My back’s sore. Scrunching, plastic-covered mattresses on pull-out beds are not conducive to fresh-as-a-daisy sleep. I’m weighing up the grim reality of the shared parents’ shower against languishing in my clammy, personal hygiene-free zone for a few more minutes. Maybe longer.
I’m at The Children’s Hospital, Westmead, with a sick daughter. I’ve tried to tell her that she’s “sore, not sick”, but she’s 10, can’t walk, can’t go in a car, feels constant nausea. Her pretty little face is pale with pain. The “re-framing” that’s the bread and butter of my professional life isn’t washing this particular issue away.
Seven weeks ago, on a Sunday, she complained of a “sore tummy”. I told her she’d be right. Her father gave her a Buscopan, asked lots of kindly questions and cuddled her.
The next day her lunchbox came home untouched. And the next day, we went to RPA, and the whiplash-inducing ricocheting between emergency rooms, adolescent wards, infectious wards, waiting rooms, post-op recovery wards, specialist centres and ambulances began.
Her slight body has offered up eight sets of blood work and three urine and faecal tests. It’s posed patiently for a CT scan, an MRI, an abdominal x-ray. And it has lay prone for a gastroscopy, four ultrasounds and a colonoscopy.
And you’ve guessed by now where this is going: right now, some of the best paediatric medical minds in Australia don’t have a blind clue what’s wrong with her.
They do know she has coeliac disease. Investigate anyone that many times from mouth to anus and you’ll find something. It’s just a shame for her that “something” ended up meaning no cake (real cake) for the rest of her life.
But in the grand scheme of all the things that are shames right now, that’s the least of them.
The larger ones are: the pain. Oh, and did I mention the pain? And the surgeon who – carelessly, within her earshot – told us, “We’re seeing this abdominal thing more and more in bright, high-achieving teen and pre-teen girls.” What the..?!? In other words, I can’t find the cause, so to save my medical face, my diagnosis is that she’s making it up.
We broke up with him.
We’ve got big love though; we’re polygamous with many others, always hopeful that the next specialist — the next brainbox we’re sent to, or who walks through the ward door — will be the one to fix it, crack the code, find the silver bullet, blow us away with his or her brilliant diagnostic mind.
A tall, motherly young doctor with red hair and pale skin treated her last night. She was from Ireland. She reminded me of a girl I went to school with, someone I thought was the very best of people, and I told the doctor so. I also told her she was beautiful and then I cried. She responded, “Oh, bless you…we’ll keep you!”
I’m grateful for acts of kindness like that: people “checking in” (and I don’t mean in the Facebook sense), friends bringing presents for my daughter, offering us meals and to take care of my son. Many of these friends face significant challenges of their own. Though, who in middle age doesn’t?
Each time someone asks how we’re going, I respond in one of three ways. I deliver the latest “news review”, a succinctly edited verbal digest of the symptoms, treatments and next steps. Or I tell them I don’t really want to talk about it. Or I cry. The point at which a compassionate inquiry intersects with an image of her pain-creased face and the dull torture of not knowing is most often a teary one.
I’m grateful too for flashes of my little girl of old. A quirky observation about a fellow patient’s shoes. A jocular re-telling of a wisecrack from her beloved (former) Top Gear hosts. A flash of energy big enough to make her want to grab her dog’s front paws and pull him upright for a dance.
There are things I hate. Being called “Mum” by medical professionals who are not my children. Sleeping next to snoring strangers. The smell of other people’s babies’ shitty nappies being changed two metres from my head. The interminable waiting — for appointments, results, consultants to visit the bedside. Us delivering the symptoms synopsis, again and again. The drugs treating symptoms and not a cause — because the cause, whatever it is, is all bushel and no light. The drugs we say yes to in desperation, even though the thought of them going into a 10-year-old’s body scares us witless. Her plaintive sobs, angry railing, jarring yelps from pain. The helpless, helpless feeling of being the parent of an unwell child. My irrational anger, always white hot, often misdirected, sometimes blinding.
There’s always someone doing it tougher, I tell myself. I’m not sure we “deserve” to be here. Kids’ hospitals are places of great energy – the life force of children, even sick ones, is almost palpable here – but they are places too of unspeakable sadness. A sweet girl opposite my daughter in a previous ward — gamely studying for her HSC — evidently had breathing problems. Turns out she has cystic fibrosis and a life expectancy of 38 at best. And we’ve seen even worse than that.
Australia’s treasurer, like many of his colleagues in government, sees the world in black and white. “Lifters” and “leaners”. One lot are good, one lot are bad. Such dichotomies ignore life’s inevitable and essential shades of grey. They make us think it’s good to soldier on alone, bad to ask for help. They make people who find themselves needing to lean – on family, friends, employers, ambulances, the public and private health systems – question their right to be at an angle, asking someone else to help take their weight.
We’re in a leaning phase right now. We don’t know how long it will last. We don’t know what made it happen. We don’t know much at all. But at the end of the day the only black and white that matters is “sick” and “well”. And hopefully we’re leaning towards the latter.
Hi Sam – was not aware of your current family dramas. I note that I do not have an email address for you. Please reach out to me at email@example.com so that I can send you a note. All the very best – Mike Aston
Thankyou Sam for having the strength to share your experience and write this post .
My thoughts and prayers are with Ivy , yourself and your family .