by Geeta Anand
* * *
Two days later, Patrick’s cold went into his chest. Aileen could hear him wheezing. Dr. Hofley told her to bring the baby to Monmouth Medical Center, where he had cared for Megan when she nearly died the previous fall. A blood test showed that Patrick had respiratory syncytial virus (RSV), a common but potentially dangerous condition for young children. With Aileen by his side, Patrick spent a week in the hospital, his bed covered with a plastic tent pumped with an antibiotic mist. Unwilling to trust Megan’s medical care to any of the nurses, John stayed home from work.
Patrick returned home, the virus overcome, but he was back in the hospital within two weeks, again laboring to breathe. This time, Hofley diagnosed him with pneumonia, admitted him into intensive care, and recommended that he also have a tracheotomy to insert a breathing tube in his throat. On Saint Patrick’s Day, a surgeon performed the operation.
Patrick had been in the hospital for only a few days when John called Aileen at the hospital to tell her Megan was wheezing, too. A nurse had showed up to take care of Megan, but he didn’t trust her in an emergency.
“I can’t do this without you,” he admitted.
Aileen told him to bring Megan to the hospital.
John settled Megan in her car seat in the back of their Ford Expedition, her ventilator and an oxygen tank at her feet. He told the nurse to sit in the middle seat and strapped John Jr. into his car seat on the other side. Then he sped down Interstate 195 toward the hospital.
“I’m hungry, Daddy,” John Jr. squealed after they’d been driving only a few minutes. John looked at the clock on the dashboard and realized it was 4 P.M. and he hadn’t fed his son anything after his morning Cheerios.
John remembered the Burger King at the next exit. “We’ll get off at the next Burger King and get you whatever you want,” John said, patting the little boy’s knee. As he swerved into the restaurant parking lot, Megan’s ventilator beeper went off. The nurse checked the tubing connections and found them solid, but the beeper continued to shriek. “I think there’s something wrong with the machine,” she said nervously. Megan began to cry and grab at the tubing.
“Attach the Ambu bag,” John shouted, anxious. The nurse unzipped the emergency bag they always carried in the car and attached it to the tube from Megan’s tracheotomy. She squeezed the bag to drive air into Megan’s lungs, the backup system for just such a situation in which the ventilator failed. Megan continued to cry and flail.
“Here, give it to me,” John said, not trusting this nurse to bag Megan properly. Squeezing the Ambu with his right hand, he used the other to steer the car up to the drive-through window. John Jr., fearing his plans would be interrupted yet again by one of his sister’s medical meltdowns, screamed, “I’m hungry.” John shouted out the order over the cries of both children—“Two cheeseburgers, two large chicken nuggets, two Diet Cokes, and a milk!”—still pumping the Ambu desperately.
Moments later, the attendant handed John the food, looked dazedly at the mayhem erupting in the car, and escaped behind the drive-through window with a bang.
* * *
Forty-five minutes later, they arrived at Monmouth Medical Center. Megan was wheeled into the hospital, looking painfully small to her dad as she sat upright on the adult-sized stretcher, her stuffed dog Pinky in her arms, her ventilator in front of her. An attendant walked beside the stretcher, squeezing the Ambu bag. John followed, holding little John’s hand, feeling nauseous. He was out of breath and more scared than he cared to admit from that harrowing car ride.
“I don’t know how Mommy does this every day, John,” he said, more to himself than to his son, needing someone to talk to. He couldn’t imagine how Aileen faced day after day of caring for the children, knowing a life-threatening emergency was certain to erupt at some time, at which point their lives would rest on the quickness and correctness of her response. He shuddered, remembering the night Megan almost died in the hospital—and how terrified and helpless he had felt. Thank goodness Megan would be getting into a clinical trial and receiving a treatment soon. This family could not live under the threat of this disease for much longer.
“Hi, Megan,” a trio of nurses called as she was wheeled into the children’s intensive care unit, empty except for Patrick in the bed at the far end. Megan waved, and John thought that she looked happy to be back in the unit where she’d stayed for so long the previous fall.
It turned out that both children had pneumonia. As the days dragged on, Aileen felt an overwhelming sense of frustration. She had mastered the medical stuff. She could read the monitors and summon nurses—and Dr. Hofley, if she saw cause for worry. It was keeping a two-year-old and a one-year-old entertained in bed in the same room for two straight weeks that challenged and exhausted her. She put on one Barney movie after another for Patrick, but even he was getting tired of them. Megan had assembled the ballerina puzzle a dozen times a day since she got there. More than anything in the world, Aileen longed to be home.
One afternoon, as she sat between the children’s beds, watching them nap, the intensive care unit quiet except for the Darth Vader–like breathing of the children’s ventilators, she suddenly recalled the words of a fortune-teller who had read her palm on the boardwalk in Atlantic City years ago. She had been an eighth grader staying at a beach house nearby with her parents. She’d sat on the floor of the fortune-teller’s storefront booth, holding out her palm as the woman made her predictions: “You’re going to get married when you’re twenty-two years old to someone whose initials are either J.O. or J.C.,” the old woman had said, squinting at the lines on Aileen’s hand. “You’ll have three children. The middle one will be a girl,” as Aileen nodded happily. “And, oh my, young lady, I can see it here, you are going to be a nurse.” The last part had jerked Aileen out of her fantasy world and she had shaken her head.
“It’s all right except for the nursing stuff,” she had laughed, telling the fortune-teller that she was either going to be a teacher or own her own clothing store.
When Aileen met John, she had remembered to tell him about the J.C. initials and the three kids, but she had forgotten all about the nursing prediction—until now. She was not a nurse in name, but she spent most of her days attending to her children’s medical needs. Tears slid down her cheeks as she thought of how different her life was from how she had envisioned it. She had given birth to three beautiful children, but on most days she felt more like their nurse than their mother.
John arrived with John Jr. to find Aileen pale and subdued. He kissed her and asked, “Are you all right?”
“I’m fine,” she said, turning her face from his.
John didn’t press, a little annoyed at her curtness. With the two youngest out of the house, he felt more rested, he realized, feeling suddenly guilty. Home had been peaceful these past few days without the stream of nurses, the ventilator, and the two sick kids—and, he thought privately, without Aileen.
It was early April when John and Aileen brought Megan and Patrick home from the hospital.
Soon after, Aileen asked her best day nurse if she would stay for the night. She hoped that would ease the tension with John over the nurses that was spilling over into their marriage. As usual, he was up writing letters thanking the Harvard classmates whose donations—$50,000 thus far—had been flowing in. His close friends, Sherm Baldwin, John Gordon, and Mike Ostergard, and the Section J president, Dave Hughes, had each called dozens of classmates to solicit donations to reinforce the plea in John’s letter. The famed networking opportunities of Ivy League schools were already paying off. He had made abiding friendships with people who had money to give or the wherewithal to raise it.
From his study, John heard Megan’s ventilator beeper go off. He paused, waiting for the nurse to find and fix the problem. As it beeped for the eighth time, he ran up the stairs and into her room, tripping over something on his way to the machine. The beeping had also awakened Aileen, who charged into the room a moment behind him and saw imm
ediately that Megan, in her sleep, had pulled on the tube connecting her tracheotomy to her ventilator. It had disconnected, cutting off her airflow. Megan, in her Barbie Princess nightgown, was crying, her lips turning blue, eyes wide and tearful with terror.
Aileen crouched beside the ventilator and quickly attached the tube that had come disconnected. John picked up Megan and put her in his lap. “Everything’s all right, honey,” he said, holding her tightly. She began to cry loudly as her airflow was restored.
“Where’s the nurse?” Aileen asked. Looking around, they saw that the “thing” John had tripped on when he ran into the room was the nurse! She was asleep on the floor—and still hadn’t woken up. Aileen reached down and shook the woman awake. John pressed his lips together tightly, but didn’t say anything while they resettled Megan and made sure the nurse was alertly standing guard over her.
Once they were back in their room, however, his temper exploded. “How can you allow someone like that to take care of Megan?” he shouted.
“She’s our best day nurse! She’s just tired,” Aileen said.
“Don’t you have any standards at all?” John said, not for the first time. “You’re willing to settle on any nurse, however incompetent, who walks through the door!”
“Nobody’s as perfect as you are, John,” she replied bitterly.
“I’m going to fire her right now,” he said. His voice was hoarse with anger. “It’s not like she just fell asleep. She made a little bed for herself on the floor and stretched out. Megan could have died.”
“John, she’s our best nurse. Please don’t fire her. Just having a body to help carry things or, God, just to have somebody to play frigging Barbies with Megan is better than having nobody. Just let her stay for the night. We won’t have her on the night shift again. I promise,” Aileen pleaded.
John relented, but neither he nor Aileen slept that night. They tossed, listening for the beeping of the ventilator. And all night John fumed to himself. He had had it. He had just had it. Where would this family be if not for him? The nurse Aileen had seemed so satisfied with had fallen asleep. He wished he had a wife who would share the burden of organizing and planning their lives. It wasn’t fair for John Jr. to have handicapped siblings. He needed some brothers and sisters who could run around with him. He and Aileen wouldn’t have more kids. They couldn’t risk bringing another child into the world with Pompe disease. He remembered how peaceful the house had been when Aileen and the kids were at the hospital. Maybe he and Aileen should live separately. He would buy the house next door and share the care of the children.
Across the bed, Aileen lay on her side, facing away from John, her back a stiff line against the bedsheets. She thought that she had never seen John so angry and out of control. She couldn’t remember one argument they had had before the kids were sick. On the rare occasion when he had lost his temper, it was only for a second—and never at her. And he would always pull back with the same discipline with which he managed every aspect of his life, from exercise to work to juggling credit card payments. But now his temper flared almost daily.
Well, so what if he was angry? She was pretty angry herself. As if her days at home with three children—two on ventilators—weren’t hard enough, she now had a husband who was constantly criticizing her. She didn’t think the nurses were great, either, but it wasn’t her fault. There was no way to change the nursing shortage in the country, and she never left the children home alone with the bad ones. Angry tears trickled down her face and into the flannel of the bedsheets.
A few nights later, some friends from high school invited John to go out in Manhattan. It had been at least a year since he had gone out with friends. He called Aileen and told her he would be home late. “That’s fine,” she said. He took the train from the Princeton station into Manhattan.
John and his friends went from bar to bar that night, getting more and more drunk. At about 2 A.M., he called Aileen again, this time to say he was spending the night at his best friend from high school’s apartment in the city. In all the years they had been together, he had never gone out with friends and not come home. She slammed down the phone, feeling more alone than she had in her whole life.
John arrived home the next morning, hungover and tired, to find Aileen cold and strained. She didn’t bring up the past evening until that night, when the children were asleep and her bedroom door was closed. Then she rounded on him with the full force of months of pent-up fury.
“Where were you last night, asshole?” she demanded.
“I do everything around here,” John retorted, unapologetic. “I deserved a night off. Why can’t you help more anyway?”
“Help more?” Aileen retorted. “Nobody can take care of these kids like I can. I’m doing my part—I’m taking care of these very sick kids. It’s no picnic, John. Why don’t you try staying home with them all day?”
They stood at the foot of the bed, glaring at each other, until John sat down heavily, his shoulders slumped. After a sharp intake of breath, he spoke again. “I don’t think our marriage is working anymore. Maybe we should think about living separately.”
Aileen, lips pressed tightly together, picked up a magazine and lay down on her side of the bed. “Do what you want, John,” she said tightly. “If you don’t want to be in this marriage any more, the kids and I can go live with my parents.”
“No—I don’t want that,” he said, horrified at the idea of Aileen and the kids moving in with her parents.
“Well, what do you want?” she asked with feigned disinterest, eyes still trained on the magazine in front of her.
“I don’t know,” he said helplessly. He shuffled out of the bedroom and slept on the couch downstairs.
The next night, John and Aileen, who a year earlier had almost never argued, found themselves fighting again. It started with John paying bills downstairs in his study, stressed out as usual about covering the credit card bills and extra medical bills along with everything else that went with having a house and three children. He showed up in their bedroom as Aileen lay watching TV, complaining that she spent too much money on kids’ clothes. “Do you really have to buy something at Baby Gap or Target every week?” he said. Within minutes, the argument had spiraled outward to include the future of their marriage.
“What is going on with you?” Aileen finally asked, her voice rising in frustration and despair. “What do you want from me? Just tell me what you want.”
“A divorce,” he thought to himself, but he couldn’t bring himself to say those words. They stared at one another in hostile silence until he broke away from her gaze, saying nothing.
“Well, when you decide what you want, you just let me know,” she said, raising the volume on the television set with the remote control and looking past him. The sight of her withdrawing from a fight—yet again—infuriated him.
“Fine. I’m going to leave,” he declared.
“Okay,” she replied, her jaw clenched, staring at the TV. “When are you coming back?”
“I don’t know.”
“If that’s what you feel you need to do, go right ahead,” Aileen shot back. She knew her frosty, dispassionate tone frustrated her husband more than any display of anger—he didn’t know how to fight with someone who wouldn’t engage, and more than anything, he hated to be ignored. She needed John more than ever, but her anger wouldn’t allow her to make any overture for him to stay. “I’ll be waiting for you when you get back,” she said flatly. “I’m not interested in a divorce, but if that’s what you need, you let me know.”
John dug a backpack out of the closet, shoved a few changes of clothes inside, and walked toward the door. He desperately wanted Aileen to jump up, wrap her arms around him, and say she loved him and that everything would be all right—he desperately wanted her to beg him to stay. At the door, he hesitated once more, glancing back into the room.
She didn’t take her eyes off the television set.
Alone in his car, John sped
north on Interstate 95, his mind racing. New York flew by, then Connecticut. He didn’t know where he was heading. He would just drive and it would come to him. It was liberating to be out of the house and away from all the demands. Tonight, there would be no beeping. There would be no writer’s block over fund-raising letters. There would be no peeking around the corner at inept nurses. No arguments with Aileen. Tonight, he was free.
A couple of hours later, he passed a sign saying “Welcome to Massachusetts.” Shocked that he had driven so far, he pulled off at the next exit and into a parking lot. He had no idea where he was going, and he needed to think. As he shut off the engine, he realized he was behind an old New England church. Without another thought, he closed his eyes, bowed his head, and folded his hands together, just as his mother had taught him to do as a little boy; just as he still did at Mass every day.
“Please, dear God, show me the way forward,” he begged aloud. “Is it really part of your plan for me to be so miserable? What if the clinical trials never happen and the children get sicker? I don’t think I can do this. Please, God, show me what to do.”
As he sat there in the darkness, his mind began to quiet, a calm descending and soothing. One by one, the troubles and sorrows clamoring for his attention gentled and stilled and finally faded into a blessed silence. He unclenched his folded hands and laid them on the steering wheel, savoring the astonishing peace that came from simply letting his tired mind drift, emptied and light.
For a long while his mind remained serenely blank, and then he thought of Ed Devinney, his roommate from his U.S. Naval Academy days and still his best friend. Now he knew who would help him find his way, and he wondered why he hadn’t called him earlier. He picked up his cell phone and dialed him.
Ed was asleep in bed in Norfolk, Virginia, when the phone rang. By now he knew that calls late at night from John could only mean trouble. “What’s wrong?” he asked, sleepiness draining from his voice.2
