Arna Hemenway - Elegy on Kinderklavier

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.

Haim was quiet for a while, not looking at anyone.

“How do you live with your sadness?” he said after a long time.

The doctor paused where she was standing and looked at Haim as if she were suddenly afraid of him, as if she’d just realized he was sitting there.

Now the nurse comes in and tells me that it’s time, and I stand up and go to Haim to wake him up. Outside his windows, it is the middle of winter, gray snow against a washed-out night sky hung with thick clouds — a terrible season in which to be dying. Haim has made me turn his bed sideways so he can look out the windows without craning his neck. I gently cup his face in my palms and straighten it out from where it has fallen to the side in sleep, because I don’t want the first thing he sees on waking to be that failure of a dusk, the light not even gathering itself enough to be blue with the cold.

“Haim,” I say gently, over and over again. “Haim buddy, wake up. It’s time.”

The PICU is quiet, as it sometimes gets when this happens, as if the broken vessels and infection and blood clots and confused platelets in the other critical patients can sense the sundering that is about to occur and grant their hosts these few minutes, if no more, of calm. Though this doesn’t always happen, and may never happen, really.

My wife is not here, so she cannot see our little boy instruct his motorized wheelchair to take its place next to Ava’s bed, cannot, along with me, fail to hear whatever it is that he says to her, though she is beyond response and understanding. My wife cannot then see Haim roll out of the room and take up his position against the corridor wall, across from the big window that looks into her room and that the doctors sometimes use to do rounds with their students without waking her.

He does not sleep or ask for anything, even though we are there for two hours. He only watches as Ava’s mother kneels beside the bed and cries, one hand grasping hard the bottom of the lowered rail, the other holding Ava’s, which sits limply on the cover. Finally the doctor comes in with two nurses and says something to Ava’s mother and then she stands up and it is over, the monitors are turned off and the nurses begin disconnecting the many apparatus that have, until these few minutes, succeeded in keeping her alive.

Haim stays until long after, until Ava’s mother and the doctors and nurses and even the covered body have passed by him. He watches each one go and then continues to look in at the room, which looks strangely empty without the hospital bed, the several black screens still angled down to where it should be, blank faces turned to the absence, to air. Finally, he looks up at me and asks to help him get back to his room.

I think he’s asleep, think he’s been asleep for some time, his face turned slightly away, to the window with its vista of nothing, when he speaks, quietly, trying to stave off sleep.

“I just want to go home,” he says slowly, barely getting it out. “Don’t you?”

•

These things don’t have a beginning, not really. One day you’re at your son’s soccer game in the park, you’re sitting in the stands and the aluminum is cool beneath your thighs and the sun is high and beautiful, your wife is beside you, and the park’s green, which has been divvied up by a long procession of pitches where other boys move and shout and leap, is laid out before you, and there is the white of the ball distantly arcing through everything, the flash of jerseys vibrant with color, and then you notice that your son is lagging behind, is wandering in the empty area near his own goal-keeper; you notice he’s detached himself from the small knot of other boys around the ball, and you are about to call something out, afraid that he has become distracted, has lost interest in the game, and you are about to shout, to put your voice in there before the other boys notice, before your son can become embarrassed by his mistake, you are about to save him when you see that he is faltering, that his steps are uneasy, and then he is falling down even as you are rising, and he is rising slowly, pushing himself up from the ground as you step down off the bleachers, and then he falls again, and cannot get up, and there is something obviously wrong and you are on the pitch, you are in the grass next to him, you are cupping your hands around the back of his little neck, and his eyes are rolling, unfocused, and he turns his head and vomits all over your hands.

This was in April. The September before, our family doctor had mentioned that there was a tracking problem developing, and encouraged us to schedule an appointment with an ophthalmologist, which we forgot to do. Around February, I’d seen Haim’s eyes shake back and forth while he was watching TV, and Charlie and I agreed that it was odd and that if we saw it happen again, we’d take him to a doctor. These were the only things that could have told us.