The Still Point Of The Turning World (2 page)

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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 parents in much of the world.

Parenting advice is, by its very nature, future directed. I learned to avoid the magazines in the pediatrician’s office that were full of articles about optimizing a child’s sensory and language experiences in order to fire the right cerebral neurons; cures for colic; the politics of playdates; clothing “lines” endorsed by this or that ridiculous celebrity spokesmom.

Future, future, future. During this time, just before I boycotted parenting magazines, I came upon this quiz in a popular magazine that was marketed for people of my age, educational level and “life stage”:

What’s the hardest challenge for parents today?

~ Supervising cell phone and Internet use

~ Kids’ friends raised in more permissive homes

~ Helping kids deal with more tests and pressure in school

~ Kids today are growing up too fast!

Here’s how the options might read for the parent of a child with Tay-Sachs or another terminal illness:

~ Waking up every morning dreading the next stage of this disease (paralysis, blindness, deafness, spasticity, seizures, death)

~ Learning who your friends are, and how sickness makes people uncomfortable

~ INSURANCE

~ Kids with Tay-Sachs will never grow up!

But in the months following Ronan’s diagnosis, after the initial shock had worn off, the day-to-day routine with Ronan was peaceful. A typical day included cuddling, feedings, naps. He had water therapy and acupuncture. I worked during his naps. There was a baby dinner (peas!), bath-bottle-sleep, dinner for adults (takeout). Not so atypical of a family juggling schedules and running a typical baby day. We did our best for our kid, fed him fresh food, brushed his teeth, made sure he was clean and warm and well rested and . . . healthy?

Well, no. The dreadful hitch in this otherwise middle-class and privileged domestic snapshot was this: Ronan would never benefit from any of Rick’s and my efforts beyond what he received
in the moment.
I told him I loved him and so did his father, even if Ronan never understood the words. I encouraged Ronan to do what he could, although he was without ego or ambition. Babies aren’t investments that accrue interest. They’re not stocks or bonds or diversified portfolios to be reorganized in “these tough economic times.” They’re people, and, like all people, they can and will eventually die.

I didn’t always think like this. During my pregnancy and throughout those first nine months of Ronan’s life, I devised an ambitious list that I hoped would lead to important development outcomes for him: I would talk to him in different languages (language development); pick him up when he cried (attachment issues are crucial in the first year of life); breast-feed exclusively for a properly developing brain (I took herculean and often expensive and painful measures to do this). Like his father he would complete crossword puzzles in record time. Like me he would be physically fearless and an adventurous eater. He’d be fun but levelheaded, loyal and fair and smart. I would teach him how to ski and read and travel on a bare-bones budget. Maybe he would invent something world changing or build space rockets or become a fashion designer who made clothes from recycled trash. He would be generous and gorgeous. Women or men would be falling all over themselves to go out with him. I was not above my own prodigy dreams.

But no matter what I did for Ronan—organic or nonorganic food; cloth or disposable diapers; attachment parenting or sleep training; breast milk or formula—all decisions that mattered
so much
to me in the first few months of his life, he was going to die. End of story. Or was it? As I pondered these questions in the early hours of the morning and late hours of the night, I began to understand that the story of my son’s life would end but that what he had to teach me was as epic and mythic as a creation story. To prepare throughout a child’s whole life for the 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 others. We have an underappreciated ability to force people to face their worst fears. Our scales act like mirrors and our news looks dreadful. We foretell disaster. We don’t fit in normal-sized rooms. We lament. We gather in underground lairs. We fly loudly and awkwardly and in smelly, loyal packs. Our narratives are grisly and the stakes are impossibly high. And there’s this: maybe for parents who, in this day and age and particularly in this country, seem expected to be
super
human, nobody wants to listen to insights into the human condition, all of which end with one result—death.

“Here be dragons” was an ancient cartographer’s way of marking new territories that were unknown and therefore considered dangerous. Medieval mapmakers sketched dragons into those blank spaces as a warning. Dragon mothers are navigating these unchartered parenting waters, terrified, but without another choice.

We bellow and bark and roar, but we can also dance, as I once saw a dragon do through the steamy streets of Hong Kong in the summer of 1997. We watch our children carefully, vigilantly, breathing softly over them like dragons of old guarding their treasures. We can laugh, cry, sing, get drunk,
live.
Remember Puff and Jackie Paper? We can frolic in the mist. We are gentle and loving and kind. Dragons live forever, but not so boys and girls
.
We dragon mothers know this better than most, and while we will not live forever, we
will
live for the rest of our lives with a great big hole blown through our hearts. To endure this requires a barbaric strength (and I don’t mean the kind that dictates the pulling of privileged strings, the hounding, the hovering, the pushing) and a ridiculous amount of grace and humor. Great strength combined with a raw vulnerability: the ultimate expression of power.

I wasn’t interested in music class and swimming lessons for Ronan because I hoped he would manifest some fabulous talent that would set him, and therefore
me,
apart. I wasn’t searching for heaps of praise about what an amazing mom I was. I was interested in creating experiences for Ronan that would make him
happy.
I protected Ronan from what I could. I brushed his teeth to keep them from rotting even though he never chewed solid food. I fed him, held him, rocked him to sleep. I was being asked to remember even when I wanted to forget.

Most important, Ronan taught me that children do not exist to honor their parents; their parents exist to honor them. My time with Ronan was short and beautiful and shot through with light, laughter and, above all, a kind of love that stripped me to the bone. A magical world, yes, where there were no goals, no prizes to win, no outcomes to monitor. Ronan was given a terrible freedom from those expectations that was searing, brutal and, especially,
true.
Ronan was mine but he never belonged to me. This was not an issue of ownership. A child is not a couch.

Was the care I gave Ronan “worth it”? He would never come sprinting at me with a Harvard diploma in his hand. He would never score a perfect SAT. He never said “mama.” He never knew about 9/11 and other catastrophic events that happened all over the world. He would never go to war. He never knew any wickedness at all. That was my role as a dragon mother, as it is for others: to protect my child from wickedness and as much suffering as possible and then, finally, to do the hardest thing of all, a thing most parents will thankfully never have to do: let him go.