It’s the day after and the stirring silence from friends and family is an indicator of the fear leftover from election night.
But I have to put that away right now. Because my son needs me. I want to rant and rave and be pissed then take a deep breath and say ok, I’m moving on, staying in track and fighting harder….but all of that noise doesn’t matter right now in this moment.
In this moment my 3 year old lays sedated with wires glued to his head and a bright computer monitor with scriggly lines all over it. Repeated fluctuations, moving at a constant speed….this goes on for an hour and a half.
I’ve choked down tears three times already. Once when they put the IV in, again when I sat waiting for the doctor and my sensory sensitive kiddo kept trying to rip his IV out, and again as I held his screaming flailing body fall to a deep medically induced sleep.
Feeling your child go limp is not fun even when you know it’s for his own good and part of the process.
Our boy is not a lab rat. We are not a case study. We are human. I know that, the doctors know that, my friends and family know that but that’s what this feels like. Every assessment we get watched through a window, every time we review and repeat the family history, every time I have to think about those quirks he began as a baby that were much more than quirks. every form I have to fill out, and every observation made, I’m made to feel like a science experiment.
He is not a lab rat but here we are in this most unnatural environment as I sit and watch my son sleep heavily with red,green, blue and white wires attached to his head. I’m googling what a normal EEG should look like. But I’m not a neurologist and am too tired to pretend to be.
And then the reality sits upon me, we are in this new world packaged in a dark cloud of hate, racism, fear, and everything else bad with this country. But I don’t have time to complain. I don’t have the energy to focus on negativity right now because I have to use it all to fill up my hope tank. Hope for my son, for my other children, and hope for the rest of us.
I won’t give up on Max. I won’t give up on you. I won’t give up on this country. We’re great, or we can be anyway. But we need work. Lots of work. And I do look forward to a greater tomorrow, but one that benefits us all. Because we all deserve that dream. No matter what life hands us we have the right to dream and work for a greater tomorrow. And we have the right and responsibility to help each other do that.
I can’t open the flood gates of fear right now, because trust me, the thoughts are there
“what happens if the Affordable Care Act IS repealed, and preexisting conditions comeback into play and Max’s autism is seen as a preexisting condition and we have to pay even MORE money than we already do.”
“What if we lose a job and have to use medicaid, what will happen then?”
And that’s just scratching the very surface.
What I’ve learned from this journey with Max is that I have to turn my fear and urge to run, hide and cry into stand up, face it, and fight. And that’s what I’ll do for whats right, for our future. Turn the fear and anger into hope and action.