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What we’re up to… November 02, 2024 at 10:00AM

By 2nd November 2024 No Comments

On this day 02.11.2016. I’m slowly, gently making my way through our photo memories, looking at every single one. Today makes 22 days in of 7.8 years… There have been literally hundreds of photos taken every day, particularly in the beginning when we thought we were only going to be graced with days.

The idea that there won’t be anymore though? May all the powers that be strike me down, because that kills me. How am I still getting through these days (I’m not, the days just happen regardless of me and my heart). I do the day, and all the things that are asked for me, and underneath the very thin veneer of ‘its fine everything is fine this is fine’ is depths of NOT FINE. I am not fine. Ironically, after years of Kai being not fine, I’m really hopeful that he IS fine, over there on the otherside.

I read a book once where the protagonist dies at the end of a very long quartet about his life. It was a historical fantasy, and they called the otherside the ‘Deep Fathoms’. Anyway, our protagonist dies and then we’re immediately transported to the Deep Fathoms before the book ends. That last page, maybe 300ish words brought me more comfort than anything else, because the idea that you could die and you could go to the place and your loved ones would be waiting and you’d be fine was genuinely a happy ever after I wasn’t expecting (there was also magic so once a year his wife could visit, but whatever). It was more straightforward than heaven, without the complexity of religion or judgement or whatever. It was fine.

I hope it’s all fine. I remember on this day frantically trying to google what NKH was, what our future looked like. With my baby who looked like a normal baby (I thought maybe the doctors had it wrong? They didn’t, but I was hopeful that our boy would be fine. Sometimes he was, even with NKH).

Anyway, on this day I cuddled and loved on my baby. I wish I could do that today.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DB3WaviBrdP/

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