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If there is an argument here that has no merit whatsoever, it's that this girl's parents are trying to save themselves the trouble. They are caring for their daughter in a way that not many parents will EVER have to even consider doing for their children, and they're committed to doing it as long as they can, FOR HER BENEFIT. I don't agree with their choices, I wouldn't do it for my own severely physically disabled child, but my kid doesn't have the same issues and I have no idea what this family is facing. But dammit, they are most certainly NOT trying to save themselves some trouble.
WE ALL have failed this family. Our system of health care has made it so that it is damn near impossible to pay for full-time home health aides, if indeed one can find them. And aren't we almost all one accident way from bankruptcy, one illness away from destitution?
What does this say about us? What does it say about America that a family chooses to stunt their child's growth by surgery so they can do it their own damn selves rather than try to navigate the impossible labyrinth of muddled services, rather than try to weed out the worst of paid, "screened" caregivers (at the possible expense of their daughter being abused)? What does it say about us that this family considered this treatment to be better than trusting in our compassion, our solidarity, and our determinedness to make life better for people in need?
If you've never been in a situation of being utterly dependent on someone else, if you've never cared for someone who is completely dependent on YOU for his life, then please, don't judge. Vote. Get involved. Change this ridiculous system. Help a caregiver you know. 1 in 5 Americans call themselves disabled, so you shouldn't have too hard a time finding someone.
