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Lions Roar : November 2015
been able even to communicate via such signals as “blink once for yes, twice for no.” Yet she follows us with her eyes, and when I talk baby talk to her, she rolls her eyes like any 11-year-old girl. In other words, my wife and I think she hears and under- stands, but she’s unable to communicate back to us—unable to scratch where it itches, unable to tell us where it hurts. We’ve no idea what will happen to our child. No other par- ents know that about their children either. But they have the illusion of certainty—going to school, taking part in activities, graduation, college, marriage, career. We don’t have the illusion. People speak of being disil- lusioned as if it’s a bad thing. Really, it’s nothing more than waking up. In the face of such unvar- nished reality, it can be tempting to seek distraction, but distraction doesn’t help. When you’re whistling in the dark to distract yourself from fear of the darkness, you’re still aware you’re avoiding something fearful. As the self-help community says, what you resist persists. Push it away, and like a playful puppy it just comes running back. Sit with it, accept it, and it may crawl in your lap, but it will settle down. “It’s all over now.” I heard that phrase from another family, this time in the ER when we first brought Hannah in for this visit. A family stood together, weeping, hugging each other. I don’t know what moment had passed for them, but I have a suspicion, and I fear such a moment myself. Like the shot following me for 50 years, I can dread something that might not come for 80 years, long after I’m gone. When I dread the moment Hannah leaves this world behind, it robs me of the joy of this moment. This moment is over now, and I don’t want to miss any moment anticipating some other moment, even the moment we can take Hannah home from the hospital. Still, there’s the desire for comfort and to comfort. In this, my daughter is my teacher. I don’t think she suffers, but she does feel pain. Her face twists in a silent struggle. I can’t do much for her: only make her breathing easier by ministering suction to keep her from drowning, and be present with her. In the time it’s taken me to write a paragraph, I’ve suctioned her tracheostomy twice, and I’ve stroked her hair and face. She doesn’t smile, but her grimace relaxes, her eyes half close, and her pulse drops twenty points. I count Hannah’s breaths, time drops off, and I watch her. “Now,” I whisper, just the two of us. “It’s all.” ♦ What’s the prognosis for Hannah? No one knows. The fact is, none of us has any certainty. We just have the illusion of it. santa fe, new mexico 505-986-8518 www.upaya.org