Ten days ago, our pediatrician told us that our little girl, Moy Moy, aged ten, probably has only a few months left to live. We have always known her life would be short, but hearing it put in terms of months left me feeling desperate for air. In these gray nightmarish days, I have to consciously fight the panic that keeps overwhelming me: Driving, I find myself suddenly gripping the wheel so tightly it hurts, stunned once again by the reality of the doctor’s words. Buying vegetables, I stand staring at the carrots in a trance, unable to remember what they are or why I am looking at them.
I can’t count the number of times I have sat down to write this column-always about something else-and been unable to proceed. There is nothing else. In my life, the only thing that matters right now is that my daughter is dying.
I spoke with her godfather on the phone the other day and he said we had to make the most of the time we have left. "Don’t get distracted," he warned me. "She can teach you everything you need to know."
This is true, and though it worries me sometimes that I may be deifying her, when I need guidance now it is not to God that I turn but to her (in spite of the fact that she cannot speak and has the mind, they say, of a six-month-old). I reflect on her life and I find all the answers I need.
Some of them, obviously, concern her. When our doctor brought up the question of tube...