Hawthorne Books

In her memoir Holding Silvan: A Brief Life, Monica Wesolowska conveys two primary facts—first, that she loved her son Silvan deeply, and all decisions about his living and dying were motivated by that love, and second, that the decision she and her husband made to withhold nourishment from Silvan was not euthanasia. I am absolutely convinced of the first, but not as much of the second. I admire Wesolowska’s skill, I’m grateful for her honesty, I’m sympathetic to her decisions. And I’m not entirely convinced by her justifications for those decisions.

I have avoided writing this post for weeks. What sort of person questions a parent who made agonizing decisions about her child in a nightmare situation? I do, I guess. But I do so with as much compassion and empathy as I can muster. I want to honor Wesolowska’s story as the precious gift that it is. I have devoted a good portion of my career to parsing difficult questions around what Erica Jong, who wrote the book’s introduction, calls “damaged children”—children with significant disabilities. I am devoted to conversations around the choices parents make about whether to bear and/or raise such children, and the judgments we make as individuals and a culture about the value of such children’s lives. Wesolowska deliberately joins these conversations in Holding Silvan, going beyond the facts of her family’s story to consider cultural and medical attitudes toward death and suffering. Wesolowska offers her story as a vehicle for asking larger questions about suffering, love, and the way we die. I am responding not solely to her story as she tells it, and the decisions she made, but to her framing of her story in relation to those questions—a framework that I found deeply flawed.

To read the entire artivle go to Patheos.