There were so many things I was trying to line up for him, with the support of his team. The Keto diet. A reduction of DXM and potentially SB. Was I too slow? Would it have made a difference? The second guessing and wondering is like a squeeze to my heart with every thought.
We constantly were trying our best, but honestly – I feel like my best wasn’t couldn’t enough. I was a great Mama, and I advocated and I read all the things and asked all the questions, I fought for care and chased down every last little thing I had capacity to do. And yet… I still feel like there should have been more, that extra something that I was incapable of delivering. (Please don’t comment and tell me that I shouldn’t feel that way – I don’t want to hear it. I know that everything thinks I was a stellar Mama and I was great and ad finitum.) The truth us I DO feel this way. I do feel like he deserved more and better.
To that one person who wanted to tell met that ‘screening and prevention’ would be better and used “in your words – he deserved more” as an insult with an intention to harm, I still think him living with NKH is better than him not living at all, and I still think that yes, every kid in a vulnerable situation deserves more. Kai deserved more joy and less pain. That’s not what he got, but it’s what he deserved.
One day, kid with NKH WILL have more. They will have a life without seizures and dystonia and be able to communicate with words, and not just their facial expressions. Honestly? One day a diagnosis will be no big thing, it will eradicate the need for screening because having a diagnosis like that will be irrelevant (I dream I dream I dream. One day).
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh # #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DC3uToDi0Bh/
