“Yes, I can!” he chirped, collapsing into helpless laughter.
I wondered, at the time, if Jamie had any inkling of the wordplay involved in his reply. I am not sure whether he understood that my “cannot” was prescriptive, and that his declaration of fact—oh, but I can—was a sly evasion of the real meaning of my exclamation, do not climb up into Nick’s bed. But it was clear that Jamie was thrilled with his achievement. And with my response, which quickly became part of one of Jamie’s favorite routines. He would climb into Nick’s bunk, and summon me from my study next door. I would exclaim, mock-alarmed, “Jamie! You cannot climb up into Nick’s bed!” “Yes, I can,” he would chirp, laughing gleefully as I ran around the room in mock-flummoxation at this state of affairs, crying, “Yes, you can?” and stopping only when I had hit the pull cord on the ceiling fan. (Don’t ask. For some reason Jamie found this hilarious.)
And all this because Jamie wanted to be like Nick. Though I should add that Jamie had no idea how to get back down the ladder.
Because Nick believed that having a sibling with Down syndrome was no big deal, he was great as a big brother—and useless, I feared, as a mentor or guide for other siblings who were struggling with disability-and-family issues. I asked Nick many times if he would sit in on sessions with siblings, compare notes and stories with other siblings, share experiences and maybe even coping tips—to no avail.
Finally, when Nick was fourteen, I asked him to do a favor for a friend, a special-education professor. The class was about disability and family dynamics, and the professor, knowing Nick from a distance, believed very strongly that Nick would be exceptionally helpful for students training to become counselors and aides. With only minimal hesitation, Nick agreed.
I accompanied him to the class. He was paired with another kid with a disabled sibling, a girl about his age, and at one point, his counterpart told the class that her family was always pressuring her to do well in school because she was the only one who would be going to college.
Nick smiled ruefully and said, “Yeah, my family is the same way.”
I was sitting at the back of the room, and I believe I did a very good job of stifling my complete astonishment and dismay. I also thought that jumping up to contradict him would be counterproductive on two fronts. After all, I had insisted that he get involved with the sibling thing, so I certainly couldn’t edit or censor him, thereby effectively telling him, Talk about your feelings and experiences with Jamie, but only in ways that I approve of. And I thought any protest on my part would look, to the class, as if I really were the kind of parent who would pressure his kid to compensate intellectually for his disabled little brother.
So I sat on my hands, bit my cheeks, and waited. When the class was over and I was driving Nick home, I told him that he had done a great job and that his remarks about his life with Jamie would certainly be useful in the future for everyone in the class, the professor included. I also told him how surprised I was to hear him say that he felt parental pressure to do well in school because of Jamie, and that I hoped he knew that I never, ever expected him to try to compensate for having a brother with a developmental disability.
“It’s not you,” Nick replied. “It’s Mom.”
“Really?” I squawked, incredulous. “Are you kidding me? When did Mom ever say anything like that to you?”
It turned out that Janet had remarked on one of his subpar seventh-grade report cards, where “subpar” meant “not all A’s for a change.” And what Janet had actually said—as I recalled to Nick—was that she worried that he was coasting through a school that wasn’t challenging him. And it wasn’t: he himself complained on a weekly basis that his homework amounted to coloring and connect-the-dots, and I gently reminded him of that. The point was that Janet’s comment had nothing to do with Jamie. Nevertheless, Nick somehow heard it as having something to do with Jamie, and I have never forgotten the lesson.
Actually, there was more than one lesson. The most obvious one, the one I understood immediately, was that Nick might be more affected by Jamie than he was ordinarily willing to say, and that he might well be feeling the pressure of being the only child who would go to college (with all that implies—moving out of our home, graduating, beginning a career). Another, which unfolded more slowly, was that adolescent Nick would have a different relationship with Jamie than would pre-teen Nick, and that their relationship would change and evolve as they made their separate ways into adulthood. Still another, which informs the way I think about how Nick will care for Jamie after Janet and I are gone (and the way I talk to Nick about this, as I began to do when Nick was twenty), is that Jamie’s influence on adult Nick is indelible and will make itself felt in ways I can neither enumerate nor anticipate. I think this is true for many people with siblings with intellectual disabilities: as one such sibling has told me, you grow up thinking that intellectual disability is just an ordinary part of life—but you also find out very quickly that you understand things other people don’t understand. And sometimes that experience sets you on your life path, and the effects are apparent in your life’s work. I often think of Jill Bolte Taylor, author of the extraordinary account of her nearly fatal stroke, My Stroke of Insight, who became fascinated with how brains work because she wanted to understand her brother’s schizophrenia. Timothy Shriver’s book Fully Alive suggests that his aunt Rosemary Kennedy was always at the heart of her siblings’ lives, both before and after the Kennedy family acknowledged her publicly. About his mother, Eunice, who founded Special Olympics, he writes, “She was determined to prove to others a lesson Rosemary had proved to her years before, a lesson that remains shocking in its simplicity and shocking in its continuing and persistent disregard: people with intellectual disabilities are human beings, deserving of love, opportunity, and acceptance just as they are.”
Not long before we moved from the University of Illinois to Penn State, in 2001, Nick had introduced his first form of mock-competition with Jamie, which, at the time, was simply a clever way of getting Jamie to stop playing in the playroom and come upstairs for dinner. Janet or I would summon the boys, and Nick would say to Jamie, “I’ll be first—you’ll be last.” This would invariably elicit a “No, Nick! You be last!” from Jamie, and the two of them would scamper up the gray-carpeted stairs of our split-level house. Occasionally Jamie would object to something Nick did, as when Nick interrupted his play by intercepting the rubber ball he was throwing off a wall, exclaiming, “Nick! Don’t have a Christmas hand!” (This cracked Nick up, and we never did learn what Jamie meant by it.) But for the most part, they were heading into adolescence without any major conflicts or rivalries.
Moving to State College was hard on both of them, particularly on fifteen-year-old Nick, who went from a Derek Jeter-esque farewell tour among his many high school friends to a lonely room in a house in a town in which he knew no one. I was quite sure that Nick would make friends quickly and easily. I was right about that much. But it was a difficult transition nevertheless. We arrived on July 1, 2001, with two months of summer stretching before us. Nick had no readily available way to make friends, no school or summer program to attend, whereas Jamie had a summer day camp I had arranged at Park Forest Middle School. That camp turned out to be a mistake on my part: I should have enrolled Jamie in the YMCA camp, which I did every year thereafter until he aged out (the age limit is twelve, but the Y staff very kindly allowed Jamie to enroll until he was sixteen). The camp for which I had signed up had no staff with experience working with children with disabilities, and Jamie sometimes required individual attention that their staff could not provide. But Nick saved the summer for all of us, volunteering to accompany Jamie to camp and keep watch over him. The camp agreed to this arrangement, and Janet and I, vastly relieved, threw ourselves back into the sixteen-hour-a-day tasks of moving in and redecorating.
Over the next three years our new lives settled into place. Nick made many friends and developed a well-deserved reputation for calligraphy a
nd design skills; Jamie adapted to his new school, Corl Street, and it adapted to him; Janet and I learned the ropes at Penn State. Nick invented a series of increasingly elaborate nicknames for his little brother. Starting from Jamsenbrunner (pronounced yomsenbrunner, and taken from the former NHL star Jamie Langenbrunner), the names quickly metamorphosed to Jatemint (pronouncing the J), then to Mint, Minthoven, and Minté Bleu. This delighted Minté Bleu no end. “Call my names,” Jamie would say, and Nick would oblige. Jamie had afterschool and summer programs at the Y, and three very happy birthday parties, to which many of his classmates came. Gradually, our house became Teen Lounge, and I used to say (with good reason) that I never knew how many people would be in it when I woke up each morning. Nick had a charming way of befriending people undergoing difficult domestic dramas, one result of which was that some of his friends preferred hanging out chez nous. There was no alcohol, no drugs, no funny business. The worst we endured, as parents, was a 3 a.m. doorbell for pizza delivery (Nick swore to us that he had told the place not to let the driver ring the bell) and a bafflingly large number of soda cans covering nearly every horizontal surface, all of them not-quite-empty. And then it came time for Nick to leave for college.
We packed up, set a course for St. Louis, and joined the throngs of families jostling for hampers and backpacks and storage cubes at the Target in Clayton, Missouri. We booked a lousy hotel. We went to Orientation. Jamie met Nick’s roommates—he’d been assigned to a tiny room along with two other unfortunates—and made much of the paper pineapple dangling from one of Nick’s roommate’s beds. Jamie climbed up into Nick’s bed, because he could. After a few days of this, it was finally time to leave. Janet burst into tears in the parking lot. Jamie marveled at all the license plates from all the different states.
We came back to a very empty house—and, more important, to a house that stayed empty, day after day after day. Teen Lounge had closed for the season. And Jamie gradually realized that the people he’d known and welcomed for the past three years had really been Nick’s friends all along. They were unfailingly kind to Jamie; they liked him and engaged him eagerly. But they really were Nick’s friends, some of whom were off to college themselves, and as for Jamie’s friends . . . well, as he moved to middle school he stayed with much of his Corl Street cohort. But with one exception, those kids didn’t invite him over after school or drop by to hang out. And that one exceptional person’s family dropped us decisively a few weeks later, the day they saw a Kerry/Edwards sign in our yard.
And so began the most difficult transition of Jamie’s life. It is hard to say how much he missed his big brother, because he never said a word to suggest that he missed his big brother. But it was obvious that Jamie was bewildered. He understood what it meant that Nick would be going to college, and he was very proud of Nick. But at the same time, he didn’t quite seem to understand why it was that Nick, the brother and companion he’d known all his life, had to be away. Every. Single. Day.
We didn’t get a sense of the depth of Jamie’s sadness until the following spring. At some point that year, I read a story about a young man with Down syndrome living in the South. It was a follow-up story to something the paper had run a few years earlier; the first profile was a feel-good piece about how this winsome young man with intellectual disabilities was graduating from high school, had plenty of friendly classmates, and was a heartwarming example of the benefits of inclusion. The second profile, which I admired the paper for running, was a considerably more somber account of how isolated and sad this young man had become in the couple of years since graduation. Shortly thereafter, I told Jamie—without mentioning the article—that if he was ever sad or worried or confused, he could always talk to me about how he was feeling. He shook me off: he was not sad! “OK,” I replied, content to let Jamie know that he would always be allowed to acknowledge sadness—even though it was something he had never done in his life.
I know the exact date on which Jamie first spoke of his sadness. It was April 22, 2005, Nick’s nineteenth birthday, his first birthday away from home. Janet, Jamie, and I went shopping that evening for groceries and things, and we were very anxious to get home by seven because Nick would be calling. So we bundled up our loaves of bread and our seafood salad and our cereal and our trash bags, and we collected all the ingredients for Nick’s care package of finals-week cookies—the Toll House chips and the sugar, the milk and the cookie mix—but we didn’t make it back in time. Nick’s call came while we were still in the supermarket, and Janet picked it up on her cell.
Nick sounded weary but happy. The first year of the architecture program was grueling, but tremendously stimulating. The rumors were true: architecture students did not sleep, and at the end of every semester they worked twenty-eight-hour days. Nick spoke to Jamie with warmth and enthusiasm. He said he couldn’t wait to finish his freshman year and come home. He couldn’t believe he was turning nineteen. Neither could we.
When we got home and unloaded the groceries, it quickly became clear that Jamie was disappointed. Well beyond disappointed: he was crushed. He sat in the back room, cross-legged, with his head in his hands, and only after a few minutes of my worried prodding did it become clear that he’d believed that Nick was coming home for his birthday. More than that: he thought Nick would be home to greet us when we got back from the store, and that that was why we needed to be back by seven.
“Oh, sweetie,” I said. “And that’s why you were so excited about making him cookies?”
“Yes,” Jamie replied, barely audible. “Nick could come home right now.”
“Well, no, he can’t come home right now,” I said, putting my arm around his shoulders. “He is in St. Louis. But he’ll be home in just two weeks, and you can see him then.”
“Nick could come home right now,” Jamie insisted. I began to realize that his sadness must have resonated for months. By now, that loneliness had become unbearable.
In those years I would sometimes measure Jamie’s maturity by gauging how he handled disappointment. Actually, that’s one way I’d measure anyone’s maturity. For example: one day I took him for one of our weekend swims at the gym only to find that the pool was closed for cleaning. Jamie simply did not understand this. It was Saturday; the pool should be open. The pool is always open on Saturday. Maybe the pool is open! Let’s try and see! I let Jamie pull at the locker room door for a few minutes, and I even gave him help when he asked for it, but in the end, I had to say, “Really, Jamie, the pool is closed. Let’s do something else today.” He did not welcome the suggestion, and it took him hours to snap out of his funk. A year later, when we arrived at the same gym only to find that it was closing early, Jamie turned to me and said, “Oh well! Let’s go to the Y.” I praised him effusively for this, and, of course, I took him to the Y.
By adolescence, Jamie had acquired words for emotional states like “disappointed” and “frustrated,” partly by asking about how characters in stories are feeling. But his emotional state on Nick’s birthday went well beyond either.
I reassured Jamie, again, that Nick would be coming home very soon and that Nick would take him out to dinner with all his friends. “I know,” Jamie said. “But I’m still sad.” I nodded. “I understand, Jamie. You know what? I’m sad too. I miss Nick too.”
And then Jamie said something stunning. Dejectedly, he mumbled, “How can I stop being sad?”
“Ah!” I replied. “That’s a very good question. Well, usually, people are sad for a while, and then gradually, the sadness goes away, little by little.”
This didn’t do any good. Jamie waited a few seconds, then said, “But I’m still sad.” I was reminded of the time when he was eleven and had a sudden fever; a few minutes after Janet gave him his Tylenol and antibiotics, he stomped up the stairs, complaining that he was still sick. As I’ll explain in more detail when I get to The Tale of Jamie’s Pneumonia, he eventually had a hospital-induced epiphany that illness doesn’t fade just like that. Now he’d have to h
ave a Nick-induced epiphany in order to learn the same thing about sadness.
So I decided that this might be a good time to pass along something I’d learned about grief: It washes over you and sweeps everything before it, and there’s no resisting it. Eventually it recedes, just like elation or anxiety or anger. But it recedes at its own pace. Buddhists taught me this, perplexing Buddhists with their “this is arising and is known” subject-lessness (which is supposed to wean you from attachment to your own thoughts and feelings, and which I find extremely difficult to inhabit, so identified with my thoughts as I am), and I thought it might be a good idea to try to teach it to Jamie as best I could.
“OK, Jamie,” I said. “I’ll tell you about how sadness comes and goes. Are you ready?” He brightened up and gave me his full attention. “You know how you like to play in the waves at the beach?” Jamie brightened. “Mm!” he mm’d. “And you know how a wave comes and knocks you down and it’s so much fun, and the wave tumbles you up the sand, and then you get up and play in another wave?” By this point Jamie was rubbing his hands together with glee. “Well, sadness is like that, and happiness is like that too. They’re like waves that come and knock you down and tumble you around, and then you get up and they’re all gone.”
Jamie froze. Up to the point at which I’d described playing in the waves, he was thrilled, because playing in the waves is one of his favorite things about being alive. But then I’d taken this weird philosophical “sadness and happiness are like that” turn, and he didn’t know what to think about it. Jamie puzzled for a moment, and then said, darkly, “There will be more waves.”
Shit, I thought. It didn’t take very long for him to figure that out, now, did it. Here I was trying to tell him that sadness, like all things, will pass, but he’d gone right past that lesson to the obvious corollary, namely, after this sadness passes, there will be more sadness yet to come.
Life as Jamie Knows It Page 4
