Letters from the Inside
Not as Bad as Prison, Not as Good as a Bad Holiday. This is the second in my series "Chronic Love". About motherhood, grief, and chronic illness.
Just hanging at the hospital. I’ve decided it’s somewhere between prison and a bad holiday. Not as bad as prison. Not as good as a bad holiday.
There are lots of wild people. Intriguing power dynamics. Sick and disadvantaged faces everywhere—but also an undercurrent of gratitude and perseverance.
We walk the empty white maze of halls. I play music on my phone to lift the mood, throwing in the occasional dance move. She giggles and dances too.
When she is asleep—I sometimes walk those same halls alone. AirPods in. Occasionally singing… A silent disco. There’s no one here to hear me anyway.
I laugh to myself, imagining someone seeing us, and how surreal this must look: a two-year-old with multiple tubes hanging from her body, giggling and spinning in circles. Me, dancing beside her like it’s the most natural thing in the world. If someone stopped and asked what we were doing, I’d say with a big smile and my slightly sarcastic tone:
“We’re here for the party!”
Oh, I crack myself up. Or maybe I’m actually losing my mind.
And she’s good company, even if she is currently poking me in the eye.
A friend who works here as a social worker once jokingly described the Children’s Hospital as “like backpacking with a sick child.” And it’s true: shared wards, dorm-style bathrooms, and tiny kitchenettes, thin curtains separating us from the next exhausted parent and sick child. I try not to eavesdrop on other people’s situations, but it’s impossible not to.
We know this place too well. It’s depressingly familiar. Our second home. I could draw you a map, give you the behind-the-scenes tour—even these curtains get changed every 12 months. They have expiry dates on them. Every paediatric ward in every hospital has the same curtains—they change the design annually. For almost three years, we have been coming in and out, three sets of curtains.
There are three major hospitals in a row here—Prince of Wales, Sydney Children’s, and The Royal Women’s. I think they call it a hub. Even Silverwater Jail has a ward here; you often see prisoners being escorted in and out with their guards. I think six of the nine times we’ve been in for surgery, we’ve shared the waiting bays with them. The first time, I was in shock—now it’s just another part of this absurd landscape.
Almost exactly five years ago, I walked out of the very doors I’m looking at, from The Royal Women’s with a three-day-old newborn. My darling Imogen. Terrified. Petrified to be a mum, with no idea what I was doing.
This isn’t easy for her either—but she’s getting used to the hospital grind, like the rest of us. She’s currently staying with my sister and nieces for the school holidays, having a good time. She turns 5 in two weeks. I miss her.
Our last admission was only two months ago—we played leapfrog down the empty halls at 9pm when she was too restless to sit in bed any longer. Today we’re dragging an IV line with us. Not enough rope for leapfrog. Shackled. Shackled to an IV line.
Is that even what this thing is called?
We walk back from the café—I’m juggling a coffee, a wand, a toy, a phone, an oat bar, and a child connected to a… IV line? I take a photo and ask ChatGPT.
“IV pole,” I say out loud. I was close.
Time moves in a strange way here, slowly melting, then a sudden jolt, flatlining, then suddenly spiking… the juxtaposition of doing nothing all day, yet it still being the most mentally and physically exhausting experience you can imagine. Depleting. As a parent/carer, anyway. Maybe it’s different as the patient. Everyone keeps reminding me she doesn’t know any different. It’s true, but not particularly comforting.
There are these gorgeous volunteer Nannas who come around with hand-knit blankets and hold your baby so you can take a shower. Sometimes they just have a little chat and keep you company. One once told me: “There is no clock in here. There’s not even a calendar.” And it’s true. Days just seem to dissolve. I fall down a rabbit hole every time we’re admitted.
And yet—she doesn’t hate it. Not all the time. Despite being poked and prodded, stabbed, examined, gassed to sleep… She’s two. There’s unlimited TV and snacks! What’s not to love?
The night before we were admitted, I crumbled and bought the girls tablets. A little square of dissociation to get us through the next couple of weeks.
I am making it sound awful - and it is, but there are also lots of free toys, Clown Doctors, roaming musicians strumming little ukuleles.
John jokes that Claudie likes the hospital food. Almost prefers it! It’s funny because I’m actually a really good cook—at least as good as my writing. Probably far better. How could she prefer grey vegetables and room-temperature gelatinous, over-salted meat gravy? Served on a round plastic plate, with a round cover, like a daily surprise.
We walk the empty corridors. Pop outside for some fresh air. Even the park benches here are familiar now. I’ve sat on all of them, often crying on the phone to family or close friends—taking a break.
It’s Anzac Day long weekend. The hospital is quiet. I hate being in hospital on holiday weekends. It’s always depressing, but it feels even more like an eerie dystopian world when most people have cleared out. Not all services are running, and those who can, have taken the long weekend off. It’s like the world outside is moving, but we stay still. A timeless white maze of empty corridors and endless closed doors.
John uses humour as a coping strategy—he has a very clever, quick sense of humour. Some of the funniest jokes I’ve heard him say in our 13-year relationship have been in here. It’s part sleep-deprived delirium, part his cheeky, witty self making hilarious observations at the absolute absurdity of it all.
He was passed an iPad and asked to fill in a feedback survey as we were leaving ICU, after our 5-week-old Claudie had almost died.
He read aloud, with his dry sense of humour—“Would you return to this ICU, tick. Would you recommend this ICU to a friend?” Like he was filling in a feedback form for a local restaurant.
The Junior Registrar looked horrified—“I am so sorry, does it say that?” she gasped as she grabbed the iPad back.
Got you—the funniest jokes are the ones when you realise they are on you. And I am not sure how else at this point we make ICU bearable than a good "got you" joke. I laugh, slightly speechless, and think to myself “marry someone who can make you laugh, even in hell”.
I think the longer anyone spends in hospital, the darker their sense of humour gets. I said that to a nurse who had worked here for 20+ years - and she wholeheartedly agreed “ nurses and doctors have a very dark senses of humor”. Dark, gallows humour. Like a badge of honour—you are only allowed to joke about death once you’ve survived it, looked it dead in the eyes and said “not today fucker, you don’t win”.
After we left ICU, we were moved to C1 South—the ward for very sick babies, renal patients, and assorted long-termers… kids who are in for weeks, even months. I briefly chatted to a mum and explained that we had no idea what was wrong with our 5-week-old baby, but maybe genetic testing would tell us. She told me her 11-year-old was on dialysis. They were also here… a lot. She’d been waiting over a year for genetic test results. Sobering, to say the least. My heart dropped - I’d been clinging onto hope we would have an answer a lot sooner. Could I really wait a year for test results?
C1 South has a nicer feel than some of the other, more transient wards. They put up decorations. There’s a baby adjacent to us whose family has decorated her bed and wall like a nursery—her name on a wooden pink sign. I think it’s meant to be uplifting, but it makes me want to cry. I don’t want this place to be dressed up to look homely. I want to go home.
That was two and a half years ago. We were put back on that ward briefly about a year ago. My heart stopped when we walked into the room. It will always hold dark memories for me.
We’d spent 2–3 weeks in that room, post-ICU. I remember the newborn in the bed opposite having radiation therapy (I knew because there was a little sign saying not to get too close—they were radioactive) born with an extremely large tumor on their leg. His mum didn’t speak much English, but we shared a few hellos and kind words, comforting prayers with our eyes. We might not have spoken the same language, but we were both mothers in survival mode with our newborns.
The room had four beds. They were opposite. Next to me was a 2-year-old experiencing withdrawal from a milk addiction. She had never eaten food. Only drank cow’s milk. She was extremely malnourished, requiring a blood transfusion for dangerously low iron. The doctors had cut her off milk completely to force her to eat, but she would scream all day and night. It reminded me more of an animal in severe pain than a small girl, the same age as my Imogen at home.
The things I have seen… only one resuscitation, only one near-death.
During our brief couple of nights back on C1 South, we weren’t in the same bed—we were in the bed next to our old bed. It makes the flashbacks slightly more bearable. I’m not sure I could go back to that bed.
But today, 1.5 years since it was ours, it’s been set up as a makeshift ICU. They put the sickest baby in the bed closest to the nurses’ station. This baby must be very sick—and quite possibly ICU is full. It often is. I assume this because there are a lot of different machines and a dedicated nurse with a little computer sitting at the end of the bed, watching the numbers on each one. You only get your own nurse in ICU. One nurse per child—or two, if it’s really busy.
My mode is different to John’s. I try to keep up with his humour to keep things light and bearable, but I move between dissociation (lost in my overthinking, existential brain) and hypervigilant hound. Sniffing out every corner and detail, analysing each word and the body language of every doctor who walks in our room. I could write you an org chart for the respiratory team. I like to look up each doctor— do a quick background check before I trust them with my daughter’s life.
Sometimes I get too tired to even hear what they are saying, zoned out to their complicated explanations, just like high school science class. But at least there is Dr Google to try to make sense of new 5-syllable words and information once they leave. If it’s really bad news, they send the most senior doctor—you can almost tell what type of news you’re going to get by the seniority of who walks in the room, if you’ve written a mental org chart. Every ward round is like Russian roulette—no news, good news, bad news… But the rank of who’s holding the gun can give you a clue before it even goes bang - “But can you tell me when we are going home?” “When she is well enough to leave—hopefully soon.” Most days are slow—then bam—fuck—what? How the hell did we get here? We are breaking ourselves as a family through endless rounds of treatment, and then a Dr appears, looking at their feet, hands in pockets, uncomfortably telling me she is getting worse.
I tried to tell John that I thought I could now read body language - that even when I couldn’t understand a word they were saying, with their clinical scientific explanations, I could gauge how bad it was by how uncomfortable it was making the Dr look to tell me. Once a Dr took off his shoe and scratched his foot while talking to us - John teased me - “ What’s taking off a shoe code for, oh wise one?”.
I’ve even had a very senior, esteemed doctor sit down on the floor in front of me—my best friend Lexx was already sitting on the floor too—I was in the chair pumping. It was kind—I feel like she was trying to be on my level—like a friend. She complimented me: “I commend you, this is a very difficult conversation you are keeping track of while you are double pumping at the same time.” I think she was trying to make the fact I was squeezing milk out of my breast while speaking to her less uncomfortable. “This is as good a time as any” I smile as I squeeze the last drops of milk from my nipples while looking her in the eyes. I am hardly going to tell her to leave when I’ve waited all day for her, or whichever Dr is rostered that day, to do their rounds and come see us. You never know when and who is coming! It still seems like a bold move, it’s always stayed in my mind—was she sitting on the floor cross-legged because she pitied me? Was this some kind of reverse power move? Are we comrades, planning the battlefield, whilst I am looking down at her pumping my bare breasts…? She has since retired. That’s how long we’ve been coming here.
Nine surgeries. And I’d still do it all again. Every admission, every cannula, every night spent in a chair, every tear. Every time I’ve felt like I was losing my grip on reality—I’d do it again for her.
Loving her is visceral. Natural - even in foreign territory.
My doctor says I have anxiety and ADHD. A get to overthink everything and be hyperactive at the same time. Sitting in hospital all day everyday staring at a wall, is a surefire way to drive me insane.
I saw a TikTok video recently that used a “hunter vs. farmer” hypothesis of ADHD to understand ADHD traits in an evolutionary context. In prehistoric hunter-gatherer societies, people with traits we now associate with ADHD were not "disordered"—they were the hunters, not the farmers.—the ones who noticed the rustle in the grass before the lion pounced. The ones who stayed awake by the fire, tracking shadows. Maybe that’s why I can’t sleep - I am staying awake to keep the others safe.
Sometimes I float above myself. Out-of-body, half-lucid, half-delirious. I know I’m here—but it feels like I’m watching from a perch just above the hospital bed. I’ve started wearing AirPods almost constantly to drown out the surroundings. I love music - I can escape when there is music. I’ve even started sleeping with them in, and wearing them in the shower. AirPods in the shower? I highly recommend - sensory bliss. Like listening to music underwater.
I chat to another mum as we walk back to the ward from the coffee shop. I’ve seen her and her son in our ward the past week. It’s always awkward asking people what they are in for, what’s wrong with their kid. It’s ironic that its Anzac Day - because everyone in here is fighting a battle - but some are small, a few days of pain and discomfort, while others are life and death. This mum I walked with today, looked a mix of optimism and shock - alert. We shared our childrens jouney’s and diagnoses. Her 2-year-old son had just been diagnosed with leukemia. They had just started 2 years of chemotherapy, but post that, the prognosis was extremely positive. There was an extremely high success rate to the treatment. I asked how she knew - she said he was very pale, as white as a ghost, and extremely lethargic. She had the hope and energy of someone fresh to the battlefield. The armor of someone determined to win, to fight - because losing wasn’t an option.
Back on the ward, we barely acknowledge new arrivals. Everyone’s encased in their own bubble of trauma. Claudie looks like the sickest child—machines, tubes, monitors. But still that cheeky smile. That cartoon voice. Strangers stare. She is heartbreakingly beautiful.
Everyone says she looks just like me. She does. But with John’s big, honey-brown eyes.
It’s not as bad as jail, not that I have been to jail to know. It’s more like a bizarre holiday, swinging between exhaustion and adrenaline. Wait—maybe it’s more like being stuck in an airport… waiting for a flight you’re not even sure is coming. You’ve been delayed. You don’t know when—or if—you’re flying out.
Like we are fleeing - a war zone, a white walled portal with endless corridors and doors - you are staying positive, there is a seat for you, and all your loved ones….And everyone around you is the same - on edge. They are putting on a brave face for their kids… like a parent has to, has to for your family’s survival - but no one knows if their plane will arrive… and if there will be a seat for you all. And chronic illness - its a life sentence. From this prison, this hell, we get to come in and out, but you still relinquish control - you do as you are told. Because they know “better”. That this suffering, holding her down while she screams and cries, that you must both endure is for her good. Most of the time when we go in there’s not even a discharge date. No privacy, no power. Unless you’ve lived this, I don’t know how to explain it. I know i’ve used a ton of different analogies already - but I’m reminded of one that gets shared frequently, for it’s timeless metaphor- “Welcome to Holland”, written in 1987.
Welcome to Holland by Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability— to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this... When you’re going to have a baby, it’s like planning a fabulous vacation trip—to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things… about Holland.
I love the “Holland” metaphor. But sometimes, like just last week, when her Dr confirmed she had permanently lost a lobe of her lung, I question where we are going. I feel like an anxious mother in the airport, waiting for a flight I’m not even sure is coming. It’s slow, we are waiting. Rare diseases have their own uncharted terrain - no one can tell you where you are going, even the experts don’t have guidebooks.
Hospital is its own universe, that we dip in and out of.
An airport terminal between life and death.
You don’t know which way you’re going.
And every time we leave, I imagine this is the closest I will ever feel to being a soldier returning from war. Back to everyday life we go. Carrying an invisible chronic illness.
Scarred. Changed.
You can’t unsee where you’ve been.
love how u write omg🍓🍓🩷🩷this is genuinely so well written ahh i wanna be like this <33 wld love ur feedback on my recent post ⭐️⭐️
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