I’m not unhappy about becoming old. I’m not unhappy about what must be. It makes me cry only when I see my friends go before me and life is emptied. I don’t believe in an afterlife, but I still fully expect to see my brother again. And it’s like a dream life. But, you know, there’s something I’m finding out as I’m aging that I am in love with the world.
And I look right now, as we speak together, out my window in my studio and I see my trees and my beautiful, beautiful maples that are hundreds of years old, they’re beautiful. And you see I can see how beautiful they are. I can take time to see how beautiful they are. It is a blessing to get old. It is a blessing to find the time to do the things, to read the books, to listen to the music.
You know, I don’t think I’m rationalizing anything. I really don’t. This is all inevitable and I have no control over it. “Bumble-ardy” was a combination of the deepest pain and the wondrous feeling of coming into my own and it took a long time. It took a very long time, but it’s genuine. Unless I’m crazy. I could be crazy and you could be talking to a crazy person.
Into the Wilderness: Parenting a Terminally Ill Child
by Emily Rapp, guest contributor
"You feel your obligation to a child when you have seen it and held it. Any human face is a claim on you, because you can’t help but understand the singularity of it, the courage and loneliness of it. But this is truest of the face of an infant. I consider that to be one kind of vision, as mystical as any." ~from Gilead by Marilynne Robinson
I woke up and held my son for a long, long time. I’d been gone for three days at the National Tay-Sachs and Allied Disorders Family Conference and had missed him terribly. Driving through Boston on the way to the airport, I told my friend Kate that it was so difficult, so impossible even, so disastrous to imagine feeling that way forever. The missing, the ache.
We agreed that, say what you will about heaven or where we go or visions of the afterlife, the truth about someone being dead is that they’re gone from this life, right now, here on earth, with you. That particular person has been removed from your particular life. That’s the gut punch and there is no balm for that, no platitude, no prayer, and, I would argue, no belief even that will fix it. My son will be dead within three years and there’s nothing I can do about it.