Life as Jamie Knows It

by Michael Berube

  Here’s the relevant passage from my book:

  If you had told me in August 1991—or, for that matter, after an amniocentesis in April 1991—that I’d have to feed my infant by dipping a small plastic tube in K-Y jelly and slipping it into his nose and down his pharynx into his teeny tummy, I’d have told you that I wasn’t capable of caring for such a child. But by mid-October, I felt as if I had grown new limbs and new areas of the brain to direct them. Weirdest of all, I was able to accept nasal feedings as part of a routine, using nothing more than the flimsy emotional apparatus I was born with.

  The point—and I suppose I should have made it crystal clear the first time around—is that because we had Jamie, I learned to do stuff I didn’t know I was capable of doing. (The rest of the paragraph explains that this was also true of my relationship to Nick, and indeed it might as well be The Lesson All Reasonably Competent Parents Learn.) I was trying to tell prospective parents, or people with young children with Down syndrome, that you never know. It might just be OK after all—even if you find yourself doing some difficult things on the way to OK. This time around, I will try to tell prospective parents—and bioethicists, politicians, philosophers, and a wide array of people—that it is critically important that you never know. This is why it is so crucial (however arduous it may be) to try to see the world with what Buddhists call “beginner’s mind.” In The Case Against Perfection, Michael Sandel quotes theologian Arthur F. May’s phrase “openness to the unbidden,” suggesting, in the course of his argument against genetic engineering for “designer babies,” that such openness is the very essence of parenting. Or, as John Lennon put it in his one song about being a father, life is what happens to you while you’re busy making other plans. That is life as we know it, and life as Jamie has known it.

  As Jamie has grown and matured, becoming more independent and self-aware, he has developed his own sense of public and private. Accordingly, the ethics of writing and speaking about him have gotten more complicated as he has become increasingly capable of representing himself. For me, the terrain first shifted—as did my expectations of Jamie, once again—as we were packing up to go to the Canadian Down Syndrome Society convention in Waterloo, Ontario, in 2005. I was one of the featured speakers, and I was planning to talk about Jamie’s transition to adolescence; that transition included something he was eagerly looking forward to—being part of the thirteen-to-seventeen group at the conference, with scheduled activities ranging from martial arts to encounters with reptiles. I asked Jamie if it would be OK for me to talk about an encounter he’d recently had at the town pool, which marked the first time I had seen him experience self-doubt. Jamie replied that the story was private—and it has remained so ever since. (Though I am allowed to talk about the story without telling it, as a way of explaining the kind of things we will and won’t say in public.) Though Jamie is, in his way, a public figure, his private affairs are his private affairs. So, for instance, when we talked about what would and would not go into this book, Jamie insisted that we divulge no details about the girls on whom he has had crushes since adolescence. We decided that we would say only this: like billions of other people, Jamie would like a life partner, a companion, who loves him and wants to spend her life with him.

  When Jamie was still little, it meant everything to us to meet parents with older kids, parents who could give us some details on it might be OK after all and (or but) you never know. Now that Janet and I are in the position of parents-with-older-kids, we try to return the favor: your mileage may vary, but our journey has been more complex and wonderful than we could have dreamed. We take deep joy from narratives like that of the man who was initially so distraught by the idea of having a child with Down syndrome that he could not talk to us about it—and has since found (you never know!) that his child is charming, beautiful, and the light of his life. We are honest about the challenges involved in raising children with disabilities, and we respect the decisions of prospective parents who, for whatever reasons, come to the conclusion that this journey is not for them. But I hope that even though some of Jamie’s story must be private, he and I can do a public service by describing his life. We know that his story can only do so much, even for other parents of children with disabilities. Jamie’s life has little in common, other than being surrounded by a loving family, with that of his fifteen-year-old uncle Johnny, my half-brother, the child of my father and his second wife. Johnny is a sweet, slightly built, nonverbal child with autism and requires far more vigilant care than Jamie does—including a personal aide paid for by a Medicaid waiver. Even in my extended family, it is impossible to generalize about disability. Over the years, Janet and I have learned that some parents need help with the child who keeps throwing the car keys down the toilet; some parents need help with the nondisabled sibling who feels burdened; some parents need help with feelings of failure; some parents need help with feelings of denial. Sometimes the children are far apart in age, sometimes less than a year apart; sometimes the child with a disability is the oldest, watching his or her siblings grow up more quickly; sometimes the youngest, getting more developmentally remote from siblings each year; sometimes there’s more than one child with a disability, or more than one disability. . . . And sometimes I think the only advice that’s equally applicable to all of us is the advice that we should seek advice.

  But I remember something Jamie taught me in the spring of 1997. It was his last season at First United Methodist day care before he started kindergarten in 1997–98, and the occasion was a classroom game in which the children told their teachers what they wanted to be when they grew up. From every child, except Jamie, the list of occupations bore out the Lily Tomlin joke that if we’d all grown up to be what we said we wanted to be at the age of five, we’d live in a world populated by cowboys, firefighters, and ballerinas. When the class got to Jamie, though, the teachers weren’t even sure that he would understand the question, let alone come up with an intelligible answer. Still, they politely asked him, last among the preschool kids, “And what would you like to be when you grow up, Jamie?”

  Later that day, Janet and I were told that Jamie had answered the question immediately, and with just one word.

  Big.

  To their credit, Jamie’s teachers were duly astonished: not only had he understood the question, he’d come up with an answer that changed everyone else’s understanding of what the question meant. All of a sudden, that stock query, What would like you to be when you grow up?, a question no adult expects a five-year-old to answer seriously, had some real substance to it. For what had Jamie said by saying “Big”? That he wanted to grow up. Perhaps that he wanted to be healthy. Perhaps even that he wanted people to treat him well. In his inevitably idiosyncratic way, Jamie had readjusted his classmates’ and teachers’ understanding of the parameters of the question.

  Our little Jamie is no longer little. He grew up to be big; he also grew up to be gentil et sympathique, diligent, observant, patient, bright, gregarious, conscientious, and responsible. And even at his advanced age, we think he can change how you see the world.

  His Brother’s Keeper

  I will never forget the first thing Nick said about Jamie in public, even though I wasn’t there to hear it. It was the spring of 1992. Janet and baby Jamie had gone to Nick’s kindergarten for lunch one day. It was one of those events in which a kindergarten class decorates their room like a pirate ship and the kids don pirate clothing, talk pirate talk, and serve lunch to visitors. Arrrrhh, me mateys, sure ye know the drill. At one point another mother asked Janet, cradling Jamie in the crook of her elbow, how old her baby was. Janet told her (he was five or six months, thereabouts) and added, matter-of-factly, “He has Down syndrome.”

  “Oh my God,” the other mother exclaimed, too startled to stop herself from expressing her horror aloud.

  Just then, Nick the Pirate Waiter was walking by. Overhearing the woman, Nick replied, nonchalantly, “He’s perfectly all right.”

 
I say that Nick delivered this wonderful line nonchalantly, but then again, I wasn’t there, was I? I am going by Janet’s account. And even if Nick said this in the most deadpan manner possible for a six-year-old, it would still constitute a biting criticism of the woman’s remark.

  Nick certainly thought so two years later, when he read the first draft of the essay that would become the version of “Life as We Know It” that was published in Harper’s magazine in late 1994. At eight, Nick was capable of reading that essay and offering advice about it, and I believed I owed him the opportunity to comment, since he certainly seemed old enough to understand the implications of being represented in his father’s writing.

  As it turned out, he had an exceptionally fine sense of the implications of being represented in his father’s writing. He asked me to take out my account of that exchange. I did; it does not appear in the essay or the book. But first, I asked him why.

  “Because it makes me sound like I think I know it all,” he replied. He elaborated, in words I don’t remember, about the possibility that he might come off as having been rude to an adult.

  I told him that I would respect his wishes, but, I added, “Just for the record, just between you and me, you said exactly the right thing. That was exactly what that woman needed to hear. And I’m very proud of you for saying it.”

  Nick nodded solemnly.

  And now that the statute of limitations has expired on Nick’s scrupulous, eight-year-old’s sense of propriety, I can start my narrative of Nick and Jamie with the story I wanted to tell twenty years ago.

  He’s perfectly all right. In 1992, there were many ways in which Jamie was not perfectly all right: he required substantial care, from the gavage tube to the apnea monitor. For many months, he required supplemental oxygen at night, wearing a nasal cannula around his head and an apnea monitor strapped around his chest. He threw up often. He had very low muscle tone, torticollis, and laryngomalacia. He would not walk or talk until he was two. And he was frighteningly susceptible to colds. But Nick was not, I take it, talking about Jamie’s health. He was talking about Jamie’s being.

  That was basically Nick’s attitude throughout Jamie’s childhood and early teen years: Jamie is perfectly all right. In treating Jamie as perfectly all right, Nick also performed the invaluable service of showing his peers, especially his playmates around the neighborhood, how to incorporate Jamie into games and activities. He modeled inclusion by example without being didactic, and he never had to confront any cruel or clueless behavior on the part of his friends. (Nick confirms this.) He did chafe sometimes, of course, because Jamie was his little brother. “He messed up all my Legos,” Nick complained one morning, and with good reason: Jamie had gotten into the playroom before anyone else had risen and had disarranged, without quite destroying, the various Lego villages, scenarios, and entourages Nick had painstakingly assembled. He did not get at the monorail. Yes, by the mid-1990s Lego had an assembly set that allowed you to build a working monorail, batteries not included, which prompted me to lament that when I was a child, all we had were 2 × 2 Lego pieces and 4 × 2 Lego pieces and could build nothing more complicated than tiny narrow towers and tiny rudimentary trucks. Now there are Lego Taj Mahals and Petronas Towers and Fallingwater sets on a 1:1 scale, it seems. So we had put the monorail on a table where Jamie couldn’t reach it.

  Nick seemed upset not only by the prospect of hours of rebuilding but also—and ultimately more importantly—by the realization that he could not get angry at Jamie himself. “But you have to understand,” I told him, “Jamie didn’t mess up your Lego structures because he’s your little brother with Down syndrome. He messed up your Lego structures because he’s your little brother. I’m afraid to say it kinda goes with the territory.”

  Around that time, Nick also admitted being vexed by the fact that Jamie would claim some of Nick’s Matchbox cars as his own, telling me he always let Jamie play with them but just wanted Jamie to understand that they were his, not Jamie’s. I read this as one part annoyance at Jamie’s aggressive (and quite mistaken) claim to Nick’s cars and one part annoyance that Jamie didn’t understand or acknowledge Nick’s generosity. But I laughed anyway and then quickly explained to a suddenly more-vexed Nick that I was not laughing at him: “There is a story,” I told him, “of a soldier in Vietnam escorting President Johnson across an airfield, and telling him, ‘That’s your helicopter, Mr. President,’ and LBJ replying, ‘Son, they’re all my helicopters.’ When Jamie gets possessive, you can just say that—‘Son, they’re all my cars.’”

  “Jamie won’t get that joke, Dad,” Nick said with a sidelong look.

  “No, he won’t,” I said. “But you will.”

  Nick never behaved as if being Jamie’s sibling was a hardship or a disappointment. Nor did he tout the fact that he had a sibling with a disability, in the sense that he did not see himself, or carry himself, as especially noble or virtuous. He simply—though there is nothing simple about it—met Jamie where he was, and was full of love and encouragement.

  There is no question that Jamie’s arrival required that Janet and I spend less time and attention on Nick. But as with the battles over Matchboxes and Legos, that would happen with any little brother. To his eternal credit, Nick adapted to the arrival of a sibling far more graciously than I did when my sister Jean was born. By 1965 I had had my house, and my parents and great aunt, to myself for three and a half years, and when Jeannie joined us I decided it would be a Fun Thing to play games like “hide the baby’s pacifier.” By contrast, Nick was five and a half when Jamie was born and had gotten tired of being the only child. Fortunately, caring for Jamie—after that first harrowing year—did not prevent us from taking Nick to soccer (he named his team the Werewolves, to the horror of some other parents but to the delight of their kids) and tae kwon do (in which he eventually earned a black belt). Because these were local sports, not games in organized leagues that involved travel, I was able to attend most of Nick’s soccer games and tae kwon do practices, and to videotape far too many of them.

  In 1994 my parents were visiting Champaign, Illinois, where we lived at the time, and as we drove to one of Nick’s tae kwon do tests, my father decided to chastise me for letting Nick take these classes. “It’s too violent,” he said, knowing precisely nothing about a martial art that involved a great deal of skilled movement, light sparring, and the occasional breaking of a board.

  “Too violent!” I laughed, grateful that I did not have anything liquid in my mouth at the time. “This from the guy who took up boxing and put his son into hockey.”

  As my father muttered something illogical or incoherent, I decided to pay back a long-overdue debt. “I’ve been thinking that when I ferry Nick around town to these things, I’m usually driving maybe eight or ten minutes each way, whereas you drove me all over New York and Long Island and New England for four years. Coney Island, Staten Island, the Bronx, 4 a.m., rush hour, it didn’t matter; you took me to hundreds of practices and games and tournaments. So, thank you.”

  “Don’t forget,” he replied, “I also picked you up every day after school to take you to public sessions at Skateland in New Hyde Park.”

  “OK,” I parried, “that’s enough thanks for now.”

  But just as Nick was doing so well treating Jamie as he would any little brother, I was trying to treat Nick like any other kid. I didn’t think we—or he—needed to compensate for Jamie, and I felt guilty enough as it was that Nick had two busy parents on the tenure track. I used to joke that you could pick out the children of academic couples by the way they (the children) had learned, by the age of six, to eat hors d’oeuvres on napkins at receptions while also holding a plastic tumbler of ginger ale and chatting about their work. But the joke was only funny because it was true. And I know there were times, partly because of Jamie and partly because of academe, when we had less time for Nick than Nick would have liked.

  On the other hand, Nick got all kinds of gratification from the fact
that Jamie clearly believed his big brother was the coolest person on the planet. The best way to motivate Jamie to acquire a skill or learn a behavior, without question, was to tell him that if he acquired said skill or learned said behavior, he would be like Nick. The first experiment in this vein involved a bunk bed. In order to persuade Jamie—who was, and still is, very wary of conditions in which he might fall or lose his balance—to abandon the crib for a big boy’s bed at the age of two and a half, we assured him that if he slept in a bunk bed with Nick he would be like Nick. The initial results of the experiment were discouraging: Jamie, who was then a fitful sleeper, rolled right out of the bottom bed and onto the floor the first two nights. We responded by placing a second mattress on the floor (at first he rolled off and kept sleeping) and then a small barrier to the side of the lower bunk. Jamie learned how to stay in a bed for an entire night.

  Soon after, something interesting happened: One day I came into the boys’ room and saw four-year-old Jamie in the top bunk. I was visibly startled; I had not thought Jamie capable of climbing the ladder, which was metal and a straight vertical, far more forbidding than the slanted wooden models with stairs. Jamie was delighted that I was startled. He knew he had done something surprising—a major accomplishment, given his physical challenges at the time and his fear of falling or losing his balance.

  “Jamie!” I exclaimed, mock-alarmed. “You cannot climb up into Nick’s bed!”