Today we bundled our little guy up and went to see our metabolic consultant and to get bloods. It's been a while since we've seen our consultant guy, but I won't lie, I was disappointed.
NKH is rare. So rare. Our metabolic guy has a kajillion rare metabolic disorders to worry about, and we are one of many.
Originally, I wanted our metabolic guy to be our hero. To be the consistent doctor guy in a world of a kajillion consultants, the guy who would help us manage our NKH day to day, to slow any deterioration and halt the acute episodes, who would have all the answers to our questions.
He doesn't. He doesn't because there are no answers. He doesn't have a magic wand. He doesn't have the time or the energy. It's gotten to the point, where three months in, I as an NKH parent know more about how to manage NKH than our metabolic consultant. I am the expert. And I know this because he came right out and said it. While NKH is small segment of our metabolic consultants job, NKH is our life.
But I'm scared to be the expert. I'm overwhelmed with the enormity of it. I feel like I can't possibly know enough or be enough, that I will do anything and everything I possibly can for my little guy and it won't be enough. That he'll suffer because of my mistakes, because we can only move forward by trial and error now.
Like how my decision to go ahead with 8 week immunisations put kai in hospital. Or by not insisting on two weekly glycine bloods we had a six week hole where we were filling Kai's body with meds willy nilly, instead of with data and intention.
I don't feel worthy, or capable or enough to be the expert that Kai needs, and I'm scared to be the expert, and angry that our metabolic guy has been found lacking (not his fault) in what we hoped him to be.
Don't get me wrong, I will and have stepped up to focus on Kai and NKH. To read the studies and fight the kajillion consultants for what I think is necessary, but I'm overwhelmed with the enormity of what lies ahead, and I worry that I'm not enough. It's like needing a chainsaw to chop down an ginormous tree and all you have is a butter knife. That's how I feel about me being the expert, and I feel like even my best causes mistakes that cost Kai dearly.
To put it clearly, here is the massive tree: my baby suffers daily. He is not a normal, happy go lucky three month old. He has seizures that cause screaming fits and comas. We pump him full of meds that are painful for his little belly. He has a tube down his nose for feeding, and a needle permanently in his leg for 24/7 meds.
Even small developmental things: he doesn't smile socially, or babble. His gaze is odd, he can't hold his head up, he doesn't reach for things. Right now he doesn't even have a coordinated suck like he used to. And sure, with time, physio and help he may gain some of those skills but regardless, my baby has a rare metabolic disorder and suffers every day. My babies disorder is terminal.
Putting all the raw emotion out there plain: I feel too small, and too powerless to be his expert. I'm scared my best may not be enough for him, and I worry that he will suffer when my best is all he has. I worry I'm a butter knife when I need to be a chainsaw.
I know I'm not alone in this. There is a wonderful community of NKH parents on facebook. Some of them are crazy, and some have courage I can't even understand. But a lot of them are smart and amazing and they've been where I am. I know I'm not alone in this (I found my tribe) but that doesn't mean I don't feel all the things I do.
So. We went and saw our metabolic Consultant and I was disappointed. He is not the hero or expert I hoped he'd be. Turns out I have to the chainsaw hero, and I find myself lacking.
Edit: Sometimes when I think on this, I remember something that another NKH Mum said. I'm grateful Kai came to us, for a while there was a lot of 'why us?' but now I think of all the people I know, and how they live their lives and the choices they have made and sure, some of them I think could do what we do, they could live the special needs life and do their best by a special needs baby. But for a large chunk of people in my past, I think thank fuck Kai came to us and not them. Thank fuck.