The thing is… his future with NKH just happened slowly, without my noticing. In the same way that neurotypical babies slowly develop, Kai didn’t. I didn’t know that he wasn’t, he was my first babe and I had no idea really what to expect. Instead, in these days I fretted and I worried and mostly I spent hours holding him and telling him how much I loved him.
It was easier to not fret or worry, and just enjoy him when Sam was around. Later, I’d enjoy the days just the two us. The luxury of it (especially when I figured I could block out days just for us, so we didn’t have to go to any appointments or talk to anyone).
I miss those days, now. The quietness of just us two, the joy. Finding things that would prompt a smile, holding still for a cuddle. In a few years, after we’d moved, I’d come to know the time by where the sun came in through the windows, because I’d be holding Kai and not want to move.
Now, when the sun hits that spot and I notice it, my heart aches for him. I feel like the last year past too quickly. He was at school and had siblings. I wasn’t even his primary carer anymore. No more luxurious afternoon cuddles. I miss them. I miss him.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds from Instagram: https://instagr.am/p/DCjH8rDO7L5/
