The Still Point Of The Turning World Read Free Page B

loss of that boy or that girl, and then to live with it, takes a new ferocity, a new way of thinking, a new animal.
    What creature symbolized this modern love story of which Ronan and Rick and I and others were a part but whose roots were as ancient and mysterious as the Tay-Sachs gene itself? What could represent us, we parents who learned how to use suction machines, clean catheters and feeding tubes, operate oxygen tanks, navigate weird insurance phone trees and manage the prejudices of others in order to be sure our children were comfortable, loved, and stayed in the world for as long as they could? Who were these moms who answered all manner of rude questions in grocery stores (“What’s wrong with your baby?” or “How can you drag that child all around town when he looks so tired?”) and who were confronted with unsolicited statements like “I hope you got sterilized” or “Why didn’t you get tested if you knew it was genetic?” or “I didn’t know you were Jewish” and other statements that speak to ignorance and exhibit basic cruelty?
    The English word “dragon” is derived from the Greek verb “to see clearly.” Dragons are creatures of myth and legend, beasts with the magical power of unicorns but made of much tougher, less ethereal stuff.
    What I came to understand was that mothers and fathers who take on the qualities of dragons feel as though parenting were our only task, and yet none of the parenting resources were written for us. Parenting books revolve around the issues that arise from children who grow, wreak havoc, talk back, succeed, do drugs, overcome learning obstacles. Of course, parenting books are designed for parents with children who live, but dragon parents have a lot to say about parenting
.
Why? Because
we’ve had to redefine the act: parenting with no thought to that dreaded future when there will be no child—parenting without a net.
    “You must be so proud” is the kind of thing all parents are fond of saying to one another. Yes, my parents are proud of me. But as I thought about Ronan, I wondered: under what circumstances would it have been appropriate or acceptable for them to be less proud? If I’d never done anything “prideworthy,” would people have avoided talking about me with my parents at all? If I’d robbed a bank or run someone down with my car while driving drunk, would people have pretended as though I didn’t exist? I was proud of Ronan, but not for anything he did or for any future accolade, and that was not easy. I was not above the petty stuff.
    I realized that it was very likely that had it not been for Ronan’s terminal diagnosis, I’d still be living out these old stories through my unsuspecting son. It took this experience to help me see clearly, to understand that the bulk of the popular parenting advice champions an approach to living that completely complies with achieving bogus standards of success, but it didn’t mean I was immune to the longing for those meaningless benchmarks. Still, I felt as if discussions about “taking pride in our children” implied that they’d better earn their keep, that they’d better deserve all the attention and privileges provided for them. Dragons might be associated with medieval myth and ancient legend, but this very modern parenting practice seemed straight out of the Dark Ages—punitive and transactional and cruel.
    Why are mothers of terminally ill children rarely asked for their parenting views?
    Short answer: dragons are scary. Our grief is primal and unwieldy and it embarrasses people. Talking about end-of-life care decisions for our babies to a bunch of parents with typically developing kids is tantamount to breathing fire at a dinner party or on the playground. Nobody wants to see what we see so clearly. Nobody wants to know the truth about their children, about themselves: that none of it is forever.
    Dragons are descended from serpents and dinosaurs, winged in some cultures, reptilian in