Dear Vice President Pence,
I was scrolling Twitter last night and came across this tweet. And, I’m going to be honest, it triggered something in me. You see, I’ve been angry for a long time now, about a lot of things happening in our country. But my anger has been simmering, controlled. Tonight though, it reached a boiling point. I realize I no longer live in a country with values I recognize, or with leadership I trust. And that’s infuriating.
Personal responsibility, Mr. Pence? What exactly are you referring to here? Because I really don’t know how my six year old, who is non-verbal, non-ambulatory, exclusively tube fed, vision impaired and medically fragile, who relies on me and a handful of other caregivers for literally everything, is supposed to take personal responsibility for his own health. You know, since it was his fault he was born with an incurable genetic disease. I don’t know, maybe if he had just worked a little harder to eat as a baby, instead of throwing up every ounce we gave him, he wouldn’t have needed that feeding tube. I guess the hours we’ve spent in therapy trying to get him to achieve milestones like sitting up and crawling just weren’t enough. He should have tried harder, right?
Regardless of how much he’s slacked off in the personal responsibility game, here we are. I have a child who is not, and will not ever be healthy, and you and I both know that’s no one’s fault, especially not his. But seriously, answer this question for me. If lifetime caps on insurance are allowed to be re-instated, and Medicaid is gutted, how is Grayson supposed to get the thousands upon thousands upon thousands of dollars (and honestly, it’s likely millions) worth of healthcare products and services he needs to LIVE? Without access to the health care our private insurance and Medicaid provides, he will die. If I sound a little shrill and dramatic, it’s because I am. Put yourself in my shoes, and the shoes of my friends with medically fragile kids.
Hundreds of miles away from where I tucked my little boy in bed last night, positioning him to ensure he sleeps safely and comfortably, there are a group of white men (no women or people of color, really?) who secretly wrote a bill that makes it clear that the value of my son’s life has a limit. You’re a father. Think about that- what if someone told you that about one of your kids? Would you not fight like hell and maybe get a little dramatic and shrill?
Oh wait, you say you aren’t talking about Grayson himself not having any personal responsibility for his health? Ok, so you mean me? And my husband? Well, my husband works really long hours as a high school teacher and coach, pouring into teenagers and trying to teach them that personal responsibility you seem so fond of. But it’s no secret teaching doesn’t make one wealthy, and it certainly isn’t going to provide the funds necessary to keep my child from dying if we lose insurance and/or Medicaid for him.
And me? You want to know the weight of my personal responsibility? The crushing weight that every single special needs mother feels, and can’t unload? How I lie awake at night wondering, and worrying, about a child’s future who has no future apart from me. How sometimes I feel more like his nurse than his mom, or his manager, with all the phone calls and paperwork I have to do on his behalf. How keeping myself healthy (physically and mentally) is so crucial, mainly because how would I take care of Grayson if I were sick or dead? What would happen to him? Don’t you dare suggest that I haven’t felt, or acted, responsibly.
Mr. Pence, I know a lot of people who really like you, especially where I live. They voted for and tolerate that moron who picked you as his running mate, but you are the one they think is going to turn this country around, and make it “great” again. Why? Because you’re a Christian, and are pro-life. You claim to have Christian values and are going to bring God back into our country. Ok, great. I’m a Christian too. And I love Jesus. But like Ghandi, I don’t really like a lot of Christians these days, because they are so unlike my Christ. And honestly, I’m sticking you in that category too. There is absolutely nothing Christ-like or pro-life about gutting Medicaid and making the sick and the poor suffer while the rich get richer. Your brand of Christianity is the prosperity gospel- work hard enough, and be the right kind of person, and you will be rewarded. Real life, REALITY, doesn’t work like that. Good, hard working people get sick all the time and need expensive care, care that is often the reason they are poor. You think Jesus would agree that the value of Grayson’s, or anyone’s life, has a monetary limit?
I noticed you tweeted again the following statement, referring to the original tweet:
You may be right, that may be the Republican way, but I sure as hell hope you’re wrong about it being the American way. This is not the America I want to raise my children in, and they surely won’t be taught to embrace these values. Being sick or poor is not a character flaw. We are supposed to take care of each other; instead, you want only those who are rich, able-bodied, or have lived up to some arbitrary measure of “personal responsibility” to have the America you are making to be “great”. Well fuck that, Mr. Pence. I am angry, and I will stay angry and fight like hell for my child and all the children and Americans who are being screwed by this inhumane, ridiculous bill. That, I believe, is MY personal responsibility.