On this day he was trialled in a carseat, because they wanted to send us across to GOSH to meet Kai’s metabolic consult. He had to sit in it for 30 minutes with no desats, and he was fine.
Look how small he was, and yet still so wildly determined. In these days, after the trauma of the vent but before any other symptoms showed up, when I was just getting to know him, to know what it felt to be a Mama, it was a relief to be able to love him so deeply. In the hospital, in NICU there was such a vivid focus that was just him and my heart pick him up and nestled him in there in a way that I’d never really experienced before (and now that same part of my heart is torn, it’s in shreds, so completely broken now that he’s not here).
I’m beginning to forget things about him. It absolutely kills me that I’m forgetting. The way his hair feels when your run your fingers through it, and his funny little vocalisations and shape of his chest and how he folds his legs.
I don’t remember this day eight years ago exactly. I wish I did. I wish my memory was perfect and that I could have never forgotten any moment or instant of his life. It’s a comfort that we have so many photos. That we can flick through them. I’m making an album, year by year. 2016, up to this day (the 9th of Nov) is already 332 pages long. The bulk of that was the last 30 days, since he was born. It makes sense, I guess.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DCJX_TINwLg/
