HANNAH WAS DOZING ON ONE SIDE OF THE BED, HER LONG legs barely covered by her pink blanket. She was wearing only a pair of cotton underpants.
“Clothes are too scratchy,” she had said.
One of her arms lay across Margaret, who was asleep next to her, tightly bundled in fuzzy pink pajamas. The hum of the air conditioner in the window accounted for the nip in the air despite the fact that the late July sun was baking the roof overhead. The sicker Hannah got, the colder she wanted the room to be.
I rocked to the rhythm of the morphine pump’s click. As Hannah’s tumor grew, so did the amount of morphine she required. I was grateful for the way the drug seemed to dull Hannah’s pain, but the more effective it was, the easier it was to deny that she was sick enough to die. For days now, I had fantasized that she might wake up, ask to get dressed, and suggest we all go out to dinner. Claude seemed even more lost in the fantasy. Every time Dr. Kamalaker had prescribed an increase in her dose, he questioned the need to do it, explaining that he was afraid she might get addicted. Nobody had the heart to tell him that addiction is not possible for someone who is dead.
I continued to rock back and forth. A stack of books on the dresser with titles like Living With Death and Dying, Embraced by the Light, and How to Go on Living When Someone You Love Dies was as neglected as the shriveled piece of cheese that Hannah had requested and then refused to eat. Even her Christmas dress, which she had asked me to hang on the curtain rod where she could see it, seemed to be holding its breath.
I closed my eyes. My lids felt heavy and warm from too little sleep. I could feel Hannah looking at me. I opened my eyes slowly. Her arms were outstretched, reaching for me.
“Mommy, I want you to carry me to my room.”
I came alive. It was the first time in days she had asked to go anywhere other than the bathroom. Perhaps this was the moment everything had been waiting for. Hannah was taking an interest in life again. I gently and gingerly ran my hands under her bony hips and back and lifted her from the bed. I moved slowly to give her body time to adjust. I could almost hear her internal organs groan as the tumor shifted its bulk inside her. Hannah wrapped her thin arms around my neck and locked her legs around my hips. She pinned herself against me with a strength that surprised me. Her head rested on my shoulder. I breathed her in, felt her soft, “woolly mammoth” hair against my cheek. Her body was unnaturally warm given the coolness of the room. She was burning with a fever that would not break. Her chest rose and fell against mine, and I could feel both of our hearts beating—mine slow and deep, hers quick and light.
As I lifted her from the bed, I tried to imagine her sitting on the floor of her room, surrounded by baby dolls and dress-up clothes. I knew the image was as fragile as a painter’s wet canvas. As I adjusted Hannah’s position on my hip, she winced. The image slid out of my mind. I tried desperately not to jiggle or jar her too much as I carried her down the stairs. When we got to the doorway of her room, Hannah reached out and grabbed the wooden molding.
“Don’t put me down and don’t go in,” she said. “I just want to look.”
The two of us stood on the threshold, watching dust dance in the late afternoon sun. A pink comforter and her cow-jumping-over-the-moon quilt stretched neatly, without wrinkles, across her bed. Dolls and stuffed animals stared blankly from their perches on the shelf. Two seashells from a preschool field trip leaned against each other on top of her dresser. The magic wand she had made at her birthday party almost a year ago lay in the middle of the floor. I wanted to wave it through the hush and bring everything back to life.
I knew she was saying good-bye, but I wasn’t ready. This room with its sugar-pink sweetness, Barbie dolls, and red patent leather shoes was Hannah. If I were to say good-bye to this, what part of her would be left?
Releasing her grip on the door frame, Hannah wrapped her arms around my neck, and buried her face in my shoulder.
“I’m ready to go back now,” she said.
As we climbed the stairs, I walked as slowly as I could, savoring the closeness of her. Before returning her to the nest of pillows and blankets, I stood silently, swaying from side to side, as if in a trance. I didn’t want to let her go. I wanted to remain in this moment forever.
I thought about her room, how possible and yet inconceivable it was that she would never see it again. I wondered if it would always wait for her to return, if it would always be her room, if it would ever forget. I wondered the same things about myself: if I could accept that she would never return, if I would always feel like her mother, if I would ever forget.
Everywhere I Am, There You’ll Be
I WAS SITTING AT THE FOOT OF THE BED, SNUGGLING Margaret. It was early in the day. Claude had left for work. Will was sitting on the floor, eating cereal and watching TV.
Hannah stirred and sat up slowly. I turned to look at her. Her skin was almost translucent. She hadn’t eaten more than a bite or two of solid food for almost a week. As she had grown thinner, her tumor had grown bigger. Her left side was swollen grotesquely out of proportion. The skin that stretched across her ribs was deep purple from the mass of blood vessels that had accumulated there in a vain attempt to sate the cancer’s appetite for blood. Sometimes she asked me to rub her side. I hated knowing that as I lovingly ran my cool palms over her hot, numb skin, I was gently caressing her tumor. Hannah had made friends with it somehow, treating it gingerly, deferentially, adjusting her pillows so it could rest on a cushion of softness. I wasn’t willing. I wanted it to be gone.
Hannah looked at me. She winced, and then smiled.
“Mommy,” she said quietly, “do you know that even if I go to heaven, I’m going to come back?”
I paused before answering. I wanted to tell her the truth. The problem was, I wasn’t sure exactly what the truth was. I had read that grieving children under the age of six imagine death as a short absence and expect loved ones to return sometime after the funeral. I wondered if this was what Hannah thought, too.
I took a breath. Hannah was grinning now, her head cocked to one side. I studied her face. She looked light, expectant, unconcerned. I felt as if she was reading my mind, and was amused by my dilemma. I closed my eyes for a moment. There, behind my eyelids, I saw something I could hardly believe: It was Hannah, dancing in the sparkly darkness, radiant, laughing, and waving. I grinned, my eyes still closed.
In that instant I knew that, no matter what happened, there was a part of Hannah that would always be with me, something of her that would never die. It wasn’t a belief. It wasn’t a hope. It was a knowing beyond the workings of my mind, the quietest, deepest experience of faith I had ever known.
I opened my eyes and let go of the breath I had been holding in my heart.
“Yes, Hannah, I know,” I said.
Hannah leaned back into the pillows, closed her eyes, and smiled.
FAITH IS NOT ABOUT BELIEVING but about letting go of beliefs. Faith does not hope and pray for things to be different sometime in the future. Faith is the still heart that refuses nothing, our willingness to trust things as they are.
Compassion
from specialness to belonging
… It is assenting
that makes them angels …
their only work
to shine back,
however the passing brightness
hurts their eyes.
—Jane Hirshfield
As Real as It Gets
HANNAH WAS SPEAKING LESS AND LESS; EVERY WORD FROM her now might be her last.
“Mommy, where’s Will?” she asked, her voice almost a whisper.
Will rolled over and sat up. He had been lying on the floor, watching a movie, the volume so low it was practically mute.
“I’m right here, Hannah,” he said softly, turning off the TV.
Hannah shifted her head to the side, just enough to face him. They looked at each other quietly.
“Will,” Hannah asked, “do you know I’m too sick to ever play again?”
I w
as afraid to speak, afraid to breathe, wondering what Will would say.
“Yes, Hannah, I know,” he said quietly. “Does that make you sad?”
Hannah paused, still looking at him.
“No,” she said, shaking her head.
The two of them turned to me. I could feel their eyes taking in the wisps of hair that had escaped the clasp of my barrette, my creased forehead, heavy eyelids, and pale skin. I didn’t feel as tired as I knew I looked. I felt awed; humbled by the simplicity with which they had stepped into one of the most intimate moments two people could share. In one breath, the two of them had shown me what telling the truth and living the truth were ultimately all about.
Sorry She Asked
I KNOW SHE MEANT WELL; SHE SIMPLY HAD NO WAY OF knowing.
When the well-dressed, middle-aged woman stepped into the elevator with us at JCPenney that Sunday afternoon, things were not what they seemed. She smiled sweetly at me and peeked at baby Margaret in my arms.
She winked and turned to Will, who was eyeing her curiously.
“You must be the big brother,” she said with exaggerated importance. “Your mother is so lucky to have two beautiful children.”
“I have another sister at home,” Will said proudly. “Her name is Hannah.”
“Ooohhh,” said the nice lady, “why isn’t she shopping, too?”
I could see it coming and needed a Miss Manners book fast. Will didn’t hesitate. He jumped right in.
“She’s at home with my dad. She’s dying.” He added helpfully, “We’re here to get an outfit for my baby sister Margaret to wear to Hannah’s funeral.”
The woman turned to me, the skin on her face two shades lighter than her makeup. I felt sorry for her and smiled as sympathetically as I could. She wasn’t ready to let it go. She arched her brows and pasted a cheery smile on her face.
“Well,” she said loudly, “I bet you’re grateful for the babies you’ve had.”
There was no stopping Will now. “That’s for sure,” he said emphatically. “My mom’s had four miscarriages, too!”
Looking as if she might be sick, the woman turned and punched the second-floor button. When the doors slid open, she brushed past a group of people waiting to get in and disappeared down the hall.
“She was a nice lady, wasn’t she, Mom?” Will said, taking my hand.
“Yes, she was,” I said, “but I wonder if it was hard for her to hear about my miscarriages and Hannah dying.”
“Maybe,” Will said, shrugging his shoulders. “But she was the one who asked.”
The Bathroom Guilt Trip
I HAD TO GO TO THE BATHROOM, BUT I WAS AFRAID TO leave. It was clear to everyone that Hannah was dying, but no one could tell me when.
A small light was still burning in the corner of the bedroom for Pat, the hospice nurse, who had already come and gone. Every night, she checked in at two a.m. I was always awake when she came. We would whisper quietly so we wouldn’t wake Claude or the kids. All of us were sleeping in the same room now: Will and Claude in sleeping bags on the floor and Margaret, Hannah, and I in the bed.
Earlier tonight, I had asked Pat the question I always asked: “How much longer?” She had given me the answer she always gave: “It could happen anytime.”
I chided myself now for not having gone to the bathroom then. I had heard about children who lingered near death for days and chose to die in the one moment they were left alone. If I were to go to the bathroom now and Hannah died while I was gone, could I live with having to tell people that, instead of dying peacefully in my arms, Hannah died while I was on the toilet? I decided to hold it a while longer.
I watched Hannah breathe, imagining every breath to be her last. I saw how she looked already dead in the long, irregular pauses between breaths: thin, translucent, not breathing. I reminded myself that if she were dead, she would feel no pain. I began to tell myself that Hannah’s death might not be such a bad thing; that it would be okay with me if she were to remain in her breathless, painless translucence.
I was feeling more desperate to go to the bathroom and guilty for having imagined Hannah dead. How could my body even think about relieving itself when Hannah’s body was struggling to breathe? I lay next to her, praying for her breath to stop, then praying it would continue. I felt as if God were waiting for me to make up my mind; I couldn’t decide which would be better.
Now I really had to go. Every minute I told myself, “If you had gone two minutes ago, you could have done it, and she would still be here.”
When I couldn’t wait another second, I ran to the bathroom and sat on the toilet, barely able to contain the extent of my guilt and my relief.
Then I returned to Hannah’s side. She was still breathing. I felt a rush of gratitude followed by a crushing pain. How could I have wished even one more moment of this distorted life on her? I began to sob, overwhelmed by grief, guilt, and frustration. I buried my face in a pillow, not wanting to wake anyone. Hannah moaned. I sobbed harder. I had never felt more frightened or alone.
Suddenly, a feeling of warmth flooded through me. I lifted my face from the pillow, certain that this unexpected peace must be a sign that Hannah had died. I was wrong. She was still breathing. I closed my eyes. The warmth remained. I knew then that I wasn’t alone; that whatever was going to happen, it wasn’t up to me. The only thing I could do was be with Hannah; everything else was in God’s hands.
Stillness
I LIFTED HANNAH OFF THE TOILET, GENTLY, SPREADING MY hands wide under her hips so that her weight would be distributed more evenly. She winced.
“I’m sorry, Hannah,” I said. She nodded but didn’t speak.
Throughout her illness, even during her bone marrow transplant, Hannah had refused to wear a diaper.
“Diapers are for babies,” she had said.
Days ago, Pat had suggested to me that perhaps it was finally time. Hannah hadn’t even waited for me to respond.
“No diapers,” she said.
“What about a catheter?” Pat asked.
Hannah leaned toward Pat, looking directly into her eyes.
“No diapers and no tubes. Ever. You have to promise,” she said.
Now, as I stood up, I could feel Hannah’s heart racing against my chest. Before I could maneuver her long legs through the doorway, Hannah leaned over my shoulder and looked in the mirror. She urged me to move closer. I obeyed.
Hannah hadn’t seen herself in weeks. As the two of us stared silently at her reflection, she seemed surprised, not frightened, by what she saw. She tipped her head to one side, slightly puzzled, even amused. I couldn’t take my eyes off her; it was as if I, too, were seeing her for the first time. Her blond hair was dull and dry, sticking up all over her head. Her skin was pale, almost blue, the right side of her face gaunt, skin stretched taut over bone, the left side collapsed.
As our eyes met in the mirror, she looked into me the way she had when she blew out the candles on her cake almost eleven months before. I knew then that Hannah was more than this frail, sick child I was holding; part of her was living beyond this suffering, in that stillness I could feel but could not see.
Silence
THE HOUSE WAS QUIET AND SMELLED LIKE ICE RIPENING. I wrote in my journal and watched Hannah breathe. Although it had been less than three weeks since Claude carried her upstairs, it felt as if she had been dying forever. I glanced at the clock. Two o’clock. Will was playing at a friend’s house and Margaret was asleep in one corner of the bed. Exhausted from too many sleepless nights, I closed my eyes and rocked, resting my head on the back of the chair.
Suddenly, Hannah moaned. My eyes flew open. Hannah was reaching for me. I jumped up, checking the morphine pump and Broviac tubes to make sure nothing had malfunctioned.
“Does it hurt, baby?” I asked, stroking the top of her head. “Should I push the button and give you more morphine?”
Hannah nodded, still moaning and reaching for me. I pushed the button. I was starting to feel s
cared. Although her condition had seemed stable when Dr. Kamalaker stopped by yesterday, something had drastically changed. I decided to pick her up, not knowing what else to do. I lifted her off the bed and sat on the edge of the mattress, resting her body on my lap. Placing a soft pillow between her head and my arm, I covered the rest of her with her pink blanket. Hannah stopped moaning. Although her breath sounded strange, rapid and shallow, her eyes were open, looking at me. I reached for the phone and called Claude at work.
“I think you should come home right away,” I said.
Claude sighed. He sounded exasperated. This wasn’t the first time I had made such a call. I felt a bit like a pregnant woman with too many false-alarm labors.
“Okay, as soon as I clear off my desk I’ll be there,” he said.
I made two more calls: one to Pat, the other to my friend Kate. Kate had been a godsend in the past year. She had done practically everything: delivered hot, home-cooked meals, watched my kids, arranged for a housekeeper, washed and folded our laundry, and mowed our lawn. Minutes after I hung up the phone, I heard her running up the stairs. When she opened the door and saw Hannah on my lap, Kate began to cry.
“Is this it?” she whispered.
“I don’t know,” I said. Kate picked up Margaret.
“We’ll wait downstairs,” she said.
“Could you do one other thing?” I asked. Kate nodded. “Will is at Lili’s house, playing with Philippe. Please call, ask her to bring him home, and when he gets here, send him up right away.”
Kate left the room, closing the door behind her. Hannah’s eyes were open, watching me. Her breathing was more labored and irregular. I started to cry, and then, feeling helpless, I began to pray and sing. Hymns that I hadn’t thought of since childhood, the Lord’s Prayer, and the Twenty-third Psalm poured out of me.
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