What we’re up to… November 07, 2024 at 10:45AM

On this day 07.11.2016. He was so tiny. I hate that we had so many days in hospital. We didn’t know how much we could advocate, we were still very new to navigating medical environments and weighing up the power balances of people we perceived to be in positions of authority (that all changed very quickly, when I realised that I was the one in the position of authority and that when I wasn’t, mistakes were made). That place. That time. Oh bub.

I miss him. With fierceness that hasn’t dulled, even though it’s been months (stab me now, with the pointy edge of reality. It literally couldn’t hurt more than it already does). Death comes for us all, and yet – some earlier than others. Since Kai’s died, I’m much more sensitive to other peoples news, it hits different to hear that someone has died. It’s hard, and it happens a lot, death. I think I knew this intellectually before (we all die sometime) but honestly, around 1500 people die every day in the UK. So many people. Anyway. Today I don’t want to explore what grief feels like (there are no words for the impossible and unacceptable).

I want to think about how beautiful he was. And how cute his chubby little hands were, and how even back then, he would make funny little vocalisations. <3 He became the centre of my everything, you know? He made us a family. He made me a Mama. He loved us, and we love him. I miss him so very much. #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit #fundraising #teamMikaere from Instagram: https://instagr.am/p/DCETi1MBu0B/