We had visitors and honestly, it was the most wonderful thing to finally be able to share our baby with our loved ones in a positive way. There was still screaming in the witching hour (which I’m still convinced is SB related pain), but mostly he was wonderful.
Mostly, in this time, I was terrified of the unknown, of what I didn’t know. Of what symptoms would look like (and please – may he never have symptoms, may they be mild, may everyone be wrong and may he be absolutely fine). We had to create an End of Life and Care directive, which actually, those initial conversations helped us form our thoughts on what we wanted for him over the years. I’m glad we had them, but at the time they scared me because I wanted him to be FINE and not think about him dying imminently.
Some of those decisions influenced his actual death, eight years later. We spent a lot of time thinking about quality of death. I don’t know if there can ever be such a thing as a positive death. A kind death. A painless one.
Death happens. And I think it’s harder for those who have to live on than for those that die. We went up to Kai’s glade yesterday. It was very very hard to leave him. So very hard. I miss him. I can’t even explain, despite all the posts and all the words just how deeply excruciating it is to live when he does not.
I thought that, having had years anticipating his death, I would have accepted it, and understood it, processed it more than I have. But you can’t, you just can’t anticipate what it’s like to lose your child unless you’ve lived it. It’s agony.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DCRGZhGuOxe/
