‘You have to leave the side of the bed up,’ the nurse says directly to me. ‘And you should never leave the room,’ she adds, as if I had wilfully left him alone with the side of the bed down, as if I wasn’t just told to leave the room by a doctor to tell me my son has a mass in his chest.

And this is the way I will always remember finding out my son has cancer. The thump. The thud. The crack. The scream. Being scolded like a small child.

We are taken to ICU and the hallways are decorated with massive decals. Hungry Caterpillar themed. We are in Room 1. On Monday he ate through one apple. Across the hall is a piece of chocolate cake, a strawberry ice cream cone, a pickle, a slice of Swiss cheese, a slice of salami, a lollipop, a piece of cherry pie, a sausage, a cupcake, and a slice of watermelon. Things will be ok, I think. Nothing bad could happen next to a giant pickle; it would be perverse.

And in the days that follow, when his oxygen levels drop and he is intubated, the ventilator hissing and tubes down his throat, and when they place him in a coma and when they tell me the results of the biopsy, a pinkish scar forming on his collarbone where a lump once was, and when they tell me that his body, in response to the cancer, has released antibodies which have destroyed his motor nerves and that he can no longer move, can no longer breathe on his own, can no longer swallow, I will look across the hallway and I will think: That fucking pickle.

I am handed a fraying white towel and toothbrush and lock the door of the small bathroom attached to E’s ICU room. My knees buckle. My breath staggers. I strip and run the shower as hot as it will go. I position myself on all fours. I heave and retch and gasp. I rock back and forth, the water hitting my lower back, the steam filling the room. I rock and sway, pulsing through each contraction of pain, breathing, breathing. I birth my fear, sticky with vernix, pink limbed and flailing. I get up. I turn off the taps. I wait for the steam to clear.

The doctor asks if we had noticed any symptoms prior to admission. Night sweats? No. But maybe? Weight loss? No. Well, yes. I mean no. He was twelve and having a massive growth spurt. He seemed stretched. Like a string bean, we had said. His shoulders had broadened. But yes, he had lost his baby fat. A cough? No. I mean not really. When he laughed he had developed a chesty kind of rumble. A deep kind of rolling laugh that became a cough. We thought it was his voice breaking. Literally cracking through somehow, every time he laughed. Unexplained fatigue? No. I mean fatigue, yes, but not unexplained. He was a social kid, always at sleepovers. Parties on Saturday nights. He never stopped. And so he was sometimes tired. ‘Such a teenager,’ we had started saying, when he was too tired to go for a bike ride with his brothers and dad. We rolled our eyes and smiled when we had said this. Pain? No. Once or twice. He said he had aches in his legs. Growing pains, we had assumed. And it becomes clear now, in hindsight, the way we thought his body was turning from boy to man, but in reality there was a threat lurking. Not a milestone looming. And the context strips away (the late nights, the hair under his pits, the bathroom door always locked when he showered, the smell of Lynx, the shadow of hair above his lip, the thick muscle of his biceps), and instead there are just warning signs we missed. We had thought we were bearing witness to his transition from boyhood to manhood. In fact, we had been standing idly by as his childhood was being stripped from him.

When E begins to wake from his medically induced coma, the speech therapist brings out a board of coloured letters for him to communicate. We point to each line of letters. Two blinks for no. One long blink for yes. Is it on this line? ABCDE. One long blink. We point to each letter. A? Two blinks. B? Two blinks. C? Two blinks. D? Two blinks. E? Two blinks. We pause. His eyes widen, his frustration palpable. Start again? we say. One long blink. And so it goes.

W-h-a-t-i-s h-a-p-p-e-n-i-n-g-t-o-m-e? he asks. Letter by letter. Blink by blink.

We begin again. As we always do. From the beginning. But no one really knows where the beginning is. Or the end. As we unravel ourselves. The days swim past. As we wait for the cancer treatment to work. For the tumours to shrink. For motor nerves to regrow. Like roots. Like vines.

A nurse called Cathy grows beans in her garden. Her husband cooks them in broth with sticky rice. She brings them in for her lunch and brings in extras for E. He can’t swallow properly yet, but he chews the softened beans in his mouth, soaks up the broth.

Georgia, one of the junior doctors, comes each day to see E. She takes out her tiny hammer. She taps his knee. Nothing. She taps his elbow. Tap tap. She holds his limp wrist. Tap tap. She was one of the first doctors to see us, when the Emergency Department sent for the neuro team. I find her presence a comfort because she met E when he could talk. When he could walk. When he could move each limb. She is the link from the afterlife to the before. As if she might somehow feel more responsibility to return him to that state. Then one day she stops coming. All the junior doctors who have been looking after our son disappear and are replaced with completely new doctors. Rotated out, rotated in. All the ICU doctors. The oncologists. The neurologists. Georgia no longer comes. No tap tap. There is no one here that has seen E walk. Or talk. Or move his arms.

That night E’s eyes roll back, and his eyelids flicker and he is unresponsive. The nurse presses the emergency buzzer and the doctors rush in. A new junior doctor grabs his hand. ‘Can you hear me?’ he says, ‘Squeeze my hand if you can hear me.’

‘He can’t,’ I say, my voice cutting through the beeping and the buzzing and whirring of activity in E’s room. ‘Even if he can hear you, he can’t squeeze your hand.’

He looks at me and then looks at E.

‘He’s paralysed,’ I say. ‘He can’t move his hands.’

The nurse lifts his eyelids with her gloved thumb and shines a light in his eyes. She repeats his name over and over. The junior doctor stands there.

‘Squeeze my hand if you can hear me,’ he says again.

Fucking Georgia.

When I try to remember the name of the condition that has destroyed his motor nerves my mind draws a blank. I have to google. Acute motor axonal neuropathy. I think of an axolotl. A childhood fact floats up from somewhere deep down. Axolotls can regrow their arms and legs and tails. I hold E’s cold hand. I squeeze it. Grow. I send a message from my hand to his.

When his thick, shoulder-length hair falls out in chunks from the chemo, our barber comes in to shave his head, tendrils of brown curls gathering on the floor. I ask the nurse if she has something we can keep the hair in once it is shaved off. She hands me a large Ziplock specimen carrier bag with a huge yellow triangle on it. WARNING: TOXIC WASTE. The next time I come home for a shower and for some fresh clothes I place it in my bedside table drawer, with loose cables and batteries and notebooks and paper clips and bookmarks and a small collection of my children’s baby teeth that have gathered in the corner. I put the bag of hair by the teeth. A golem of sorts. I wonder if I need some kind of incantation to bring the hair-tooth child to life. I open the drawer, release the trapped woody smell. Grow. I send a message to the drawer.

We have been playing a giant game of tag. You’re it. One parent home with the siblings. One parent in hospital. One parent on nights. One parent on day shift. We do not make eye contact with each other for days on end. We text updates rather than speak. We text the times we’re coming and going (who is collecting which children from where, who will pick up dinner, who will be home for bedtime, who will stay at the hospital). We sleep in separate rooms so the person on night shift doesn’t wake the person on day shift. Until one day we accidentally break the unwritten rule and he says look at me and we accidentally on purpose look at each other right there deep into each other’s eyes and we see reflected back to us the horror and the nightmare and the fear and the terror and I fall onto my knees and gasp for air and we rock together right there on the cold, cold tiles.

And I say:  ggggggggggggggggggg gggggggggggggggggggggggg gggggggggggg and he says: ggggggg ggggggggggggggggggggggggg gggggggggggggggggggggggg

My Instagram algorithm knows I am sitting in a hospital with a critically sick child, scrolling aimlessly while he sleeps. My social media feed is just sick kids. Sick kids who are dying. Sick kids who make a miraculous recovery. The comments section is filled with heart emojis and the praying hands emoji and God is good and God is great and Thank you Jesus and prayers and blessings and Wow! I can’t believe crypto mining is real I just invested $2,000 and got back $20,000 in just three hours thank you so much DM @babes_tabby. A chiropractor from Canada keeps popping up in my feed. Small children are crying and she’s moving their hips and at first I think what a quack but then five reels in I wonder if she could help us. She holds a small baby up in the air, its feet in her palms, she holds it upright like a circus performer and it wobbles and bobs and then she brings it down and she seems pleased. As if she has performed some miracle. Christ-like. Healing hands. Etc. And I think, again, what a quack. But my fingers keep flicking, flicking, scrolling down. I would kneel at her altar, I would take her wafer on my tongue, I would let her touch the feet of my children and my children’s children.

The drive to hospital is a straight line down the Princes Highway. At Clayton Road I wait to turn right. The Australian Lighting store on the corner of Clayton Road means I am minutes away from E. Usually two light sequences. The window of the lighting store is painted over. SALE 20% OFF. EVERYTHING MUST GO. FREE TUB OF HONEY WITH EVERY FAN SOLD. The sign is old and peeling. I wonder at the desperately hot families buying a fan for relief in summer and then opening a sticky, melting tub of honey. I imagine the golden tendrils. I imagine a tub with a yellow lid. On the drive in when I bring the boys to visit their brother we stop at the lights and we all say FREE TUB OF HONEY WITH EVERY FAN SOLD. Then we brainstorm why this would be until the lights change. Money laundering. Honey laundering. A fan-honey pyramid scheme. They have a hive out the back. We promise that one day we will find out. We will call. We will walk in and ask. We will buy a fan. And if they do not offer us a tub of honey, we will demand one.

The barista in the hospital cafe looks at E and whispers to me: Was he born like that?

In the hospital foyer I bump into another mother whose son is in ICU. She asks after our son. Asks when his tracheotomy will be removed, the tube through the front of his neck, creating an airway through his windpipe, a tube allowing him to breathe. I ask when they might replace her son’s skull. There is a giant sign above her son’s bed, on printed A4 paper: NO BONE FLAP. They have removed part of the bone from his skull temporarily until the swelling in his brain goes down. Soon, she says. Soon, I say. As if this is a normal conversation to be having.

On the way from hospital to collect our other children, I swing past the supermarket to grab some cereal, some milk, some bread. In aisle four a small child is screaming, holding a small toy. The mother patiently asks him to put the toy back as she compares washing detergents. He screams and cries as he runs back down the aisle with the toy. He stops at the place where he should put it back, pauses, turns on his heels and runs back to his mother, screaming and crying, toy still in hand. As he passes me, I move to put my foot out. To trip him. I bring my foot in only at the last second. He makes it to his mother unscathed, still screaming about the toy he wants. I stare at him for a minute. With his skull in one piece, with his windpipe clear. I can still feel the ghost-movement of my unkicked leg.

I begin to pull at my hair. Always my left hand. Always the same patch at the top left corner. I run each strand between my thumb and second finger, I do a swift flick halfway down and loop my hair between my middle and fourth finger. When I get to the bottom I start again at my scalp. The pull of it soothes me. The shhhhwoop sound it makes. As a small child I used to love wrapping presents. Used to run the scissors to the ribbon on an angle, and the ribbon would flick in loops. The same shhhhwoop sound. I think of scissors on ribbon. I pull. Thumb. Second finger. Quick loop. Middle. Fourth finger. And again. Sometimes I feel a pop and the hair comes loose in my hand. I finger it lightly, feel the bump of the follicle between my fingers. I let the hair fall to the ground. I run my hand through my hair again, huge chunks between my fingers from root to scalp. Three times. And then I start again and take another singular strand. My hair begins to thin. More strands come out. The hair that regrows is short and spiky. I run my finger along the patches of regrowth. As the new hair grows, it changes texture. It is thick and bristly. I continue to run my fingers along it, mapping each strand. Finding the unique ridges and divots. I run my fingers from scalp to root three times. Shwoop, shwoop, shwoop.

I overhear some nurses talking about how Erica has been given the palliative care shift. She waits outside the room down the hallway, covered in beach-themed decals. The sandcastle. The bucket. The spade. It is three months before I make the connection that this is where children come to die. She’s been given all the bad shifts lately, they say. Poor thing. Yesterday her shift was in E’s room.

On day 190, after our son asks again when he can have his tracheotomy removed, the tube right through his windpipe, a doctor says: It’s called being a patient because you need to be patient.

‘I think he’s been pretty fucking patient,’ I say, and a heat rises up in me. My hands turn to claws and the hair on the back of my neck rises. I move to speak again but instead I hiss. I roar. I pounce and my nail-claws dig into her face and I rip and rip and rip and tear until her skin becomes tendons, becomes blood.

‘I think he’s been very patient! Ha,’ is what I actually say.

I smile. I enunciate the word: Ha.

Ha. I add again in case she thought I was being aggressive.

When the doctors leave the room my fingers are bloodied, bits of scalp beneath my nails, still attached to strands of hair. I run my fingers through my hair again. Thumb. Second finger. Quick loop. Middle. Fourth finger. And again. And again. And again.

Free Tub of Honey with Every Fan Sold. I run my fingers down two strands of hair. Three times. Shwoop. Shwoop. Shwoop. I do not tell the doctors there is a small child growing in my bedside table drawer.

When E has been in hospital for 345 days, a doctor tells me about another patient she has who is unable to move any part of his body. She tells me he is able to work in data entry. He uses his eyes, she says. Data entry. She says again. E wants to be a doctor, I don’t say. And I don’t ask about his guitar playing fingers. I don’t ask about his legs that used to sprint up and down the basketball court. I don’t ask about his first kiss or whether he will stay out past his curfew and whether I will get him in trouble. I don’t ask which countries he might travel to and whether his friends from childhood will be his friends in adulthood and I don’t ask whether, when he turns fifteen, he will get his first job, maybe at McDonald’s or maybe at a supermarket or maybe coaching basketball or maybe babysitting. And the unasked questions hover in the air above the words DATA ENTRY and I shake my head to get rid of the thoughts like an Etch-a-Sketch, shake shake, and now all I can think is: Free. Tub. Of. Honey. With. Every. Fan. Sold.

‘Hold Your Nerve’ was runner-up in the 2024 Calibre Essay Prize. Calibre is worth a total of $10,000, of which Natasha Sholl receives $3,000. The Calibre Essay Prize was established in 2007 and is now one of the world’s leading prizes for a new non-fiction essay. The judges’ report is available on our website.

ABR gratefully acknowledges the long-standing support of Patrons Peter McLennan and Mary-Ruth Sindrey.