From the time we got to the hospital till the time we were kicked out to sleep and shower… we were wildly committed to Kaikai. Parenting him, breastfeeding him (!), changing his nappies and doing his obvs and holding him while he slept. Taking a million photos of his beautiful face. Gently researching NKH. It was… hard. It was very very hard.
Not as hard as now, though. Right now we’re on holiday with family, and it’s beautiful. And yet, I’m still crying in the dark, by myself. In the moments where no one can see. Taking deep breaths when someone comes around the corner to still my racing, broken heart, blinking my tears away under my sunglasses.
And I think that it’s not that I can’t cry openly (because I could, if I wanted), but also having to take on someones response is more than I have capacity for (and people are kind, and tend not to cry someone who is crying).
My heart hurts without him. I didn’t think it would be like this, I thought that it would be hard but manageable, because he’s not in his broken body suffering in pain with NKH. This instead is wildly unmanageable. I miss him. I’m sad for every photo I take of my babes that he’s not in. That we’re here experiencing things (halloween! dance parties! Swimming) and he’s… not here. Terribly, I wish he was (I wish I wasn’t a carrier and had never given Kai NKH in the first place. I wish NKH wasn’t even a thing that anyone had to experience. I wish I wish I wish…)
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DB0Up_aIXSJ/
