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What we’re up to… November 16, 2024 at 06:00PM

By 16th November 2024 No Comments

On this day 16.11.2016. He was just the most beautiful baby, wasn’t he. That faaaaaaace. I want to squidge it. Today was about figuring out what to do with ourselves. This was before therapy and before I was brave enough to go to classes. It was cold, too. While we were in NICU winter arrived. I’m not sure we even went outside.

I look at these photos and I can see my parenting newness – letting the baby sleep on the couch (which I would never do now with neurotypical babies, who roll and squirm) or the way I’ve covered him in so many blankets (why does he need so many? And inside?) and even in the sling, how he’s not upright, nor close enough to kiss. I was a new parent, figuring it out.

Now, eight years on, I’m devastated that the boy who made me a Mama has died. That he’s not here to love on, or hold or to hear. I miss him. I miss him in a way that claws at my insides, that screams in despair, so loud, silently, on the inside. I understand why women wail in their grief, and all of me wails too.

It still feels new, this grief. This part of parenting, wearing this agony, this despair every day. Smiling and keeping it light hearted with my babies, with strangers, knowing that on the inside, my large segment of my heart has gone to the otherside with my boy.

Onwards onwards onwards. I can do hard things (and surviving this heavy, weighty grief, holding it tight – it’s a hard thing). Someone once mentioned about ‘letting go’ but I think they misunderstand how love works. I can’t not love him, and grief is just love. It hurts because I love him and he died. The idea of ‘letting go’ also means letting go of love, and I don’t think I’ll be doing that.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds from Instagram: https://instagr.am/p/DCcQfRvvI0S/

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