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What we’re up to… November 29, 2024 at 04:58PM

By 29th November 2024 No Comments

On this day 29 Nov 2016. We met up with our NCT friends today eight years ago, a nice moment of normality. I was so jealous of their meet ups when I was in NICU, and so experiencing it for myself with my own beautiful babe felt like such a luxury. But there was also that anxious scanning comparison between their babies and mine. What was different? Could you tell he had this awful disorder?

I remember the not knowing being so hard. Not knowing what our future held, the terrifying idea that he could die at any moment (today? Tomorrow? Next week, month, year?) and trying to anticipate that genuinely did my head in.

There’s something about being on the other side of NOT holding that fear, because the worst has already happened. He’s already died. I wouldn’t call this feeling relief, but there was a definite loosening, of trading one emotion (the fear of it happening) with another (the agony of grief).

This side is not better. The other thing that has happened is that my relationship with death has changed. No longer is it this thing to be avoided at all costs. I have teethers, in my two other sweet babes but honestly, if the universe was to decide that today is my day, I’d be like, okay cool. I don’t know what happens on the otherside, but Kai’s over there. The idea of going where he is is not awful. There’s a teether from my heart to his, a taut balance between his siblings here and him there.

I don’t know what the next forever holds, but it can’t be worse than this, here and now, without him. And I know – that this seems all very melodramatic, and the me of before would be rolling my eyes so very hard, but I genuinely can’t explain the depth of what I’m feeling. The grief of having your child die, the excruciating agony of it, all the time. My every thought is him. Every day, all day. Kai kai kai kai kai kai.

A friend whose daughter died told me it does get better. I genuinely don’t believe him. There is nothing to change – Kai’s already died. How could it ever get better?

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DC9nuTvxQSN/

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