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WHEN JACOB WAS very small, maybe six months old or so, Liesl came down with pneumonia. Like most healthy people, she was a terrible sick person: grouchy and petulant and, mostly, stunned by the unfamiliar place in which she now found herself. “I don’t get sick,” she kept saying, as if some mistake had been made, as if what had been given her had been meant for someone else.
Because Jacob was a sickly baby—not in any dramatic way, but he had already had two colds in his short life, and even before I knew what his smile looked like, I knew what his cough sounded like: a surprisingly mature hack—we decided that it would be better if Liesl spent the next few days at Sally’s to rest and get better, and I stayed at home with Jacob.
I thought myself basically competent with my son, but over the course of the weekend, I must have called my father twenty times to ask him about the various little mysteries that kept presenting themselves, or to confirm with him what I knew I knew but which, in my fluster, I had forgotten: He was making strange noises that sounded like hiccups but were too irregular to actually be hiccups—what were they? His stool was a little runny—was that a sign of anything? He liked to sleep on his stomach, but Liesl said that he should be on his back, and yet I had always heard that he’d be perfectly fine on his stomach—would he be? Of course, I could’ve looked all of this up, but I wanted definitive answers, and I wanted to hear them from my father, who had not just the right answers but the right way of delivering them. It comforted me to hear his voice. “Don’t worry,” he said at the end of every call. “You’re doing just fine. You know how to do this.” He made me believe I did.
After Jacob got sick, I called my father less: I couldn’t bear to talk to him. The questions I now had for him—how would I get through this?; what would I do, afterward?; how could I watch my child die?—were ones I couldn’t even bring myself to ask, and ones I knew would make him cry to try to answer.
He had just turned four when we noticed that something was wrong. Every morning, Liesl would take him to nursery school, and every afternoon, after my last class, I would pick him up. He had a serious face, and so people thought that he was a more somber kid than he really was: at home, though, he ran around, up and down the staircase, and I ran after him, and when I was lying on the couch reading, he would come flopping down on top of me. Liesl too became playful around him, and sometimes the two of them would run through the house, shrieking and squealing, and it was my favorite noise, my favorite kind of clatter.
It was October when he began getting tired. I picked him up one day, and all of the other children, all of his friends, were in a jumble, talking and jumping, and then I looked for my son and saw him in a far corner of the room, curled on his mat, sleeping. One of the teachers was sitting near him, and when she saw me, she waved me over. “I think he might be coming down with something,” she said. “He’s been a little listless for the past day or so, and he was so tired after lunch that we just let him sleep.” We loved this school: other schools made the kids try to read, or have lessons, but this school, which was favored by the university’s professors, was what I thought school should be for a four-year-old—all they seemed to do was listen to people reading them books, and make various crafts, and go on field trips to the zoo.
I had to carry him out to the car, but when we got home, he woke and was fine, and ate the snack I made him, and listened to me read to him before we built the day’s centerpiece together. For his birthday, Sally had gotten him a set of beautiful wooden blocks that were carved into geode-like shapes and could be stacked very high and into all sorts of interesting forms; every day we built a new construction in the center of the table, and when Liesl got home, Jacob would explain to her what we’d been building—a dinosaur, a spaceman’s tower—and Liesl would take a picture of it.
That night I told Liesl what Jacob’s teacher had said, and the next day, Liesl took him to the doctor, who said he seemed perfectly normal, that nothing seemed out of the ordinary. Still, we watched him over the next few days: Was he more energetic or less? Was he sleeping longer than usual, eating less than usual? We didn’t know. But we were frightened: there is nothing more terrifying than a listless child. The very word seems, now, a euphemism for a terrible fate.
And then, suddenly, things began to accelerate. We went to my parents’ over Thanksgiving and were having dinner when Jacob began seizing. One moment he was present, and the next he was rigid, his body becoming a plank, sliding off the chair and beneath the table, his eyeballs rolling upward, his throat making a strange, hollow clicking noise. It lasted only ten seconds or so, but it was awful, so awful I can still hear that horrible clicking noise, still see the horrible stillness of his head, his legs marching back and forth in the air.
My father ran and called a friend of his at New York Presbyterian and we rushed there, and Jacob was admitted, and the four of us stayed in his room overnight—my father and Adele lying on their coats on the floor, Liesl and I sitting on either side of the bed, unable to look at each other.
Once he had stabilized, we went home, where Liesl had called Jacob’s pediatrician, another med-school classmate of hers, to make appointments with the best neurologist, the best geneticist, the best immunologist—we didn’t know what it was, but whatever it was, she wanted to make sure Jacob had the best. And then began the months of going from one doctor to the next, of having Jacob’s blood drawn and brain scanned and reflexes tested and eyes peered into and hearing examined. The whole process was so invasive, so frustrating—I had never known there were so many ways to say “I don’t know” until I met these doctors—and at times I would think of how difficult, how impossible it must be for parents who didn’t have the connections we did, who didn’t have Liesl’s scientific literacy and knowledge. But that literacy didn’t make it easier to see Jacob cry when he was pricked with needles, so many times that one vein, the one in his left arm, began to collapse, and all those connections didn’t prevent him from getting sicker and sicker, from seizing more and more, and he would shake and froth, and emit a growl, something primal and frightening and far too low-pitched for a four-year-old, as his head knocked from side to side and his hands gnarled themselves.
By the time we had our diagnosis—an extremely rare neurodegenerative disease called Nishihara syndrome, one so rare that it wasn’t even included on batteries of genetic tests—he was almost blind. That was February. By June, when he turned five, he rarely spoke. By August, we didn’t think he could hear any longer.
He seized more and more. We tried one drug after the next; we tried them in combinations. Liesl had a friend who was a neurologist who told us about a new drug that hadn’t been approved in the States yet but was available in Canada; that Friday, Liesl and Sally drove up to Montreal and back, all in twelve hours. For a while the drug worked, although it gave him a terrible rash, and whenever we touched his skin he would open his mouth and scream, although no sound came out, and tears would run out of his eyes. “I’m sorry, buddy,” I would plead with him, even though I knew he couldn’t hear me, “I’m sorry, I’m sorry.”
I could barely concentrate at work. I was only teaching part-time that year; it was my second year at the university, my third semester. I would walk through campus and overhear conversations—someone talking about splitting up with her boyfriend, someone talking about a bad grade he got on a test, someone talking about his sprained ankle—and would feel rage. You stupid, petty, selfish, self-absorbed people, I wanted to say. You hateful people, I hate you. Your problems aren’t problems. My son is dying. At times my loathing was so profound I would get sick. Laurence was teaching at the university then as well, and he would pick up my classes when I had to take Jacob to the hospital. We had a home health-care worker, but we took him to every appointment so we could keep track of how fast he was leaving us. In September, his doctor looked at us after he had examined him. “Not long now,” he said, and he was very gentle, and that was the worst part.