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What we’re up to… December 03, 2024 at 07:13PM

By 3rd December 2024 No Comments

On this day 03 December 2016. Okay. We were new parents. We just were – over enthusiastic parents just pleased to not be in NICU, with our baby alive and mostly well and just – we were happy.

It’s impossible to happy, in the days of today. We have as status quo and we fill our days with distractions and jobs and focusing on the two small children we have to care for (but honestly, I don’t feel like we’re doing this well. The grief is too much, too heavy. This desolate grey heaviness that touches EVERYTHING.

We laugh and we have dance parties, but a large part of me is just that its all a clown mask. A façade of what it used to be like, in the before. In the after, nothing is okay, really. We’re navigating this time the best we can but honestly, who cares? What does it even matter when one of us has died? (This is clearly the grief talking, because I can remember when I cared. When life mattered. The face of that girl in that photo, she cared).

Anyway. We made it through another day, today. The thought of continuing on, with a forever number of days without our boy is unbearable.

PS Today is Giving Tuesday. Please watch the video and donate, if you’re able: mikaerefoundation.org/christmas

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

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