“Hey Haley,” I said.
She looked up at me and smiled. “I have lions,” she said. She pointed to Mufasa and Simba, regally ruling the rocks above a vast African plain. She’d colored the rocks a deep navy blue and the lions bright yellow but the plain was still coloring-book beige, its limits and undulations defined by thin, sharp lines of black ink.
“You want to go for a ride?”
She scrambled to her feet and I reached down and picked her up and held her. We could hear music coming from Chase’s room and I settled Haley on my hip. “Or do you want to dance?” I said. And we swayed back and forth while Pete Seeger sang A-bi-yo-yo, yo yoyo, yo yoyo. Haley wrapped her arms around my neck and rested her head on my shoulder. I loved the way she held tightly to me, like a monkey, and I wanted to put her in the car and flee, but I could feel how tired she was; her head was heavy and her weight sagged against me.
“Come on, Haley-Bird. Let’s go downstairs and make some dinner. Want some spaghetti?” I lifted her around the waist, hands on each side of her ribs and she spread her arms like wings and I swung her gently from side to side. When I flew her through the air like this, like a bird, she laughed and yelled at me to do it some more, her whole little body taut with pleasure and excitement.
ONE OF THE GUILTY secrets of those who care for someone with a disability is how angry we can become. I don’t mean to suggest that we become purely angry at the person we love, although it can seem to take that form. I know I became furious with Zip and sometimes I was exhausted and irritated with Chase and just plain screeching mad that he could not seem to do one single thing that I asked him to do. But that isn’t the kind of anger to which I refer, although that anger has brought me a good deal of shame and a good deal of grief, stemming, as it did, from an inability to understand truly rather than simply to know. I mean that we become angry at the disability itself. We feel the injustice of it, and see the ways in which that disability, that thing that belongs to someone else, which neither that person nor we would have chosen, has broken our lives open, too. It does not seem fair. And we are tired. And sometimes it feels unbearable always to be barred from the things you once enjoyed. Over time, it can become exceedingly difficult to live without a moment or two of privacy or to accomplish something mundane, like going to the grocery store without having every person in the world feel it is his or her prerogative to stare at your child. We struggle not to be angry, because it isn’t helpful, not in that moment, but also because it’s painful to be reminded that you live life at a remove you did not choose for yourself. But anger is an emotion. It comes.
TWELVE
After we planted the lawn and the grass came up and we put up the swing set, we had a strange hot autumn day. A wind blew up from the south and carried before it pebbles from the edge of the road and scraps of old litter grown flat and blank from many days lying in the rain. This day was dry. High white clouds swept over us and I remembered what it was like to be a child and to lie on my back and watch the movement of the clouds and pretend their slow drift was the movement of the earth. The wind was hot and the sunshine on the grass was hot and I sat under the breezeway with my books and student papers on my knees. I thought I might work and for a while I did, but eventually Chase blasted through the back door, Haley right behind him, and Zip right behind her.
“Mom,” said Chase. “Mom, Mom. We’re going with Dad. Okay? Okay?”
Zip looked over to me and said, “You said we needed milk.”
Haley wore a white tank top covered with pink flowers and blue and red and green plaid shorts and yellow rubber boots that came up to her knees. Her long hair blew around her shoulders and she pushed it back out of her eyes and grinned at me.
“Don’t you want to stay here and play?” I asked her and she squinted at me and shook her head, no, no.
Zip let Chase ride in the front seat and buckled Haley up in back and got in behind the wheel and backed slowly and carefully in his grandmotherly fashion out of the driveway. As the car slid past me, Chase turned his face to the window and beamed at me.
I finished grading six papers before they returned, which meant they’d been gone more than an hour, even taking into account the number of times I stopped reading to look out at the trees, to listen to the wind roaring through the tops of the dark evergreens. It was rare to sit alone like this and I found myself distracted by small things, my concentration ready to drift at the slightest provocation. I considered the ivy growing under the apple tree by the back door and wondered if I ought to pull it up or leave it. I watched the children’s swings move unbidden under the board. Then Zip pulled the car up and Chase flung open the front door and bolted for the house with a bag in his hands and banged the screen door behind him and Zip opened the back door and unbuckled Haley, and she stepped out and then around the car in her yellow boots and she had a bag in her hand, too, as did Zip.
“Did you get the milk?” I asked.
He stopped and hit himself in the forehead with the heel of his hand and grinned at me.
“I’ll go,” I said. “I don’t mind.”
“No,” he said. “I’ll go. I just have something to do first. Keep working.”
“I might be about done for the day,” I said. I stretched and let my stretching make my words come out slow and long, like a stifled groan. “I have lots to do but I can’t seem to focus,” I said. But I turned to my lap and took up my pen, which had rolled under the chair, and turned to the first sentence of the next student paper. The student had written something inscrutable and I studied the sentence for a moment, trying to ascertain its subject, first, and second, its validity. Both prospects seemed hopeless. I made a mark in the margin that looked like a question mark. And then a second question mark, since, after all, I had two questions in mind.
The kitchen windows were open behind me and I could hear the kids giggling inside and the rattling of thin plastic bags and the tearing of cardboard and then water running and Zip saying, “That’s enough, Chase, you don’t want to get too much in there.”
“My turn, my turn,” Haley said and Zip said, in the most tender voice you can imagine, “Okay, here you go.”
Chase pressed his face against the screen as if it were a mask. “Mom,” he said. “Oh, Mom.”
“What, honey?”
“Chase,” said Zip. “Come over here. Remember what I said?”
Chase giggled. “Bye, Mom,” he said and the screen went flat.
“Got it?” Zip said.
“Yes.” Haley’s voice was small and clear.
“Okay,” Zip said. “Wait one more sec while I do mine.”
I turned back to the paper and underlined the second sentence, which was not a sentence at all, but a strange amalgam of words that connected in ways that were not obvious to me. I wrote “Frag?” hopefully, as if this might provide an explanation. The third sentence caused me to burst out laughing and then feel ineluctably sad: After the publication of Bleak House, Charles Dickens became known for his sanitary hygiene. I wrote “Really?” in the margin and rubbed my eyes and looked out across the backyard, where our neighbor’s black and white cat picked its way through the flowerbed. I looked back at the paper and felt briefly hopeless, as if my teaching had come to this, which meant my teaching had come to nothing.
“Mom,” said Chase. “Oh, Mom . . .”
I looked up. “What?”
And Zip yelled, “Fire!” and they all sprayed me. Chase had a big Super Soaker and Zip had a slightly smaller water gun, same type, and Haley had a water pistol of the sort I used to love when I was a girl.
I dropped my papers and threw a book on top of them and leapt to my feet. “Why, you, I ought to . . .!” I yelled. And then I ran after Chase and said, “Give me that!” He pulled away and I said, “Help me get your father,” which appealed to him much more. He handed the gun over to me and I turned and ran after Zip, who was, by this time, hiding behind a tree in the side yard.
“I see you,” I said. “
Better give up now.”
“You see me?” he yelled. “I see you!” And then a high-powered spray hit me in the chest. I screamed and took off for the backyard and then turned and fired at Zip, who pounded across the lawn behind me. I got him in the face and he stopped, so I got him again. Then he fired blindly and I screamed again and he got me, this time in the head, and my hair felt cool and wet against my scalp. Haley danced around her father’s knees and he said, “Go on! Go get Mommy!” She ran up to me and squirted me until her pistol was empty.
“I need more,” she said.
“Chase,” I yelled. “Go help your sister!”
“I’ll show you how to fill it,” he said. He ran to the kitchen with Haley right behind him while Zip slowly advanced on me.
“Don’t you dare,” I said. “Don’t you dare.”
“Don’t I dare what?” he said. “This?” He squirted me in the stomach.
“I’ll get you,” I said. “I swear.”
Chase and Haley came back and Haley took aim at me.
“What’re you doing?” I said. “Get your father!”
But before she could, he was across the lawn in three strides and had hooked me around my neck with his elbow and was spraying down my shirt while I screamed and screamed. I fell to my knees, which just gave Zip a better angle. I squirted ineffectively at him and then threw the water gun to Chase. “Get your father,” I said damply from the ground and Chase said, “Whooooo!” and sprayed the back of Zip’s shirt while he leaned over me and laughed for what felt like the last time.
THIRTEEN
Winter persisted and Chase stayed on at the hospital. I looked for a place that would take him when he got out but the mental-health facilities didn’t want a kid with a developmental disability and the developmental-disability places didn’t want a kid with a mental-health issue. In the state of North Carolina, you had to be one or the other; you were not allowed to be both.
Dr. B had no suggestions. He gave me another chance to talk about Chase’s grim prognosis. He said he was sorry. When we were through, I stood blinking and damp-eyed in the doorway of Chase’s room and watched him pace the length of the nurses’ station, turn, pace back to his room, turn, and pace the length of the nurses’ station again. His trousers sagged down around his hips, but he paid no attention until Sam stopped him and pointed out that he was about to lose his pants. Then Chase yanked at his waistband while he was walking, hiked his pants up until the hems reached flood height. He didn’t look at anyone as he paced but he tapped his hand against his thighs and every so often fired his weapons.
A young medical student filled out paperwork behind the nurses’ station and tried to enlist Chase in conversation as he passed. “Dude,” he said. “Hey dude. Give me five. Dude.”
Chase ignored him.
Dr. B glanced up from his own stack of papers and watched Chase for a few minutes. Then he turned back to his forms.
I swallowed the lump in my throat and became aware of a woman standing in front of the next doorway. She wore a short camel jumper and a blouse with a Peter Pan collar, white ankle socks with lacey cuffs, and black patent-leather Mary Janes. This was the sort of outfit you’d typically see on a third grader so I was surprised to see that the woman was over fifty. Her mouth was an astonishing shade of red, as if it were a cartoon version of a mouth. For a minute I wondered if she’d wandered in from the adult unit on the fourth floor but then I realized that every so often she’d turn to someone in the room behind her, say something, and someone—a girl, maybe it was her daughter—would make an unhappy and put-upon sound, and the woman in the child’s outfit would turn and continue to survey the dayroom.
She watched Chase make his way along the length of the nurses’ station. She said something to him as he passed but he didn’t respond, didn’t even bring her into focus so he could turn a laser on her.
She began to sidle toward me, her arms folded across her chest, still watching Chase.
“Quite a place they’ve got here,” she said, her smile hard and unfriendly. Chase passed us and turned and passed us again. She watched him with open curiosity. “I guess it takes all kinds,” she said, and then laughed a little. She looked at me and stuck out her hand. “I’m Shirley Powers,” she said. “That’s your son, isn’t it? I’ve seen him here before.”
I ignored her hand and didn’t give her my name. This was not some sort of demented PTA meeting; this was a place, if ever there was a place in the world, where it was absolutely essential to respect everyone’s privacy. My silence didn’t stop her. She let her hand hang between us and then dropped it back to her side.
“He’s quite a boy,” she said.
Chase yanked his pants up again and I felt my heart twist.
“Oh, ho,” said the woman insanely dressed like a seven-year-old child. “Look at that!”
I turned to her and leveled her with my most unfriendly look. “Would you excuse us, please?”
She stopped smiling. “All right,” she said. And then she backed away.
As time passed, I came to see more and more parents on the unit. Sometimes I’d see the whole family gathered in the classroom, along with the doctor, the social worker, and the psychologist who ran the groups. The doctor did most of the talking while the patient stared at his or her knees. You had to wonder what became of these kids when they left the hospital, what their prospects were for happiness, what combination of hope and encouragement needed to obtain for something like a future to evolve, and just how heavy were the odds that were stacked against them. As I searched for a place for Chase, I learned that there were facilities across the state that would take some of these kids, the ones who’d been abused, the ones who’d pushed their luck way too far, the ones who couldn’t live at home anymore, the ones who ran away but weren’t able to keep running; these were locked, level-four facilities that housed violent kids who’d committed crimes—theft, rape, arson, murder—often after crimes had been committed against them. These were the only facilities in the state that had on-site medical and nursing care, round-the-clock staff who were awake all hours of the day and night, and programs of therapy throughout the day. The next step down, the level-three places, were less restrictive and functioned more like group homes, where no one who stayed on duty overnight stayed awake, and the kids who lived there were supposed to be independent enough to go to school during the day, look after their belongings, contribute to the household chores, perhaps hold a job. These facilities weren’t locked and had a nurse who dropped by once a week and a doctor who came by once a month.
One level-four place called the Lighthouse said it took developmentally disabled kids but when I looked into it, I discovered that it was filled with children who had committed serious crimes and the expectation was that the developmentally disabled patient would be in that league, too. I talked to a woman I’d met through a program called TEACCH, which stood for Treatment and Education of Autistic and Related Communication-handicapped Children. Her autistic teenage daughter had had a psychotic episode and landed at the Lighthouse; she lasted ten days before they pulled her out for fear that she would be raped or killed.
Finally, Linda, the area mental-health-unit social worker who’d arranged for Chase’s CAP services and now led the search for a place that might take Chase, found a level-three place that said it was especially designed to meet the needs of teens with both a developmental disability and a psychiatric illness. It was in Jacksonville, down on the coast, three hours away from Chapel Hill. I thought this was too far away but I said I would drive down and take a look.
Jacksonville is a military town, the home of Camp Lejeune. It has tattoo parlors and strip joints on every block, interspersed with burger places and pawnshops. The day I visited, its streetlights were swathed in patriotic bunting to cheer the soldiers who were getting ready to ship out to Iraq, or the families left behind of those who had already gone.
I followed the main street past a Wal-Mart and along the chain-link fences
that bordered the base. The home was on a side street off the main drag, a modest one-story place with dingy pink shutters and three unassertive shrubs in front, where, the director was quick to mention, she had a lawn service come and mow the grass once a week, to preserve a homey feel. She showed me the main living areas, and the bedrooms that were mostly shared by two kids doubled up; some of them had creatively hung sheets to make dividing screens. Kids had TVs and computers and stereos but there were strict rules about the use of such items, as well as about the music they could listen to and the movies they could watch. No one was at home during the day but off at the residential service’s day program, which was held in the main office; she mentioned that I’d seen that when I came in. I thought of the small windowless conference room where six kids who looked to be anywhere from eight to sixteen sat around a single rectangular table and worked on a coloring project while someone who looked like a high school student supervised them. None of the clients went to local schools, the director admitted, and they were always looking for fun things to do, but this being Jacksonville, there wasn’t a lot that was local that would make a good outing. She mentioned band concerts in the town park in the summer but said they only went to those when they had the staff and it wasn’t too hot. They didn’t have a nurse to administer medication but there was an on-site staff person who kept an eye on that.
The director told me they didn’t have any openings now but she was looking to expand the program. On our way back to the main office, she drove by a house that she planned to buy so I could see the possibilities there and said it might be ready in the next two or three months.
We sat in her office while she interviewed me about Chase, interrupting herself only to flip through the pages of his application for admission or write with intense concentration on a yellow legal pad.
The Boy Who Loved Tornadoes Page 15