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.
Laurence came over every Wednesday and Saturday night; Gillian came every Tuesday and Thursday; Sally came every Monday and Sunday; another friend of Liesl’s, Nathan, came every Friday. When they were there, they would cook or clean, and Liesl and I would sit with Jacob and talk to him. He had stopped growing sometime in the last year, and his arms and legs had gone soft from lack of use: they were floppy, boneless even, and you had to make sure that when you held him, you held his limbs close to you, or they would simply dangle off of him and he would look dead. He had stopped opening his eyes at all in early September, although sometimes they would leak fluids: tears, or a clumpy, yellowish mucus. Only his face remained plump, and that was because he was on such massive doses of steroids. One drug or another had left him with an eczematic rash on his cheeks, candied-red and sandpapery, that was always hot and rough to the touch.
My father and Adele moved in with us in mid-September, and I couldn’t look at him. I knew he knew what it was like to see children dying; I knew how much it hurt him that it was my child. I felt as if I had failed: I felt that I was being punished for not wanting Jacob more passionately when he had been given to us. I felt that if I had been less ambivalent about having children, this never would have happened; I felt that I was being reminded of how foolish and stupid I’d been to not recognize what a gift I’d been given, a gift that so many people yearned for and yet I had been willing to send back. I was ashamed—I would never be the father my father was, and I hated that he was here witnessing my failings.
Before Jacob had been born, I had asked my father one night if he had any words of wisdom for me. I had been joking, but he took it seriously, as he took all questions I asked him. “Hmm,” he said. “Well, the hardest thing about being a parent is recalibration. The better you are at it, the better you will be.”
At the time, I had pretty much ignored this advice, but as Jacob got sicker and sicker, I thought of it more and more frequently, and realized how correct he was. We all say we want our kids to be happy, only happy, and healthy, but we don’t want that. We want them to be like we are, or better than we are. We as humans are very unimaginative in that sense. We aren’t equipped for the possibility that they might be worse. But I guess that would be asking too much. It must be an evolutionary stopgap—if we were all so specifically, vividly aware of what might go horribly wrong, we would none of us have children at all.
When we first realized that Jacob was sick, that there was something wrong with him, we both tried very hard to recalibrate, and quickly. We had never said that we wanted him to go to college, for example; we simply assumed he would, and to graduate school as well, because we both had. But that first night we spent in the hospital, after his first seizure, Liesl, who was always a planner, who had a brilliant ability to see five steps, ten steps, ahead, said, “No matter what this is, he can still live a long and healthy life, you know. There are great schools we can send him to. There are places where he can be taught to be independent.” I had snapped at her: I had accused her of writing him off so quickly, so easily. Later, I felt ashamed about this. Later, I admired her: I admired how rapidly, how fluidly, she was adjusting to the fact that the child she thought she would have was not the child she did have. I admired how she knew, well before I did, that the point of a child is not what you hope he will accomplish in your name but the pleasure that he will bring you, whatever form it comes in, even if it is a form that is barely recognizable as pleasure at all—and, more important, the pleasure you will be privileged to bring him. For the rest of Jacob’s life, I lagged one step behind Liesl: I kept dreaming he would get better, that he would return to what he had been; she, however, thought only about the life he could have given the current realities of his situation. Maybe he could go to a special school. Okay, he couldn’t go to school at all, but maybe he could be in a playgroup. Okay, he wouldn’t be able to be in a playgroup, but maybe he would be able to live a long life anyway. Okay, he wouldn’t live a long life, but maybe he could live a short happy life. Okay, he couldn’t live a short happy life, but maybe he could live a short life with dignity: we could give him that, and she would hope for nothing else for him.
I was thirty-two when he was born, thirty-six when he was diagnosed, thirty-seven when he died. It was November tenth, just less than a year after his first seizure. We had a service at the university, and even in my deadened state, I saw all the people—our parents, our friends and colleagues, and Jacob’s friends, first graders now, and their parents—who had come, and had cried.