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What we’re up to… October 19, 2024 at 10:00AM

By 19th October 2024 No Comments

On this day, 19th October 2016. Kai’s 8 days old, and we finally, FINALLY got to feed Kai ourselves (via tube feeding). I remember this feeling like SUCH a parenting win, that we finally got to do something most parents get to do (feed their baby).

And because his temp was holding steady, after they put a cannula in, they left the top of his incubator off. While we still weren’t able to hold him, being able to be closer to him felt like a big deal. Being able to wrap our arms around him, nuzzle his cheeks and smell his beautiful baby smell made us feel better. These photos of the three of us, a new, tiny family feel momentous. Even though he’s not breathing. Even though we didn’t know what was wrong. Even though everyone thought he was on the cusp of dying, despite the ventilator. There was us three, together.

Oh bub. I miss you. I miss you the baby as you were then, and as the boy I held in my arms the morning you died. I miss you with an agony that I can’t explain, there aren’t enough words to explain the space you have left. And all this time, I thought I was supporting you, but I didn’t realise just how much you were holding me up, holding me together. Without you I am broken, half the person I was. You made me a Mama, and looking back at these photos, I loved you so very right from the get go. With an intensity that makes living beyond you feel just so very impossible. And yet, here we are. I miss you. Moe mai rā, Kaikai. Your heart inside mine, always.

Today is the last day I’m going to ask. In these photos, Kai is 8 days old. He would have been eight this year. He was eight and a half weeks short. Please consider donating £8 in honour of what would have been his eighth birthday.

https://ift.tt/SrDzEaB

#grief #nkhawareness #nkhcansuckit #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #glycineencephalopathy #cureNeeded #complexmedicalneeds #fundraising #teamMikaere #theMikaereFoundation from Instagram: https://instagr.am/p/DBTMciTpA-R/

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