We were almost to the restaurant’s parking lot when I said it, as if I’d been frustrated the whole time.
“You’re emotionally illiterate,” I spat, continuing the conversation that we’d both agreed to leave off.
“I know,” Charlie said, frustrated. “That’s why I need you to tell me why you’re upset.”
This was only a year before Charlie began painting, before a dealer from New York discovered her at a local show, before her first painting sold for more money than both of us together had made in our whole lives, and Charlie had the idea of moving to England so that we might be “closer to the world.” This was not even a year before I would fail to realize that we were at the exact middle of Haim’s entire life. And this was four years before he started babbling again, the tumor muddling his speech gradually, taking back the exotic words first.
“I’m just so tired,” Charlie said, and out of nowhere I thought of the first few weeks after we’d brought Haim home from the hospital, the way he could never cool down. It seemed to be keeping him awake, so I’d sit up with him all night, holding him in only his diaper, his body impossibly small in my hands. The only thing that ever made him feel any better was when I lifted him up and put my open, wet mouth on his stomach, then withdrew and blew on it. His skin was so hot, even though he didn’t have a fever, that I could feel it radiating into the air inside my mouth. He’d be quiet until I did it again, and I’d do it all night, all over his body until he fell asleep. And for days afterward, even when he no longer needed me to do it, I would still feel that kid’s warm skin against my lips.
“I’m tired too,” I said lamely, into the quiet.
“Ewok ewok ewok,” went Haim.
•
The medical team has come and gone, and Haim didn’t struggle at all against the extubation. He’s awake now, though something seems to have been lost in his long period of unconsciousness, some part of his health that will not be recovered. All day he’s been listless, slow-eyed, and quiet. They say that Haim’s status is “declining” and even though what they really mean is “descending” or “deteriorating,” it does seem to be the act of declining, of not wanting, of withholding, that tells you that you’re finally in the woods you will not find your way out of. Charlie has still not answered her phone, as if she can sense how serious things still are.
There is one last hope, which they told me about at Haim’s “Care Conference” this morning. Haim’s name has finally come up for a late-stage clinical trial that I signed us up for a week after his diagnosis. It is at the National Institute of Health in Bethesda, Maryland, and would require us moving back to the States and living there for a few months. The doctors and nurse and technician representatives and hospital social worker were all sitting there at the conference table looking at me after they explained how long the trial would take, sitting there looking at me like I should not want to do it, should just want to take Haim home to die. They’d already given me the “goal checklist” of medical things that needed to happen before I could take him home, if I wanted to take him home. But how can you want to do that? Maybe I’ve missed some important step or process in being the parent of a terminal child, maybe that’s what everyone else would have been going through during the holiday, but how can you want to do that? How can you ever hear someone tell you that there is something you might be able to do to have even one more week with this kid, this little boy whom you have fed, whose shit and vomit and tears and sounds of delight and mysterious, incommunicable discomfort you have known, whose impossibly rapid growth you have measured against your leg, whose tiny hands have grabbed desperately at your face and then your knee and then the bottom of your shirt wanting always to tell you something, to show you something, to call you to the things of this world — how can you have woken to the sound of his laughter, his crying, even sometimes just his labored breathing and not want to do it, to pump whatever vile thing into his changed body in the selfish hope of having even one more day, one more hour full of that unrelenting life?
Though, of course, you know you are selling him out, that this is a selfishness. You are thrust into the parsing of guilt, afraid of echoing to yourself the thought that you “just want it to be over” because you do want your son’s suffering to be over but you also want him back, specifically you want him back the way he was, and both things are impossible, and both ways is the only way you want it.
“At some point,” the doctor said, sighing and leaning forward. “You may feel treatment is going to do more pain and discomfort than good.”
Like I don’t know that. Like that isn’t the great suspicion about all the treatment he’s had since diagnosis.
We decided to let Haim decide. The care team followed me back to his room and explained everything as best they could, looking uncomfortable. I told him to think about it, and to talk to me when he felt like he was ready to.
In the meantime I signed the DNR form and also instructed them to rush the scans that are required to start the NIH trial. These are the little games you play with yourself, every bet hedged. Because Charlie wasn’t there, the nurse had to sign as my witness.
Haim is sleeping now, worn out from all the scans. When the nurses laid him out on the white tablet that would convey him into the MRI machine, the technician cut in over the speaker to say that he should try to keep as still as possible and Haim laughed, once, mirthlessly, almost a bark. The technician looked confused.
The last procedure he had to go through was a physical evaluation by a neurological specialist. We hadn’t met this particular doctor before because she mostly evaluated children for brain surgery. Uncharacteristically, Haim was talkative with her as she went through the little reflex and movement tests with him, his little voice sounding strange and fragile in the overly lit examination room.
“So you just work with children with brain problems every day?” Haim said, struggling with the “j” of “just” until it came out with a sh-ing sound.
The doctor, who was a tired woman with dry, wiry brown hair, gave a wan smile.
“Yes,” she said. “More or less. I usually try to see what all’s going on between the brain and the body so that the children I treat can have the best surgery possible.”
“But not me,” Haim said.
“Well,” the doctor said, glancing up at me. “I’m trying to help the doctors you might go to see at another hospital understand what exactly is happening with your brain.”
“With my brain and the tumor,” Haim said.
The doctor glanced at me again.
“Yes,” she said. “With your brain and the tumor.”
“Doesn’t doing this all day make you sad?” he said.
The doctor sighed and smiled a little again.
“Of course, a little bit,” she said. “But I’ve been doing this for a long time, and you just can’t let it get to you. You have to focus on the boy,” she said, squeezing his knee, “and not the sickness.”
“But it still makes you sad,” he said.
“As much as it would anyone, I guess,” the doctor said.