And then we took him home. We got out of the hospital and TOOK HIM HOME! The dream of every NICU parent, and I feel lucky that we got these days. Not every NKH parent gets to leave NICU with their baby in their arms. And we did. Thanks all the powers that be, we did.
In the today… there is still a space where he should be. Those medical professionals who we met this day eight years ago, after years of weekly calls and emails, are silent. My phone doesn’t ring anymore (and if it does, I don’t feel like I need to answer an unknown number like I did before). I’ve started, slowly shifting things in our house around. Donating somethings, moving other things to drawers. Sometimes I put them back because I CAN’T but some things make it to the drawers and some out of the house. It feels like we’re shifting into his space and it’s so hard. There are places I don’t want to go, because it would mean going there without him and I just… I can’t. We’re doing lots of new things, that we couldn’t have done (because accessibility) and that feels hard, too. Everything feels hard, and my heart, I miss him. I miss him I miss him I miss him in a way that doesn’t stop. I don’t have beautiful words, I have a mix of messy grief that is all over the place, all the time. A façade on the front and tears and agony underneath. (Don’t talk to me about grieving openly because that means taking on other peoples emotional response and I don’t have the capacity. Privately is easier).
Another day without Kai. I don’t have words for awful that feels.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DCXbgyJBmou/
