It’s short, but looking back – this was a wonderful wonderful day. Being able to see his sweet face, to cuddle him without tubes (only the sats monitor, which I quietly just… turned off and disconnected). I was still living at home, and our boy was still in NICU (which is awful). This time of good felt fragile and new, and it was hard to trust it.
Looking back – I’m glad there were good days. I’m glad I got to cuddle him and love him and just… I hated leaving him. I still hate leaving him, walking out of his glade is still hard. I still miss him so very much, I cry still. Every day (in silence, in the quiet moments where people can’t see or hear or intrude with their need to make you feel better for something that will never feel better).
Kai died. He died. The visceral horror that is this experience, where I live when my boy doesn’t is soul crushing. Affecting everything I do, and it makes me feel emotionally fragile and taut with wrongness. The earth is still spinning and we’re just… pulled through. What even is time? What does anything even matter anymore?
Living has never been so hard. If I could, I’d step back into these moments. Just… I’d go back, if it was a thing I could do. To cuddle him, to hold him and love him and not… be here in this reality without him. I imagine this is a thing people in my situation all do – wish for the going back. It hurts to know there is no going back, and only the dreary forward in which he does not exist here, with us.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit � from Instagram: https://instagr.am/p/DByM3OMxJqE/
