I have found that the trouble with hope—the stuff that sometimes feels like the only refuge I have—is that it can give me false cause to keep my nine-year-old son on various failing drugs for far too long thinking that they might, at some point, at some perfect dose, begin to work. Hope has prompted me to endure and impose the rigors of dietary therapies for years, tweaking them and honing them and fiddling with them, hoping they will at some point stop his seizures, even when the studies tell me that, if they do work, I'll see results within weeks if not days. The doctors hold the same hope, for they see it in my eyes, and so they give me the authority, encouraging me to stay the course, even when it might appear plain that the shit isn't working. This is the power of a mother's hope; this is the trouble with hope, and I know it, and it pains me.
And so, with great discomfort, I peel myself out of the sheath that has become my codependence—fearful as I am to let go—this false yet alluring promise of hope, and I bring Calvin down and eventually off, and I hold my breath and I see the seizures come and go and I wonder if I've done right and I feel the worry and I study other options and I consider the lesser of those evils with, of course, a measure skepticism and more than a decent dose of motherly hope.
And so, with great discomfort, I peel myself out of the sheath that has become my codependence—fearful as I am to let go—this false yet alluring promise of hope, and I bring Calvin down and eventually off, and I hold my breath and I see the seizures come and go and I wonder if I've done right and I feel the worry and I study other options and I consider the lesser of those evils with, of course, a measure skepticism and more than a decent dose of motherly hope.
I know this game, and it is one that I, too, have played for nearly twenty years. About ten years ago, I vowed to NEVER add a third drug until the second was completely weaned. I also grow ever more certain that the practice is near unethical -- that throwing three and four and even five drugs at a child with refractory epilepsy is useless. When something works, it WORKS. If it doesn't, take it off.
ReplyDelete