I think I also started dipping my toes into the NKH groups. I was wildly intimidated, especially because my experience of disability was so limited. And some of the older kids were so very profoundly disabled, in a lot of pain, and were dying. It scared me. I didn’t want that for my small, sweet baby, and I just… I couldn’t imagine living that life.
If I had the chance to reach back, it would be to say what I say to almost every newly diagnosed family we meet. That there are moments of joy and happiness, too. That being profoundly disabled doesn’t change who they are, they’re still your wee babe, who you will love so very much.
Today we met a family whose child died 5 years ago this year. We met them at hospice, way back then. When I was asked how I was I cried. Up and down, I said. I said that I couldn’t see it getting easier. The response was that it would, one day. That there would still be ups and downs, but that it would get easier.
I thought that was kind, the promise of easier. I don’t necessarily believe it, from the depths of despair, where I stand. I genuinely can’t see how I can love like I do and not be in genuine despair over his death. My days are less when he’s not here. I’m doing more, but it doesn’t feel meaningful. It feels like distractions, like if I’m busy enough, occupied enough that my brain and heart won’t notice that my heart hurts.
I miss him. I miss him I miss him I misshimImisshimImisshimImisshimImisshim.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds from Instagram: https://instagr.am/p/DCfDFA8Ravf/
