But anyway, here’s this post (that’s been sitting in my notes for nearly 3 months).
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.
I’m not a crusader. And I’m not a crusader parent. Obviously I was thrust into the previously distant world of childhood cancer, and came to know a lot of things that I wish I didn’t have to know. This kind of thing is so often the catalyst for people to dive head-first into raising awareness and funds, for supporting similar causes, for attending events, for keeping up with news in the field.
I cope with things by… well, ignoring them. I follow some pages on Facebook, I flick through the Chemo Chronicle that CHW sends us, but I find it difficult to go much deeper than that. Maybe because I was so intensely immersed in it only recently. Maybe because the underlying driving force for our family life at the moment is ‘keep the cancer away’. The ever-present unspoken. It doesn’t need to be said. It’s just there. It will always be there. One parent wrote in the CC, “I can imagine myself on Thomas’ wedding day putting my hand on his forehead to check his temperature! It’s just hard not to worry.”
Maybe because I’m lucky enough to be able to ignore it, to be able to call it ‘underlying’. Goodness knows, I know. I know.
By the way, hey, blog. I’m so drained that I’m struggling to finish this. Each word is… being painfully extracted from my brain. I think it’s time to accept that this is just not where my head is at right now, and for the foreseeable future.
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.
It’s been a while, I’m finding it difficult to write, but things are going relatively smoothly. I started this draft almost six months ago, so here’s my timid return…
Last year Devin was given the opportunity to make a wish, thanks to Starlight Children’s Foundation. It was actually a difficult concept to explain to him, and a lot of the popular wishes (holidays, computers, meeting favourite celebrities) kind of went over the top of his 4-year-old head. Something he’d repeated regularly, though, from pretty much the time he could speak in sentences, was that he wanted a dog.
We’d been talking about it before he got sick, and despite our situation being considerably different, we eventually (about six months after Dev was approved for a wish) decided we were prepared to take on a puppy, if Devin so… wished.
He did, and after a few weeks of communication with our coordinator, Nicola, Devin was presented with a lovely little Cocker Spaniel puppy. Jene had thought of some name options, and Devin chose Remy. Our local Petbarn also donated a credit account to their store, as did Duncan McGinness Veterinary, which was a lovely surprise.
Now, we weren’t expecting it to be easy, but in hindsight, having a puppy and a six-month-old baby at the same time was particularly ambitious. In fact, I think a puppy is harder work than a baby for those first few weeks. There was strain. Jene had majority responsibility of Remy, I had majority responsibility of Miriam… for a little while, I thought it was a mistake. But, of course, things got easier, and Devin and Remy love each other. Miriam and Remy are a little troublemaking team, which is as cute as it is frustrating.
The writing gears are rusty and I’m tired, so I will leave you here. If you haven’t already, please have a look at Starlight, they’re a fantastic organisation that does so many wonderful things for sick kids.
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.
… We are home. When I was given the diagnosis, I was also told it would require five to six months of treatment in Sydney. Obviously now I know they can’t possibly account for things like ongoing low blood counts or a three week hospital stay for, essentially, a cold, but for a while it felt like we’d never get back. And actually, once we’d settled into the self-contained unit, it felt normal to be there. And comforting, in a sense.
Being home is weird. It feels both satisfyingly familiar, and like I’m living someone else’s life. And in a way, I am.
The house we walked into three days ago belonged to a carefree three-year-old and his somewhat angst-filled but generally ok parents who were dealing with grief, gout, financial stresses, and a new pregnancy. The house did not belong to an embattled four-year-old, his weary and heartbroken (though gradually repairing) parents, and his completely fresh and innocent baby sister.
It’s simultaneously like being warped back to June last year, with extra memories, and like I’ve missed a chunk of my life. I don’t feel connected to the stuff here. Or maybe I do, but it’s all a painful reminder of how much has changed in such a short time. Either way, my instinct is to get rid of it. I know that would be a silly thing to do right now, so soon after arriving home, but this is how I currently feel.
We knew it would be tough to be home, and we were gently reminded that things may not be easy – I’m aware of what I’m feeling and why I’m feeling it, but, much like the post-baby blues, knowing doesn’t make it hurt less.
It’s just a matter of being patient.
Anyway! On the lighter note of Dubbo wasting no time in displaying its Dubbosity since we’ve been back, I went to the sushi place that we once frequented, only to find their chicken katsu had been renamed ‘crumbed chicken’.