“That wasn’t too bad, was it?” she said and he nodded. She hung bags of fluid on the metal stand and connected them to the tube running from the IV in the back of Chase’s hand and said she’d be back in a few minutes. “You’re just about ready to roll,” she said. “I think they’re just about ready for you now.”
Then the OR team came to get him, and I stood and watched them slide him onto the gurney and then walked beside him down an unlit hallway to a bright, cold room. No one stopped me so I stepped inside and held his hand and kissed him. One of the nurses told me I needed to leave. I kissed him again and told him I would be right outside the whole time and he looked at me and he said, “Mom, Mom.”
“It’s okay,” I said. “Don’t be scared. You’re brave and strong. I’m proud of you.” He looked up at me, swaddled in his white blankets, the IV line already dripping something into his arm, the bag that swung in its crooked cradle, his eyes wide and scared, and yet already beginning to droop. One of the nurses looked at me and said, “We’ve started the medicine now.”
“Chase,” I said. “Don’t worry. They will take good care of you. And I will be outside the whole time.” And then the nurses gathered around Chase and slid him from the gurney onto the table and I kissed him again and made my way to the door. The surgeon was in the hallway outside the OR and she stopped me and asked me if I had any final questions and I shook my head. She squeezed my arm. “Don’t worry, Mom,” she said. “This is going to be okay.”
But I found no comfort in her words and felt the fear of what was about to happen to Chase and told myself that this was something we had to do to save him, to protect him from a worse fate. I knew, or at least had had it explained to me, which is not the same as knowing, that he would be face down on the table in a contraption that would allow them to go at his spine from behind, and I knew that those careful medical words, posterior dissection, meant that the surgeon would take a blade and cut through Chase’s skin and then his muscle, until she’d laid open his spine, and then his bones would be drilled and fitted out with screws and rods and she’d pack the disk area with allograft so that bone would lay over bone until his spine was fused and firm. Afterward, she warned me, Chase’s head would swell to the size of a pumpkin and I must not be alarmed when I saw him, for the swelling would abate and his neck would heal.
I walked back to the family waiting room with the plastic bag full of Chase’s clothes swinging at my side and found a chair. The surgical suite waiting area was fitted out with blond wood furniture, the upholstery some sort of contemporary print of interlocking geometric shapes in teal and eggplant, and with a big screen TV, where families could watch the Today Show while they waited for news of their patients. I sat down and held Chase’s things in my lap. I could feel myself breathe, each breath something sharp that drilled down into the pit of my stomach, until each breath became a physical manifestation of wordless, bottomless fear.
THERE ARE TIME LINES for things like bone healing and bone fusing, and we knew the first surgery had failed when Chase’s spine did not knit together on time. So the pediatric neurosurgeon decided to try again and Chase had a second surgery. This time, the neurosurgeon felt that Chase’s chances of healing would be improved by the use of a halo. On the morning of the second operation, after Chase and I had once again come to the hospital in the predawn hours and he’d held my hand while the nurse started his IV, and after I shivered again, and after I thought how brave he was to go through this again, because this time he knew what it would be like, I sat in the waiting room outside of the surgical suite and strung lengths of fishing line with beads and small flat discs enameled with the yin-yang symbol because Chase had asked for decorations for his halo. The families around me wanted to know what I was doing and I held the strings up and they admired them just the way you’d admire a bit of knitting.
When I saw Chase in the recovery room after the first surgery, a catheter attached to a drain at the top of his spine filled with bright red blood and snaked over the bed rails. He was still hooked up to the heart monitor and some other machine that chimed every few minutes. He looked gray and still, as if the distance between him and the rest of us that was always implied had been lengthened and deepened by the surgery and there was no getting to him now. But when I saw Chase’s swollen head suspended in his halo after the second surgery, my knees went out from under me and I stopped breathing. The nurses propped me up and told me that it looked worse than it was. After Chase got out of the hospital and was able to come home, he looked at the strings of beads and smiled to see the yin-yang, the thing he’d most particularly asked for, and stood very still while I tied the beads to the rods of the halo. When I was through, he lifted his left hand and very gently patted at the beads, which swung a little and made a rattling sound when he moved.
“Is that what you had in mind?” I said.
He patted the beads and they rattled again. “Yes,” he said. “It’s okay.”
THE HALO’S STEEL RING encircles the skull but doesn’t rest on it; instead, the halo is anchored to the head by four long sharp pins that pierce the skull on one end and screw into the steel ring on the other. The ring is connected to unmoving metal rods that are bolted to a rigid plastic frame inside an adjustable lamb’s wool – lined vest. When the halo-wearer sleeps, his head is suspended in this device by the four spikes stabbed into his skull and does not rest on a pillow. Before he got the halo, Chase had been after to me to get something pierced; this went along with his desire to grow dreadlocks, wear black clothes, grow up to be a rock star. After he got the halo, he settled for my explanation that he’d already been pierced, that the halo was the mother of all piercings, that while other people just got their tongues or eyebrows pierced, Chase had gotten his skull pierced and how cool was that?
At first, Chase went outside in his halo but it was difficult to move around and it didn’t take long for him to give up on that. The school told me to keep him home since they didn’t want the liability of a child in a halo in their hallways, when throngs of middle-schoolers pushed and shoved their way from class to class. They sent a sleepy teacher to our house instead, who read the books assigned for language arts out loud while Chase dozed on the sofa next to her. Every day, when I came home from work, I sat him on a towel on the edge of his bed and spread another towel over his lap. With washrags and liquid soap and two plastic basins of warm water, I washed his hair, and then his limbs and torso and trunk and back. I showed him how to soap his skin with the rag, and then dip the rinse rag in the warm water in the second basin and wash the soap away. I handed him the soapy rag and told him to wash his face, neck, and private parts. Then I turned away. When he said he was through, I helped him stand, pinching the towel around his waist with one hand and drying him with a towel in the other.
A FEW WEEKS AFTER Chase got out of the hospital, the elementary school held its annual Wax Museum. The kids were supposed to impersonate wax figures of famous people and were given a list from which to choose: Johnny Appleseed. Martha Washington. Betsy Ross. Nelson Mandela. At the very bottom of the page, in small print, someone had noted that if the child wished to be a person whose name did not appear on the list, it was all right to approach the teacher and ask if the proposed individual fit the terms of the assignment. This meant the person had to be famous enough to be easily researched by a third grader. When Haley told me she wanted to be John Lennon, she pointed out that John Lennon must be as famous as Johnny Appleseed, who in her opinion was really more of a made-up story about a real person than a person who should be famous in his own right.
Haley’s teacher didn’t agree. “We think of these figures as historical in nature,” she said stiffly.
“John Lennon’s dead,” I said. I rolled my eyes at Haley, who danced around in front of me in the kitchen while I held the phone to my ear and tried not to sound too much like either a former professor or a difficult parent. More than anything, I wanted Haley to have something she had picked for herself,
something she believed in on her own.
“You misunderstand,” the teacher said. “We think of these figures as people who contributed to history.”
“Don’t you think the Beatles made a major contribution to American culture?” I said.
Haley’s teacher was silent. Finally she said, “That’s more pop culture. That’s not exactly the kind of history this assignment focuses on.”
“Okay,” I said. “How about this? What if Haley focuses on Lennon the humanitarian?” I imagined Haley describing the Toronto bed-in to the parents of her classmates and I grinned at her.
There was a long silence. “Well,” said the teacher at last. “That would be suitable, I guess.”
The night of the Wax Museum, Haley dressed in black pants and a black turtleneck and a midnight blue velvet blazer and a Greek fisherman’s style cap. She carried an electric guitar we’d made by tracing a shape on cardboard. Just after supper, we got into the car and Chase carefully lowered himself into the front seat, unable to bend because of the halo, and I closed the door behind him. Haley got in back. When we got to the elementary school, the parking lot was full of other cars and we followed other families, each with a child dressed as a historical character, into the school. When we passed into the lobby, I asked Haley if she knew where to go. She nodded. “We’re supposed to meet in my classroom,” she said gravely and quietly.
“Okay,” I said. “Have fun. We’ll meet you afterward.”
She nodded and slipped away from us into the press of people. As we began to walk through the hallways, children took up their places in long rows along the bright corridors, stooping to put paper buttons on the floor before them and then standing as still as they could. Parents stepped up and pressed the paper buttons with the toes of their shoes and the children sprang to life and began to tell the stories of their characters.
As we moved through the school, people cast glances at Chase and did not approach us. I walked with my hand on his elbow and when he was interested in a character, he turned his whole body to face the child and people stepped back and looked at him and looked away and looked back again. Their fascination was the fascination of the morbidly compelled. You could tell that they did not find joy in Chase standing before them, saved from a lifetime of paralysis, but instead saw him as a freak in a strange cage, who perhaps had something contagious, who compelled them to study him even as they recoiled in shock. We moved and they fell back and away but still they watched him openly, with undisguised curiosity. People have this way about them and it’s not to be spoken of contemptuously, because it’s begotten out of an uneasiness that is truly not their fault. If long ago there were freak shows, now they have been replaced with allegedly educational programs on the Discovery Health channel about medical mysteries and strangely formed babies and men with giant tumors. We have all looked at that which is curious to us, as if it is impossible to look away.
But my generosity was tenuous that night, just as it was when people came up to Chase in the grocery store and asked him questions about this thing that could in no way be construed as their business. As we walked the halls, I wanted to tell everyone who stared at Chase that I understood why they looked but this was just a boy here to see his sister—no show folks, turn away.
We found Haley’s friends, the girls who came to our house for her birthday parties and her sleepovers, and I stepped on their paper buttons and admired their performances. The PTA had set up tables of refreshments outside of the gym and I asked Chase if he wanted a cold drink or a cookie but he said no. He stood by himself and flinched when the mothers and fathers gaped at him.
“Let’s go see your sister, okay?” I said, and took Chase by the elbow and steered him out and away from the crowds.
Haley was halfway down the corridor that led to the lunch-room, standing still as a statue in front of a row of black windows, her cardboard guitar on its paper strap slung over her shoulder. A man in a pale pink shirt walked up to her and said, “John Lennon! How cool!” He stepped on her button and she began her speech, carefully written and memorized, in a voice so low that the man had to lean in and listen until his smile became fixed and he shook his head a little. When she was through, he thanked her, and she nodded without smiling and resumed her pose.
AT NIGHT, I LAY in the dark in my room and thought of Zip and wondered what he would think of these things that had befallen his son. And some nights, I thought of our days as a family, when we walked through northern woods at Christmastime and picked the tree and Zip cut it down while Chase and Haley ran among the rows of trees whose dark branches stood crisp and green against the snow. In my dreams, I heard their laughter across all of time.
ON THE DAY OF Haley’s ninth birthday party, twenty minutes before eight little girls were supposed to come for cake and games and a sleepover, Chase’s halo dropped four screws on the kitchen floor. When I called the hospital, the neurosurgeon told me to bring Chase in. As I hung up, the first girl arrived, bearing her birthday present and a furry sleeping bag shaped like a bear. I put Chase in the chair in the kitchen by the front window and told him not to move and then called every CAP worker I knew until I found Andrew. More birthday guests arrived. Their parents glanced curiously at Chase and then chatted with me about pickup times in the morning. When Chase and I left, Haley put her arms around me and I felt a little shiver run through her, as if all she ever expected was for me to disappear with Chase and keep disappearing.
Chase’s dim X-rays demonstrated that the grafts had failed again. At eleven o’clock that night, I sat in a conference room on the sixth floor of the hospital and listened while the neurosurgeon told me the thing to do would be to have the pediatric neurosurgeon take Chase back into the OR. I said, as politely as I could muster, that I would not give permission for that.
The neurosurgeon shot me a funny sharp look. “Chase needs surgery,” he said. “He can’t stay like this.”
“I agree,” I said. “Still, I think with two failures behind us, Chase has earned the right to be treated by the best spine person you have. Not the person who did this to him.”
The neurosurgeon studied the top of the table. After a minute or two of this, he sighed and said, “I believe you’re right. Chase has earned the E-ticket ride next time.”
“Thank you,” I said.
The head of the spine center did not usually take pediatric cases but he saw Chase and agreed that at age thirteen, and at more than six feet tall, he was the size of many adults. Dr. T could consult with pediatric folks if the need arose. He was the kind of surgeon who corrected other people’s mistakes and spine patients came to him from around the country. On the day we went to see him, we ran into the pediatric neurosurgeon in the hall. She said she understood my decision and of course I was entitled to see any doctor I wished, and she’d heard I’d been to Duke for a consult, and she wanted to be clear that I could certainly take Chase there, if that was my wish, but still, she said, she hoped I would give her another chance and Chase’s failure to heal was not her fault. “I would like the opportunity,” she said, “to do the next surgery.” Her voice was choked with tears and anger and I just shook my head.
“I’m sorry,” I said.
THE THIRD SURGERY was successful in the fusion but destabilized the spine just below the new bone. The head of the spine center showed me the X-rays and said, “This looks like it’s just going to keep marching down Chase’s spine. We need to think about doing another surgery, where we come in from the front and the back both and stabilize his entire C-spine.” And so, in June, as school let out, that’s what he did. The surgeon lifted all of the existing hardware out and began again, this time working from C3 to C7. The surgery took more than twelve hours and afterward Chase ended up in pediatric intensive care.
In the months after that, when Chase wore his neck brace, and then took it off, and then got sick and heard voices and waited for the nailers, and then went into the psych ward at the hospital and seemed to get worse, we ente
red a time where the ordinary things that other people did seemed like stories I’d heard about when I was a girl. In this time, we were forced to find hope when hope seemed beyond reach, beyond expectation.
NINETEEN
I rested my arms on the rails and watched Haley lead Lightning into the center of the ring. He was a brown misshapen horse with a head that was too big for his body, and a body that was too short for his legs, and a wiry black mane and a brushy black tail. He reminded me of everything that was misshapen in Haley’s life, as if this disabled horse, whom she loved and feared, could stand in for her disabled brother, whom she also loved and feared.
It was spring. Chase was on Five South and Haley was eleven. Out at the barn, the air still smelled of cold; the pond next to the big ring was skinned with gray ice, and the horses in the dirt lot below the barn blew clouds of smoke with each breath and walked delicately over the frozen mud. Haley finished tightening the girth and then looked around for the mounting block.
She took the reins and settled in her seat, her limbs long and graceful, her seat easy, as if she’d been made to sit a horse, and began to walk Lightning in a big slow circle close to the fence. He tried to walk with his head down but she perked him up and then moved him into a slow trot, posting gently, trying not to come down too hard in the saddle. He shook his head and she sat a little taller. She’d ridden him three or four times in lessons and the woman who owned the barn said she needed someone to work with him and Haley could have extra saddle time if she could come out one or two afternoons a week and just ride him in the little ring. On those days, I got home from work early and each time she was waiting for me, ready to go, wearing her jodphurs and her first pair of riding boots, her black gloves already snug on her hands, her helmet resting on her lap. She said her homework was done and her room was clean and could we please get going?
The Boy Who Loved Tornadoes Page 25