What we’re up to… November 28, 2024 at 07:02PM

On this day, 28 Nov 2016. This day was the first taste of what parenting a disabled child was like. It was navigating appointment after appointment, feeds and meds on the go, big fears (was that seizure? is that neurotypical baby movements or is that NKH? What was that?) and trying to find joy (read: often deranged optimism) in the things he could do (look! He wriggled himself almost off the couch! He’s moving independently and they said he’d never do that!)

I remember feeling overwhelmed about today. Pleased when we both got to the end intact, and everything was okay still.

Looking back through todays photos, there’s a series (not shared) that to my experienced eye now is clearly a seizure. It’s so in line with Kai’s seizure pattern, but if you didn’t know what his seizures looked like you’d miss it. I missed it, back then. It was subtle, a series of tightening, slightly odd movements. And yet… I didn’t think he’d had seizures back then. But he was. He was, and I wasn’t familiar enough with them to know.

Poor baby. Seizures at a few weeks old. He wasn’t even two months old, here. What a time.

Looking back, I’m desperate to hold every detail in my mind. To remember as much as I can. To fill my Mama heart with what I want and can’t have (my son, alive and well, and even though even here he wasn’t well, he was well enough to cry, to see and look at me, to sleep and to wriggle and to love. And be loved. So many photos not shared are us and friends loving on him so hard).

And I think that’s what matters, hey? That he was so loved. I miss this time. These days were long, but often it was just me and him. What a precious time.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DC7RI97xmwU/