Holding Silvan by Monica Wesolowska Page A

sounds so contradictory – which it is. What benefits Silvan might also harm him, what is good for him might not be good for others. Because of such conflicts between terms, the right medical decisions are not always obvious. “How would you even use those terms to make our case?” I ask.
    He says, “I don’t know. All I can think about is my cousin and how much her parents have suffered over her.”
    I know what he means. It took years for them to tease apart the various problems that have added up to her developmental delay, years to figure out what services she could receive to make
her life manageable, years even to communicate with her calmly. She is now an adult living hours away in a publicly-funded group home; they spend the bulk of their free time driving back and forth to see her. I know they must worry about her future once they are gone. And I know that they love her. I push away my plate, suddenly disgusted with David. “But you can’t say that, can you? I mean, that’s selfish.”
    â€œBut people aren’t isolated. They belong to a community,” he says.
    I agree with him about community, but I am angry now. I remember his early doubts about my ability to mother well. Who is the selfish one now? “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.”
    â€œ I know,” David says. “That’s always scared me.”
    â€œSo what are you saying? That you’ve changed your mind about having a child now that we have one?”
    â€œSo 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.”
    Both of our plates are now pushed away, our appetites gone.
    After a moment of silence, David goes on. “It’s true,” he admits, “I worry about being selfish, about trying to get out of taking care of him. Don’t you?” He tries to take my hand across the table.
    â€œGod no!” I say, ignoring that hand. “I think it would be selfish of us to keep him alive. I mean, a part of me would just like to keep him with me always, smelling his sweet head and knowing I’m being good by taking care of him, but I think that would be wrong for him so I am sacrificing what I want for his sake.”
    â€œYou wouldn’t really want to do that,” David persists softly, earnestly. “You wouldn’t really want to devote your life to him, would you?”
    In this moment, how grateful I am to have married him. With his honesty, he is not just insulting my Day-Glo headscarf
or my potential for motherhood anymore, he’s asking me to examine my deepest most secret self. I take his hand. Perhaps he’s right. Though I know I have it in me to mother Silvan as much as he needs, perhaps a part of this decision is selfish, perhaps I am just as relieved as David that my life from here on out can be spared round-the-clock vigilance for an incapacitated son. I hang on to that hand.
    â€œMaybe you’re right,” I say. “Maybe I just like imagining that I’m sacrificing my desire to keep him alive for his sake. Maybe I’m lying to myself.”
    As soon as I admit as much, the honesty makes everything clear. How lucky we are that this makes sense to us on all levels. We believe that Silvan should be allowed to die not only for his sake but for all of ours.

Chance of Regret
    ON SILVAN’S TWELFTH DAY, THE ETHICS COMMITTEE meeting takes place in the basement of the hospital. What David and I are doing, we will later learn, is unusual. Prior to us, few parents have made this particular choice in this particular hospital. In a strange reversal from the time of Karen Ann Quinlan, most parents who come to ethics committees these days come to fight for the right to a miracle. But we are unaware of how we may be