Bevan Morgan

CN: CHILDREN WITH ILLNESSES, INCLUDING FATAL ILLNESSES

This is the episode I have been putting off writing the longest. Spoiler alert: this series hasn't necessarily been written in the order it's been presented. Some episodes were super easy to make, while others have been really challenging. This one has been by far the worst. This is the sickness episode, where I talk about the challenges of having a sick infant. And the thing is that it shouldn't be so hard because sickness is inevitable and something necessary. But the fact it has been so hard is the issue. It is a subject that requires a lot of strength and resilience that I feel constantly plagued about lacking.

Sickness is such a frustrating but brilliant part of evolutionary biology. How our immune systems take on board a bug, learn about it, and then develop antibodies to fight that kind of bug if it returns is…I don't know – miraculous? How do you describe it? It's not a miracle in the biblical sense. It's evolution. But who's to say that evolution can't be miraculous? The way that, as a species, we have developed ways to speed up that process with vaccination is…well, I don't think of any more incredible human achievement. Sickness is a painful blessing. Most of the time, when you're sick, your body is working, and the sickness is just your body expelling the bug and your body healing. It's a silver lining to something we all go through and all hate.

We have to get sick to ensure we don't get sick, which is undoubtedly something I have taken for granted my entire life. I had an immune deficiency as a child, so I was very ill. I don't remember that so well, though, because I was very young, and time has just compressed a lot of those incidents, or my brain has just straight-up abandoned them. My parents remember them because it was exceptionally hard for them. There were no free GP appointments back in the 1980s and 1990s. My mum had to go back to work so my parents could afford my doctor visits.

Seeing this cycle play out with my own daughter has traumatised me. I don't use that word lightly either – it has sometimes wholly destroyed me. It has left me with a significant hole in my ability to parent correctly.

We're lucky; there's no doubt about that. Our daughter is healthy and happy at the moment. We haven't found any allergies of concern. She's immunised and had no problems with the inoculations. She hasn't hurt herself seriously, and she's developing well. But she has been sick, obviously. And she's been very ill at times. We've had to go to the hospital four times in her first year, and she's had a lot of days off from daycare. She's had multiple viral infections and some bacterial ones as well. These have hurt to witness more than anything I can remember ever experiencing.

The first trip to the hospital was by far the worst. Ava was young, less than three months old. Up until that point, she had been such a happy baby. So, to come home from work to find her mother on the verge of a breakdown and Ava hoarse from screaming so much was a real shock. We knew she was not quite right, but the acceleration was extreme. She couldn't keep anything down, and the screaming was relentless, and she was burning up. We went to A&E and were sent to the hospital, which was good and bad. The staff at the kids' ward at Waikato are magnificent. They really are. But going to the hospital with someone under three months is scary because the team quickly start dropping terms like meningitis around. I learned that babies' infections are super dangerous because they can get into the brain.

We had to hold her down to get injections while she got poked and prodded by various doctors and nurses. It was only then that I started to think about what this must be like for a baby. Your eyes are barely open, you're running on instinct the few weeks you've been alive, and then suddenly, all you feel is pain. While in that pain, you get put in this weird place where people in masks start making the pain even worse. You can see your parents who are the ones who have been looking after you. Still, they're helping these strange people…it's not just physical pain and fear. Still, there is an element of betrayal that I had never considered before having Ava.

That first experience was what did the damage to me, I think. It all happened quickly, and it was such a steep learning curve. We know people who have had babies with meningitis, and I always knew I didn't know how to grasp just how terrifying and crushing it must have been for those people in those moments. I thought she had a bellyache 24 hours before, and now it felt like there was a realistic chance that she might have something that could kill her. The fact that just suspicion and an outside chance were terrifying leaves me sickened, wondering how I would have coped if it was anything more than that.

It turned out that she had a UTI. They were able to get on top of it with various antibiotics and painkillers and fluids, and the general things you use to bring a baby back to life in a hospital. She was in there for a few nights, and when she came out, the relief only matched the moment when she was safely cut out of her mother's stomach.

Since then, there have been other similar instances, and even worse – but they have also been somewhat limited in their impact by the fact that she has been old enough not to have to worry about the potential for the virus to impact her brain in the same way that it could when she was so young. None of these experiences has been pleasant. The last one was particularly nasty because we had just been hit with new restrictions. I could barely spend time in the hospital, so I had to deal with the guilt and anxiety at home all alone, recording sessions of me reading books to her, hoping that would help ease Gemma's burden even slightly. But they have all profoundly sucked, and at times I have found myself unrecognisable amidst bouts of manic panic and hyper-worry.

But it's the first one that did the trick. The speed at which that day went from uneventful to terrifying has obviously done some long-term damage that I'm only just beginning to understand.

What has become abundantly clear in the times that she has fallen ill since then is that I have not dealt well at all. I've started to unpack it and work through this, and I now know that there are a few classic feelings and emotions that I go through when she is sick that all lead me into dark places.

One feeling that I develop is physical pain. Hearing my daughter's sick screams physically hurts me in a way that her other screams don't. Frustrated screams are annoying, but I am getting better at tuning them out because she doesn't have the brain to understand the reasoning or how to communicate with words. It's different with the sick screams. The panic button is hit with every single one of those. When they don't stop, the panic button is stuck, and all the cortisol is just soaking my brain. Like a sponge, my brain keeps absorbing it and getting heavier and heavier to the point where that cortisol fires up my nerve endings, and everything hurts.

Obviously, there is worry and fear when she is sick, too. They hardly seem worth mentioning because they are so obvious.

The most surprising and destructive, though, is anger. I get stupidly angry when Ava is sick. Not at her – OBVIOUSLY. I get mad that she has to suffer. Hopefully, that would have gone without saying. But I get angry at the injustice of it all. I get furious that there is so much waiting around and that our medical system seems to be running off the smell of a rag so old and worn that it doesn't even have any oil smell left. But I get also get mad for selfish reasons. I get enraged that we must go through the whole rigmarole of worry, lethargy, and general helplessness that having a sick kid makes me feel. I get angry at daycare, and I feel like I want to burn the place to the ground. And then I get mad at myself.

Firstly, regarding daycare, I know that daycare hasn't done anything wrong. Her daycare is incredible, and I would recommend them to anyone. They have been extraordinary with her and have made our lives so much easier. That exposure to bugs would always happen now, or when she started school, so it's not their fault that our bodies have evolved the way they have. But still…in those moments, I get so mad and feed the anger by telling myself that someone broke the rules and brought their sick kid along, even though I know that is stupid and is entirely unrepresentative of how illnesses even work. It's an energising fiction. I know I need to put the brakes on, but I too often indulge in the heat of the moment to try and make sense of what is happening.

But stupid and unfair daycare thoughts aside, I also get angry at myself for being mad. I despise myself for being mad at the tedium, mainly because I know that when push comes to shove, Gemma will ultimately have to stay with her. My emotional fragility will add to the ongoing cycle of mothers inheriting all the work while Dads complicate matters.

I think resilience is an often overused word. There is definite value in stoicism, and there always has been. In saying that, though, I also feel like resilience is becoming the new mindfulness – a crutch word, people in power can use to belittle the mental health battles of people beneath them. Much like it's been easy for employers to offer mindfulness instead of altering how their organisation operates, it's easy for an employer to tell an employee they need to be more resilient when struggling. That way, the employee doesn't have to examine why they turn over staff like most people turnover bed sheets.

But these are the moments where resilience has value and stoicism is helpful. I want to be better in these situations, and I want to mask things and put up walls so that I can deal with something like a grown-up should. And while I don't know how much progress I've made, I think at least acknowledging that I need lots of work is a type of progress. It's a work on – a significant work on.

I know I don't handle her being sick. Generally, I don't. I still am developing those tools, and it takes so long for me to recover from any time she gets ill. I'm not sure how that will play out because she has a lot more sickness to go. We're also kind of living through a pretty scary time in terms of contagions. I hope that when we can communicate more effectively and get used to things, it will be easier, far less complicated, and less traumatising.

As I say, we're lucky. Ultimately, all of Ava's sicknesses have been difficult but treatable. We haven't had to endure anything close to some of the harrowing stories we've heard from other parents. Unfortunately, hearing those stories doesn't give me the perspective and gratitude you might think it does. Well, I mean, they provide me with gratitude. I mean to say that they don't just give me those. They also give me a new level of fear I've never encountered before Ava came to be. I'm so scared because even though Ava has been healthy so far, I am petrified that this might not happen someday.

I am going to speak about fatal illnesses in children. I know I gave a content warning up the top, but I'm going to give another one here because I want to ensure that you don't hear it if this is too hard to listen to. If you're listening to the radio, I suggest you mute it for the next few minutes. If you're listening to this via podcast, you can skip to...

There was a night last year when Gemma and Ava had gone to bed, and I was scrolling through Reddit. I found a picture in my feed from a subreddit called last images. I don't remember what the image was. Still, it was enough to pull me into that subreddit, which was made up of people posting the last pictures of people alive. So, there are famous people, obviously, but more interestingly, people post photos as a memorial to their lost relatives.

Many of these were heartbreaking, as you'd imagine, but I want to dwell in that kind of heartbreak, if that makes sense. There is a haunting beauty in how fragile life is without wishing to sound pretentious or insufferable. Sometimes, it pays to remember that. I was struck by some of these images and the pain of the people posting them. There was one where I might have these details slightly wrong, but someone's father or grandfather had recently passed. And for whatever reason, they were looking at their house on Google maps. The camera just happened to take a photo when their relative stepped outside the front door. There they were, just out of nowhere, on their computer screen, going about the most nondescript part of their day…living. It was like a snapshot into something so valuable that wouldn't have been thought of twice, and there's so much to think about in something like that. You can see why this kind of thing is interesting and not solely just a macabre form of griefsploitation.

I knew I was playing with fire a bit because it was probably inevitable that I would go too far into this rabbit hole and find something that would distress me. Sure enough, that's precisely what happened. Not long after this, I came across a photo of a tiny child…I can't recall the age because I've tried to purge the details from my mind, and I don't know if it's even a good idea for me to bring it up now because it physically hurts me. But this child was in a hospital bed, hooked up to tubes and lying on their side, holding their soft toy. Their eyes were open, and the person posting it, I think, was the kid's mother. And she basically recounted how this moment was the last time she ever saw her child with their eyes open before they passed away from whatever had put them in that hospital bed.

And I just collapsed internally. This picture… it was the detail. The soft toy, the look in the child's eyes…just the almost matter-of-factness of the description. It was too much for me, and I just burst into tears, sobbing, heaving tears because all I saw was Ava. It just reminded me so much of her being in the hospital, and it could have been her. And I sobbed, and I wept, and I sobbed, and I had to go into her room to look at her and had to hold Gemma for a while. A single picture has never destroyed me like that. I mean, very few things generally have destroyed me like that.

This is part of what breaks me every time she deteriorates. Whenever she screams in that sickness tone and ends up going hoarse from that screaming, any time she is begging us to make the pain stop and we can't, I am just internally freaking out that this is where it will end up. I can't even begin to comprehend, nor do I want to start comprehending what happens after that. We know people who have suffered that kind of loss, and you read about it. Nobody wants to hear a parent say, 'oh, I didn't understand until I had kids, but I didn't. That kind of event is always tragic, and you always feel that sense of just how indescribably awful an experience it must be to go through. But I just didn't, and I don't think I can.

That image has broken me multiple times since I saw it, and I don't dwell on it. I swear I don't. But it's hard not to occasionally remember something that distils your most devastating and overpowering fears into a single image. All that extraordinary pain and anxiety that courses through my body every time she screams now has an image tied to it. The screams aren't just a traumatic reminder, although they very much are that. They also contain my most significant, powerful, and profound fears.

I worry about even talking about it now, like I'm jinxing something.

I have many flaws in my parenting…I think this is my most significant. But I'm still struggling to balance living my life terrified of bad news and trying not to let it affect me daily.