“GLAD YOU’RE HERE.” TINA, one of the nurses at the Children’s Home, smiled as Chris approached the unit desk. “ Dusty’s been a royal pain in the butt all week.”
“Yeah?” Chris grinned as though she’d complimented him. They all complained about Dustin—he could be a demanding child from the confines of his soundless, sightless world—but Chris enjoyed their tales of his four-year-old son’s stubborn opposition. He liked that Dustin was a fighter, that he didn’t submit easily to the cross he’d been given to bear.
Chris sat on the edge of the desk. “What’s he been up to?”
Tina closed the chart on which she was working and stood to put it in the circular rack. “He yanked out his feeding tube yesterday.”
Chris’s eyes widened. “You mean he used his hands?”
“Oh, no.” Tina looked chagrined at having misled him. “You know he’ll never be able to do that, don’t you Chris?”
He nodded.
“No. He rolled around on the bean bag chair until it came out.”
“Oh. What else?”
“The crying.” Tina sounded almost apologetic as she leaned back against the counter. She drew her brown hair up into a pony tail, fastening it with a rubber band she’d had around her wrist. “You know how bad it gets sometimes. Tuesday and Wednesday we thought he’d never stop.”
More than anything Chris hated the crying. No one knew the reason for it, and Dustin had no means to communicate the source of his discomfort. On the few occasions it happened during one of his visits, Chris would desperately try to still the heartrending sobs. He’d change his son’s diaper, adjust his feeding tube, walk him down the halls in the wheelchair, rock him, sing to him, and Dustin would continue to cry. Chris would often end up in tears himself from the frustration and pain of seeing his son in such unrelenting anguish. Dustin wasn’t the only child here who could cry for twenty-four hours straight. Chris had nothing but respect for Tina and the other high-energy women—and a few men—who had chosen to work with these kids. The rewards were few.
He found Dustin in his room curled up on his bed. He was facing the window, the one with the view of Mission Valley that he could never appreciate. Sunlight poured into the room, bouncing off the yellow walls and lighting up the colorful balloons on the ruffled curtains. This wasn’t a sterile place. Chris had wanted someplace homey, someplace warm and as unlike an institution as it could be. Dustin would never know the difference, but he would.
“Hey, Dusty,” Chris said, resting his hand on Dustin’s back. The little boy jumped, startled, and Chris leaned close. “It’s Daddy.” He let his lips linger on the warm, almost febrile skin of Dustin’s temple and noticed how clean his skin and his hair smelled. The care here was excellent.
Dustin grunted and tried to roll over, and Chris carefully picked him up, pulling him into his arms. Dustin rocked his head, so vigorously that Chris had to cup his hand around the boy’s forehead to prevent it from smashing into his jaw.
Chris sat down in the armless rocker, which he had bought for Carmen during her first pregnancy, and let his son thrash and struggle to get comfortable, all the while crooning to him in words Dustin couldn’t hear, but which Chris knew he picked up on at some level. The vibrations, they’d told him. He feels the vibrations in your chest, your throat. In the air.
“How’s my boy?” Chris asked, rocking.
He never allowed himself to think beyond the moment, to wonder how he would be able to hold Dustin this way when the boy got older. If he got older. His heart wasn’t good, and Chris wouldn’t allow the tests to determine the extent of the damage, tests that could only add to Dustin’s suffering and do nothing to improve the quality of his life. Sometimes he wished his son looked worse than he did. It was hard to convince himself of the severity of Dustin’s condition when, except for his eyes, he was beautiful. He was of average build for his age; his useless limbs were well-formed. His hair was thick and very dark, his features perfect. Would Chris still be able to pick him up, sing to him, rock him, when Dustin was ten? Fifteen?
“He’ll never be able to know the difference between you and anyone else,” one of the staff had told him long ago, in an effort to be kind, to let him know that his regular visits were not really necessary. But Dustin did know. By the time he was two, even the staff had to admit that his spirits seemed to lift when Chris arrived. Only recently did one of them tell Chris that Dustin sometimes cried when he left.
Dustin’s thumb jerked up to his mouth, and he sucked hungrily, his eyes open, the corneas silvered over, like the milky backing of an old mirror. He made small humming sounds deep in his throat, sounds Chris had long ago decided were Dustin’s way of showing contentment. Chris rocked, shutting his own eyes, resting his chin against his son’s sweet-smelling hair. He began to sing, quietly.
Tell me why the stars do shine
Tell me why the ivy twine
Tell me why the sky’s so blue
And I will tell you just why I love you.
When Chris stopped singing, Dustin pulled his thumb from his mouth and begin to rock—his agitated, frustrated rock—making wild sounds: “Nah! Nah! Nah! Unh! Unh!” Chris began to sing again.
Sometimes he stopped intentionally just to get Dustin’s reaction, just to feel as though there was some sort of communication between them.
“Would you like to know what your mother is up to?” he asked when he had finished his song. “She’s really cooking, Dusty.”
He remembered Carmen on News Ninethe night before. She’d said that Jeff Cabrio refused to make a statement to the press—Carmen could make a “no comment” sound like a major news event—but that Mayor Chris Garrett reported “good progress” on the rainmaking project. No one had a clue what that meant, but it didn’t matter. From very little information, Carmen, in her old, inimitable style, was creating a mystique around Jeff. She described the long hours he spent in the warehouse, how he sent out for food to avoid seeing other people, how he returned home to his cottage long after dark and was up again before dawn.
“There was a blurb in the paper today,” Chris told his son. “It said that News Nine‘s ratings are up a bit on the nights your mom makes her North County Report. What do you think of that?”
Dustin was still. Nearly asleep.
“And I painted your old room the other day.”
Dustin’s head was heavy against his chest. Chris stood up slowly and lowered his son back to the bed.
“Unh! Unh! Unh!” Dustin sprang to life. And then the crying began, and with it the wrenching pain deep in Chris’s chest. He set his hand on the little boy’s back again.
“Dustin, don’t do that. Please, don’t.”
“I’ll stay with him.”
Chris turned to see Tina standing in the doorway. He looked down at his son, whose little shoulders heaved with his sobs.
“I hate when he does this,” he said.
Tina nodded. She pushed past Chris and began fiddling with Dustin’s covers, as though what she was doing was more important than anything Chris could possibly do right now. It was a game they played, Chris knew. A game designed to give him permission to leave, guilt-free. Although nothing regarding Dustin would ever leave Chris guilt-free.
IT WAS NEARLY THREE o’clock when he arrived at Sugarbush. Carmen was about to get into her car as he was getting out of his. He was certain she knew where he’d been, that he went to San Diego to see Dustin every Saturday.
“Hi,” she said.
“Hi.”
She looked toward the cottages, squinting against the sun. “How long is the drive?” she asked.
“An hour and a half.”
“Oh,” she said, simply, disinterestedly. She said nothing more to him as she opened her car door and slipped in behind the steering wheel. But before she started the engine, she smoothed her thick hair back from her face, and in her huge eyes he could see the unmistakable shimmer of tears.