An Art, Not a Science

After having spent the evening websurfing items such as ionized calcium levels, renal abnormalities, schizophrenia, and thrombocytopenia, I crawled into bed with a heavy heart and a mind swimming with medical jargon.

When Maggie was first diagnosed with VCFS, it seemed like the experts wanted to put her under a microscope and check for every possible abnormality they could find. And there were so many they could find! After discussion with our family doctor (and with his blessing) we concluded that we'd deal with problems as they arose. But we wouldn't try to check everything periodically "just to see how things are going." I know that's not the typical attitude among Americans. We are told to get our annual check-ups, and to expect that cancer and diabetes and wife-abuse and car accidents and heart attacks are lurking just around the corner, waiting to jump out and destroy us. We are told that if there are enough tests and screenings, we can find these things early and do something about them. Sometimes that's true. Other times it causes needless worry. The whole mindset of expecting there to be problems can, in itself, influence attitudes so as to create new problems where they wouldn't have been. How many times I've read articles for parents of special-needs kids, trying to convince the parents to see the child as a person instead of a Mishmosh Of Diagnoses! Thanks, docs, but I'd prefer to live with the person who is my beloved daughter than to begin wading in the pool of Mishmosh.

Furthermore, I don't believe in traditional Western medicine to the extent that most of the experts do. I believe that science informs medicine, and we are grateful for what we've learned. But nevertheless, medicine is an art, not a science. All drugs have side-effects. The decision to use a drug is made when the benefits outweigh the side-effects. But experts who believe in science (to the same extent that I believe in God) oftentimes don't want to acknowledge the downsides of their Wonder Cures. The experts also have too little regard for nutrition. The Cherrix case (the 16 yr old from Chincoteauge who wanted to treat his second bout of cancer through alternative means) is a high-profile example that alternative views are not acceptable. It's not usually okay to tell a doctor "no thank you for the prescription vitamins/minerals" because I serve a lot of raw foods and give my daughter enzymes & probiotics with her Real Food home-cooked meals and let her drink kombucha.

Beyond the alternative views on medicine, what about alternative views on education? Education is not a science either. There is a particular path we are supposed to follow for the education of VCFS kids. I don't like where that path leads. When I went to a few support group meetings, the parents were beside themselves with frustration over their kids' inability to read, do math, get along with the other kids at school. They were spending huge amounts of time fighting the school for appropriate attention for their kids. It was like they were on a hamster's exercise wheel, expending all this energy fighting the system, getting nowhere. Thing is, even at its best, the system isn't giving the kind of results I want for my child. So instead, we here are doing it "wrong." We're not using the textbooks recommended by the experts. We're not on a strict schedule. We're not trying to make this child fit a mold that is wrong for her. And it seems to be working out smashingly well. Math is a struggle and always will be, but Maggie can understand stories, and by all rights, she's not supposed to be able to do that. We get along with each other. She has friends. The doctor commented yesterday on how incredibly well we're coping with the VCFS. Maggie doesn't see herself as a defective person who needs to spend all day every day being tweaked and repaired and improved. This is good.

Everybody thinks the heart surgery was a big deal. Well, I suppose it was. But surgery is a cake-walk compared to these kinds of decisions. Surgery was one big (scary) to-do; a mechanical fix to a misfitted pipe, done and over with in due time. But these decisions are long-term. They influence what we do every day, influence what kind of stories we read, influence the schedule, influence what we eat and when, influence when we can pray. These decisions will impact our thoughts and feelings and relationships and self-esteem and time constraints. These are decisions that put us in a position where we have to tell the experts that we know better than they do what is best for this one particular child. Because medicine is an art, not a science. But try telling that to people whose god is the "science of medicine."