Nora heard it coming into the parking lot. She rose from her seat at her son's bedside and walked over to the window. Through the blinds she could see it. An ambulance, and it was theirs. She knew at a hospital ambulances came and went at all hours, but she felt certain this one was her son's ride. It wasn't simply intuition. She had been through this three times before, and she had the timing down. About two hours ago the ER doctor had made the call, and she knew how long it took for a transfer team to make it from Children's Hospital to St. Tammany General -- two hours. The time had passed, and there was the ambulance. There was no coincidence.
In less than five minutes a team of paramedics appeared in the hallway outside her son's room. A doctor had come with them. The transport team. Nora, standing at the door of the ER exam room, watched them through a small glass window in the door. The window, crosshatched with wire to make it shatterproof, was usually used for the medical staff to look in and size up patients, Nora supposed. She was using it to size up the transport team. A few minutes of observed loitering was enough for her. She walked back to the bed. "Zachary," she said, "they are here to get us."
"Mom, are you coming with me this time?"
"Yes, Zachary, I promise."
She knew what she was promising. This was the fourth time Zachary had to be transferred to Children's from St. Tammany General, and each previous time the paramedics had told her she couldn't ride. It was against policy, they had said. She would be in the way. Well, Zachary had been in the hospital over twenty times in his eight years of life, and one thing Nora had learned from all those admissions was that most hospital policies could be broken. Hospital policies were often thought up by the staff, and were in place for their convenience, not the patients' or the families'. This is perfectly fine when you are only in the hospital every so often for a C-section. But when you have been in the hospital as often as Zach has been, when hospitalization is not just an occasional thing but a way of life, rules have to bend.
She bent over and kissed her son on his sweaty forehead and then stepped through the door to plead her case. Only she had no intention of pleading. "I'm going with you," she said.
There was a lot of resistance. First the paramedics talked to her, explaining that this just isn't done. Nora permitted herself to fill up with the indignation of someone who had suffered more than the person she was talking to. She knew that until she talked to the doctor, nothing would change. So rather than fight the medics, she said, "I'm not talking to you. If the doctor says I can go, I can go."
After a time she was alone with the doctor, and she was emphatically telling her she could not go. "There is not enough room in the ambulance," she said. "We need space if your son gets into trouble."
"If I am not with him, he will get into trouble," she said.
The doctor tried again. "The ambulance insurance won't cover you if we get into an accident."
"If I am chasing after you in my car and get into an accident myself, I will make sure you answer for forcing me to drive 60 miles across the lake in the middle of the night. If he dies during the ride and I am not with him, you will answer for that also."
She could see her struggling with anger over that one. "You can't go with us and that's final."
"Then he's not going either."
"He will die if he stays here."
"At least he will die with me."
That clinched it. Zach was very ill. His temp had been 104. It had broken, and now he was covered with sweat. He had drips going in from four bags -- an antibiotic, IV fluids, and two drugs to keep his blood pressure up. Zach was in trouble and the doctor finally decided there was no point in putting up a big fight.
Nora went back to Zach's bed. She had to touch him. She silently hoped by touching him she would be forgiven for threatening to let him die if she was not allowed along. Zach had asked her to come, and she had not let him down.
They took Zach out of his room in the ER. She hadn't paid it much attention before now, but that was Nora's way -- seldom did she notice details until things were about to change. It was one of the two children's rooms in the ER, off in a quiet corner, every wall covered with bright colors and cartoon characters. Much like Children's, or Primary Color Medical Center, as she liked to call it.
Zach was on an adult gurney. It seemed that in all the world there was not a single child-sized one. Zach would have looked a lot better on a smaller stretcher. His tiny body, which looked like a five year-old's anyway, seemed all that much more insignificant on in an adult-length bed. After Zach got sick and wound up on dialysis, he had grown hardly ten inches and gained only fifteen pounds. A kid doesn't grow unless he stays well, and when has Zach been well? Not any time that she could remember.
It took some time for the medics to get the four IV bags unhooked from the hospital pumps and transferred to the portable pumps on the ambulance. Then there was paperwork, and the doctor had to write out some notes. After that they were ready to go. They rolled Zachary to the ambulance and pushed him in. One of the medics motioned Nora to get in first. There was a friendliness in his motion. It seemed that once Nora had won the fight and the decision to bring her along was made, everything was forgiven. That was one thing Nora respected about medical people. They were decision-oriented. They could argue and argue a question, but once the choice was made everyone was usually able to put matters behind them and go ahead in good humor. Sticking together and working from the same plan was more important to medical people than worrying about the past.
There was a long bench on one side of the ambulance, and Nora slid to the end of it. She was a few feet from Zach's head. He could see her if he looked up a little, but she needed only slide a few feet to her right to be well out of the way if the team needed room. The transport doctor was finishing a conversation with the ER doc. She collected a few final bits of information and stepped in last. The driver slammed the door.
The ambulance jerked forward. The ride would be fifty minutes long, the greatest part of it over the 24-mile Lake Ponchartrain bridge. It was night, and the traffic was light, allowing the driver to raise the siren only at red lights. In a moment and with a loud clank they shot through the toll plaza, and the ambulance was skimming across the lake on the bridge.
Nora could not clearly see the speedometer, balanced as it was from her perspective just barely above the driver's knee, but she thought they were going at least eighty. As they accelerated out of the toll plaza, the ambulance began to pulse as it hit the steel strips that separated the concrete slabs making up the length of the long bridge. At first the pulses were soft, but as the vehicle picked up speed they got louder and louder, drowning out most of the noise inside.
The regular beats could not have done more to lull her to sleep. She shifted around to say awake. Zach had dropped off. This was the third time she had taken this particular trip, but Zach had been in the hospital many more times than that -- twenty-six, twenty-eight? She couldn't remember. Her ex-husband had moved out after hospitalization twelve, and the divorce was done at eighteen. After that, she lost count.
This poor child had suffered so much. And so much, she knew, on account of medicine, and on account of her. Zach had been three when he came home from preschool one day with a very bad cold. The cold itself was not so bad, but after a week Zach started to swell up. First in his face, then from head to toe. Over one weekend, he seemed to bloat more and more by the hour. Finally she and Tom brought him to the emergency room. In the blue-white fluorescent hospital light, Zach had looked so much paler than he did at home. She had felt intense remorse that they had waited so long, but neither she nor Tom wanted to be another one of those silly anxious parents bringing a kid with a cold into the ER at midnight, only to be sent home and with an instruction sheet on how to give fluids and Tylenol. That night, a couple of doctors had looked him over, then a couple more, and he was in intensive care. A few weeks later she and Tom were in a room with a nephrologist who was telling them that Zach would need to be on dialysis. They learned a new turn of phrase that night. Focal segmental glomerulosclerosis. It had been dialysis ever since.
Sometimes Nora would sit in the lobby at Children's Hospital and watch the parents of other sick children go in and out and wish Zach had someone else's disease. She knew it was silly to wish Zach could trade his kidney failure for leukemia or muscular dystrophy. It was just a mental trick. Every serious medical problem has its own specific challenges, but the problems of dialysing a child were so wearying that she just wanted to trade a new set of problems for the old ones. Maybe chemotherapy for a few months would be easier to bear, maybe not. But it would be a different set of worries. By now, it was not only worry, but the fatigue of worry, that was hurting so much.
The doctor sat at the end of the bench near the door, her head bent forward, trying to write. The pulsing from the bridge was so regular that she had gotten the timing of it, and could write three or four letters, pause to let the shock pass, then write three or four more before the next shock. She wrote by a dim white light screwed to the wall of the ambulance. Nora could not understand how she could see anything.
Outside it was completely dark. They were midway between the shores of the lake, and land was not visible in either direction. The amber streetlights blurred out the moonlight with their glare. She wondered if she were doing the right thing. Even this wondering only elicited fatigue. She had wondered this so many times before. Was it fair to him, to keep going, going? Zach never asked, and she was sure he was too young yet to even understand his options. Zach probably thought this was how life was, to suffer and suffer. He certainly didn't remember anything else. If there was anything that was unfair about this endless misery, it was that she had to face the possibility that it might be time to give up. It may be unnatural for a mother to bury her child, but for a mother to consider giving up the fight and allowing her child to die was unbearable.
She remembered when Tom had brought up the subject. It was during their last fight -- not a fiery, angry fight but one of the most soft-spoken arguments they had ever had. It was nonetheless the one that ended with him moving out. "Do we have to keep fighting for Zach?" he asked. "We could let him go." Tom had made many mistakes, had said so many awful things, but this was not one she held against him any more. She knew what he had meant, and she knew where it had come from. Zach was an eight year-old in a body the size of a child half his age. If he lived to adulthood, if he made it through the episodes of septic shock he seemed to get once a year, what kind of adult would he be? Four and a half feet tall, thin, sickly, little chance for a job or a spouse, forever tethered to a dialysis machine. What were they saving him for?
It is not as if Tom hadn't done everything he could have. When Zach turned six, Tom donated a kidney. They both thought this would be the end of all the hospitalizations, but instead it made things worse. Zach rejected the kidney after four months, and it was in and out of the hospital with kidney biopsies, switching and titrating medications in increasingly desperate efforts to save the transplant, and then finally back to dialysis. The return to dialysis had been so painful for her that she was not certain she could endure it again. She and Tom held out an entire year before they listened to the doctor and considered putting Zach back on the transplant list.
No, she did not hold it against Tom that he was willing to give up. Given all that had happened, it was logical, and for Zach, it might be merciful. The doctor told her, and even her parish priest confirmed, that it is not morally wrong to stop medical treatment if the treatment is doing no good. She could see the dialysis was slowing destroying him. At eight, Zach could live another seventy years if he had even one good kidney, but Zach's nephrologist admitted to her that he had never seen a patient live thirty years on dialysis. Ten to twenty was more like it. Tom was not wrong, and she knew that he could love Zach very much and still say what he said.
Abruptly the pulsing stopped. They had reached the end of the bridge and were on dry land again. The driver resumed raising the siren each time they reached an intersection.
The problem for Nora was not the logic, or the mercy, or even the morality of it. Zach was her son, and she was his protector. It seemed to her, especially with Tom's doubts, that she was the only one defending his life without question. There had to be balance. Someone had to be arguing for keeping up the fight, for doing everything possible. She was terrified that if she gave up her determination no one else would have faith in Zach. The balance would tip against him. Somehow if both arguments, for and against fighting on, were not passionately argued she was afraid that some cosmic equilibrium would be lost and Zach would suddenly die. Logically this could not be true, but in her heart she thought that if a feeling were not passionately expressed that it would cease to be an argument. Like an old creed never prayed ceases to be religion.
And what mother ceases to be her son's avid advocate? What kind of a mother would she be if she did not praise even his most glaring weaknesses to the skies? It is the job of the rest of the world to objectively dissect her son. Not hers. Her job was to see him as perfect, even if he wasn't. Because if his mother did not see hope in his survival, no one would. If she did not feel unreserved hope for him, would even God?
One last bump and the ambulance was in the hospital parking lot. For the fifteenth or so time they would be admitted to this place, and usually when Zach was this sick it meant a month here. Provided he lived at all. A month of in and out of the ICU, drips, dialysis, maybe even a ventilator if things did not go well through the night. No one had to tell her this. She knew it. One month, minimum, sleeping on hospital floors and walking up to a coffee shop on Magazine Street each morning between ICU visiting hours to get a little daylight. A month in the hospital probably meant she would be fired from another job.
The driver backed the ambulance up to the ER bay. The medic at the foot of the bed pulled the latch on the back door and swung it open. The doctor and one of the medics climbed out, and Nora followed. The one man still in the ambulance raised the bedrails on both sides of the gurney and started pushing Zach forward. When they had the gurney almost completely out, they held it aloft for a moment, waiting for the wheels to drop down and lock in place.
For some reason, Nora stared at one of the wheels as it dropped to the asphalt. The paramedics pushed the gurney forward, and she watched the wheel as it started to turn.
Go, she thought.
In less than five minutes a team of paramedics appeared in the hallway outside her son's room. A doctor had come with them. The transport team. Nora, standing at the door of the ER exam room, watched them through a small glass window in the door. The window, crosshatched with wire to make it shatterproof, was usually used for the medical staff to look in and size up patients, Nora supposed. She was using it to size up the transport team. A few minutes of observed loitering was enough for her. She walked back to the bed. "Zachary," she said, "they are here to get us."
"Mom, are you coming with me this time?"
"Yes, Zachary, I promise."
She knew what she was promising. This was the fourth time Zachary had to be transferred to Children's from St. Tammany General, and each previous time the paramedics had told her she couldn't ride. It was against policy, they had said. She would be in the way. Well, Zachary had been in the hospital over twenty times in his eight years of life, and one thing Nora had learned from all those admissions was that most hospital policies could be broken. Hospital policies were often thought up by the staff, and were in place for their convenience, not the patients' or the families'. This is perfectly fine when you are only in the hospital every so often for a C-section. But when you have been in the hospital as often as Zach has been, when hospitalization is not just an occasional thing but a way of life, rules have to bend.
She bent over and kissed her son on his sweaty forehead and then stepped through the door to plead her case. Only she had no intention of pleading. "I'm going with you," she said.
There was a lot of resistance. First the paramedics talked to her, explaining that this just isn't done. Nora permitted herself to fill up with the indignation of someone who had suffered more than the person she was talking to. She knew that until she talked to the doctor, nothing would change. So rather than fight the medics, she said, "I'm not talking to you. If the doctor says I can go, I can go."
After a time she was alone with the doctor, and she was emphatically telling her she could not go. "There is not enough room in the ambulance," she said. "We need space if your son gets into trouble."
"If I am not with him, he will get into trouble," she said.
The doctor tried again. "The ambulance insurance won't cover you if we get into an accident."
"If I am chasing after you in my car and get into an accident myself, I will make sure you answer for forcing me to drive 60 miles across the lake in the middle of the night. If he dies during the ride and I am not with him, you will answer for that also."
She could see her struggling with anger over that one. "You can't go with us and that's final."
"Then he's not going either."
"He will die if he stays here."
"At least he will die with me."
That clinched it. Zach was very ill. His temp had been 104. It had broken, and now he was covered with sweat. He had drips going in from four bags -- an antibiotic, IV fluids, and two drugs to keep his blood pressure up. Zach was in trouble and the doctor finally decided there was no point in putting up a big fight.
Nora went back to Zach's bed. She had to touch him. She silently hoped by touching him she would be forgiven for threatening to let him die if she was not allowed along. Zach had asked her to come, and she had not let him down.
They took Zach out of his room in the ER. She hadn't paid it much attention before now, but that was Nora's way -- seldom did she notice details until things were about to change. It was one of the two children's rooms in the ER, off in a quiet corner, every wall covered with bright colors and cartoon characters. Much like Children's, or Primary Color Medical Center, as she liked to call it.
Zach was on an adult gurney. It seemed that in all the world there was not a single child-sized one. Zach would have looked a lot better on a smaller stretcher. His tiny body, which looked like a five year-old's anyway, seemed all that much more insignificant on in an adult-length bed. After Zach got sick and wound up on dialysis, he had grown hardly ten inches and gained only fifteen pounds. A kid doesn't grow unless he stays well, and when has Zach been well? Not any time that she could remember.
It took some time for the medics to get the four IV bags unhooked from the hospital pumps and transferred to the portable pumps on the ambulance. Then there was paperwork, and the doctor had to write out some notes. After that they were ready to go. They rolled Zachary to the ambulance and pushed him in. One of the medics motioned Nora to get in first. There was a friendliness in his motion. It seemed that once Nora had won the fight and the decision to bring her along was made, everything was forgiven. That was one thing Nora respected about medical people. They were decision-oriented. They could argue and argue a question, but once the choice was made everyone was usually able to put matters behind them and go ahead in good humor. Sticking together and working from the same plan was more important to medical people than worrying about the past.
There was a long bench on one side of the ambulance, and Nora slid to the end of it. She was a few feet from Zach's head. He could see her if he looked up a little, but she needed only slide a few feet to her right to be well out of the way if the team needed room. The transport doctor was finishing a conversation with the ER doc. She collected a few final bits of information and stepped in last. The driver slammed the door.
The ambulance jerked forward. The ride would be fifty minutes long, the greatest part of it over the 24-mile Lake Ponchartrain bridge. It was night, and the traffic was light, allowing the driver to raise the siren only at red lights. In a moment and with a loud clank they shot through the toll plaza, and the ambulance was skimming across the lake on the bridge.
Nora could not clearly see the speedometer, balanced as it was from her perspective just barely above the driver's knee, but she thought they were going at least eighty. As they accelerated out of the toll plaza, the ambulance began to pulse as it hit the steel strips that separated the concrete slabs making up the length of the long bridge. At first the pulses were soft, but as the vehicle picked up speed they got louder and louder, drowning out most of the noise inside.
The regular beats could not have done more to lull her to sleep. She shifted around to say awake. Zach had dropped off. This was the third time she had taken this particular trip, but Zach had been in the hospital many more times than that -- twenty-six, twenty-eight? She couldn't remember. Her ex-husband had moved out after hospitalization twelve, and the divorce was done at eighteen. After that, she lost count.
This poor child had suffered so much. And so much, she knew, on account of medicine, and on account of her. Zach had been three when he came home from preschool one day with a very bad cold. The cold itself was not so bad, but after a week Zach started to swell up. First in his face, then from head to toe. Over one weekend, he seemed to bloat more and more by the hour. Finally she and Tom brought him to the emergency room. In the blue-white fluorescent hospital light, Zach had looked so much paler than he did at home. She had felt intense remorse that they had waited so long, but neither she nor Tom wanted to be another one of those silly anxious parents bringing a kid with a cold into the ER at midnight, only to be sent home and with an instruction sheet on how to give fluids and Tylenol. That night, a couple of doctors had looked him over, then a couple more, and he was in intensive care. A few weeks later she and Tom were in a room with a nephrologist who was telling them that Zach would need to be on dialysis. They learned a new turn of phrase that night. Focal segmental glomerulosclerosis. It had been dialysis ever since.
Sometimes Nora would sit in the lobby at Children's Hospital and watch the parents of other sick children go in and out and wish Zach had someone else's disease. She knew it was silly to wish Zach could trade his kidney failure for leukemia or muscular dystrophy. It was just a mental trick. Every serious medical problem has its own specific challenges, but the problems of dialysing a child were so wearying that she just wanted to trade a new set of problems for the old ones. Maybe chemotherapy for a few months would be easier to bear, maybe not. But it would be a different set of worries. By now, it was not only worry, but the fatigue of worry, that was hurting so much.
The doctor sat at the end of the bench near the door, her head bent forward, trying to write. The pulsing from the bridge was so regular that she had gotten the timing of it, and could write three or four letters, pause to let the shock pass, then write three or four more before the next shock. She wrote by a dim white light screwed to the wall of the ambulance. Nora could not understand how she could see anything.
Outside it was completely dark. They were midway between the shores of the lake, and land was not visible in either direction. The amber streetlights blurred out the moonlight with their glare. She wondered if she were doing the right thing. Even this wondering only elicited fatigue. She had wondered this so many times before. Was it fair to him, to keep going, going? Zach never asked, and she was sure he was too young yet to even understand his options. Zach probably thought this was how life was, to suffer and suffer. He certainly didn't remember anything else. If there was anything that was unfair about this endless misery, it was that she had to face the possibility that it might be time to give up. It may be unnatural for a mother to bury her child, but for a mother to consider giving up the fight and allowing her child to die was unbearable.
She remembered when Tom had brought up the subject. It was during their last fight -- not a fiery, angry fight but one of the most soft-spoken arguments they had ever had. It was nonetheless the one that ended with him moving out. "Do we have to keep fighting for Zach?" he asked. "We could let him go." Tom had made many mistakes, had said so many awful things, but this was not one she held against him any more. She knew what he had meant, and she knew where it had come from. Zach was an eight year-old in a body the size of a child half his age. If he lived to adulthood, if he made it through the episodes of septic shock he seemed to get once a year, what kind of adult would he be? Four and a half feet tall, thin, sickly, little chance for a job or a spouse, forever tethered to a dialysis machine. What were they saving him for?
It is not as if Tom hadn't done everything he could have. When Zach turned six, Tom donated a kidney. They both thought this would be the end of all the hospitalizations, but instead it made things worse. Zach rejected the kidney after four months, and it was in and out of the hospital with kidney biopsies, switching and titrating medications in increasingly desperate efforts to save the transplant, and then finally back to dialysis. The return to dialysis had been so painful for her that she was not certain she could endure it again. She and Tom held out an entire year before they listened to the doctor and considered putting Zach back on the transplant list.
No, she did not hold it against Tom that he was willing to give up. Given all that had happened, it was logical, and for Zach, it might be merciful. The doctor told her, and even her parish priest confirmed, that it is not morally wrong to stop medical treatment if the treatment is doing no good. She could see the dialysis was slowing destroying him. At eight, Zach could live another seventy years if he had even one good kidney, but Zach's nephrologist admitted to her that he had never seen a patient live thirty years on dialysis. Ten to twenty was more like it. Tom was not wrong, and she knew that he could love Zach very much and still say what he said.
Abruptly the pulsing stopped. They had reached the end of the bridge and were on dry land again. The driver resumed raising the siren each time they reached an intersection.
The problem for Nora was not the logic, or the mercy, or even the morality of it. Zach was her son, and she was his protector. It seemed to her, especially with Tom's doubts, that she was the only one defending his life without question. There had to be balance. Someone had to be arguing for keeping up the fight, for doing everything possible. She was terrified that if she gave up her determination no one else would have faith in Zach. The balance would tip against him. Somehow if both arguments, for and against fighting on, were not passionately argued she was afraid that some cosmic equilibrium would be lost and Zach would suddenly die. Logically this could not be true, but in her heart she thought that if a feeling were not passionately expressed that it would cease to be an argument. Like an old creed never prayed ceases to be religion.
And what mother ceases to be her son's avid advocate? What kind of a mother would she be if she did not praise even his most glaring weaknesses to the skies? It is the job of the rest of the world to objectively dissect her son. Not hers. Her job was to see him as perfect, even if he wasn't. Because if his mother did not see hope in his survival, no one would. If she did not feel unreserved hope for him, would even God?
One last bump and the ambulance was in the hospital parking lot. For the fifteenth or so time they would be admitted to this place, and usually when Zach was this sick it meant a month here. Provided he lived at all. A month of in and out of the ICU, drips, dialysis, maybe even a ventilator if things did not go well through the night. No one had to tell her this. She knew it. One month, minimum, sleeping on hospital floors and walking up to a coffee shop on Magazine Street each morning between ICU visiting hours to get a little daylight. A month in the hospital probably meant she would be fired from another job.
The driver backed the ambulance up to the ER bay. The medic at the foot of the bed pulled the latch on the back door and swung it open. The doctor and one of the medics climbed out, and Nora followed. The one man still in the ambulance raised the bedrails on both sides of the gurney and started pushing Zach forward. When they had the gurney almost completely out, they held it aloft for a moment, waiting for the wheels to drop down and lock in place.
For some reason, Nora stared at one of the wheels as it dropped to the asphalt. The paramedics pushed the gurney forward, and she watched the wheel as it started to turn.
Go, she thought.