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"If you weren't having this conversation with me, who, other than your wife, would you be having it with?" That question, in response to something I'd said about treating my nine-year-old daughter's diabetes, was posed to me over the phone by a friend I had made less than six months earlier. She has a daughter too, the same age as mine, who also has type 1. Their diagnosis came a couple of years before ours, so I respect her experience and opinion, and so does my wife, Franca.
"No one else," I said. "Just her." There was a long pause on the other end of the line. I heard in that silence how sad and lonely my answer sounded. No one else.
It was true. By either choice or circumstance, Franca and I had been pretty much on our own to educate ourselves about diabetes and figure out how to manage it. It took time, understanding, learning, and sometimes re-learning all the unique peculiarities that controlling this disease requires. We made plenty of mistakes: basals that were too aggressive or not aggressive enough; inaccurate carb counts; dosing issues; and problems that persisted even as time went on, fueled, perhaps, by periods of success that bred overconfidence.
On one hand, this method of intense experiential learning benefited us. After all, if our child were to stay fit and healthy, and we were (and still are) determined that she would, it was up to us. No one else would work as hard to keep her safe. Training such as this is rare in the real world. I hesitate to call it an apprenticeship or on-the-job training because of what these terms lack in personal meaning, but few would argue that there is greater motivation to learn quickly from your mistakes.
On the other hand, I realized in talking with my friend that in taking this on by ourselves with little guidance or support from others, we had sacrificed the shared knowledge, wisdom, and experience of the special community to which we now belonged. So we began opening up to them, and they to us, and we found, as did our daughter, that while life with diabetes can be ornery and incomprehensible, it never has to be lonely.
So, which of the two paths is better? My answer, I'd say, is neither, but a happy blend of both.
0 comments - Sep 9, 2011