You know how doctors and nurses ask you to report your pain on a scale of 1 to 10? Well, as child-care stories go, this is maybe a 2. We are talking about tonsils and teeth, not about cancer or seizure disorders. Though Jamie endured serious pain for days and lost eight pounds in one week—one-eighth his body weight at the time—he recovered fully and rapidly. But what made this tonsillectomy (and its aftermath) so disturbing was precisely the realization that Jamie could not have given his “informed consent” to the surgery in any meaningful sense of the term. I am aware that the standard of informed consent is legally irrelevant here: Jamie was a child. And because the law renders it moot as to whether children under eighteen can give their informed consent to their medical treatment, the question of what kinds of medical treatment parents and guardians can choose for—or withhold from—their children is profoundly difficult. I believe the state should not have the power to coerce prospective parents into having children they do not want, but that the state should have the power to compel parents to vaccinate their children against common childhood diseases. (That is because I believe a child is a very different thing from a fetus, an embryo, or a zygote.) And, yet, should parents have the right to forgo life-saving procedures that would save their children but would conflict with their religious beliefs? Or the right to provide their deaf children with cochlear implants? (My answers are an uneasy no and an uneasy yes, and I know others vehemently disagree.) My ethical dilemma about Jamie’s medical treatment was far simpler: I agonized that he didn’t understand what was going to happen to him, he didn’t understand what was happening to him, and he didn’t understand how long it was going to keep happening. Although I told him that his throat would get better and would not hurt any more, I know there must have been times when he wondered if this was how he was going to feel for the rest of his life. At one point I imagined, watching him tongue the space where his teeth had been, that he had begun to fear that he’d lose a couple more teeth every time he fell asleep.
Today Jamie knows this story well, and he now understands what the hell all the fuss was about. But only gradually did we find out what Jamie thought about it. That summer, after we moved, Janet tried to prep him gently for the next phase—namely, braces—and we started shopping around State College for dentists who have experience dealing with kids with special needs. But Janet’s attempts to explain things to Jamie, which included the reassuring information that Nick had had braces too, had a perverse effect: she told him that he would probably get braces when he was ten, and so, when he turned ten, on September 16, 2001, he insisted that he was “still nine” or “almost ten.” After a few days of this mystifying behavior, I finally got him to tell me why he wasn’t ten: “I will be eleven and have no bracelet,” he replied. Apparently he had come to the conclusion, literal-minded as he is, that he would be fitted with braces from September 16, 2001, to September 15, 2002, and this was his way of letting us know he didn’t care for the idea. Well, as it happened, he didn’t get braces when he was ten. His adult teeth came in just fine as a result of the multiple tooth extraction, but we still weren’t sure just how aggressive we wanted to be about crooked teeth. Our options ranged from the extreme—a procedure so complex and intervention-laden that I referred to it as skull replacement surgery—to the laissez-faire—let’s just chill and see if any problems develop down the road. After a bunch of consultations, including consultations with Jamie, we agreed that braces would be sufficient, and that oral-maxillofacial surgery would be going way overboard.
We asked ourselves whether we were pursuing even this mild course of action for aesthetic reasons. Was it really just a matter of crooked teeth? As you might imagine, there is a spirited debate about such matters in the bioethics community, one version of which can be found in the 2006 Hastings Center report Surgically Shaping Children: Technology, Ethics and the Pursuit of Normality. Hard as it is for us to believe, there are people out there who actually approve of elective surgery for their children with Down syndrome, hoping that this will render their facial features more like those of their nondisabled peers. In 2002, Janet wrote a brilliant paper about this; she has never published it, though it would have made a substantial contribution to disability studies. In the course of her research, she discovered a rich and disturbing phenomenon wherein parents feared that their children would look less like them (that is, the parents) than like other children with the same condition, as if their real family, and their family resemblances, were their fellow humans with Down syndrome. And she argued that while some surgeries might be medically necessary (for cleft lip and palate, for instance), surgical interventions for children with Down syndrome constituted a pernicious form of “normalization” that is best resisted. That was one of the reasons why we decided against more aggressive measures that involved putting a spanner in Jamie’s mouth to widen his palate. We didn’t want to reshape him. We simply wanted to minimize his chances of having oral health problems as a teenager.
Much later, we had cause to reflect not only on these decisions but on Nick’s dental history as well. By the time Nick graduated from college in 2008, he had developed a strangely prominent jaw, thanks to the fact that the upper half of his mouth had not grown out properly. The oral-maxillofacial surgeon we consulted suggested that this was the result of excessively aggressive orthodontics when Nick was a child, which would mean that we wound up subjecting Nick to surgery at twenty-one—and six weeks of being unable to talk or eat solid food—thanks to the fact that we initially subjected him to braces as a tween. Nick, of course, gave his informed consent to this; he was not entirely “subjected” to it. We learned of other parents and children in the same position, regretting what they had thought was their diligence in seeing to their children’s dental health. Nick endured those six weeks patiently, carrying around a dry-erase board and writing us many notes, and he even managed to smile when Jamie told a waiter in a local restaurant, “This is my brother, Nick. He won’t eat and he won’t talk.”
Jamie got his braces about three years after his tonsillectomy. At first they were painful and weird, and his speech was unintelligible for a few days. He needed wax to soften the feeling of having a bunch of metal in his mouth, but he got used to the metal and ditched the wax, and he got used to using one of those tiny between-the-braces brushes. Given that his initial resistance was so strong as to make him abjure his tenth birthday, he was really quite mature about the whole thing, and we praised him heartily and often for being such a great kid about his braces. And I promised him that when they finally came off, he would be allowed to eat . . . a Slim Jim! Every so often Janet and I would take him to the orthodontist to have the braces adjusted, repaired, tweaked, refined, augmented, or replaced, so Jamie understood that this was a process rather than a one-time thing. There was one almost-scary moment when one of his wires popped loose from a molar bracket, so that he had a fine metal wire sticking out on the right side of his mouth. “Michael,” he said, calling me into the TV room, “I need help.” I asked him to hold very, very still while I cut the wire with, well, you know, wire cutters—something I never thought I would be putting anywhere near my child’s mouth. I barely managed to keep the cut wire from falling into his throat. There was also one almost-comic moment when I drove him to school after a braces appointment only to realize that I’d left his backpack at the orthodontist’s. “What’s the matter, Michael?” he asked when he saw me slap my forehead. “Oh, sweetie, we have to go all the way back to the doctor’s and get your bag,” I said. “I’m just doing everything wrong today. I feel like Neville Longbottom,” invoking the perpetually forgetful Harry Potter character. Jamie put his hand on my shoulder and consoled me: “You are not like Neville Longbottom, Michael. It’s OK.”
Jamie’s orthodontist visits varied widely in intensity and duration. Sometimes he would zip in and out after a routine checkup determined that everything was fine; sometimes he would need new brackets, new wires, or other procedures that involved keeping his mou
th open for long periods (and keeping very still) while people poked at his teeth with metal implements and shone the heating lamp on them to dry the glue. Jamie quickly learned to ask for the zip in–zip out kind of visit upon arriving at the doctor’s office. “We will just talk and have no tools,” he would propose to the lab assistants, who would usually reply by telling him that maybe they would have to use just one or two tools. Janet and I traded off taking Jamie to each appointment, but if one of us endured a thrash visit, then the other one usually had to go to the next two, so as to spread the parental dental-care burden around as evenly as possible.
But at long last Gehenna froze over, pigs learned to fly, and the braces came off eighteen months after they went on . . . whereupon Jamie learned that he would have to wear retainers for another six months or more.
Retainers! Jamie complained strenuously, feeling he’d been betrayed and hornswoggled yet again. We assured him that it was only a short-term thing, and we reminded him how terrific he had been about his braces, and we renewed the promise of Slim Jims Yet to Come. And so Jamie went back to the orthodontist for the forty-ninth time (or thereabouts) and had an impression of his teeth made. He hated that. Who wouldn’t? Who gets up in the morning and says, “You know what, I hope I can lie back in an orthodontist’s chair and have my mouth filled with pink goo today”?
Janet and I felt sheepish that we hadn’t told Jamie what wearing his retainers would entail. Actually, we didn’t know ourselves; Janet thought he’d need retainers only at night, and I was completely ignorant of everything, including when to take them out and when to leave them in. I suspect you know where this part of the story is going, because almost every teenager who has ever had retainers has lost them at some point. Here it goes.
Part the First. One day I picked Jamie up from the Y and discovered that his upper retainer was missing. He said maybe it slipped out when he was swimming. “While you were swimming?” I asked. “I don’t know,” he shrugged. “I’m not sure.” Oy. Would it be at the bottom of the pool, perhaps? So one of the Y staff and I searched the entire building, looking for a little black plastic thing with a small metal strip in the front. Why were Jamie’s retainers black, you ask? Because he’d rejected all the more colorful designs as “too weird,” that’s why. He hadn’t wanted colored brackets on his braces, either. He’s just a basic-black kinda guy. Finally one of the YMCA staff remembered that Jamie had taken out the retainer during lunch and put it in a napkin. So I started to comb through the lunchroom garbage can—the nice, full garbage can—musing as I did so on the fact that his retainer was very like the color of the Hefty bag . . . when I found it! I took the opportunity to teach Jamie the phrase “needle in a haystack,” because he used to have trouble with idiomatic expressions. He thought that was very amusing. But I also took the opportunity to tell him, sternly, never to lose his retainers again or he’d have to go back to the orthodontist for another round of pink goo. So he learned his lesson and never lost his retainers again. His parents, however, were not so fortunate.
Part the Second. A few months later, Jamie and I went out for pizza and a movie (pizza and popcorn: crucial five-servings-a-day components of the USDA food pyramid). I told him he could leave his retainers out for a while, and I’d carry them for him. Why did I do such a stupid thing? Because I was being smart. I thought ahead and reasoned that it would be a bad idea for him to be popping out his black retainers in a dark movie theater. So at the pizza place I wrapped the retainers in a napkin . . . and by the end of our meal, the table was covered with napkins. This was some seriously unctuous pizza we were eating. I tossed the whole mess into the garbage. And even though Jamie was, by this point, vigilant about putting his retainers back in, he didn’t say anything as we left the mall, precisely because I’d told him not to worry about them until after the movie.
I realized what I’d done when we got to the octoplex parking lot and found that I hadn’t, after all, put the all-important napkin in my pocket. Panicking, I told Jamie we were driving back to the mall and that I wanted him to stay in the car while I ran to the pizza joint, because I’d lost his retainers and it was all my fault. “I’ll just look through the garbage again,” I assured him. “I won’t be long.” “Like a needle in a haystack,” Jamie replied.
But this time the Force was not with me. I told the guy at the pizza joint that I’d lost my son’s retainers by throwing them in the trash, and he hoisted the garbage bag into the back of the kitchen and sifted through it with me, but, alas, his extraordinary helpfulness was offset by the fact that he didn’t speak much English and seemed not to have a very clear idea of what he was looking for. I tried to insist that I could go through the mess by myself, but to no avail, and he kept tossing things from one garbage bag into another while I tried to unwrap napkin after napkin while sifting through paper plates, pizza crusts, half-eaten calzones, and discarded salads. “You don’t understand,” I wanted to say. “If I don’t find these damn things, my kid has to do the pink goo in the mouth thing again, through no fault of his own, just after I threatened him with having to do the pink goo in the mouth thing should he ever lose his retainers.” And I thought again of how he had had to return to the hospital after his tonsillectomy-and-tooth-extraction even though he had been a good kid and listened to his mother about drinking plenty of Gatorade.
We reached the end of the garbage. I wanted to give a second look to some of the garbage the pizza guy had ripped his way through, but he insisted, “No, is not here,” so I gave up, paid him five dollars for his time, and sprinted back to the car, near tears. “Jamie, I’m so sorry,” I said when I climbed into the driver’s seat. “I couldn’t find them. I looked and looked, but I couldn’t find them, and it’s all my fault.”
Sweetly, Jamie tried to console me, just as he had when I’d forgotten his backpack. “It’s OK, Michael. It’s not your fault.”
“Oh, yes, it is my fault,” I said. “I threw your retainers in the garbage, and now we have to get new ones.” Jamie nodded, but then that little light bulb went on and he asked about the goo. “Yes, we have to do the goo again,” I replied, “and I’m so, so sorry. . . . You didn’t do anything wrong. . . .” Well, this was just unbearable. Jamie had become too mature, at fourteen, for any squalling or fussing or acting out, but he was stunned. Betrayed yet again! Would the Dental Drama never end?
“Look,” I said. “I’ll tell you what. I’ll call the doctor, and we’ll ask for new retainers, and after you have the goo, I’ll buy you that Slim Jim we talked about. Is that a deal?” It was a deal. Still, I kept apologizing all through the rest of the day (and of course there was a fresh round of apologies to be made when I told Janet what happened), to the point at which Jamie finally said, “It’s not your fault, Michael. It’s my fault.”
“What?” I exclaimed. “It’s not your fault at all! You did everything I asked, and I threw your retainers in the dang garbage. It’s completely my fault.”
“No, it’s my fault,” he insisted, and this went on for a while.
Now, I didn’t believe he really understood the concept of “fault” at stake here. In those days, he and Janet and I had an odd little routine in which I would say, “I think this is Lucy’s fault,” he would laugh, turn to Janet, and say, “Janet, say it,” whereupon Janet would say, “Michael, you can’t blame Lucy; she’s just an animal.” Jamie loved this routine and often embellished it by telling me that I couldn’t blame Lucy because she was, as he put it, “an animal companion” or, sometimes, “an animal companionship.” I wasn’t entirely sure that Jamie got the joke behind this routine—which is to say I wasn’t sure he understood why you can’t “blame” an animal, which is also to say I wasn’t sure he understood that the concept of blame relies on a whole host of other concepts having to do with probability, risk, responsibility, consequences, right and wrong. But as it turned out, Jamie did indeed understand what he was saying when he claimed that it was his fault the retainers got tossed in the garbage. He was
saying, as he has since explained to me, that he should have kept better track of his retainers. Which is true, but the fact remains that I didn’t bring along the bright-orange retainer case to put them in while he took them out, and I put them in a napkin and tossed them in the garbage. So really, in the end, it’s completely my fault.
We got new retainers. Jamie hated the goo, of course, but he did much better with it the second time, and I promised promised promised we wouldn’t be doing it again. And then I bought him a good, chewy Slim Jim. “How is that stuff?” I asked skeptically as we drove away from the convenience store, the one that stocks dozens of varieties of Slim Jims and beef jerky, right next to the big display of dozens of varieties of chewing tobacco. “Really great,” Jamie replied. I told him he couldn’t get black retainers again, just in case they ever wound up in the garbage. But he once again rejected all the day-glo colors as too weird and insisted on black. So we compromised. We got camouflage-colored retainers. At least they had patches of green, brown, and yellow in them.
I learned that our family dental plan only covered one set of retainers, so the final tally for that exceptionally expensive day was this:
Chicken Little matinee: $12
Popcorn and soda: $10
Tip for the helpful pizza guy: $5
Pizza and new retainers: $400
Jamie: priceless
Part the Third. Yes, despite all my promises to Jamie in Part the Second, there is a Part the Third. How shall I put this? Ah, yes, I know: #@$%&*@%$#@&! In the summer of 2006 Janet taught one of her four-week courses in Ireland. Jamie and I flew to Dublin to join her for the final two or three days, and then we all flew to France for a week’s vacation. To catch our flight out of Dublin, we had to get up at 3 a.m. Somehow, in our stupor, we packed everything except Jamie’s retainers.
Life as Jamie Knows It Page 7