What we’re up to… November 24, 2024 at 05:00PM

On this day 24 Nov 2016. This day was spent mostly looking at this face. Something was definitely happening, I think I was processing the trauma of those first few weeks, because I remember this time being really, really impossible. I felt fragile and not really sure how to manage. I was functioning for Kai, but not necessarily for anything else. These days were hard, I think. Building up the resilience to living as a parent to disabled kid felt like a never ending endurance race.

We didn’t do anything, this day. We stayed home and loved on him. And yet, I remember it being like an emotional marathon with no end.

Today – same. Grief is like an emotional marathon, never ending, and yet you are still propelled forward. Things just keep happening, the day rises and you have to eat and there are jobs that need doing and just… everything keeps moving onwards. (The despair and sadness that this brings, the idea of moving onwards without our boy is just unbelievable and impossible and HOW are we meant to just go on with this, like this forever? (I know how, I don’t like how). I hate today. I hate all todays where my boy is not here).

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit #fundraising #teamMikaere #theMikaereFoundation from Instagram: https://instagr.am/p/DCwv_ORK0Qj/