“There it is.”
The pieces were beginning to fall into place. Three weeks earlier, during our vacation in Michigan, we had taken Hannah to an emergency room. She had been complaining that it hurt to lie down; she moaned in her sleep and ran a slight fever at night. The doctor told us she had the flu and sent us away with a sample-size packet of Children’s Tylenol. Two days later, when she didn’t seem to be getting any better, we took her to another hospital. The pediatrician there ordered X-rays of Hannah’s chest to rule out pneumonia, and then tried to examine Hannah’s abdomen. Hannah screamed and refused to lie down, saying it hurt too much. The doctor gave up, obviously exasperated.
“There’s nothing wrong with her; she’s just manipulating you,” the woman told us. “She’s a typical two-year-old who doesn’t want to go to sleep.”
“How can we be sure it’s not something more serious?” I asked, somewhat distracted. Will and Hannah, bored with waiting, had stepped outside the examining room and were now shrieking and chasing each other in the hall.
The doctor sniffed disapprovingly at the commotion.
“Well, look at her,” the doctor said. “She has too much energy to be really sick. A sick child would be listless and lethargic, would run a fever all day, not just at night. She wouldn’t put up such a fuss during an examination. If you want, make an appointment with her pediatrician when you get home; but as far as I can see, she’s fine.”
I felt confused and embarrassed by the doctor’s words. Every bone in my body was telling me something was wrong, and yet, perhaps the doctor was right; maybe I was just the inadequate mother of an overindulged child. While Claude rounded up Will and Hannah, I quickly collected our things. Escorting our two unruly children past the other, obviously sick children in the waiting room, I felt guilty for having wasted a doctor’s valuable time.
Now, looking at the dark shadow on the X-ray of Hannah’s ribs, I felt like a profound failure again. The doctor in Michigan had only been half right; instead of being the inadequate mother of an overindulged child, I was the inadequate mother of a very sick one. Why hadn’t I trusted myself more? The doctors knew symptoms of illness as they applied generally to children. I knew Hannah. We were authorities on different subjects. I should have insisted that the doctor’s explanation of Hannah’s behavior didn’t match what I knew to be true for her. Hannah had no interest in playing games to get what she wanted; she asked for it directly, demanding it if necessary. And why was she moaning in her sleep and running fevers at night? Even if these were unusual symptoms, surely they were signs of something more than manipulative behavior! Was I so afraid of making a mistake, so afraid of what these strangers might think of me, that I had failed my daughter?
As the doctor peeled the film from the light board, I knew one thing: I was going to have to start speaking up, before it was too late for Hannah. Before it was too late for me.
Just One Thing
IT WAS PAST MIDNIGHT, BUT NOT DARK OR QUIET. THE hallway’s fluorescent light spilled into the room through the half-open door. A monitor beeped; the IV pump clicked. If I lay still enough, I could almost hear the whoosh of the pain medication pulsing through the line that fed a tiny vein in Hannah’s hand. Because of it, Hannah was sleeping peacefully for the first time in weeks.
Although my eyes were burning with fatigue, they wouldn’t stay shut. I began to wonder if I was caught in one of those dreams where you think you’re awake but you’re not. Hannah, curled up on her side next to me, stirred. I sat up, peering at her face in the half-light. Her skin was so pale. I ran my finger along her cheek and brushed a few strands of blond hair away from her lips. Rearranging the blankets, I smiled to see that her new red shoes were still on her feet. Ever since we’d bought them two days before, she had refused to take them off. As I lay back down, Hannah lifted her arm and dropped it lazily across my chest.
I couldn’t remember if I had ever lived a day as never-ending as this one. After more than seven hours of tests, questions, and examinations, the emergency room doctors had finally moved Hannah into a room on the pediatric floor. At first the nurses had said I couldn’t stay overnight; there was nowhere for me to sleep. When Claude and I insisted, they agreed to make an exception and let Hannah and me sleep together in her twin-size bed.
Before Claude left, I handed him a list of things that Hannah and I would need in the coming days: Hannah’s pink-flowered nightgown that she called her “robe j’s,” a pair of leggings and a sweatshirt for me, underwear, toothbrushes, toothpaste, and Hannah’s pink blanket. In the midst of a crisis, our needs were surprisingly simple.
Later, I sat on the edge of the bed and dialed a series of phone numbers I knew by heart. First I called our parents, Claude’s and my own. I told them briefly about Hannah and the miscarriage and asked them to call the rest of the family. My mother agreed to come as soon as possible to help with Will. Then I called everyone I could think of who was expecting me to do something for them in the coming year: church committees, the PTA, Will’s school. I told them that Hannah was sick, that I would be devoting all my time and energy to being with her and our family, that I was no longer available for anything else. I felt as if I had lost a thousand pounds.
I realized that for years I had been measuring my worth by being involved, important, and indispensable, saying “yes” to things not only because I wanted to be helpful, but because I wanted to be looked up to, admired, and loved. I had poured myself into maintaining an illusion of perfection in every aspect of my life. And I had been so busy “doing the right thing” for the benefit of everyone else that I had lost track of what really mattered to me.
Now, lying in the half-dark, my priorities seemed incredibly clear; this was where I wanted and needed to be. I felt so certain about it that, for the first time in a long time, I forgot to worry about what anyone else thought.
Respect
I STRUGGLED TO ROUSE MYSELF FROM A DENSE, DREAMLESS sleep. My alarm clock was beeping. Reaching for the snooze button, my arm brushed against a cold metal rail. My eyes flew open. The beep wasn’t coming from an alarm clock; it was coming from the pump of an IV.
I sat up slowly, feeling as if I had passed through an invisible fold in the universe and landed in some altered state of reality. Hannah was still asleep. I glanced around, wondering what time it was. The light coming through the slatted blinds looked early-morning gray, but the clatter and conversation in the hall suggested it might be later than I thought.
A nurse strode purposefully into the room, followed by a heavyset young woman in blue carrying a tray of flying saucers. While the nurse busied herself with the beeping IV, the young woman set the tray down and lifted the flying saucers to reveal our breakfast: colorless oatmeal, lukewarm scrambled eggs, and cold toast.
“The first day of meals is the worst,” she explained apologetically. “Since you weren’t here yesterday to choose, we have to give you what’s left. Tomorrow’s menu is under the plate. Circle what you want. I’ll be back in a while to pick it up.”
She glanced at Hannah’s sleeping form. “We can only bring one tray per patient, so you might want to circle extra items. We’ll do our best to bring what we can.”
She turned to leave, squeezing through a crowd of white-coated residents that had congregated in the hallway outside our door. Three of them came in. Each wore a stethoscope and carried a clipboard. As they approached Hannah’s bed, two of them cleared their throats at the same time and then laughed self-consciously. The nurse, who was finished with the IV pole, nodded to them as she left.
I eyed the residents suspiciously. One of the things I was beginning to understand about the hospital was that we rarely saw the same person twice. It was disconcerting, too, that while they knew so much about us, we knew almost nothing about them. Hannah opened her eyes and sat up.
“Mommy, who are all these people?” she asked, frowning.
One of the residents spoke. “We need to examine her,” he said efficiently. �
��It’ll only take a minute.”
“My name is Hannah,” Hannah said quietly.
“Yes, of course,” he answered. He stepped closer, reaching for his stethoscope. As he did, the two residents next to him moved in, and then those in the hall entered and formed a semicircle around the bed.
“Stop!” Hannah yelled, holding out her arm like a policeman in traffic. The resident with the stethoscope froze. Hannah turned to me.
“Mommy, please ask these people to leave. They aren’t my friends; they didn’t even tell me their names!”
I paused. The residents were looking at me. I knew they were counting on me to tell Hannah to be a good little girl and let them do what they needed to do. I remembered the Michigan doctor’s diagnosis: manipulative, overindulged two-year-old. I realized these doctors might think the same thing. I didn’t care; if any person in this world deserved respect, it was Hannah. I looked at the guy with the stethoscope.
“She’s right,” I told him.
The resident frowned and tapped a finger absently on his clipboard. The other residents shifted their gaze to him.
“I have to examine you, Hannah,” he said finally. “Will you let me do it if I tell you my name?”
Hannah narrowed her eyes and looked first at him and then at me.
“Okay,” she said finally, “but all those other people have to leave.”
He nodded. The others turned and filed out of the room. When the last person had left, the resident raised his stethoscope and leaned over Hannah. She stopped him.
“What’s your name?” she asked.
“Dr. Fiorelli,” he said, smiling.
“No, your real name,” she said, totally exasperated.
“Tony,” he replied, grinning now from ear to ear.
“Oh, Dr. Tony,” she said, settling back on the pillows. “That’s a nice name.”
Dr. Tony must have spread the word. From that day on, no more than three or four residents entered Hannah’s room at a time, and everyone who did introduced themselves to her using their real names.
Dr. Markoff’s Rule
DR. MARKOFF CLEARED HIS THROAT AND ADJUSTED HIS glasses. He was Dr. Edman’s partner, one of Hannah’s pediatricians. He was sitting on the edge of his chair across from Claude and me. His shoulders were stooped, his face gaunt and strained. His wiry hair was disheveled, two-day-old creases wrinkled his trousers, and his shirt was missing one of its buttons. He didn’t seem to notice or care.
“I’m speaking to you as a father, not as a pediatrician,” he began, leaning forward so his elbows rested on his knees. He cleared his throat again; I studied him more carefully. He looked as if he was about to cry.
Claude and I exchanged glances.
“My daughter Danielle was diagnosed with leukemia last year. She’s two years old. My wife is with her now at the Mayo Clinic in Minnesota, where she’s getting a stem cell transplant. We’re trying to save her life.”
In one breath we went from a gathering of two parents and a doctor to two fathers and a mother who belonged to a club no one wanted to be in.
“You are going to have to make thousands of decisions from now on that no one but the two of you can make; some of them may make a difference whether Hannah lives or dies. The best advice I can give you is this.”
He looked directly at Claude and me.
“Make the best decision you can with the information you have at that time.” He leaned back and ran his fingers through his hair.
“‘At that time’ is the critical part. You’ll see what I mean. You can drive yourself crazy saying, ‘If only we had known this, if only we had known that.’ The point is, you didn’t know, so just keep telling yourselves, ‘We did the best we could with what we knew. We did the best we could with what we knew.’”
I could hear a deep truth in his words. As I let them seep into my heart, something softened in me and fell away. I realized that Dr. Markoff’s rule applied not only to the decisions we had to make about Hannah’s treatment, but to every other area of my life as well. My fear of making mistakes could no longer paralyze me; from now on, it would be enough to do the best I could with what I knew.
Truth: A Special Medicine
WILL WAS CURLED UP ON MY LAP, OUR ARMCHAIR touching the side of Hannah’s bed. His blond crew cut tickled the bottom of my chin. His body had been long and solid from the day he was born, but it was his soft green eyes that most people noticed first and remembered.
Hannah was watching us from the bed, propped against a pile of pillows. A plastic line ran from her arm to an IV pole. She had spread her pink blanket over her legs and was wearing a rhinestone crown and her pink-flowered “robe j’s.”
I cleared my throat. The weight of the moment crushed against my chest.
“Hannah, the doctors have figured out why you are feeling so sick. There is a lump in your tummy called a tumor. A tumor happens sometimes when a few of the cells in a person’s body grow the wrong way and don’t do what they’re supposed to do. The doctors are going to take it out, and then give you medicines to try to make sure the bad cells don’t come back.”
“Is it going to hurt?” Hannah asked, her brow wrinkled and her lips pursed into a worried pout. I paused. In the past, I had often coped with difficult situations by glossing over them, trying to find something good in them, praying that if I could avoid the truth long enough, it would go away. This time, though, I wanted Will and Hannah to be able to trust me. I couldn’t start lying to them now.
“Yes, Hannah, it probably will hurt, but the doctors and nurses are going to do everything they can to make it hurt as little as possible. They have special medicines that will make you sleep while they take the lump out, and other medicines that will help your body rest while it gets better.”
“I don’t want to sleep. I’m not tired!!” Hannah protested.
“You don’t have to sleep now,” Will said gently, “only when they take the lump out. Right, Mom?” he asked, turning to me.
I smiled and nodded.
“Oh. That’s okay.” Hannah sighed, sounding relieved.
“Mom.” Will was still looking at me, his eyes filling with tears. “Is a tumor the same thing as cancer?”
“We don’t know yet, Will,” I said, starting to cry. “The doctors can’t be sure until they take it out and look at the cells under a microscope.”
Hannah was watching us silently.
“If it’s bad news you’ll tell us, right, Mom?” Will asked.
Hannah sat straight up and looked into my eyes without blinking. I took a breath. I couldn’t help wishing that Claude had been able to be here with me, but he had told me he didn’t trust himself to know what to say. I appreciated his honesty, and I also knew that if ever there was a time when the two of us had to respect our differences, this was it. We were like two people in a one-man life raft in the middle of a dark ocean.
Will and Hannah were still waiting for my answer.
“Yes, Will,” I said. “Even if it’s bad news, I’ll tell you the truth.”
Hannah smiled and leaned back into her pillows.
“Thanks, Mom,” Will said, flinging his arms around my neck.
“Mommy, I love you,” Hannah said.
“I love you both,” was all I could say.
Love in the Dark
OUR WORLD HAD SHRUNK TO THE SIZE OF A HOSPITAL floor, but I didn’t mind. My brain was busy replacing no longer needed facts, such as the cost of a package of diapers, with new ones, such as the proper doses of certain medications; it didn’t have room for much else.
Hannah was restless. We decided to go for a stroll through our new neighborhood. As she swung her legs over the side of the bed, I lunged to untangle the IV tube from the toe of her shoe before her foot hit the floor.
“Wait a minute, Missy,” I said, leaning over to unplug the IV pump. The unit began to beep. I pushed the “silence” button and wound the power cord around the pole.
“Hurry up, Mommy,” Hannah exc
laimed, hopping from one foot to the other. “I hear Baby Shondra crying. I think she wants her mommy.”
I wheeled the IV pole away from the wall and checked to make sure the tube wasn’t caught on anything.
“Okay, we’re ready,” I said.
Hannah held my hand in one of hers, and with the other lifted the edge of her nightgown like a princess, to keep the hem from dragging on the floor. We walked slowly as I maneuvered the awkward equipment into the hallway and followed our usual route. Turning right out of her room, we strolled past the supply closet and the conference room, stopping in front of the open doors of the pediatric intensive care unit. It was empty now, but not for long.
“Remember, Hannah, here’s where you’re going to wake up after your surgery tomorrow.”
Hannah took a couple of steps into the room. I followed. Respirators, monitors, breathing tubes, and carts of medical supplies lined the walls. The room smelled like an emergency. It was hard for me to imagine Hannah there. I forced myself to do it.
“You’ll be in one of these beds, and I’ll be sleeping next to you in the big blue chair. Some tubes will be connected to your body to help you breathe, and some to help you sleep. There will be lots of beeping and other noises. A nurse will be with us all the time to make sure everything is okay.”
“I want Nurse Katie or Nurse Amy,” Hannah said, “and I want to wear my red shoes to surgery. Be sure to tell the doctors that.”
“I’ll tell them, Hannah, but I’m not sure they can do it.”
“Well, that’s not fair,” she cried, stomping her foot on the linoleum floor. “Surgery has too many rules. I can’t eat dinner. I can’t wear my robe j’s. I can’t wear my red shoes. That’s not fair,” she repeated.
Hannah's Gift Page 2