EIEI...Oh, that's not it

I just returned last night from taking my son to Cincinnati Children's Hospital, a nine hour trip from here. It seems crazy to travel so far for a short procedure (an upper gi scope -- all of seven minutes in length), but we began with this doctor and hospital when we lived much closer, and we continue because the doctor is both excellent and somewhat unique in his field. My son (LB) has what is called eosinophilic esophagitis (e.e.), a fairly rare condition that affects protein absorbtion and is triggered by multiple food allergies. We treat him by having him in a very slow food trial process -- he currently has nine foods he can eat in addition to a specialized formula that is both expensive and has a nasty smell. Fortunately, he doesn't seem to mind the taste. Ironically, he can have anything completely aftificial since sugars and dyes are non-reactive for him. After almost three years of diagnosis and treatment, that unwieldy condition name almost rattles off my tongue, even though it isn't much easier to say than it is to write. While there are plenty of doctors who could do the scope, there are very few doctors who work directly with this condition and directly with children. This doctor has written a number of articles about it, and his name pops up in conjunction with e.e. on many online searches. So, being the concerned parents we are, B.W. and I will continue to make the trek, at least as long as insurance will agree to cover it in network.

It's not so different from folks who travel for specialized cancer care or other health concerns. No, e.e. is not life-threatening by itself, but if the eosinophils (a type of white blood cell) build up, they could eventually affect his breathing. In the mean time, his ability to digest protein has an obvious connection to his long-term development. So far, he thrives. Although he's small for his age, you'd never know from his activity level that he has any kind of medical issues. And so far, little sister KB shows no signs of having the same struggles. As I write this, she is next to me with fistfuls of bread and turkey, and she takes sips from a cup of milk -- none of these things are part of LB's diet. But it is possible he'll outgrow some of the allergies. Maybe someday we'll all be able to eat a full meal together without switching out foods.

Things went well yesterday at the doctor, and the preliminary report looks encouraging. I feel blessed, even as I struggle with feelings of guilt that my decisions put extra weight on the back of the world. By traveling so far, I use much more gas and resources. I claim a privilege that I can travel for the health care I long for my son, and I'm not likely to give this up for the sake of greater justice. I feel torn between care for my child and a more general care for the children, and for now, I have to live with my decision to stand on the side of my son. I wrestle with the same feelings in many of the other privileges I use on a regluar basis -- plentiful running water for washing, laundry, drinking, and watering flowers in dry spells. Even so, I sigh for a world where one's benefit does not come at another's expense. So many values feel like they are in conflict with one another. I rejoice in my freedoms, even as I shudder at the image the US is largely projecting onto the world. I celebrate liberty and cry out that I don't want them to be preserved by violence. Sometimes I yearn for more innocent days when I wasn't aware of such disparities. But I have tasted of the fruit of knowledge, and choices now push me to look down the ramifications of many choices. God, guide me in, through, and by love in my actions...