The Still Point Of The Turning World (15 page)

17

It was as if I had stepped free into space

Alone with nothing that I had not known already.

—Seamus Heaney, “Station Island”

R
onan loved to swim, and it was the activity Rick liked best to do with him. “He looks so calm in the water,” he always said. “You can tell he enjoys it.” There was so little we could do for our son; this, at least, seemed to please him and make him undeniably comfortable.

In the therapy pool at the community center near our house, Ronan had group swimming time with other kids with developmental disabilities, or “issues,” although I often wanted to respond to the therapy pool lifeguard’s question “Does your baby have disabilities?” with “Name me a person without a physical issue, and I’ll show you a dollar nobody wants.” But I always held my tongue and politely said, “Yes, he has several,” thinking,
He has every one you can possibly imagine.

We arrived a bit early for our first therapy session and stood near the locked door of the therapy pool room as kids and their parents began to arrive: a two-year-old girl wearing a hot pink swimming suit, a tiny nine-month-old girl with a fuzz of blond hair (one half of a pair of premature boy-girl twins), a little boy with the thin, unmuscular limbs and stiff movement that I recognized as cerebral palsy, and a boy with a round face and no language—although he didn’t need it, because as soon as he got into the pool, his face came alive. He plunged his hands below the surface of the water. His mother kept her arms around him, steadying him as he splashed and kicked. They were both laughing. By the time Rick was ready to walk Ronan down the ramp and into the pool, the humid air and the fact that it was Ronan’s nap time had put him to sleep. The lifeguard, who looked stunned with boredom, oversaw our “special needs” group. Again, the silliness of these categories. We go on and on in this culture, especially in our schools, about how special every individual child is, how much they matter, and so doesn’t it follow that if every kid is so special and unique, then
all
of us have special needs? I splashed a bare foot in the water and thought about, of all things, my trip to Israel six summers before.

I’d gone to Israel to be with a boyfriend I loved and we walked and walked around Tel Aviv and Jerusalem. We visited Masada and King Herod’s old crib. We rented a car and drove to Nazareth, to the Sea of Galilee, a great, clear blue eye surrounded by square apartment buildings. We visited the river Jordan, site of so many watery submersions and the origin of much mythology about rebirth and salvation. When I saw the disappointing strip of brown river, I realized that I’d been expecting, against all knowledge to the contrary, a clean and chlorinated pool, like something from an all-inclusive beach resort. The site of Jesus’ tomb was mobbed by a line of tourists waiting in swaying, impatient lines that reminded me of the roller-coaster line at Six Flags. I had a craving for a funnel cake, for fried dough covered in brown sugar, grease soaking through a paper plate. Outside the church gates, tour guides wearing black jeans and white shirts waited for their groups, smoking hand-rolled cigarettes in the sunlight. After we entered the Garden of Gethsemane church through a grove of olives that looked much smaller than in my imagination, a priest shushed us violently, his reprimand washing into the high rafters. Walking through the notorious Orthodox neighborhood of Mea Sharim, sweltering in my long-sleeved shirt, a small boy with bright blue eyes hissed at me and covered his brother’s eyes. The two boys were under five and dressed in dark suits. They walked alone—no parents in sight—down cramped streets running with wind and trash. Printed bulletins begging women to respect the residents’ way of life and dress modestly had uncurled in the humidity and flew down the streets like errant paper birds. An empty doll’s carriage—a child’s lost toy—hugged against a wall, cornered by wind, before a shift in the wet breeze sent it careening down the road, its wheels spinning inches above the ground as if in a cartoon. At the Church of the Holy Sepulcher, the assumed site of Jesus’ actual crucifixion and entombment, we waited in a long line to see the stone where his body, after it was taken down from the cross, was washed and prepared for burial. By that time I was not expecting to be moved by any of it, and I was not.

Ring around the rosies, pocket full of posies, ashes, ashes, we all fall down.
The water therapists belting out this old song from the Great Plague about people dropping dead brought me back into the room, to the pool where kids splashed and cooed and kicked.
As Rick descended into the water, the older kids and their parents were already singing in a circle near us.

“You like the water?” I asked Ronan. His face betrayed surprise and then pleasure, the same expressions he made when trying a food for the first time. Rick held Ronan the way our physical therapist taught us: one palm under the head, the other palm under the back, allowing him to glide along the surface. Back and forth, back and forth, his pale and perfect baby body chubby and buoyant, his permanently pointed toes making ribbonlike waves in the surface of the water. His hair spread out around him like pale seaweed. He smiled and kicked when he could. I sat near the edge and dragged my toes back and forth through the water.

Rick explained to the therapist that Ronan’s motor skills were locked at a six-month level and that these, too, were already fading. She nodded and touched Ronan’s cheek. I was always wary of new people—worried about their reaction to Ronan, ready to strike if they were rude or seemed upset by the way he looked, but she was kind, and she gently took him from Rick and swam with him around the square pool, talking and smiling as Rick and I watched. She looked like a mermaid, swimming with a treasure in her arms, holding it out, preparing to present it to appease some underwater monarch, some beast of the sea.

The kids and their minders (Rick was the only father), bobbed in a circle and sang a welcoming song while one of the therapists passed a ball to each kid, one at a time.
Good morning 
(pause)
to Ronan
(pause)
we’re glad to see your face, good morning
(pause)
good morning
(pause)
to you
. Jordan, Ashley and Joshua were all greeted in turn. I thought:
I’ll bet Ronan is the only one of these kids who is going to die before he turns three.
I felt angry and small and mean. I wanted to leave. I wanted to vomit. I wanted some kind of resurrection that I knew would never arrive.

I watched Rick carefully learning from the therapist how to lift Ronan up and down in the water; how to hold him under the arms and wave his upper body one way so that his bottom half swayed in the other direction, and it went on like that, his torso and then his legs moving from side to side, as if Ronan were swimming or moving on his own, a slow underwater dance.

When Ronan started to whine, letting us know that he was done with swimming for the day, Rick walked him up the ramp and out of the pool. I kept thinking of baptism, of those full-body immersions in the Jordan, or of the
mikveh,
when the whole body goes in one way and comes out different, changed, pure, whole, rearranged, saved, hallelujahed, whatever. At the Dead Sea, which looked about as glamorous as an outdoor pool at an interstate Motel 6, bathers emerged like prehistoric people at the end of the beach where the black mud was deepest, like Adam stepping out of the hand of God, fully formed but completely new. Wet, fresh and covered by mud, his slimy footprint visible on every surface he crossed, Adam was eager to find a mate and name some animals. People waited to use a water hose in the center of the beach to wash off the mud. Wielding it with glee and playfulness, sometimes a bit vengefully, parents and partners and siblings released body after body from anonymity, the second skin rinsing away to reveal freckled shoulders, wacky tan lines and wide hips, misshapen belly buttons, lumpy C-section scars, a middle-age paunch. All the details of the recognizable self.

“He’s taking the waters,” Rick joked as we drove home, as if Ronan had attended some nineteenth-century bathhouse in order to cure his various upper-class ailments. “If only it were a cure,” Rick said quietly, and I avoided looking at his face in the rearview mirror.

When we got home, I put Ronan down for his nap and rode our exercise machine on the highest possible speed to an episode of
Spooks,
the British spy show. Terrorists and bomb threats and back-stabbing politicians, and at the end everything was resolved. Everything was put right.

Watching Ronan float near those other babies, and yet outside of them, feeling only his body in the water, suspended, his dad’s hands supporting him, the echo of laughter and voices, I had one of those moments where the situation I was witnessing had to be a dream or, more precisely, a nightmare.

I had another dream at Yaddo that specifically haunted me in the days and weeks and months after Ronan’s diagnosis. One afternoon I fell asleep in the heater-burned air of my small bedroom, listening to the winter rain crackle against the ice-covered trees outside the window. In the dream I sit up and ask, “Where’s the baby?” but I am alone. I leave the bed and walk into the kitchen. I have forgotten to put on my leg (and yes, in other dreams I have remembered to do this, remarkably), but the dream mind, ever wise, swiftly crafts a solution: I will float. I am floating in the kitchen and I realize the dining room chairs are hanging from the ceiling or, more specifically, they are hammered to the ceiling, nailed. A ceiling of crucified chairs. The house is empty. The world has been reorganized in some new and terrible way. In the dream I vomit (while floating) and the chairs, still nailed up, rock back and forth as I holler into the empty space in a bitchy yet anguished and very Job-like voice, “What’s next?”

On my last morning at Yaddo I woke up with that dream print on me—dread in its purest form, a moment of stillness like that single calm beat before catastrophe strikes. I thought of the lines from one of my favorite poems by Sylvia Plath (who, decades before, was also pregnant at Yaddo):

I am calm. I am calm. It is the calm before something awful:

The yellow minute before the wind walks, when the leaves

Turn up their hands, their pallors. It is so quiet here.

The sheets, the faces, are white and stopped, like clocks.

Voices stand back and flatten.

—Sylvia Plath, “Three Women: A Poem for Three Voices”

The feeling of dread, the flattened voice inside, waiting to howl, waiting to erupt, held on to me. For days I was swaying in dread, gripped by it. I felt as if I’d landed in the wrong place, the wrong
life.
I felt poised for something terrible to happen, for the “what’s next?” to reveal itself. Like pain, dread lacks both metaphor and explanation, but I recognized that same feeling as it descended on me in the moments after we received Ronan’s diagnosis.
This is happening,
this is happening.
The chairs, the floating, the sickness, the dread. Dread is the worst kind of fear, marked, as it is, by an absence of hope. Each day I worked to push it down and intellectualize it as if this might banish it, but like grief, dread’s close cousin, its morphology was constantly shifting.

I thought about the dream constantly after Ronan’s diagnosis, so annoyed that my big bad expensive brain could not accurately picture or imagine what Ronan’s experience might be like, the quality and texture of it. As one neurologist wistfully noted, “We still know very little about the brain.”

Ronan had what we called “stations” in the house: his swing, a lap, the bouncer, the beanbag, the floor for tummy time, which he did for a while, and in one of his backward stages he would lie on his back and lift a hand to touch the stuffed animals swinging from the trapeze above his head, a toy meant for three to six months. All his toys were used in reverse.

Eventually Rick had the sad task of “triaging” Ronan’s toys; we decided to put the ones he could no longer use in storage, out of sight. Sitting on the porch I could hear the crunch of plastic, the occasional twitter of a singsong rhyme (“Yankee Doodle,” “The Itsy Bitsy Spider,” “Twinkle, Twinkle, Little Star)
from one of the singing trucks or monkeys or blocks. Just another task we never expected we’d have to do.

The bouncer didn’t last long, and soon Ronan could not see the stuffed monkey and the lion swinging from the trapeze, so there was a lot of lap time and “stretchies” on my bent legs, with Ronan lying back like he was in a lounge chair on vacation and working on a tan. The stations of the couch: under an arm, on a lap, snuggled into the corner or enveloped by the beanbag. He might spend twenty minutes moving a soft ball back and forth one inch in one direction and then in the other. There would be other stations, too, and of course, the final one.

In that first year of Ronan’s diagnosis I often thought of this station, one of the most beautiful and terrible: Rick walking out of the pool with Ronan in his arms. Water dripped from Ronan’s fingers and toes, from the ends of his hair. His father’s footsteps created ripples in the water that echoed all the way to the other side of the pool.

18

O
n Mother’s Day, four months after Ronan’s Tay-Sachs diagnosis, I tossed out all the old parenting books, all the old certainties and myths. “I felt like I was robbed of time but I didn’t have long enough,” another dragon mom told me. And although I often said that diagnosis day was the worst day of my life, I knew that Ronan’s last day would be worse. When Elliott, the baby closest in age to Ronan, died, I exchanged e-mails with her mother, Becky, who had been my mentor, and she sounded as though she were writing from another planet. Who could bear it?

Who was I as a mother? I tried to be valiant and insightful, but most of the time I thought:
What the hell is going on?
Ronan and I were on this singular path of motherhood-sonhood: one of us knew that the other would not survive. I was supposed to be guiding Ronan through this life and then out of it and into whatever came next, but much of the time I was flailing around in the unfathomable, endless dark, tripping along, occasionally stumbling over a moment of peace, a rough section of ground I hadn’t expected, full of knobby tree roots and jutting stones. Making mistakes, feeling focused and angry but achingly free. I felt blind in every possible way: physically, emotionally, spiritually. I also felt switched on, electrified and aware, as if I were on fire or could eat fire or spit sparks, burn something down. Out on the arroyo path with Ronan in the front pack, I often closed my eyes and trudged along, thinking,
It’s you and me, little dude, and this is all there is.
It was like stepping through a trapdoor; I dropped and dropped and dropped. I felt a wild clarity, an unstoppable grief and, sometimes, a flash of sadness like a dim memory, as if I had climbed a ladder into a realm of ecstasy I had never experienced before.

In an effort to celebrate mothers (and fathers and administrative assistants and grandparents and Cupid, among others), Hallmark may have a lot to answer for, I’m afraid. Who doesn’t feel like crap on these greeting card corporation–sanctioned holidays? Valentine’s Day hurts people who receive no Valentines, and gone are the days when you decorated a box in grade school and class rules dictated that everybody at least got something from somebody else. Mother’s Day and Father’s Day for those who have lost their parents or don’t know their parents or feel alienated from their parents feel like long, arduous days where every vision of a family with a mother or father is a stab in the heart. And for those of us who are childless parents or soon to be childless or have experienced any form of reproductive loss? We keep our little dramas to ourselves, at least in public, fearing that we’ll spoil the party for everyone else and perhaps add to what already feels like a whopping dose of bad karma.

I woke up on Mother’s Day in the old lodge at Ojo Caliente, a hot springs mineral spa between Taos and Santa Fe with this marketing tagline: Soak Your Bones. There were facials and massages available, but it was the dips in various mineral pools that promised to cure particular ailments, or at the very least to make you feel better for the next few hours. (There was, however, no pool for the brokenhearted.) Our room in the lodge looked exactly like I’d always imagined the postwar hotel room in J. D. Salinger’s story “A Perfect Day for Bananafish.”
At the end of the story, the main character shoots himself on the edge of the bed in light that I imagined would look just like the light moving into our room on Mother’s Day: vaguely beachy, a clear yellow strong enough to brighten the rustic old furniture and the dusty carpet floors but not enough to warm them. I thought about my grandfather, who shot himself in a hot barn when he was only thirty-five years old. Not exactly an auspicious beginning to my mom holiday. Kids sprinted across the gravel parking lot, yelling and giggling. Birds swooped and hollered, dipping low and then angling away.

After breakfast Rick and I quietly sat in a mineral bath, both of us glum. I got an overpriced “relaxing” facial that wasn’t as relaxing as the price suggested. At the beginning of a yoga class in a warm yurt, when the teacher, standing in a circle of sunlight, asked if there were mothers in the room, I turned and looked out the small window, pretending that I hadn’t heard her. Why? Because I knew it might be my last Mother’s Day, at least with a child in the picture, and I did not want to explain that to a roomful of strangers taking an all-levels yoga class at a resort facility in the middle of the desert. I scribbled a wish on a piece of paper and hung it on the “wish tree” but didn’t believe it would do much good. After all, it wasn’t a miracle tree, and if it had been, I wouldn’t have believed in it anyway.

Later we watched people of all ages pad across the newly renovated pool area in velvety robes the color of sand. I spotted another amputee in the steam room and remarked to Rick that the man’s age and the stunning foot work of his prosthesis suggested that he was an Iraqi war vet. I envied his water leg, which enabled him to jump in the water, two legs and all, without having to find a trusted courier to take the leg back to a deck chair and cover it with a towel so nobody would steal it or spill a drink on it. His girlfriend, tan and toned, posed on the edge of the pool as he snapped photos of her, exclaiming “Gorgeous! I love it!”

Instead of these cheery, flower-laden holidays, what about a day when everyone just cries and mourns and laughs and wails? Memorial Day doesn’t cut it. A memorial sounds too strictly ritualistic, too organized. Could we all just please have a big fat day of mourning? Mourning Day. The cards could be blank or sentimental. They could use flowers and lions or dark humor. They might sing or have pop-up features. The tradition: to sit around and cry over pictures of our loved ones and laugh and tell stories to anyone who would listen and drink strong coffee and fancy tea and elaborate cocktails and cheap wine. Everywhere you went on Mourning Day strangers would tell you about the people they’d lost. You would hear their stories and share your own. You would exchange cards or hugs or cheap little Mourning Day placards with cartoons on them. You wouldn’t have to hug or be touchy-feely; you could just talk and laugh and remember, and you wouldn’t have to make plans to talk to or see one another again—just that one exchange, those few moments.

Around Memorial Day the news also lit up with stories of soldiers’ “alive days.” An alive day is the anniversary of a close brush with death, and an opportunity for the living person to celebrate the fact that the date in question is not the one carved into a tombstone or noted on a Wikipedia bio or in an official military letter to loved ones. Soldiers have been celebrating alive days since the Vietnam War, and perhaps for decades before that. They represent a chance to celebrate that an individual has not yet been snatched from this world as we know it, has not yet staggered into the world of “what’s next?” whatever that world may be.
Not today,
I told myself.
Not yet.

On Mother’s Day I was a mother, but a different kind of mother, and alien to the qualities, I suppose, that the holiday was created to celebrate. An outsider. My son was a baby and he already had what I thought of as “alive days,” his little life always hanging by the weakest, thinnest thread. This strange juxtaposition of holidays and feelings reminded me of the mommy groups/get-togethers/clubs I once attended, where the vibe always felt to me so similar—overly peppy and slightly competitive—as to be dishonest. I never felt entirely comfortable in such groups, maybe because, in most but not all cases, the children seemed to be treated as projects, and even when the mothers were talking about so-called parenting “fails,” a smugness crept in.

When I went to my first breast-feeding support group, Ronan was a six-pound, dark-eyed dude dressed in a tie-dyed onesie, screaming his head off unless he was eating (constantly) or sleeping (rarely). I was at a total loss about what to do with him. The other babies were laughing, looking at one another, gumming toys and books and attempting to crawl or just cuddling with their mamas and looking blissful and angelic and sweet. My mother was pawing through the overpriced nursing bras in the “Momma Boutique” in the next room and reminding me that someday I’d be like those moms, and Ronan would be like those other babies: interactive, calm, more of a person than a little red worm. My father was at the Whole Foods down the street buying me a huge pastrami sandwich because I was so emaciated from breast-feeding that I had to eat every twenty minutes. A very nice woman tried to help me use the sling I’d been given as a carrier until Ronan, squirming and shrieking, forced her to say, “He just looks too miserable for this today.”

What amazed me in this mom’s group was the way the other moms seemed to have it all figured out; they talked confidently about which day care staff was truly aware of the latest trends in child development, which nanny would look after the kids
and
clean the house for a low price (“Look on Craigslist for listings written in broken English! They’re the cheapest!”), which coffee shop had the best decaf, which vacation hot spots were the most kid-friendly. I asked them if they were reading any good books, and did they feel, nine months in, as if they had their brains back? No, I was told, but it was good that I was here because if I kept it up, it would mean that Ronan would never have a single ounce of formula. As if that would have been the worst thing in the world, but at the time the prospect of feeding Ronan a sip of formula felt catastrophic. Meanwhile, when I took Ronan to see the gastrointestinal doctor he saw for his reflux, she told me that because of the massive social pressure to breast-feed, “women lie about their breast-feeding habits. Everyone struggles, and very few people can do it exclusively.” Had that pack of cheery, organized moms with their snacks at the ready and their boppy pillows and fancy breast-feeding shirts lied to me? Maybe. I never went back.

As a mother of Ronan I had my dragon mamas, a group I was proud to be a part of. These moms knew how to keep it real, and none of them pretended that they knew it all, which was a relief. Politics, religion, class, career aspirations—all of it was meaningless in the face of the experience we shared, the experience of parenting dying kids. These moms were raw and brave and honest enough to ask for help and they cried and raged in public.

On Memorial Day I thought about the kids and babies with Tay-Sachs who had died, those who would die in the next year, and especially the new babies who would be diagnosed and what those parents would experience, that terrible premourning for an inevitable death. The burden of knowing what will happen (although not necessarily in what order) and knowing you will be there to witness it: a kind of death experience, no doubt. Every day was an alive day with Ronan, and built into that celebration was the dark shade of a future Mourning Day. The constant push-pull: here but not for long. What will come next? Why is this happening to my child? Why is this happening to me? Could I still be a mother if I didn’t feel uncomplicated joy on the day designed to celebrate the art of mothering?

•   •   •

The year before on Mother’s Day, before I knew Ronan was sick, I had attended the requisite brunch of mimosas and pancakes. The next year my mom gave me a locket engraved with Ronan’s name and birthdate. Inside is a picture of him, and because I’d been ensconced in Victorian London while reading every Mary Shelley biography I could find, I did as loved ones once did to remember their beloveds: I snipped a piece of Ronan’s hair and tucked it inside the locket next to his picture, and promised to wear it forever.

Skip forward a year and in the wake of Ronan’s terminal diagnosis, I was driving to Wyoming with my son in the backseat when we encountered some truly bizarre weather. A sheet of dust moved both vertically and horizontally across the road, like a wave of heat but grainier, more textured and complicated. I struggled to keep the car steady in the wind. Tumbleweeds were speedweeds, thorny rockets scraping across the windshield. Gray clouds hung low and thick in the sky like a platform; above and below stretched an expanse of sweet blue sky polka-dotted with cartoonish round clouds. The windmills in the yards of farmhouses we passed looked frantic, spinning so fast they looked like they might fly into the air. The sky was red gold and slightly apocalyptic. But Ronan and I were alive in it, together, headed down the road and straight through the dust and into the oncoming rainstorm. (
I was something orderless in a jar, unable to escape what was happening, unable to get out of what was occurring. All I held on to was that I was not alone.—
Michael Ondaatje,
The Cat’s Table.)
A mother and her son. I felt my heart swell into the open road, into the world. If I were to scream, who would hear me? If I rattled the latch of this room, of sadness and panic and inevitability, who would come? Nobody could save us. But on that day we rode through the storm to find streaming from the sky cylinders of sunlight as thick and strong as any downpour and the clear outlines of the mountains in the distance, some of the peaks capped with snow.
Someday I’ll be alone on this road,
I thought,
but not yet.
“We’re alive,” I said out loud. Ronan sneezed in response and let out a cheerful song sigh.

At the end of the day, after we arrived at my parents’ house, Ronan touched the sweet petals of the lilac bush and the branches of the prickly evergreen tree in the backyard. The sky was clear, the air soft. That was Ronan’s day of living in this world. One more alive day, and also another day—for both mother and son—closer to death. We could wish it weren’t true, we could wish desperately, but we could not have one without the other.