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4. The Seduction of the Surgical Fix
- Johns Hopkins University Press
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c h a p t e r f o u r The Seduction of the Surgical Fix Lisa Abelow Hedley, J.D. As the mother of a child born with the form of dwarfism called achondroplasia, I struggle to let her be who she is and recognize that there are two children growing up: the one I perceive and the one she is—and ultimately all that matters is the one she is. That means not letting my fantasies get in the way, which is harder than it sounds. When our LilyClaire was born ten years ago, everything was confusion: how to react , how to proceed, what to do. As the frantic first days unfolded, it seemed that all we could focus on was how to repair the flaws, and we would listen to anyone from a faith healer to a surgeon if we thought there was a“fix”for her in it.I remember thinking : we can put men in space, surely we can fix this. In our case, there was no immediate fix on offer, because the flaws are molecular, embedded in every cell of her body. So for us, the first order of business was to come to terms with a few central desires, not the least of which is that most troublesome one—the desire for normalcy. There are dangers both social and emotional in being different and a certain amount of safety in being normal. So as her guardian and protector , I am vulnerable to the enticing possibilities of a surgical fix that might bring her closer to that safety zone of normalcy. When you are a parent busy adjusting to the loss of the idealized child and raising the one you do have, it takes time to come to terms with a couple of facts. First, flaws are an essential part of real, normal human lives. Second, the pursuit of some imagined ,flawless life obscures the real parental work,which is to raise a resilient child who values her self. To do that you have to look closely at your own fantasies and balance them against the real medical and psychological needs of the child. This is the ongoing challenge and the best way to describe it is by example. It is April 2002. LilyClaire is 7 years old and my husband and I are sitting in the office of a pediatric orthopedic surgeon whom we respect immensely, who has monitored LilyClaire since she was born and who has carefully evaluated the latest X-rays of her very bowed legs. “If I was a betting man, I would say we will need to operate by Christmas,”he says. “So, strictly speaking, we don’t need to correct her bowing right now,” I say, trying to understand why we would opt for breaking both of her legs in two places to straighten them when she walks perfectly well.“I mean, right now there is no medical proof that she is wearing down cartilage, or even the certainty that she will?” I am very much attached to the notion of certainty even though I know there is no such thing in the world of medicine. I am also very susceptible to authority figures in white lab coats.So I am worrying about the goals we would reasonably hope to achieve by operating now: medical repair or fantasy-fix or something in between? “So, all we are saying for sure,” I continue,“is that she will have straighter legs and that might stave off future problems.” “That is correct, but I believe she will need it.”Our doctor repeats his view that we will probably eventually have to make the correction to avoid damaging misalignment and wear and tear on LilyClaire’s cartilage. My husband sighs and shifts. He hates it when I engage in the “on the one hand, on the other hand” thing I was trained to do as a lawyer. But I am no longer a frantic mother in search of solutions. I am not a maniac for the fix. Nor am I the clear and precise thinker I can be on other issues in my life. I am a mother seesawing between the nagging desire to alleviate some of my daughter’s difference, to feel we are doing something—and the strong belief that I have to protect my daughter against those marauding, seductive, and unattainable notions of normalcy. I am a mother who needs to be sure...