This day was a quiet one, just us three (and I love that, our wee little family). It was finding our rhythm with the feeds and swaddling him to get the awful meds down (ahhh sodium benzaote!) and it was learning when we should sleep, while also being terrified that if we slept we’d wake up and he’d have died (a genuine possibility, so you know). We ended up sleeping in shifts, or just dozing. We were still on the high of being together, so anything and everything felt possible (in a few months this would cause extreme sleep deprivation, and we’d end up getting overnight nurse support, but right now I was just squeezing sleep into moments here and there).
Today… I’ve slept more than I ever have before, because I slammed my body into being busy since we visited Kai’s grave. And I know I’m doing this because when my mind is quiet I’m still heavy with the moments he died, the moments before the moments after. The grief is debilitating, heavy and keeping moving is a way to break from that. And after three days, my body crashed and I slept for over 12 hours (no small feat when you have two young ones).
Anyway. Learning how to navigate grief is a thing. I’m still just trying to get through the days (I find it hard to focus, half doing one task before I’m distracted by another, I feel like I’m midproject on so many different things). Anyway. No judgement, just trying to get through the days. Conveniently the days happen regardless of what I do, so I feel like the bar for managing is low.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DCTi0J_xMps/
