Who Cares? Anyone?

The older I get, the more I realize that we, as a country, have our priorities pretty messed up. We care mostly about ourselves and our families and we don't do enough - as a
country, as a society, and as individuals - for each other.

It's not only age that's cluing me into these misplaced priorities. Living with a child with chronic health problems has opened my eyes. I never really thought about what goes on with families who are faced with health challenges. I mean, I thought about how awful it would be to deal with a child with a life threatening or life altering disease, but never about the other details.

Here's a big, big detail that I must have glossed over in the past: health care is EXPENSIVE. Even with insurance. Despite having saved on our lower middle class salaries for 13 years of marriage, 18 months of parenting a daughter with medical problems has made a sizeable dent in our savings. So much so that, in the face of what will surely be years of expensive special-order nutrition, copays out the ying yang, and other uncovered expenses, there's a big concern about where the money is going to come from to pay for all this. Never mind the other things we need to pay for, like my son's preschool, our mortgage, and so on.

Dealing day in, day out, with a health problem is exhausting and stressful. I wonder, as I'm sure many other mothers do, about what's in store for my child, and for us, in the future. For my daughter, whose extensive food allergies have ceased to be the only cause of concern (her acid reflux and possibly some other mystery ailments or afflictions are causing her to have a round of vomiting at least once a day, nearly every day, along with food aversions and food refusal), I can't help but be afraid. She can only eat three foods and yet she's decided not to eat one of them at all. She looks normal and healthy only because we struggle to get enough food into her so that she can gain weight and grow. I add up everything that goes into her mouth and subtract what comes back out again. I mop up vomit spills, change her clothes and mine, and try to figure out what caused the last barfing episode so that I can avoid doing that again. I attempt to provide her with safe, tasty food and coax her to eat it. I'm mostly unsuccessful. It's mind numbing and all encompassing.

Medications are another source of stress. One must be given 20-30 minutes before eating, as if I could control when this child will accept food and when she won't. She can no longer take this medication directly into her mouth without vomiting, so we have to dilute it and deliver it with a syringe. Except of course it doesn't all come out of the syringe, so we have to screw around with it to get nearly a full dose in. The other medication, and antihistimine which also acts like an appetite stimulant, must be given with food. How ironic that an appetite stimulant must be given with food... Until she takes it she doesn't really want to eat much, so it's quite exciting to work that one in two to three times a day.

You would think that it's enough to get your kid to doctors and therapies multiple times a week and manage all the meds and try to share what one doctor said to another doctor because they don't really talk to each other... but on top of that you have to stress out about money. The insurance companies are no help with this. My insurance company (Blue Cross Blue Shield of Florida, which I kindly refer to as "Blue Crap") routinely denies paying for my daughter's treatment because they claim that it's a preexisting condition, yada yada yada, despite the fact that they've already told us that because we've never had a gap in coverage and because she's so young, she can't be considered to have preexisting conditions. And what's up with the whole preexisting condition thing anyway - IF YOU ARE SICK YOU NEED COVERAGE, no matter when you got sick the first time. It's so messed up.

The all-knowing folks at Blue Crap have also declared my daughter's Prevacid to be a drug they will not pay for. It's the only thing that keeps her from fussing all day, crying all night, and puking MORE than once a day. But no, we are required to use the covered drugs. Certainly Blue Crap must know more about medicine than the doctors who prescribed the Prevacid. Well, one "preferred drug" gave her a rash (allergic to it, I guess, what a shock!) and the other didn't work AT ALL. So for now, we're relying on samples as we try to figure out how to pay for a $600 a month drug.

If we don't figure it out, if we can't stop the vomiting, then she's going to need a feeding tube that will be surgically implanted. I'm sure that'll be cheaper than two Prevacids a day, right?

Insanity.

You think the worst thing about a health problem would be the health problem itself, but instead there's so much more. In the US, we're just so into the almighty dollar that we don't actually stop to CARE about each other. To care about the people who are suffering and struggling, whose daily life could be made easier by others if only our society was set up for it. It sucks. It absolutely, positively sucks.

I hope that, if my daughter is ever a healthy child, free to eat normally and able to do so, that I don't forget where I sit right now. Because, while it'd be nice to be able to crawl back into my hole and deny that this hell exists, if I did so, I'd be part of the problem. It's a BIG problem. If we really live in the best country in the world, we need to fix it. Now.