Wesolowska applied the “Page 99 Test” to Holding Silvan, and reported the following:
Dead center in my memoir, Holding Silvan: A Brief Life, I have a conversation with my husband over dinner about our son:Learn more about the book and author at Monica Wesolowska's website.“Whenever you get pregnant,” I say righteously, “you never know what you’re going to get, or how much you’re going to have to sacrifice.”In putting “The Page 99 Test” to Holding Silvan, I find myself judging not just the quality of the book but the quality of the lives lived in it – and not just my married life but the life of Silvan.
“I know,” David says. “That’s always scared me.”
“So what are you saying? That you’ve changed your mind about having a child now that we have one?”
“So what are you saying?” he says. “I mean, you can’t do this for me. If we want to stay married, we both have to believe this is right.”
Brain-damaged during birth, our first son received the grimmest of prognoses. He’d been revived but now survived only on his brain stem. Comatose, he might wake but would be fated to lie there, unable to control his limbs, his eyes, his mind. If lucky, he’d learn to breathe and swallow. Was this even life? Pushing the doctors to be honest, we learned we could withdraw Silvan from life support.
Modern medicine, for all its triumphs, has brought us to a place where most people no longer have the luxury of dying without first making a choice – either to stop medications, decline operations, and come home to die; or to let doctors push them to the very edge of what some would consider life. More and more Americans realize they should prepare for this moment; more and more spell out their desires in living wills. But how do we choose for someone who has not yet lived enough of life to know what he wants?
On page 99, at the heart of the book, David puts our instinct – to let Silvan die – under a microscope. We’ve consulted doctors, nurses, family members, friends, even a priest. We’ve made ethical and legal sense of it. Now David asks:
“I worry about being selfish, about trying to get out of taking care of him. Don’t you?”
It’s a hard question to hear but crucial to answer. We weren’t trying to avoid caring for Silvan. We loved every inch of him. But at the same time, we had to admit that how Silvan lived and died would affect not only him, but us, our potential future children, our community. At the heart of the book lies these questions: What is selfishness? What is generosity? What is love? Can a death be good? And if so, what is our responsibility as a society to make a good death part of all our life stories?