This past Thursday, I made my sixth trip this year to Senator Moran's office. I had no intention of speaking and decided at the last minute to use my lunch break to go to support others. As I stood looking around the room, listening to one story after another, I was struck with deep sadness and frustration. I had one question. "Why do I have to keep coming here to ask Senator Moran to protect my son's life?"
My son, Danny, was born prematurely and is diagnosed with cerebral palsy, epilepsy, and cortical vision impairment. Danny uses a wheelchair, he needs total support with all his care, uses a gtube for his nutrition and fluids, and he requires constant monitoring of his health due to the risk of seizures.
The Graham-Cassidy healthcare bill is devastating for the real, tangible effects on Danny's life and his future. It's also devastating because of what it implies.
With each of these fights for to protect Medicaid, it feels as though I have to explain why my child deserves to live. It seems as though we live in a world where his inherent value is not accepted. That his life is viewed as a burden.
The truth of it is, none of us can do anything without the collective us. We all need support. We all need help. We all need our community. Some more than others, but that is how this works. Danny is no burden. Danny is exactly who he was meant to be. He has a right to an independent and healthy life.
By funding Medicaid, we tell people with disabilities that they are valued. That their lives have worth. They are an important part of our world.
I look forward to the day I no longer have to explain how important my son's life is to our elected officials, but today is not that day. Like many of you, I am exhausted by this. But we have to push on and keep up the pressure. I will keep calling. I will write another letter. I will show up again and again. Today is not the day I stop fighting for Danny.