The Still Point Of The Turning World (18 page)

That night in Spain as one season drained into another, I listened to dogs barking all night, goats bleating wearily from hillsides.
There is nothing I understand,
I thought, and finally, after days of thinking and writing and ruminating—the exercise of the grief-stricken—I fell asleep.

21

The world of dew

is the world of dew

and yet, and yet—

—Kobayashi Issa (after the death of a child)

I
n September, Rick and I took Ronan on a routine visit to the neurologist. Another trip to the Mind Center, to the drab strip mall sprawl of Albuquerque, the air ten degrees hotter than Santa Fe, the roads at least one lane wider. The sky was clogged with smoke from the various fires that had been raging across New Mexico for nearly a month, since mid-June. The horizon was choked by a haze that swallowed the view of the Jemez and Sangre de Cristo mountains. Fire was crossing state lines; smoke was drifting across borders.

In the waiting room at the neurologist’s office we sat with Ronan and Skipit, the “ultra soft” light blue dog toy with elongated arms and legs that made him look like a stretched-out bunny. We watched kids with normally developing brains scribble with crayons at a small table in the corner. Rick cradled Ronan’s head in his hands and let his body rest on his forearms. I rubbed Skipit the dog-bunny over Ronan’s hands and he blinked his pale-lashed eyes. Five and a half teeth were visible when he smiled.

The nurse walked us into the vitals room and weighed Ronan in a bucket (twenty-four pounds), probed gently with an ear thermometer to take his temperature, measured his head (in the seventy-fifth percentile) and briefly left the room to get a cuff small enough to fit around Ronan’s arm to measure the pressure of his blood moving through the hidden highways of baby veins hidden by fat.

“You have a monkey, a giraffe and a lion on your shirt!” I told him. “And your shirt is green!”

“Uhn-gee!” he replied, and squirmed a bit on Rick’s lap.

Back to the main waiting room, into another smaller waiting room, then into the actual examination room, and finally the doctor appeared with two interns in tow, telling us that this was a “teaching hospital” and that these soon-to-be doctors were here to learn. Tay-Sachs kids in New Mexico—and really, in most places—are like unicorns. Nobody has seen one although they are rumored to exist.
I don’t want anyone sizing up my child as if he’s little more than a science project,
I thought when I saw the eager, scrubbed faces of these interns. The smell of aftershave floated into the room.

I was wary of those newbies, those docs-in-training, having been prodded and treated like a strange specimen of a body by interns before, like a body under a microscope in the lab, but when I looked at Rick, he seemed willing. I reminded myself that this was not just about me, or even just about Ronan. What if these doctors were able to help a Tay-Sachs kid someday because of what they learned here? I was not a child anymore; if they got rude or inappropriate I would ask them to leave. But they were kind, and at least one of them was energetic and genuinely interested. He sidestepped all the annoying platitudes of “I can’t imagine” and “I don’t know how you do it.” He asked us how we were doing and didn’t flinch at the answers. The other intern sat in a chair near the door taking notes, as silent as a fearful ghost, although he looked spooked. Maybe he had a hangover, I postulated. Or maybe he’d been up for thirty-six hours straight. They asked questions, we answered, they nodded. Rick talked a lot at doctor’s appointments; he was nervous, I think, and sad. He gave the full picture of what was happening with Ronan, down to the smallest detail. His attention to our child was almost sacramental. The devil is in the details—and in sadness as well.

The doctor checked Ronan’s reflexes. We explained that he wore splints at night to keep his feet flexed and eliminate spasms in his knees—little flashes of electricity just beneath his dimpled skin—that happen when the feet are constantly pointed. The splints were decorated with a school of brightly colored fish swimming in a deep blue plaster background above and below the white Velcro straps. When these were fitted at the prosthetist’s office, Ronan’s feet were marked with blue pencil. I remembered being marked with lipstick around my hips, my crotch, my ass, lines like thin red smiles, like skinny, bloody wounds drawn on my body as guides for where the leg should hit, where things should bend and match up, where parts of the made part of the body were supposed to go. All the seams made visible. I was the creature and the prosthetist was Dr. Frankenstein slaving over his creation, fitting all the pieces of my body together, trying to make it right. The prosthetist and his assistant worked in silence, and when they left the room, I flipped over the lipstick tube to look at the name of the color—“Cherries in the Snow.” I used to watch those lipstick scars float off in the bath, as if the water were a handkerchief that could just lift them away.
Kiss kiss, blot blot
and the red bloomed like blood from a wound in the water. Washed away, washed out. It took a few days for the blue marks to wash off Ronan’s feet and ankles. The splints didn’t seem to bother him.

The intern nearest the door flipped the light off and fumbled with his eye light, and for a moment the five of us plus Ronan were sitting in darkness. “Gee,” Ronan said softly and kind of creepily in his scratchy voice.

“Ooh, haunted hospital room,” I chirped, but my voice was too brash, too loud. “Ghost baby,” I said, and then felt sick that I’d said this.

The doctor peered into Ronan’s cherry-red eyes in the darkness—I watched his eyelashes blink, skinny shadows, two feathery doors opening and closing on his cheeks, the curved and shining whites of his eyes, their kaleidoscope colors obliterated by the bright light.

The lights went back on and we all looked at Ronan. “He seems so well loved, like just another member of the family.” We nodded and stared at each other. I thought about Frankenstein’s wretch watching a family from his perch outside the house, in the cold, and I felt myself grow hot and defensive, about to ask, “Well, of course he’s part of our family; what else would he be? What are we supposed to do? Just abandon him? Kick him under the bus?” But I understood that the doctor’s intentions were kind, and that he probably felt as helpless as we did. He was a brain specialist and there was nothing he could do but tell us why seizures happen and then write a prescription. He probably felt useless, helpless and stupid. We knew how he felt. There was no future to discuss. Ronan wasn’t going anywhere but back home with us—home, where the rooms of Sol y Luz Street belonged to him. No doctor would barge through the door of the exam room with a miracle cure. No amount of words could fill the great space between our parenting experience and the doctor’s. He wrote us a prescription for a suction machine, I asked if that would be categorized under durable medical equipment in insurance billing lingo, he said he thought so, and then I reiterated—in a bratty tone I had meant to be much nicer—our decision not to use a feeding tube. More silence. We decided to come back in November. In the smaller waiting room in front of the bigger waiting room where the same kids were still working on the same crayon photos (I watched them through the window in the door), the sweaty-faced receptionist pulled up her giant, complicated computer scheduler on an enormous screen and said, “Okay, Mom, which day do you want?” This question filled me with a dark dread; I thought of the kids who had died of Tay-Sachs already this year. I thought about Ronan’s place in “the waiting room,” and that one day would be his day. Flowers and food and condolences would arrive at the house. Ronan would be buried or cremated. There would be a memorial. He would be gone.

On the way home my eyes started to burn from the smoke. My throat felt dry, chapped. The sky was a hazy, pale blue, the color of Skipit, who was tucked under Ronan’s arm. “The fires are killing my eyes,” I said to Rick, who sat reading a book next to a snoozing Ronan.

“Do you need to pull over?” he asked. I did not. We didn’t want to do this. Nobody wanted to do this. Ronan wouldn’t always be in the waiting room; it was going to be his turn to go through that door soon enough, too soon.
Which day do you want?
What a terrifying question.

In the afternoon Ronan sat next to me while I read in the comfort of the swamp cooler. Outside, the sky was low and muddled. Ronan sat on my lap like the toddler he’d be if he could toddle. His head notched between my chin and collarbone, his arms stretched up around my neck, and I held him as if he’d just come running to me with a skinned knee or a hurt feeling. I said, “It’s really okay,” as if he’d asked me if it was going to be. His skin was soft and his hands were sticky. His mouth smelled sweet. The back of his head was sweaty, ringlets twisting around his earlobes. I held him and inhaled his sweaty-baby-Ronan scent and remembered Rick telling the neurologist, “We’re not totally convinced he knows who we are,” and I thought about what an injustice it was. I’d heard so many fathers say to me over the years, “Oh, I don’t really like parenting,” or they didn’t say anything at all or they were just absent phantom dads, ghost fathers, shitty selfish fathers. Rick’s fathering, this great gift, felt wasted, even though I knew this was an incorrect assessment. How could love be wasted? And how could Ronan not deserve it? What was unconditional love if not love that expects nothing in return, especially from a child who was arguably as helpless as Ronan? We made him, we loved him, end of story. He expected our unconditional love, he got it, and he was not locked in guilt or conflicted about it. I reminded myself that unconditional love asks nothing back; being Ronan’s mom was my giant, painful opportunity to learn this. What I was being asked to do felt both entirely instinctive and completely impossible. To live the reverse of Shelley’s Dr. Frankenstein
,
to love my child without limits or expectations. Years from now he would not be chasing me down, asking “Why didn’t you love me?” He will be dead, and I will have been his mother. It wasn’t the story of motherhood I expected to tell, but sitting there on that hot afternoon I felt I could claim it. I had to. Firefighters who spring into the blaze to save people are not brave; they have no choice.

Firefighters in New Mexico had set controlled burns around particular fires—they started smaller fires in order to control the biggest ones, to prevent them from raging out of control. These controlled backburns were essential for containment. Real or set, in both cases the trees ended up charred husks, row upon row of smoking skeletons made of bark and ash.

Ronan and I rolled to the coffee shop to read the paper, check the status of the Los Conchas fire near Los Alamos, the multicolored maps printed on the front page of the local papers. I learned that fifty years ago Ernest Hemingway had shot himself in the head. His behavior up until that point had become increasingly erratic and paranoid. In Casper, Wyoming, he tried to walk into a propeller when the plane he was traveling in landed for refueling. In Spain I’d felt the tip of the propeller against my cheek, the cool, bright point of that blade.

In that same newspaper I found these stories: the parents of an abused girl were given prison sentences that could never be long enough. The girl was fourteen and had maggot-infested bedsores and weighed forty-five pounds. She had cerebral palsy and was mentally retarded. The murderers of a seven-year-old girl who was dumped in a ditch in 1958 were found. Her family lamented the loss of this “athletic and beautiful” girl who was “going to be something.” I read another story about migrants who were brutalized on the journey to the United States from Mexico and Central America. One of them asked the reporter, “Should I go back? What do you think?” On another page I learned that a lock of President Lincoln’s hair was expected to be worth about $35,000 at an upcoming auction.

There are so many rooms in the house of grief, so many basements without lights or windows, and so many people inside waiting to go somewhere else, to cross some border, to live, to die. You choose a particular door and you cannot go back, you cannot walk back through it. I closed the paper and closed my eyes and put my hand on Ronan’s arm.
Still here, he’s still here.

That little girl who died of starvation and maggot-infested sores was a human being. So was the little girl with “potential” who was murdered and dumped in a ditch. So were all the nameless, faceless people traveling on hot trains and being raped and robbed and beaten trying to get to this country, which would brutalize them further. They were human beings. To be valuable they didn’t need to have so-called potential, whatever that means. Earning power? Advanced degrees? Exciting inventions in their pockets? Beautiful bodies that might sell products and have the added value of boosting the economy? And they lived, even though their lives were truly the stuff of other people’s nightmares. Their stories mattered, even if we never heard them. Ronan’s life mattered, even though I was the one telling his myth, even though his brain was devastated, his body doomed. Sitting at Java Joe’s with Ronan on my lap, I read those stories and felt myself flinch. Yes, I am a writer, but it is not the sum of who I am. We are not what we become, how we look, what we do—are we? Because Frankenstein’s monster was driven to murder, was he only a murderer and nothing more, only a monster? Or was he just a grieving son? And his father grieved, too—that he’d failed him, failed to see the beauty in the creation of his own hands, this wretch he assumed he could never love or understand and therefore never tried to know before it was too late.

Who counts in this world and how much? Who does the deciding? Who has “potential” (that is, value) and who does not? On the patio, thunder rumbled in the distance and Ronan squirmed against my chest, complaining a bit. What did matter was love, given freely and without agenda or expectation. I loved Ronan, this unique person, this human being, without thought to what it might lead to for me, what it might say about me, or what it made others think about me. It didn’t matter if people thought the situation was tragic or the saddest thing in the world, or they thought I’d gone wild with grief or become a mean and manic bitch. So what? This was
my
son, my baby, my “handful of earth,” sitting on my lap, cooing and squawking into an approaching thunderstorm under a dropped and thickening sky, the wind whipping through his hair as if he were on a roller coaster, feeling the fresh change in the air. Oh, I loved him. But that love would not chain him. There was nothing expected of or for him. In that love he was free. A love that was settled and calm, with no more thinking to do. A love that left people speechless, confused, delirious with misunderstanding.