“I see what you mean, Hannah. That is a lot of rules. I’ll tell them what you said and see what they can do.”
We continued our walk; past the playroom, around the corner, stopping briefly to choose a book from the library shelves, and then around the corner again. This was the busiest street in the neighborhood: room after room of sick children and their families. A few parents looked up as we passed, exchanging wan, dazed, or sympathetic glances with me. Each room was a story in itself. I never tried to figure out who was here for what. My own story was enough. Hannah’s pace quickened. I struggled to keep up, the IV pole clattering along beside me. The nurses exclaimed in unison when they saw Hannah coming.
“Baby Shondra has been missing you,” Nurse Patty called from behind the desk.
A tiny baby was lying in a bassinet in front of the nurses’ station, her cries lost in the flurry of activity. She was two months old, with translucent blue eyes, dark brown curls, and pursed rosebud lips. She had also been declared severely brain-damaged; she would never be able to see or hear.
Her parents had explained to the nurses that they could not care for such a baby.
The hospital had filed the necessary paperwork, but until a foster home was found, she slept in the hospital hall. Busy nurses fed, changed, rocked, and held her whenever they could. Mostly, when she wasn’t sleeping, Shondra cried.
“It’s okay, Baby Shondra,” Hannah murmured, leaning over the edge of the bassinet, close to the baby’s screwed-up, bawling face. “Your mommy will be back soon. And guess what,” she added brightly, “I brought you something to read.”
Shondra’s cries became whimpers. Hannah stroked Shondra’s cheeks and poked her finger through Shondra’s clenched fist. Shondra stopped crying. The nurses looked away as I lifted Shondra out of her bassinet. I knew that they weren’t supposed to allow me to pick her up, but they were grateful for the help. As I cuddled the baby close to my chest, I couldn’t help wondering if her parents felt as disappointed by life as I did. Weren’t bad things only supposed to happen to bad people? What had I done, what had these little girls done, to deserve this?
Hannah was already sitting on the floor, her back against the wall, waiting. I sat down carefully next to her and laid Baby Shondra across our laps. Hannah picked up her library book and opened it to the first page.
“Once upon a time there was a princess,” she began, making up her favorite story as she pretended to read.
Then, turning the book around, she held the page open, inches from Shondra’s face.
“See, Baby Shondra, see? It’s a beautiful princess, just like you and me.”
She turned to me and grinned. I kissed the top of her head.
“I love you, Missy,” I whispered.
“I know, Mommy. I know,” she whispered back.
As I sat on the floor, listening to Hannah spin tales into Shondra’s soundless world, I realized that I, too, had been telling stories to deaf ears. The truth didn’t care about my expectations, about the way things were supposed to be. It was what it was. As in the moment in the emergency room, when my miscarriage had become the reason I could go with Hannah to her X-rays, I was reminded that it is my expectations, the story I weave around the truth, that make what is happening seem better or worse, good or bad, fair or not fair.
Looking at Baby Shondra, now asleep on Hannah’s lap, I realized something else, too. Hannah’s sense that every little girl was precious and loved wasn’t just a fantasy she had made up; it had emerged out of a deeper truth. Love is bigger than tumors or blindness, and it was a feeling that Hannah trusted and knew.
Room for the Truth
THERE WAS A FLURRY OF ACTIVITY IN THE PREOPERATING room. Efficient-looking people in official-looking coats were bustling back and forth around us. The huge metal doors of the operating room swung open and shut, and the anesthesiologist appeared.
Hannah’s body was limp in my lap. Her eyes were open, but they rolled lazily around in their sockets. She was wrapped in her pink blanket, wearing nothing but her red shoes. An hour earlier she had refused to wear a hospital gown.
“It’s not pretty, and it doesn’t match my shoes,” she had said.
“How’s she doing?” the anesthesiologist asked, wrapping her fingers around Hannah’s wrist, feeling her pulse.
“My shoes,” Hannah said weakly.
“What did she say?” the doctor asked.
“Hannah’s worried you’re going to take off her shoes,” Claude explained. “She made a deal with the surgeon that she could wear them in surgery.”
“Oh, I heard about that,” the anesthesiologist said. “You must be a very special patient, Hannah. Dr. Saad gave us specific orders that you be allowed to wear your red shoes. I won’t forget.”
Hannah nodded and closed her eyes. The doctor pushed another syringe of sedative into the IV line. Hannah’s head dropped against my chest with a thud. I held my breath as long as I could. Hannah didn’t move. The operating room doors swung open again, and two nurses wheeled a long gurney covered with a white sheet into the room. One of them leaned over, gathered Hannah’s body in her arms, and lifted her off my lap. Laying Hannah in the middle of the white sheet, the nurse covered the lower half of her body with a hospital blanket.
My eyes studied Hannah, looking for any sign that she was aware of being taken from me. She didn’t flinch. She looked tiny, lost in the middle of the huge white expanse. I struggled to keep from believing she might already be dead. This was the first time in five days she’d been more than an arm’s length away from me. A sob broke out of my chest. Claude held me as we watched the nurses push Hannah’s gurney toward the operating room. The doors parted to let Hannah and her attendants through, then swung shut behind them. Claude and I didn’t move, barely able to believe what was happening. A minute later, the doors swung open and one of the nurses appeared. She handed me Hannah’s shoes, wrapped in a clear plastic bag.
“She was completely sedated before we took them off,” she said. “Make sure the recovery nurse gets them, so we can put them on before she wakes up.”
She smiled sympathetically.
“She’s in good hands. It’ll be okay,” she said softly before walking away.
Claude and I were led to a curtained alcove in the family waiting area. There was no room in that tiny space for anything but two chairs and the truth.
The first hour we sobbed uncontrollably in each other’s arms. When there were no tears left, we began to talk. For years, I had loved Claude as deeply and imperfectly as I was able. From the moment we met, I had been drawn to him like a little boy’s finger to the tip of a flame. He had seemed wise and mature compared with the other men/boys I knew. He was earnest, hardworking, and handsome. He also seemed deeply hurt and unusually angry sometimes. I was, too. There had been something about our mutual hopes and hurts that had brought us together. We had married while I was still in college, when he was twenty-five and I was twenty.
As we clung to each other and waited for news from the surgeon, Claude and I knew one thing: Our children were more important than anything else either of us would ever do. They were the reason we were together, and we wanted to have more. It was a truth so deep that it cut cleanly through any doubts or fears we might otherwise have had.
“Let’s get pregnant again as soon as we can,” Claude said. With my face buried in his shoulder, I nodded.
A Mustard Seed
LAURAJANE, THE NEW PASTOR OF OUR SMALL METHODIST church, was standing across from me on the other side of Hannah’s bed. She didn’t look like any church leader I had ever seen. She was thirty-one, the same age as me, with a short, thick body and a head of wiry red curls that refused to be tamed. She wore a long, green velvet dress, and a gold cross hung from a chain around her neck. She clutched a wad of tissue in her hand, because her eyes kept filling with tears.
Two days before, surgeons had lifted a tumor the size of a small soccer ball from Hannah’s abdomen. Now she was lying on the bed,
tethered to a respirator and heavily sedated. Plastic tubes and the tips of her red shoes emerged from the edges of her pink blanket. Monitors with zigzagging green lines hung from the ceiling above the bed. The only sounds in the room were an occasional beep and a periodic whoosh from the respirator.
Laurajane bowed her head and started to pray. I closed my eyes and tried to quiet my mind. It was doing crazy things. In one moment it was a model of efficiency, deciphering the whooshes, clicks, and beeps of the various machines so quickly that they no longer frightened me. In the next, I couldn’t even remember when I had last eaten.
I desperately needed someone to take care of me. Since Hannah’s surgery, I hadn’t slept more than a few hours at a time, and yesterday my body had given up the tiny form of our dead baby. I knew that I couldn’t depend on Claude to do any more. After five days of juggling work, errands, phone calls, visiting me and Hannah, and shuttling Will between the hospital, play dates, and home, he was as exhausted as I was.
At least my mother was now here. She and Will were moving into the Ronald McDonald House, a beautiful facility with lots of toys and activities to keep Will busy, across the street from the hospital. Claude would continue to sleep at home. It was probably just as well; he and my mother had, over the years, only barely managed to get along, and these days I couldn’t handle being a referee.
One of the monitors began to beep. I realized my mind had been wandering. The beeping stopped. I tried once again to concentrate on Laurajane’s words. It was too late.
“Amen,” Laurajane said.
I opened my eyes. Tears were streaming down Laurajane’s cheeks and dripping off her chin. She was looking at me as if she was about to say something; I didn’t yet know her well enough to imagine what it might be. For days, people had been telling me, “God only gives us what we can handle.” I hoped Laurajane wasn’t about to tell me the same thing. I knew these words were meant to comfort me, but I was finding it difficult to accept that what was happening to Hannah and our family was part of some benevolent God’s plan. I also suspected that when people said this, they were secretly comforting themselves, imagining that since they couldn’t handle what was happening to us, their God would never give it to them.
“I have no choice!” I wanted to scream. I couldn’t wall myself off from pain and fear. To turn away from them would be to turn away from Hannah. No matter how bad things were, I wasn’t willing to do that.
Laurajane cleared her throat and reached for another tissue.
“I’m sorry,” she said softly, pausing to blow her nose, “but I can’t lie to you. I want more than anything to make sense of what is happening to you guys, but I can’t even begin to pretend that this is something I understand.
“I became a minister because I loved and believed in God and wanted to help other people, but now, seeing what you are going through, I’m not sure I have what it takes. This whole scene doesn’t jibe with what I thought I knew about Him; it’s hard to believe that the God I love would let a child suffer like this.”
I couldn’t decide whether to kiss her or fall on my knees. Laurajane’s humility and willingness to acknowledge out loud the unfairness and insanity I was feeling came as a profound relief. I realized then that what I needed most wasn’t for someone to make me feel better; I needed people like Laurajane who were willing to stand with me in the face of the raw truth.
A Deeper Silence
CLAUDE AND I WERE SITTING ON FADED PLASTIC CHAIRS IN an old supply closet that was posing as a conference room. Dr. Kamalaker and his partner, Dr. Bekele, shuffled through folders and papers that were strewn on the table in front of them. They were pediatric oncologists who worked for the children’s clinic attached to the hospital and were now officially in charge of Hannah’s case. A nurse sat to one side with Jill, the clinic’s social worker, trying desperately but unsuccessfully to appear relaxed. Claude and I held hands and sat so close together that the legs of our chairs overlapped.
Dr. Kamalaker lifted a long printed sheet from the pile in front of him.
“We got the report from the lab in California,” he said softly, raising his head to look first at Claude and then at me.
I felt very, very quiet; I knew the truth was coming in a way I had never known it before.
Claude squeezed my hand tighter and leaned in to me until he was almost sitting on the edge of my chair. The nurse looked away. Jill crossed her legs.
Something was happening. I could feel the weight of my body pressing my tailbone into the seat of the chair. I felt breath pouring in and out of my lungs, and my heart pounding in my chest, but my awareness had expanded beyond my body and thoughts. Although my eyes never left Dr. Kamalaker’s, I had a sense of being able to see the whole room, then Hannah in her room down the hall, and then the whole hospital block. Eventually I saw everyone I loved and everything else, until the whole universe was contained in one place.
“The news is not as good as we had hoped. The tumor is cancerous; it’s called a Rhabdoid tumor of the kidney. It’s malignant, aggressive, and rare, but there’s still about a twenty-percent chance of remission. We’ve been in touch with a hospital in Washington State that has been treating a little girl who was diagnosed fifteen months ago. That’s good news, since most patients die within a year.”
He paused. The room was still. Someone’s chair scraped across the floor. A throat cleared. Four pairs of eyes watched us. As the silence grew, the nurse turned her gaze politely, painfully away. Claude stared straight ahead and said nothing.
As quiet as the room was, there was a deeper silence in me; my heart had jumped beyond the diagnosis, beyond the prognosis, beyond the treatment. I knew that Hannah was going to die, and I was not afraid.
I do not know where my fear went. I simply knew that if Hannah was going to die, I needed to face the truth and make the most of the time we had left. I also knew that when it was time, I wanted her home, to let her go as gently as she could go.
I opened my mouth and let the question fall out of my heart.
“Dr. Kamalaker, when it’s clear that Hannah has had enough, when she’s ready to die, will you help her go?”
Claude turned to look at me. Everyone else did, too. Dr. Kamalaker studied me thoughtfully without answering.
Dr. Bekele spoke. “You realize, don’t you, that we are not giving up hope that Hannah’s cancer can go into remission. We intend to do everything we can to help her.” Jill and the nurse nodded emphatically in agreement.
I knew they were probably horrified by my question; part of me was stunned by it, too. Even if I knew in my heart that Hannah was going to die, wouldn’t saying it out loud clinch the deal? I didn’t think so. I wasn’t giving up on the possibility that Hannah could be cured. I was simply acknowledging something that is already true for everyone: Death comes to all of us, ready or not. To know that Hannah was going to die couldn’t cause her death any more than denying it could prevent her death. The truth was going to be what it was, either way. The only choice I had was to decide what I was going to do with it.
Dr. Kamalaker and I were still looking at each other. His eyes were soft and sympathetic. I felt as if he was seeing into my heart.
“I am not willing to give up in the face of this disease,” he said finally. “I am going to do everything I can to beat this cancer, but if we are not successful, I am also willing to help you with what you asked.”
Waves of relief surged through me; not only had I been able to give a voice to my deepest fear, but I had found someone else willing to face the truth with me. If Hannah was going to die, I now knew that I wasn’t going to be alone in it.
Resilience
DOCTORS HAD GRADUALLY DECREASED THE AMOUNT OF Hannah’s sedative and then removed the respirator tube from her throat. After all she had just been through, I couldn’t believe how good she looked. Although she had lost a lot of weight, her voice was hoarse, and the skin on her cheeks was raw where strips of tape had held the breathing tube in place,
Hannah had spent the day laughing, talking, sipping juice, and watching videos with Will. I had even managed to wash her hair, using a plastic bowl and a sample of baby shampoo that one of the nurses had scrounged around to find for me. Hannah had insisted that we pull it back into a huge pink bow.
Now, she was about to eat her first solid food in over a week.
“Dinner!” the nurse announced with a flourish, lifting the lids on the tray in front of her to reveal a plate of mashed potatoes, cups of Jell-O and pudding, and a bowl of chicken broth.
Hannah frowned. She wasn’t impressed. She poked her finger into the potatoes, and then folded her arms across her chest.
“No way, José. I’m not eating that. I want pizza,” she said. The nurse smiled.
“Hannah, the doctors ordered these foods for you because they will be gentle on your throat and tummy. Tomorrow, maybe, you can have pizza.”
Hannah looked steadily at her for about ten seconds. The nurse didn’t move.
“Get Dr. Tony,” Hannah said.
When Dr. Tony arrived, the nurse explained the situation. Dr. Tony tapped a finger on his clipboard the way he had that first morning when Hannah had stopped him in his tracks. He looked at Hannah. She returned his gaze.
“Well,” he said finally, “I am Italian, so I know why Hannah feels the way she does about pizza. If I hadn’t eaten anything in a really long time, I’d want pizza, too.”
Twenty minutes later, a second tray was delivered from the cafeteria. The nurse set it on the table in front of Hannah. Dr. Tony peeked his head into the room and winked at me, grinning from ear to ear.
“Ta-da!” Hannah said, lifting the lid. She let out a shriek, and I saw the reason for Dr. Tony’s grin.
There, in the middle of the tray, sat two slices of pizza and a dish of chocolate ice cream.
The Scent of Home
Hannah's Gift Page 3
