I haven’t blogged in a long time. My writing last fall has had significant consequences with my real-life relationships, and I’ve needed time to process that reality as well as reflect on the impact of putting all my thoughts out there in the world. I’ve been reading a lot, listening a lot, and learning a lot. I’ve tried hard to understand, to see the nuance in so many of our political conversations, and to channel my anger and frustration into productive conversations and actions. I’ve been deliberate in engaging in in-person conversations rather than Facebook debates, but to be honest, I’ve left most of those baffled.
Today, the House voted to move the latest version of Trump’s “healthcare” bill forward. And it became crystal clear the value our country places on the disabled and people with greater than average healthcare needs.
If this bill passes, there will be significant cuts to Medicaid (projected spending cut of $840 billion over 10 years in order to offset the revenue lost with tax cuts to the wealthiest Americans). The person elected to represent me voted today that the monetary value of my son’s life has a limit. That the bottom line, and saving rich people money, is more important than his therapies, medical supplies, equipment, medications, nursing, and the care he gets in the hospital and from his doctors.
I read today that on average it is 4 times more expensive to raise a special needs child than a typical child. I think in our case, it’s much more than that. The costs of everything Grayson requires are astronomical. For example, Grayson got a new stander this week. Because he doesn’t walk, he is in danger of his muscles atrophying and his bones becoming brittle and breaking. The standing program strengthens his muscles and will hopefully prevent future (costly) problems. The cost of this one piece of equipment: $8,200. There is no way we would be able to afford even a fraction of that cost, let alone all the things required to, at a minimum, keep G alive. Tube feeding him costs more than $1,000 a month. He now takes nine medications a day plus several more as needed. I don’t know the total cost but I do know one of his specialty meds cost $900 a month. We pay $100 out of pocket each month for his vitamin cocktail. The point is, the cost of Grayson’s medical expenses far exceeds our monthly income. For our family, Medicaid is crucial.
I truly don’t understand why the party claiming to be pro-life thinks it’s perfectly acceptable to cut funding which protects the lives of the most vulnerable. Why is abortion considered murder if it’s not murder to let people die from lack of adequate health care? Really, I want to know the answer to this question.
I’m not surprised by the vote today. I’m saddened, furious, and scared, especially for kids like Grayson, but I’m not surprised. Trump doesn’t care about my kid. Paul Ryan doesn’t care. The Republicans in Congress don’t care. We put them there, against our own interests, and apparently I’m still really, really angry.
Please start calling your senators about this mess. This just cannot pass. If you voted for Trump, this is not what he promised during his campaign- please hold him accountable. Please. The value of my child’s life is limitless.