still checking it all out.

  In those first few days after Jillian was born, when we grieved a sad dizziness, we also worried for Kelly. What sort of prologue would all the prenatal introductions provide? Would Kelly love his little sister, or resent her?

  That first day home, we paused from watching Kelly’s indoor Olympics long enough to eat some lunch. As we ate, it got quiet—not a normal condition in a house with two kids under the age of four.

  “What happened?” Kerry asked.

  Kerry’s dad, Sid, had built Jillian a cradle. Hardwood, with what looked like sled runners on the bottom, so the cradle would rock. Jillian lay in it now, sleeping. Kerry and I went to investigate. Where is Kelly?

  He was inside the cradle, curled up beside Jillian, an arm around her waist.

  “That’s when I knew this would not be an ordinary sibling relationship,” Kerry said.

  Luckily, it was a big cradle, with enough room for a 6-pound baby and her 40-pound brother. They lay face to face, eyes closed, like nesting dolls.

  This is going to work, I thought. This isn’t going to be so bad.

  Kelly started right in with Jillian, helping with her physical therapy. He’d rub the soles of her feet. He’d gently work her arms, up and down and in and out. He’d sit on the floor of the family room and roll a ball to her to improve her hand-eye coordination. He did everything with her that
Kerry and I did.

  We wanted him to feel needed. It’s a great thing for a three-year-old to be needed. Even at that age, when all that matters to you is what matters to you, Kelly learned that his universe contained other stars. “Without Jillian, I would be an entirely different person,” Kelly said not long ago.

  Less giving, he said. Less understanding, less compassionate. Less aware of peoples’ differences and the possibilities they present. Kelly is fortified with a willingness to look outward. “Jillian pushes me to do what I do,” he said.

  He’s 28 years old now. The quiet, observant child has become a man on the cusp. He lives in Brooklyn, New York, where he works at a publishing house. As he once noted to me, seriously but without malice, “I don’t want to be a newspaper guy, Dad. I want to be a real writer.” Kelly’s emergence into adulthood has looked a lot like the day he was born.

  He knows things his peers do not. Some of it is innate; Kelly thinks about things. Some came from that six-pound girl, lying next to him in the homemade cradle. Jillian has modeled her behavior after Kelly. Kelly has ordered his life around the lessons Jillian’s life has suggested. Things that make the world move: Patience, tolerance, optimism, kindness.

  When Kelly was in nursery school, he took Jillian to show-and-tell. “This is my little sister. She has Down syndrome.” They’d play for hours in the finished basement. Kelly called it the K and J Club. Jillian’s first word was “Kelly.” Life was never so fast that Kelly couldn’t linger a while for his sister. She was both the tug on his shirt and the push on his aspirations. She taught him. This is what I thought. I wondered if he felt the same.

  Jillian, age four, on the beach at St. Simons Island, Georgia.

  He did. He described her as a palm in his back, gently pushing.

  For a family, the extra attention paid to a child with a disability is both a strain and a chance. The hours and frustrations march side by side with the little wins and the big lessons. It’s hard to know where one stops and the other begins.

  Jillian has been the palm in Kelly’s back, gently pushing him to read one more chapter of Faulkner before calling it a night. Refine a few paragraphs in that graduate school thesis. Set the alarm 30 minutes earlier. Be glad about it.

  Kelly is a deep thinker. He’s not good at articulating his thoughts. Jillian gives him a feeling, he says. “Her enthusiasm for life has made me more enthusiastic.”

  When Kelly was in high school, he’d pile into a borrowed car with his guy friends, and head out on weekend nights to commit high school–guy things. Our common drive is shared with three other families. It’s a few hundred yards long. Near its end is a large rock.

  When Jillian knew Kelly was going out, she’d walk down to the rock, sit down and wait for him to leave. Kerry and I watched this scene at least a hundred times:

  Kelly would tell us goodnight for the evening and hop in a friend’s backseat. They’d cruise down our lane, toward the main road. Just a bunch of high school boys, armed with bravado, itched by insecurities that only cool popularity could scratch. Before they reached the end of the driveway, just before the road, we’d see the red brake light. The car would stop.

  Kelly would be awkwardly shoving himself out of what always seemed to be a two-door car. He’d take a few steps, to the rock. He would kiss his little sister on top of her head. We asked him once why he did this and he couldn’t ever actually explain it. He just felt it.

  We never knew what Kelly’s buddies thought about this, or how they felt in the presence of a child with a disability, maybe the first such child they’d ever met. We never asked. We never asked Kelly what caused him to test the cocoon of guy-ness this way. The answer could never be as important as the gesture itself, offered by a teenaged boy deep in the throes of an adolescent’s need to conform and belong.

  Jillian would walk up the drive after that, smiling. “Kelly kissed me,” she’d say.

  Kelly made Jillian laugh, in the scary, hopeful days after she left the hospital, when laughter was a salve. His kiss made her smile.

  We all smiled about that. We also remembered not to forget it.

  CHAPTER 7

  The First Angel

  Speak in a loud voice, clearly and without fear.

  —JONATHAN SPENCE

  Jillian was never our child with a disability; she was simply our child. That’s how we saw it, but it didn’t mean we could make the rest of her world see her the way we did. That required co-conspirators. They had to share our plan for Jillian, which had little room for compromise. They had to come armed with a generous worldview. They had to believe people are only as good as the way they treat each other.

  No one is going to think your child is as wonderful as you think she is. What we wanted was a core of people who would look at Jillian and see potential. We needed like minds with loud voices, speaking clearly and without fear.

  We needed people like Martha Coen-Cummings, Jillian’s speech therapist and first guardian angel. Martha had worked as a speech pathologist for more than a decade when she met three-year-old Jillian Daugherty. “Marfa” taught with compassion, patience and curiosity. She operated from a base of acceptance. She’d been raised that way.

  Her father grew up in Seoul, South Korea, the son of American missionaries. He met Martha’s mother in Illinois after World War II. The family settled in Highland Park, a well-off, multiethnic suburb on Chicago’s North Shore. Martha was the only child on the block who was born in the United States. She was the only one to speak English exclusively; her friends spoke two or three languages. Her father’s closest friends were Asian. Martha was as proficient with chopsticks as with a fork.

  When Martha visited her friends’ homes, she was forever mindful of the cultural mores. Some asked that she remove her shoes at their front door. Others frowned on expressions of affection; no hugging. In one friend’s house, Martha was careful not to compliment something unless she was prepared to take the object home with her. Diversity and acceptance were not the norm in 1960s America. They were in Highland Park.

  This was the sort of person we needed to help us in the building of a better Jillian.

  By the time Jillian and Marfa began what would be a decade-long collaboration, Jillian had been speaking for at least a year. It didn’t matter that neither Kerry nor I knew what she was saying.

  Listening to Jillian was like stumbling into a lost Amazonian tribe. She was multisyllabic and entirely conversational. Jillian had a lot going on, even if it was foreign to everyone but her. We worried at first that our daughter’s disability would deter her willingness to speak. Soon enough, we wondered when she would stop.

  At this age, kids begin forming semblances of words. Kelly said “Day-day” when he talked about our dog at the time, Deja-Vu. He said “moash” when he wanted milk. We understood him, occasionally. For Jillian, the “ah-oohs” had given way to more sophisticated pronouncements. They were gibberish, but they were Jillian’s unique brand of gibberish, complete with pauses, inflections and exclamation points. Jillian’s need to be heard was obvious. Her ability to mix pitches and to vary tones suggested a feeling behind what she was saying. She didn’t know the word “happy.” But she knew what being happy was.

  We would stand in the upstairs hallway, ears pressed to Jillian’s bedroom door, eavesdropping on Jillian’s filibusters, which were her purest form of expression. Her tones, inflections and occasional laughs and cries showed she was capable of creating her own parallel world, complete with all the standard emotions. They indicated intelligence because smarts are required to invent the friends she employed as partners in the dialog.

  And yet, as I listened to my two-year-old, I wondered what transpired in the wide-open spaces between Jillian’s brain and her lips. Where did her abundant thoughts go? Did they emerge lucid from her brain’s transmitters, pinball around and disappear? Was there some great holding tank for all the thoughts she couldn’t articulate?

  I pictured a dead-letter office. A lost and fo
und, for the permanently lost.

  Jillian had no such worries. She just liked to talk.

  Whenever we made the five-hour car trek to Kerry’s parents in Pittsburgh, we discovered we could keep Jillian happy simply by giving her a pair of socks. She would pull them on like mittens, then manipulate them with her hands, like puppets. And she would converse with them for five hours straight. Jillian was fluent in her Language For One. Occasionally, she wouldn’t even need socks. Popsicle sticks, one in each hand, were suitable for a lengthy chat.

  “How can you stand this?” Kerry’s sister, Janis, asked at one point.

  “Stand what?” Kerry answered.

  When Kerry went to Target or Walmart, she’d plop Jillian in a shopping cart, then find her a dress on a hanger. Jillian would pretend the dress was a friend. She and the dress/friend would converse while Kerry shopped in peace.

  In the early years of Saturday Night Live, the late Gilda Radner performed a solo skit in which she played a teenaged girl, on the four-poster bed in her room, acting out lavish adventures in private. Radner called it “The Judy Miller Show.” That was Jillian. She starred in her own, one-woman show, way off Broadway. The Jillian Daugherty Show. These are the times we’d listen in the hall.

  As she got older and the words started happening, Jillian would consult with herself: “What do now?” She’d argue with herself: “No way can do that!” She’d console herself: “It OK, Jiwwian.”

  Even as I marveled at the sounds behind the door, I was sad they weren’t finding a home. There was no audience. This most audacious child, who fought to be born and screamed to stay alive: Would she ever have a voice?

  We make admirable accommodation for the physically disabled. They park in the close-up spaces. Building codes must include them. Science enables them. A physically disabled president lifted us from a Depression and guided us through a world war. A sprinter without legs competes in the Olympics, on appendages of carbon fiber. The physically impaired negotiate our society with few stigmas attached.