I suppose the thing they never quite prepare you for when you lose a child is the number of ways it keeps hurting, years after he’s gone. And I’m not talking about the dull ache I feel every time I see a boy who’s about the age he would be or when I blunder across an article about the advances being made right now in techniques to cure cancer, which always send me down a rabbit hole of wondering how things could have turned out if we’d only managed to hold off the cancer for a few years.
But that’s not what I’m talking about. That’s the kind of stuff I sort of expected in my darker moments. I think what surprises is the way that the reminders will come out of the blue. Like, you think you’ve set up your life so that you can control when the memories will come up and punch you in the gut. You schedule when you’ll go to the cemetery and you avoid making eye contact with the picture of him in the hallway until you’re mentally ready every morning to do so. I don’t look at photos of him unless I know I’m in the right mental space and, truthfully, I avoid talking about him when I’m in certain moods.
And then, the world decides to remind you that you’ve got a dead kid. Like that’s necessary.
A few weeks ago, Facebook alerted me that I had been cleared for membership in the group Family’s (sic) of children with Tracheostomy’s (again, sic).
Lord, I’d forgotten that I’d ever signed up for this group. Clearly, it would have been at some point between December 2018 when they gave him the damned tracheostomy and September 2019, when he died. Probably earlier in the process, when our biggest problem was how we were going to keep the trach in place and find a way to feed him without him noticing that the rest of us all still got to eat solid food.
God, the trach was a nightmare. It never fit quite right. How could it? He was 5 and it wasn’t as if he was going to sit still and just accept that one. He had a tube in his throat, so of course he hated it. And, even if he wasn’t thinking about it, until the cancer really took him down, he wanted to move and wiggle. He probably wanted to know why he couldn’t speak properly any more. He probably wanted to know why he wasn’t allowed to eat any more. There are so many parts to this that I can’t comprehend, so hell knows how it hit him.
I mean, as I type this, I’m at a café because we’re training to stay home by himself and, every time I leave him alone (an hour and a half today), he acts like I’m stomping on his soul on the way out the door. How can I explain to Murphy that some times he’s going to be left alone? I had the same chances of explaining to Colin that his swallowing reflex wasn’t working and he was in danger of a pulmonary infection every time he took food orally. I can barely think of the time without getting caught up in the emotion, because it was so stupid and horrible and never-ending, with each new doctor demanding a modification to the thing and Colin hating every one and every time the concerns growing that tissue was growing back incorrectly around the tube, and so on and so on and so on.
So, of course I wanted to know back in 2019 what was up. Except the group didn’t let me in until 2022. And now I get semi-daily prayers from the group (though a shocking lack of useful information) for children suffering like Colin. But I don’t need or want any of it. And yet I feel churlish if I shut it down. So, I just kind of squint at my Facebook feed these days, jumping ahead to the next article about comic book movies.
That’s the most striking blast from the past. Some of them are nice. A few weeks ago, Christina got rid of the kids’ old backpacks and, when she grabbed Emma’s, found it was full of mocked-up school books and supplies for Colin, apparently from a time when the two of them played school together. I have a hard time imagining Colin being able to play something as complicated as school, but I hope he had fun. If nothing else, it’s a nice reminder that my kids had a whole life and a way to cope with the nightmare that didn’t always involve us. And it’s nice to remember that we had a lot of good moments – and still do – before it all went to hell.
And then there are the surprises. I spent part of October 7 in a funk, but unsure why, until I remembered that it was the day of the Nobel Peace Prize. We buried him the day that prize was issued in 2019. I had an argument about Greta Thunberg at the breakfast table that morning. Can you believe that? Arguing about a Fridays for Futurer hours before I bury my son? And there you go, the Nobel Peace Prize is now a tainted day in my lifeline.
I imagine the next surprise memory is already lurking somewhere in our house or online. None of them knock us over, or at least none of them knock us down to a point where we can’t get back up. But the last three years have been a never-ending process of getting knocked down and learning to stand again. I suppose, if nothing else, we’re getting good at it.
<3