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.