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.

Dev and Miri

I found this draft from November 2014, and it’s still accurate eight months later. Miriam is 18 months old now, and walks and runs everywhere. Devin is coming up on 6, and doing quite well at school (though he still doesn’t talk). They love each other and have recently started playing quite well together, now that Miri is slightly less susceptible to putting absolutely everything in her mouth.

Let me tell you about Miriam. She is adorable. Unbelievably cute. She attracts gushing and cooing like a magnet of adulation, every time we leave the house. She is also unbelievably squirmy – she used to give me a good battering from inside, and just as I predicted, she’s been no different on the outside. Just always moving, not necessarily in a mobile way, but in a… slippery eel kind of way. She finally started crawling after the 10 month mark, but just like Devin at the same age, she crawls predominantly to get to things that she can pull herself up on and use as walking aids. (Often, our hands.) She would also happily crawl straight off the edges of things without a moment’s pause if we didn’t stop her.
She’s rough. My goodness, is she rough. Pinching, biting, scratching, pulling, whacking… Not maliciously, of course, but she doesn’t seem to have a soft mode. She’s either ‘off’ or ‘tough’.
Nappy changes are so difficult, she absolutely hates them. I’m sure most every parent can identify. I can’t even distract her these days, because even as she’s laughing at me blowing raspberries in her tummy, she’s trying to flip over and crawl away. And when she’s stopped, she yells. Not crying or shrieking; yelling. It’s a stark contrast to her very cute and lilting speaking voice. She cries when she’s hurt, or wakes up disoriented in bed, or when Daddy tells her sternly to stay away from something. She shrieks when she’s playing (hospital corridors are very good for playing with high-pitched echoes…) She yells when she’s grumpy.
She’s watched us use hand sanitiser so much that she only has to see the bottle to start rubbing her hands together. She waves goodbye, and sometimes will hold a hand out in front of her as we’re walking, palm up, in a ‘what’s going on?’ kind of gesture. She LOVES sparkling water, loves drinking with straws, loves trying whatever anyone is eating.
Her favourite person is Devin.

Let me tell you about Devin. Oh, man. Firstly, his hair attracts as much attention as Miriam does. I’ve got my own little travelling circus when I’m out with the two of them.
All that attention is kind of hard, because he doesn’t talk to anyone except me, Jene, Miriam, my mum and my two sisters. That’s it. Everyone else would be lucky to get a nod or a wave. I’m sure it has everything to do with his experiences over the last 18-ish months, and it does weigh on my mind. I have to speak for him, knowing he’s not going to (many long, awkward silences in the past), all the while feeling like I’m not actually helping him by doing that.

He can be clever, but he’s easily frustrated, and easily defeated. He stubbornly refuses to learn things. But, he will often try them when he’s alone. He’s yet to take that initiative with numbers and letters…

He loves Lego, and frequently surprises me with what he builds. He is, much to my disdain, rather obsessed with ‘gun shooters’ – if something isn’t a gun, chances are, he’ll make it one. Mind you, these ‘shooters’ usually fire jelly, or, I don’t know, sharks. And he also loves playing doctors, and superheroes, so..,

His most favourite show is probably SpongeBob. He loves a lot of shows and movies, though the one I find most unexpected is The Jetsons Movie, from 1990.

His favourite song is Outkast’s Hey Ya. His favourite food is pork ribs – he could probably eat more than Jene.

Most mornings, the first thing he asks me is, “does Grandma have work today?” He goes to her house on weekends, and gets the true beloved grandchild treatment.

Sometimes, he’s quite sensitive. Sometimes, he must feel like all he ever hears is “not right now, Devin” “I’m busy at the moment” “maybe later” “please find something to do yourself”… Or just outright, “no.”

Sometimes I go to bed feeling so guilty that I didn’t take the time for him that day. Sometimes I just want to hold him and tell him I’m so sorry that he knows more about hospital than he does about playing with other kids, and I’m so sorry his baby sister arrived and divided our attention at a time when he just wanted us.

The good fight

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.

He even got his own personalised name tag.

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.