Information for parents of disabled children

Thursday, January 28, 2010

Waiting On The World To Change

You'd have to have lived under a rock to miss the song by John Mayer Waiting on the World to Change. Yesterday, the boys and I took our regularly scheduled trip to Riley Children's Hospital. It's always an experience.

Medical care is quickly becoming my "Eleanor". Gone in Sixty Seconds supplied that reference. It was the car he couldn't ever manage to steal, the white unicorn. We're wondering how the heck we'll pay Riley, a hospital that's been so good to us, and we're wondering why it feels like stealing.  Something seems wrong when caring for the sick becomes a commodity.

Of course, doctors and nurses need a living wage. Hospitals have to pay for themselves, I understand, but that's not the system we have. Providers pull in massive profits. Having a child with Autism, you want the Corvette health care. Most families in our situation settle for the Impala or nothing at all. When your child needs medications, you take them to the doctor whether you can pay or not. You have to. It's debt or seizures. That's the choice. It's a choice that hurts.

Listening to the song that is the title of this article yesterday, I had to wonder if it's really the world or only us, Americans, who live this way. Maybe it's different elsewhere, and it only feels like the world to me.  Our son won't live on his own most likely, and having no  insurance now threatens everything. Statistically, his parents are more likely to die sooner rather than later. Forty percent more likely, I'm told. Who cares for him then? So, you see, medical care really is my "Eleanor". It's something so valuable we can't buy it. It's so necessary that it's life and death. That's why it feels like stealing.

Looking at D, I wish he didn't have to depend on anyone because the world around him doesn't look like it's changing. He's always going to be in need of a commodity no one is willing to part with easily. America will always be dominated by the "boot strap" culture of the olden days. While there is much to be admired in those who can pull themselves up by their boot straps, some have no boots. What do they do? They wait. Good Samaritans rarely come along and are rarely sanctioned by our society. It's all very Darwinian. I wonder often at the espousal of this mindset by so many conservative Christians. It seems at odds with their values.

Hoping for reform of our medical system seems now like a naive notion only a child would have, like Santa or the Easter Bunny. It was improbable and unbelievable.  How could I have imagined America was ready to grow up and behave in a civilized way? It seems very foolish now.

I suppose the families trapped like ours in a world that excludes their children in many ways will go on doing what has to be done for those children. We'll keep going after "Eleanor", even if we have to steal it, because that's what parents do. Anything it takes.

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