What we’re up to… October 27, 2024 at 10:00AM

On this day, 27.10.2016. That day was a big day. When we came in, he was off the vent. Which is a surprise, I didn’t know they were planning to try, to see how he’d do. It wasn’t discussed with us before hand, we came in and he’d been downgraded to CPAP. We were elated, obviously, but Kai hated it. CPAP required a mask and it’s loud and theres a hat (which meant that he couldn’t have the CFM pins in, but also… he had scabs all of his head from them, so poor bub). And then, when we got back from dinner, they’d removed the CPAP. He was just on air. He opened his eyes, and was moving around more and just… this felt like a magical day. A day of hope.

Going slowly through each day of his life, intentionally looking at each photo we have (of the literal millions) and remembering. This day was eight years ago, and I still remember it. The surprise at the vent being out, then off CPAP, the tentative joy and hope and trying, for the first time, to wonder if we had a few more days together, maybe even weeks (I couldn’t, even then, hope for years). Going through each photo has been something to hold tight too, in the vacuum he’s left behind. He was here. He existed. And I love him (and thats why it hurts so much, because he is still, so very loved).

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit �#fundraising #teamMikaere #theMikaereFoundation from Instagram: https://instagr.am/p/DBn5qxeq9ge/