What we’re up to… October 20, 2024 at 10:00AM

On this day, 20 Oct 2016. Looking back at these is so hard. I remember the literal hours sat next to his incubator, listening to the ventilator beep and syringe drivers alarm and watching his HR/RR/Sats change, trying to figure out if the CFM is showing whether he was awake, or asleep or seizing (as if a layperson could read CFM results at a glance). Trying to surreptitiously read the nurses notes. I was still recovering from the birth, and I was exhausted and still, I couldn’t bear to leave him. It was as if my heart was now tethered to his (and now, all these years later, I know that it is. Still).

He’s only 9 days old in these photos. He was so teeny. He hadn’t opened his eyes since birth. I think on this day… I think it was a bad one. He’d lost his gag reflex, no such reflex, no breathing over the vent, more seizures. I think this was the point they started trying to prepare us for his imminent death. It felt inconceivable at the time (and if I’m honest, the idea that he’s died is still inconceivable today).

On this day I wrote “I can’t imagine a world without him in it, and I desperately don’t want to. He’s so perfect and beautiful and oh my little man! The world couldn’t possibly continue spinning if he wasn’t in it.”

How the world is still spinning today is beyond me. I’m still back in August, when he was here and well and with us. I don’t know how to be in this future without him. I keep talking about how this is agony, how being without him is excruciating. Those words don’t even begin to explain what this feels like. I feel like I’ve lost something vital to my existence. The words “I miss him” are like a teardrop to the ocean, with the depth of what I feel.

Oh bub. I feel like NKH has stolen so much from all of us. The world is less without you x

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