Arna Hemenway - Elegy on Kinderklavier

So it is, as the resident explained, actually SIADH that caused the emergency today, that made my son fail to recognize me. SIADH, or Syndrome of Inappropriate Anti-Diuretic Hormone Hypersecretion. They don’t use the real names of these things because they’re ridiculous. Inappropriate hormone secretion, or, as it’s otherwise known, ninth grade, I wanted to say to cheer Haim up, but he’s unconscious, and it’s a lame joke that he will never be old enough to really get anyway.

There’s not much to do now but think about the words, as if breaking them down or playing a kind of sleep-deprived free association might change them into something more logical, something one might understand. In the wake of his morning of medical activity, Haim is now hooked up to an EEG to monitor brain activity, a ventilator, and a catheter, and has an arterial line in his left wrist and a central line in the right side of his groin. He has been given one medicine to seep fluids from his tissues into his veins, and another to make his body rid itself of the excessive fluid through urination. The body, even when it is more plastic tube and chemical molecule than flesh, persists in being a body. Haim is under sedation now, but doing better, and is scheduled, if everything continues to improve, to be extubated tomorrow. I already have a Popsicle ready for him for after they do it, have already stashed it in a small fridge in an empty room two rooms down. It’s purple.

Of course, no one tells you how to feel about this, how much this minor crisis signals our proximity to the larger one, the crisis that is not a crisis, the end. I try to call the number that, through several relaying connections, is supposed to connect me to Charlie, but it only rings again, as it has all day, to no answer.

Diffuse Intrinsic Pontine Glioma. Imagine a morning fog spreading through a dense forest, insinuating itself until its opacity is the very space between the trees, until its wispy presence exists even in the delicate distance between the needles of two overlapping fronds. It is a betrayal of one’s own flesh, growing as it does out of the glial cells, which are the ones in the brain that are supposed to protect your neurons. It is inoperable.

The first time we almost lost Haim (to a bad sepsis that developed around the medical port that had been implanted in his chest) I was still stuck on those words, “pontine” in particular. You read up on everything, at least until the medical labyrinth loses you. You do what you can. The pons is tightly held in the brain’s fist, encased neatly, maddeningly, by the meat of the cerebellum, midbrain, and medulla. It deals with sleep, breathing, swallowing, bladder control, hearing, taste, eye movement, and facial expression/sensation, among other things. The frontal lobe may be the seat of abstract consciousness, but it is the pons that is the seat of the bodily existence, the brain’s brain. Pons means “bridge” in Latin, and its matter bridges many things, like the signals for voluntary action and the motor cortex that allows one to act in the world, or the act of (in the sad, unintentional poetry of the medical textbooks) inspiration and expiration. The pons is there right from the beginning, in the folding of the tube that will be the fetal brain, gathering at seven weeks, just about the time you find it safe enough to tell the world that you are pregnant.

At the time, I could only think of the Ponte Vecchio, which I once saw as a child. It’s impossible to separate what I knew that first time, in the long hours sitting alone by Haim’s bedside in the PICU — not used to the kind of low-grade panic that never quite recedes and compulsively dialing Charlie’s cellphone number to no avail-from what I know now, from all the subsequent Googling, the madcap late-night efforts to draw the connections. A tumor on the pons, full name pons Varolii after Costanzo Varolio, the 16 th-century Italian who discovered it and who worked and died in the country of the Ponte Vecchio, where four hundred years later I stood as a boy on a dreary, wet fall night (my own pons at that moment safely coming to the last stages of its development and yet even then containing the very DNA that would recombine with Charlie’s, adding the future groundwork for one tiny disastrous mutation) thinking only of how the bridge’s many vibrantly golden lights leaping in the water made it look like the whole river was on fire . This all in order to somehow, someway understand even a little bit of what it was that was being visited upon my little son.

That was the night the holiday started, that night of the sepsis scare. It was the first of September, Haim had only been sick for about four months, and everything still seemed manageable. Charlie and I spent all day every day at the hospital with Haim, taking turns nights with one of us sleeping on the small foldable cot in his room and the other making the tired walk back to the flat in the cool dark.

A lot of the other families on the oncology ward could only have one parent there at a time, while the other was forced to spend the day working and visiting for a few hours before bedtime and on weekends. By this time, though, Charlie’s art shows (the reason we moved to England in the first place) had made so much money that neither of us had to work.

First grade, and Haim being gone most of the day for the first time, had been hard on both of us. We took Haim for little adventures after school, catching a train and getting as far out from the city as we could without coming back too late. Once, we went to a Zen garden way out in the country and walked around for hours, Haim pointing things out and naming them quietly, insisting that his made-up name for each tree or stone was correct, and we tried not to disturb the few other tourists with our laughter. On the ride back in, Haim fell asleep on Charlie, who fell asleep on me, and I stayed up to watch the dark farmland give way to the concrete and brick of London. The train was empty except for us and I remember even its hum of speed sounded pleased, contented.

So in some way during that first era of Haim’s sickness the days felt almost OK, like we’d gotten our little boy back somehow, like he might never get any older, might never outgrow us or this trusting age. We started out in the hospital the way that all the families on the terminal end of the oncology ward start out: the diagnosis is bad but your child is alive, is right now alive, and though in a vague, abstract way you understand the fear, here is your little boy, begging you to play futsal on the hospital’s miniature enclosed court, and how bad could any world be when he is running toward the goal, his head (no matter what grows inside it) tilted back to watch the ball arc through the air toward him, his tawny hair, half stuck to his forehead with sweat, catching the long golden sunlight of late afternoon. This is, of course, before his eyes begin to drift independently, before his left-side weakness becomes so great he cannot make a fist, before his speech so often dips into a slurring, coughing Hebraic stammer that when he does manage to get a clear sentence out it rings in the air as if someone else has said it. Before his body, bloated and ravaged and drained and filled with medicine, is so weak that he cannot stand to kick a ball, even if he ever showed enough interest in the world again to want to. This was before all that, when he was still recognizable, only a boy, a miniature bodily vessel brimming with the discovery of each day.

The sepsis emergency was the end of all that. It came on so quickly and completely that the doctor in the PICU said that he’d thought they’d sent Haim there to expire, and was confused when he found no Do Not Resuscitate order.

I wasn’t there when the crisis started, because it was Charlie’s night to stay in the room. She’d paced the room all night as Haim deteriorated, torn over whether or not to wake the doctor who was overseeing treatment, or to bother the nurse, who was overworked at the end of a double shift, and worrying about being a “problem parent,” trying to decide if it was all in her head or if this was really happening. This is what I imagine. What I know is that Charlie was alone with him through the night and there when he coded, and there in the PICU when he coded again. What I know is that I got a phone call at four a.m. from Charlie saying that I needed to get to the hospital right away, that Haim was dying. I don’t know if she waited somewhere to make sure I got there in time before leaving. I don’t know where she was calling from. The last time any of the doctors or nurses saw her, a Patient Care Liaison was putting the DNR form in her hands. When the doctor came to talk it over, she was gone.