What we’re up to… November 04, 2024 at 10:00AM

On this day 04.11.2016. Oh. I remember this day, where things felt like they were beginning to calm down. Kai was okay, breastfeeding like a champ, appropriate awake/sleep cycles. But despite the calm, living in NICU, being separated from him at night was beginning to wear really thin. It was hard, gruelling. Having to leave him to go home and eat, shower and sleep. God. Leaving your baby to the care of strangers, when it’s their job (and not their baby) is just – fuck me. I don’t know how I did that.

I also resent it, now. Having to leave him, when there were still moments I could have had with him. It chafes. That time with him was precious and that some of it was wasted genuinely irks. I understand why, I understand that logistically you can’t have parents room in in NICU. But fuck me. Being apart because of logistics was HARD.

There’s something to be said for throwing my feelings at the internet. For sharing my feelings so honestly. There are probably healthier (less public) ways of managing grief, but god. I miss him on my feed. I miss thinking about his future and what I can do for now and I didn’t realise how much of a drive that was in my day to day. Without it, without him, my days are less. There is less purpose to my days, now. 💔

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DB8gCOYPE7v/