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What’s hard for me is the sheer number of people who believe that this is no big deal and that life for families like mine will just go on as usual. Because surely insurance companies didn’t REALLY deny based on pre-ex conditions before the ACA, right?
I don’t know how to convince people of what is true. I don’t know how to make people care, how to convince them that there’s enough to go around in this ridiculously wealthy country.
So I’m sitting here again, crying into a pile of laundry, gutted that it wasn’t enough. That laying bare our family’s private medical story, sharing the bright light of our son with them, that it somehow wasn’t enough. 
The ACA is the reason my son climbs mountains. Literal mountains. Being guaranteed affordable healthcare, regardless of the state of his internal organs, has given him a life beyond anything we could have dreamed of.
This isn’t a story we made up for kicks. This was life before the ACA looked at those of us who need a little more help and called us equal in the eyes of the law.
My son was born under a law that recognized that his value and worth are unlimited, that his life was worth fighting for. This decision is a slap in his face and a punch in my gut and a kick in the teeth of so many families across the country who are already down and hurting.
And while we are sad and angry tonight, we’re not defeated. We who fight alongside our children for every beat of their hearts don’t give up. All we know how to do is fight.
