The Modern Heartbreak

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Yesterday I read a starting guide to de-cluttering possessions, and the very first thing it said was to get rid of your pre-upgrade phone, because you won’t use it again. I scoffed, because I was reading said list* on my pre-upgrade phone (left) having annihilated my new phone (right) earlier this year.
I’ve already had the iPhone screen repaired, cracked it again, and have been keeping it together with a phone case and wishes. Today, half of the screen stopped responding to touch. The half that lets me accept phone calls and select the phone number pad. (And of course everything else that appears on that side of the screen.)
I can’t afford to fix either screen, certainly can’t afford a new phone, and am currently typing this on Jene’s pre-upgrade phone. (But get rid of it, you’ll never use it again, right? 😏) My nano SIM is too small for this one, so I’ll have to get an adaptor as a short-term solution.
And this is what I hate about smartphones. So much effort is put into how they look and feel, but then we have to keep them in big ugly cases just so this doesn’t happen? We’re human; humans drop things! The Sony even DID have a very basic rubber-edged cover (literally the ONLY one I could find in stock anywhere) when that catastrophe happened. I’m incredibly frustrated – with phones, with myself, with this truly First World Problem. Sure, I should’ve had insurance – our budget really is so narrow that the extra cost per month made me baulk. Especially since I’d lasted over three years without breaking anything.

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This kind of leads into what I’ve been thinking of posting about for a while but have been uncertain about sharing because… it’s pretty personal. If I can’t currently pay for something like this, why should I be even entertaining the idea of adding a child to complete my collection? The short and uncomplicated answer is, I shouldn’t. Do I have a long and complicated post about it? You betcha!

*The likelihood of me taking it seriously dramatically declined after that first bullet point. Another suggestion was turfing shoes you haven’t worn in the past two months. Because seasons and special events aren’t things, I guess? 

Boxed

It’s been over a year since I posted here – for a lot of reasons, but largely because blogging in this way seems to have become extinct. Blogs have become just another product to sell, and no one shares anything meaningful about themselves any more. I feel awkward sharing anything personal. 
Plus, this whole page is long overdue for an overhaul. The titular baby being brought up just turned 7, and the other one is almost 3.
But anyway, here’s this post (that’s been sitting in my notes for nearly 3 months).

I recently had to unpack several boxes from the ‘Issues’ corner of my brain. They’ve been there for a while, and I’ve looked at them every single day, wondering if I’d ever have the fortitude to pull them down and sift through the contents. Of course, much like literal unpacking, I tell myself, “I’ll get around to it”, and continue to step around them, so that eventually I get used to them being there. They might contain the clutter in a neat and neutral square, but there comes a point at which you have to ask, why – if you still haven’t touched them – are you keeping them?
And that point doesn’t typically arise from nothing. It comes when the boxes topple over, or you trip over them, or someone suddenly and gracelessly opens them (whether they realise it or not).
Ignoring is my usual way of coping. If I can’t immediately deal with something, then I pack it away and put it in storage, unlabelled, with pretty much no intention of returning to it. And I use this analogy because, it’s not the same as letting it go. I’m not ready to let it go.
It’s also not the same as compartmentalising, because the emotions linger.
Hey, I’m not saying it’s a good thing. It is what it is.

So, the boxes were tampered with and I had to open them. I had to vocalise what was in them, through ugly, angry, messy tears at first. And then, having unceremoniously dumped the contents, I could see it all more clearly. There was ‘don’t need it but can’t throw it out’ sentimental clutter.
‘I don’t know what this does but I might need it one day’.
‘I’d feel guilty if I got rid of this’, and, ‘not getting rid of this is making me feel guilty’.
‘This stuff matches with other stuff in other boxes’.
And so, so much stuff that doesn’t even belong to me. My god. If there’s one thing I’m good at, it’s appropriating problems; half of my anxiety is worrying on behalf of other people. I’m not even slightly exaggerating.

I can’t say I went full KonMari on it all. I thought I did. I thought after all that picking and sorting I was ready to throw most of it out. And I did throw it out. I even shredded some things, they were completely dealt with. But eventually I sneaked out to the bin and brought stuff back in, packed it in a slightly smaller box (maybe a little more neatly this time), and put it back in that corner of my brain.

I feel like I don’t recognise enough what a beautiful boy Devin is.
In the monotony, stress, and exhaustion of everyday life he often gets the short end of my patience. I’m too tired or busy to play his pretend games, too distracted to hear his stories, too rushed to stop and explain things properly.
I’m proud of him. Really proud. Not just because of all that he’s been through, but because he’s a great kid. I mean, there are the normal 5-year-old things – I often have to ask him many times to do something; he gets possessive when Miriam is around his toys; he’s bossy; he whinges – but he’s caring, he (eventually) does what’s asked of him, he can practice impressive levels of patience, he shares his beloved Boost juices with Miri, he loves being greeted by an excited Remy when we get home…
This year we had to… undo, I guess, a lot of the previous year. He’d become accustomed to getting whatever he wanted, having everyone’s attention, watching DVDs and playing games all day, and then suddenly there was a baby demanding attention, and he was back home, and starting preschool, and preparing for school, and meeting yet more new health carers. And honestly, it’s probably been me doing the most stumbling and fussing throughout it all. Isn’t that so often the way.
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I’m exhausted. I don’t really feel like writing about the banalities of our lives. Miriam is five months old and already has two teeth, for those of you playing at home. Devin is enrolled in preschool for two days a week, but so far has missed just about as many days as he’s gone, thanks first to three public holidays in a row, and now a mild but persistent cold. (Please, please, PLEASE don’t send kids to school or care when they’re sick. Or take unnecessary trips out of the home. This ‘must always keep going’ mentality of our society can cause much more trouble than a day off work for certain families – someone’s kid being sick for a couple of days has lead to Devin being sick for almost two weeks, and an increase in his chemo meds.)

I’m just going to post a bunch of the notes I’ve written to myself this year…

People are disgusting. They just are. You don’t realise how disgusting until you have a kid with little to no immunity against bugs. You become aware of every surface you touch – shopping trolleys, doors, handrails, elevator buttons, money – and of every sneeze, cough, sniff or cleared throat around you. But worse, there are people who will literally cough all over you and not give a shit. We were in an aisle with a woman who was hacking away, right next to us, and who then proceeded to pick up children’s books to peruse. Needless to say we moved along very quickly.
We can’t not go out. This is treatment that spans over two years.”

“I’m feeling cause fatigued. Green guilty. It’s a constant barrage of messages to eat this, not eat that; buy BPA-free but wait now that’s bad for you too; sign this to stop this injustice; and this; and this; and this; don’t shop at supermarkets, god, do you even care about your family and local community and this planet?; make your kids’ play educational; stop caring about your house and spend more time with your kids; more time – appreciate every second with them, damn it!; are you STILL eating food that’s been processed in some way?!; but stop judging people, ok?; boycott this company; and this one; oh you like this product? Too bad, boycott! …
Of course I want to live better, eat better. I want the world to be better. And my guilt issues are my own to bear, sure. But at the moment I want to tell the world to SHUT. UP.”

“Holy shit, if I see another person say something like, “Australia’s a lucky country, stop whinging about it”…
I DO like this country and I DO think we are lucky and that’s WHY I think our population deserves much better than this sleazy government. “

“It occurred to me yesterday, out of the blue, that if I had one completely self-serving wish, it would be to have no anxiety, awkwardness, hesitation or miscommunication when interacting with people, for any reason. That would open the door for so many more improvements and opportunities.”

“Lately I’ve been feeling like I’m struggling to cope with the realities of being human. Everything hurts. Everything is transient. Happy moments are sad because they will pass.
The pain of the last year is catching up. Or… changing. It’s not a sharp, unexpected sting any more, but a deep, melancholy ache. A permanent scar. I have not gotten over my father’s death and I have not gotten over my 3 year old son being diagnosed with cancer and maybe I never will – these are the events that give us depth as people, that alter the way we think and change the trajectory of our lives. Having a child is a happier instance of these formative moments, but also, obviously, opens the door for the most heart-wrenching ones.
Here is the truth. I can barely get through one day without fearing, dreading, my next life-changing event. People get sick. People get older. People die. Everyone dies. I cannot freeze this perfect moment where Devin is performing to make Miriam laugh. I will blink and when I open my eyes they will be at school. And I’ll blink again in disbelief and they will be adults. And they will hurt, too.”

I’m tired. Wait, I started with that. Oh, I don’t know what else to write. I am what I am and what I am is tired.

Five months

The following has been in my drafts for a long time, though I’ve adjusted the time frames mentioned to be up-to-date with now. I won’t pretend that the past few months have been ok, or that I’ve been a good partner or mother. September especially was a largely awful month for me, I just couldn’t pull myself up. But receiving some hopeful news about our accommodation, approaching Devin’s final protocol of intensive treatment, and drawing closer to the end of the pregnancy have all made me feel much less despondent than I was when I wrote this. 

Often when I tell people, strangers, that Devin has leukaemia, I’m met with an awkward silence. I could tell them that it’s ok, I don’t know what to say, either. I could tell them that I know, it’s completely shitty and unfair. I could tell them that really, he’s doing ok, and there are lots of kids in far worse situations and could you please save that look of pity for someone else, thanks.
But I don’t. I just let the silence linger, and wait for them to ignore the information, or stutter an apology, or say something odd.
I don’t begrudge them that.
My son has cancer. It sucks, and it’s unbelievable. It’s both harder and easier than you might imagine. Very often, it’s not the illness itself that causes the most distress, but the situations that arise because of it…

We are five hours from home and haven’t been there for twenty-one weeks. For the past eighteen weeks, we’ve been living at Ronald McDonald House, in a room smaller than a hotel room. We have our own bathroom, TV, two single beds and two trundle beds. Limited space for clothes. And that’s about it. The rest of the house is shared between eighteen families. This is not to complain or be ungrateful for the accommodation, but to illustrate what is the biggest strain for me – having very little space, privacy, and time away from people. I am never alone. Ever. I’m an introvert and I have nowhere and no time to recharge by ceasing social interaction. I can’t even have breakfast without having to greet at least one person whom I don’t know… While this place is as close to a ‘home’ as we have, it doesn’t actually feel anything like one, largely because it is always teeming with unknowns. There are relatively few families that live here long-term – most stay for only a few nights, maybe a week or two, and the rooms reflect that. I find many families not terribly respectful of the others living here, either.
Devin is actually doing rather well. He has already experienced a heartbreaking amount of awfulness, but he usually carries on as usual. Most young kids do.
It’s the parents who carry the emotional scars.

So many times I’ve thought, This is it, I can’t do it any more, I quit, I can’t take another day of this. So many mornings (more often than not recently) I’ve woken up feeling physically exhausted, emotionally spent, mentally blank, and overwhelmingly frustrated to find myself at the beginning of yet another day just like the ones before it. I feel like I’m not coping, but I’m still here and Jene and Devin and baby are still here so… what is coping, exactly?
Maybe more accurately, I’m not coping well.
I started to list all the reasons why but it was becoming almost farcical. To go to the other extreme and make it really simple, I feel like I’m being suffocated – by the House, this city, the pregnancy (oh man, it is hard this time…), my emotions, my anxieties, the monotony, the general pressure of being a parent of a leukaemia patient.
I try, I really try, to avoid worrying about the future, dreading the months we have left and the years after that, and to remain in the current situation. But time is moving so slowly, and the current situation is often one I don’t want to be in…

I sometimes read the phrase, “bloom where you’re planted”, which is lovely isn’t it, except the flower that receives little sunlight and nutrition is going to struggle to remain alive, let alone flourish and blossom.

We’ve been doing this for 143 days and I’m just tired. I feel bad when Jene asks me where I want to go (for the day, for dinner, for lunch…) and I reply with, “home”. That’s not helpful, no. But sometimes it’s all I’ve got in me.

From the frontline

There’s no real way to jazz it up with writing.

Devin was diagnosed with leukaemia two weeks ago. His type is Acute Lymphoblastic Leukaemia, or ALL. (As in, the universe decided to heap all the shit on us this year.)

We are in Sydney for treatment, and will be for some time. We are doing ok, under the circumstances. All three and a half of us.

Full story coming soon when possible.

Gone

I’m… uh…
I want to break my blog/writing drought. I might not make my living from it, I might hate it a lot of the time, but writing is what I do. How I communicate. Sort myself out.
I’ve been stalled for weeks. Months. Something always seems to come up. The irony being that my ability to get things out of my head is inversely proportional to the volume of stuff in my head.

Though I’ve wanted to write this post for at least a little while now, I’ve been putting it off. Because it will be hard, and I’m already getting choked up, I’m going to keep it fairly short.

In January, we finally moved out of my parents’ house and into the one they had bought for us to rent… to put it simply, and gloss over the two weeks of intense cleaning, sanding, stripping, plastering and painting to prepare the house. We had a lot of help from a lot of people, but often it was just me and Dad working our way through. It was an overwhelming month. I was physically exhausted and emotionally drained, still fighting with the tugs of guilt and the complete loss as to how to ever thank my parents. Eventually, we settled into the house, and life became calmer.

In April, very unexpectedly, my dad passed away.

He was about to have a completely unextraordinary operation to correct his deviated septum, and reacted badly to the anaesthetic. It took over 30 minutes of resuscitation for his heart to continue on its own and that, as we eventually had to discover, is too long for the brain handle. We spent five days with him in the intensive care unit before saying goodbye. I don’t know if I even have to say that it was the worst week of my life.

Over 400 people attended his funeral two weeks ago. Four hundred. To be at the centre of that mourning… I just…

There is so much I could, and want to, write. About experiencing and witnessing grief like this. About the effects on immediate and extended family relationships. About how little I ultimately knew about my dad as a person, and not just my father. But at the moment, though I feel I’m in a numb state between the initial shock and the eventual understanding, I just can’t. I can’t even think about these things. The thoughts get louder and louder and I can’t hear any of them clearly; they just turn into a big, barbed knot of sorrow.

We are waiting for some questions to be answered. He had had numerous operations under general anaesthesia before, with no complications. He’d also had no history of heart problems. We need to know –  particularly for the potential medical implications for me, my sisters, Devin, Dad’s brothers and nieces and nephews – what exactly happened.

In all honesty? I’ve taken my usual approach when it comes to unpleasant matters, and that is willful ignorance. I know it’s still there. I’m just choosing to keep the door closed. It will have to be opened eventually. But for now… I do the best I can, for everyone around me.

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