I worry that I’m forgetting. Some things I’m okay to forget (the sheer amount of admin, fighting people for support, for more, the constant fear that he might be declining and heading towards death, the hypervigilance, ableism and inaccessibility, the support services that always assumed I was incompetent and just a Mama to a disabled child). Somethings I’m not, the colour of his eyes and how they changed in the light. His laugh. The way he smells when you cuddle him. How he felt when I cuddled him.
I think that he slept a lot. More than I show in this tiny glimpses. They felt neurotypical as a baby, but he slept the same, if not more his entire life. I feel like we didn’t land on what his body needed to keep him awake, to keep him well, to allow constant and continued engagement. Any moment of engagement felt like such a win, a laugh, a smile, before he fatigued back into sleep.
It’s a mixed bag, raising a disabled child. Living in the after right now is a fierce fight of trying to MAKE IT WORK. Every day, just trying to exist. Organising the things, showering, eating, smiling at the people who also out there, existing (or not, if I don’t feel like it). There is a lot of distraction happening.
I wish he was here, but I also wish with all my heart that he lived without NKH. I wish NKH wasn’t a thing. (I’m working hard to raise money so that it’s not). I wish I could relive these moments with him. To have more. We couldn’t have known that this year would be our last and honestly, it’s agony.
Just… agony.
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