600 days in
Tomorrow will be 600 days since Wesley’s diagnosis, with about 250 more days of treatment to go.
I haven’t felt much like writing about it lately – not since we went into quarantine in February – but it’s still there, every day. We worry, check for signs, and live under a cloud made even darker during this pandemic. He takes drugs every day, spends a week at a time jacked up on steroids, and is sedated for a spinal tap every month, so there is no real normal to return to even if we could. He deserves so much better. So does his sister, his mom, and me.
His treatment ends, if all continues to go well, next spring, and it could be months more before he’s really back to anything like health; if there’s a COVID vaccine it’s not clear when he will be able to have it, but spring of 2021 seems the optimistic best case. And, as we know all too well, there are no guarantees for the future – any day we could wake up and it could all start over again, as it has for too many kids we know.
600 days of this is traumatic for everyone involved, this I know. Earlier, my feelings flowed easy, like water, but these days, when that valve opens at all, they seep out like molasses. Last month I had a hard cry, but most of the time it’d be impossible to function if we consciously reckoned with the situation, so our brains protect us, closing the tap, storing it all out of sight in the subconscious. The problem, of course, is we never get rid of it, we just save it up for later.
250 more days seems impossible, but we’ll do it. We’ll wake up every day and hope, just below the threshold of conscious thought, that his temperature stays in the right range; that he continues to eat and grow; that he doesn’t get hurt, or infected with COVID-19; that those bruises are just from horsing around; that social isolation isn’t fucking him up in ways we can’t undo later; that we’re giving Ruthie enough of, and the right kind of, attention; that she’s not growing up in the shadow of cancer herself, won’t grow to resent him for our doing what we have to do.
When it’s all over, how will we possibly transition back to a normal life? What does that even look like, when this has been going on since he was barely able to walk?
I am grateful every day for his relative health; for getting to spend so much time with him, for getting to see him develop until a beautiful little being in spite of the terrible indignities he’s had to endure, and someday I hope we’ll all get to put this behind us, and that we won’t have to talk about it unless he wants to.
