I don’t feel like I’m doing it well (is there a ‘doing it well’ after your child died?). I don’t think there is. Everything still feels so raw, and I feel like there’s the me who is here, and now, and there’s the me where my mind and heart are back when he lived. The two are overlaid. People look at me and see the former, I know that I’m existing mostly in the latter.
Anyway. Eight years ago today our boy had an EEG. He’d been having seizures before he was diagnosed and given Sodium Benzoate and Dextromethorphan (not that we knew it at the time. I took a series of photos that are, to my eye, knowing Kai, recognisably a seizure. He was only a few days old. I thought he hadn’t a seizure until much later, but actually… he was having them very early on. I didn’t know until this project, until I was able to look through and examine every photo. Oh bub. My heart breaks for the experience he had).
NKH is just the most brutal. Even when he was at his absolute best, he was still subjected to so many tests and ridiculousness. Oh bub. I also think I was sick this day, and couldn’t come and see him. You’re not allowed to be sick and come into NICU (though I’m 100% sure whatever it was came from the hospital. I’d been nowhere else). At 23 days, this enforced separation was horrific. ��This current enforced separation between life and death is also horrific, so much more so.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DB57OX3xD0p/
