On this day, 30 Nov 2016. I am nervous. I know what is coming, because it already happened eight years ago. We’re coming to the end of the honeymoon period. That time when it possible that it was all a mistake, when he was the best he ever was. Focusing, following, eating, vocalising, being on point with all his baby milestones.
I’m not sure how I feel about this project, now that I’ve committed to it. I thought that I’d just try, and see how I felt. Is this helpful? I don’t know. The gentle examining of Kai’s every day of his life… of examining what I remember of then, of what I feel now.
Mostly, there are a few things that are true of then, and true of now. I love my boy. I hate NKH. I’m working towards an NKH cure. He was here. He is loved. And he matters.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DC_csulsSM8/
