The Still Point Of The Turning World Read Free

to write about Ronan. “Uh . . . I don’t know . . . maybe.” I stuttered. “I’ll set up a blog space,” she said. “You can always decide later.” I didn’t think much about it at the time. I talked to the other moms with terminally ill babies, I took Xanax, I sobbed and bit my lip, my sheets, my hands. And then I got out of bed, and, to my great surprise, I started to write.

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    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
.
    —Marilynne Robinson,
Gilead
    W hat could I say about my son, about being a mom in the wake of Ronan’s diagnosis? What had I, in just a few short days, learned from the other moms parenting children with Tay-Sachs or similar diseases? How do you parent without a future, knowing that you will lose your child, bit by torturous bit? Could it even be called parenting, or was it something else, and if so, what? As I sat down to write, I bristled at the lack of information and resources for parents who are not concerned with whether or not their children will be admitted to Harvard or win prizes for piano performances or even be productive and gracious or successful in school, but are instead involved in the daily grind of making the short lives of their children as full as possible for two, three, maybe six years at the outward reach, depending on how the disease progresses and the levels of medical intervention.
What will I read?
I wondered as I tossed out all the old guides about what to expect, all the old developmental charts. For parents of terminally ill children, parenting strategies incorporate the grim reality that we will not be launching our children into a bright and promising future, but into early graves. The goals for our children are simple and terrible and absolutely grounded in the everyday: dignity and minimal discomfort.
    This was absolutely depressing. The moms I talked to were very honest about the horror of what was coming for me. But the experience of being Ronan’s mom was not, I grew to learn, without wisdom, not without—forced and unwelcome as it might be to those of us going through it—a profound understanding of the human experience, which includes the reality of death in life that most parenting books and resources fail to acknowledge. Parents with dying kids have insights into parenting and they are hard-won, forged through the prism of hellish grief and helplessness and deeply committed love. These women had learned lessons not just about how to be a mother but how to be
human.
    But parenting for the sake of parenting, for the ancient humanity implicit in the act itself, appeared to contradict every bit of parenting advice I’d ever read, having devoured the magazines while I was pregnant and then as a new mom. The task of parenting seemed to have evolved from “do your best to keep your baby alive,” which was the primary parenting goal even into the nineteenth century, to the challenge presented to modern parents to “make sure your kid is prepped from the outset with the tools (here they are, and here are the studies that prove the worth of these expensive strollers, special bottles, organic cotton clothes, well-known tutors, popular programs, et cetera) that will lead to acceptance into the best preschool, the best grade school, high school, college, which will in turn lead to the best partner, résumé, job, bank account,
life
. The demand for these Olympic efforts presumes an implicit—and erroneous—belief that any parent can fully control a child’s destiny. Moms and dads in Victorian London were more concerned with mundane issues like cleanliness and making sure their kid didn’t catch a potentially fatal sickness from the dirty, teeming streets. This is still a real concern for