EXACTLY TWO WEEKS AFTER I HAD CARRIED HANNAH across the parking lot to the emergency room, we brought her home. It was a lovely late-summer evening when we pulled into the driveway. While Will and Hannah clapped and cheered, some part of me wanted to turn and run. Hannah’s cancer and my life had somehow felt more manageable in the hospital. Now, looking at the relief on Claude’s face as he unloaded the suitcases from the car, I imagined he was expecting things to return to normal. The problem was, I couldn’t remember what “normal” looked like anymore.
Stepping through the front door of our house, even the smell was different than I remembered. As I wandered from one room to the next, I saw my life through new eyes. I wondered what had happened to the woman who used to live here; it was hard to believe it had ever been me. I realized that my old routine—Friday morning moms’ group, play dates for the kids, church on Sunday—was a beautiful life for someone else, but not for me. I had no idea what my life was; I simply knew it wasn’t this.
Hannah seemed tentative, too. She walked slowly into the house, climbed the stairs, and stood quietly in the door-way of her room. Will came bounding up behind her, his arms full of the dolls, books, and stuffed animals people had sent to the hospital.
“Hannah, let’s find a place to put your new things,” he said.
“Okay,” she agreed.
While Claude finished unloading the car, I began clearing a shelf in the laundry room to make way for boxes of gauze, tape, antiseptics, vials of saline and heparin, syringes, caps, and a bright red container that read “Hazardous Materials—Medical Waste.” Where I once had a hospital floor of doctors, nurses, and residents to care for Hannah, I now had a space above the washer and dryer.
I heard peals of laughter coming from Hannah’s room.
Peeking in, I saw the contents of Hannah’s dress-up box strewn all over the floor. In the process of unpacking Hannah’s things, Will had found a short, blond wig. He was wearing it now, with Hannah’s rhinestone crown, dancing around the room, his solid boy body packed into a tutu with electric-blue sequins and a shimmering, multicolored skirt. Hannah was doubled over on the floor, laughing so hard she couldn’t stand up. I started to laugh, too. Claude, hearing the commotion, bounded up the stairs and joined in.
Listening to our laughter, I was filled with relief that we were together, that we could experience this much love and joy in such an ordinary moment. I realized, then, that home is not some familiar place you can always return to; it is the rightness you feel, wherever you are, when you know that you are loved.
Beyond Fear
THE TWO OF US WERE CROSSING THE PARKING LOT, ON OUR way to Hannah’s second chemotherapy appointment. It was early September, about a week before her third birthday. Her red shoes tapped on the pavement as she walked beside me. She was carrying her Little Mermaid lunch box, packed with graham crackers and apple juice. I held her other hand, mindful of the cars that were looking for spaces in the busy lot.
“Mommy, do children ever die?”
She asked the question with the same tone she might have used if she had wanted to know where babies come from, without a trace of fear or concern. Her face was turned toward me, waiting for my response. I forgot about the cars in the parking lot and the IV equipment waiting for us upstairs. Hannah’s question sucked me, fully present, into my body.
I paused before answering. I wished I could tell her that children didn’t die, or that, even if they did, it was so unusual that she didn’t have to worry about it. But I knew that wasn’t the truth, and I knew Hannah knew it, too. Although her question seemed simple, it landed as a single drop on the mirrored surface of a much deeper pond. Hannah wasn’t really asking me if children ever died. She was asking if I was willing to admit that she might die, wondering if she was the only one who knew, if I was willing to know it, too.
“Yes, Hannah, sometimes children die,” I said quietly.
Another drop in the pond. A question rolled off my tongue before I had a chance to think about it.
“Do you know what happens when they die?” I asked.
Silence; without breath.
“Uh-huh,” she said. “They go to heaven and keep God company.” She gripped my hand tighter and hopped like a bunny onto the sidewalk.
TRUTH IS FIERCE and unrelenting. We cannot change it, but we can change the way we live with it. Making mistakes, not being loved, and dying are inescapable experiences of being human; so is our fear of them. By facing those fears, we have a chance to step beyond them. When we are willing to do the best we can with what we know, to be honest with ourselves and others about who we are and what really matters to us, only then are the lives we live and the love we receive truly our own.
Joy
finding it in the
darkest places
He who hesitates before each step
will spend a lifetime on one foot.
—Chinese proverb
Hannah’s Birthday
I STOOD IN THE KITCHEN AND LISTENED TO THE SOUNDS OF laughter coming from the other room. I felt so relieved, I wanted to cry. In the month since Hannah’s diagnosis, I had looked forward to this day with an impossible combination of anxiety and joy, haunted by one question: Was this going to be Hannah’s third birthday or her last? I had agonized over whether to keep it simple or to plan something more elaborate in case she might never have another. When I asked Hannah how she wanted to celebrate the day, she had said, “I want a party with a Little Mermaid cake, not too much people and not too much gifts.”
“What if you could do anything you wanted,” I asked, “like going to see Sesame Street Live and inviting all your friends?”
“No, Mommy,” she said. “I want a party with a Little Mermaid cake, not too much people and not too much gifts.”
Rummaging through a drawer for the package of birthday candles, I could hear the children giggling and chattering. They were still breathless from their backyard treasure hunt. Each of them was a vision of loveliness in “discovered” finery: rhinestone tiaras, gold bangle bracelets, and plastic bead necklaces. Earlier, they had transformed a pile of wooden dowels, iridescent ribbons, glitter, and glue into magic wands that they were now using to bop each other on the head.
A quieter hum came from the mothers who were standing in one corner, sipping mugs of coffee. Deep in conversation, they paused occasionally to cast disapproving glances at wand-wielding treasure hunters whose behavior threatened to get out of hand. The ordinariness of it all was a relief from the initial awkwardness everyone had felt. The children had greeted Hannah shyly, tentatively. It was clear they had been reminded just before coming that Hannah had had surgery and might still feel sick. The mothers had embraced me with the same sort of shyness, as if they were uncertain whether to offer congratulations or condolences. I was sympathetic; even I wasn’t sure if I wanted to smile or burst into tears.
Hannah had been the one to step into the moment and set us all straight.
“Hey, you guys, do you want to see my scar?” she asked, reaching for the hem of her dress.
“You mean you can show it to us?” her friend Jackie whispered, wide-eyed and incredulous.
“Of course!” Hannah responded. “It’s just surgery.”
She lifted and tucked the hem of her dress under her chin, exposing a whip of angry-red, still-stapled flesh that cut from one side of her abdomen to the other. The kids, instinctively curious, crowded close and responded with appreciative oooo’s and aaahhhh’s.
One of the mothers turned to me and whispered, “Is this okay with you?”
I smiled and shrugged my shoulders. “If it’s okay with her, it’s okay with me.”
“Does it hurt?” one of the children asked.
“Not so much,” Hannah answered. “My doctors gave me medicine and pizza, so I got better much faster.”
“Wow, I want to have surgery!” someone else said. The others nodded in agreement.
There was a slight pause, and then Jackie asked
, “Hannah, can you still play?”
“Of course, you silly,” Hannah said. “This is a party, isn’t it?”
Everyone laughed. The awkward spell had been broken and the party had begun.
I found the packet of birthday candles in the drawer, removed three of them, and slid them into one corner of the cake. I stepped back and smiled. This was no supermarket bakeshop cake; it was a masterpiece that Hannah and I had created together. On it, plastic figures of the Little Mermaid and Prince Eric stood, holding hands, on a brown-frosted island in the middle of a blue-and-green frosted sea. Here and there, holes the size of Hannah’s index finger were outlined in chocolate cake crumbs, where Hannah had “tested” to make sure all the frostings tasted the same.
I lit the candles. They seemed dwarfed by the large cake. Three wasn’t enough candles for a cake or enough years for a life. Tears I had been holding inside welled up. I blinked hard. I couldn’t cry now. I would ruin the happiest moment of the whole day. Taking a deep breath, I picked up the cake, pasted a smile on my face, and stepped into the dining room. “Happy birthday to you …” The laughter and talking stopped as everyone joined in. I maneuvered the cake through an obstacle course of children, balloons, and tissue paper streamers, so engrossed in getting the cake to the table without igniting anyone or anything, that I didn’t notice what Hannah was doing. When I finally looked up, my pasted-on grin slid off my chin.
Unlike everyone around her, Hannah wasn’t smiling. She was solemn, quiet, almost completely still. Only her head moved as her eyes traveled slowly from one person to the next, resting finally on me. For a split second, I thought something was wrong; she was tired or sad, or the excitement was too much for her. Then I realized, far from feeling unhappy, Hannah was letting everyone and everything in this moment seep into her heart. As the loud, off-key rendition of “Happy Birthday” came to an end, bright eyes and flushed faces turned to look at her. She smiled slightly, still taking it all in. Everyone waited. A long silence. The other children began to wriggle impatiently.
“Make a wish, Hannah,” someone called out.
Hannah looked at me. Her eyes burned into my heart. The adults were no longer smiling. The kids were no longer wriggling. Everyone was watching Hannah; Hannah was watching me. The room was suspended in a hush, like the fullness in church after the last “amen.” Finally, finally, with only a whisper of breath, Hannah blew the flames out. Even as she did it, her eyes never left mine. I felt more present, more there with her than I had felt with any other person, ever.
In one breath, Hannah blew out her candles and blew open my heart. I now knew there was a joy beyond happiness, out-loud laughs, and pasted-on grins. Its essence was stillness; a deep quiet that could be inhaled, that poured through my body until there was no part that was not filled.
Anticipation
I WANTED TO BOW LOW, DIG A HOLE, AND BURY MYSELF IN gratitude. I would have if I had been able to take my eyes off Hannah. She was waving to me from the school bus window, the pink baseball cap on her head knocked sideways in the hustle to find her seat.
Since the day Dr. Kamalaker had told us Hannah had a cancer no one was sure how to treat, Claude and I had begun living the paradox of wanting to do anything to find a cure and needing to preserve the quality of time Hannah had left. Claude had spent hours on the Internet and the phone, talking to doctors and medical librarians across the country, amassing a notebook, five inches thick, of every piece of information he could find about Hannah’s cancer. Some part of him seemed convinced that Hannah’s illness was like a particularly difficult engineering problem; if he just had the right information, he’d be able to figure it out.
One of the first things we realized was that because the cancer was so aggressive and rare, the treatments were, too. We used Dr. Markoff’s rule and made the best decisions we could with the information we had at the time. After meeting personally with doctors in New York and Philadelphia, and speaking with others on the phone, Claude and I had agreed to try the chemotherapy protocol used on the little girl in Washington State who was still alive fifteen months after her diagnosis. The chemotherapy would be administered once a week at the outpatient clinic, which was only twenty minutes from home. We trusted Dr. Kamalaker and Dr. Bekele and appreciated how gracefully Jill, the social worker, had eased herself into our lives.
It was Jill who had broken the news to me that Hannah wouldn’t be able to go to preschool. She and I were sitting beside Hannah’s bed just after her surgery.
“I understand you’re making arrangements for Hannah to start preschool next month,” she said. She cleared her throat and shifted in her chair. “You realize, don’t you, that chemotherapy will severely compromise Hannah’s immune system. Preschool,” she continued, laying a hand lightly on my arm, “is definitely out of the question.”
I had taken a moment to let her words sink in. I knew that what she said was true. But to me, Hannah was a three-year-old first, and a cancer patient second.
“You don’t understand,” I said. “After everything Hannah’s been through, I won’t take preschool away from her. You see, she wants to ride on a bus and go on field trips with her friends. I’m willing to do anything to make that happen.”
Jill wasn’t giving up. “People will do amazing things to help kids in Hannah’s situation. I’m sure we can arrange for a school bus, an empty one, to come to your house and take her for a ride. Hannah won’t know the difference.”
I laughed and shook my head. If ever I was going to be right about something, it was this. “Jill, I’m sure you know a lot of things, but if you think an empty school bus pulling up to the house is going to fool Hannah, you definitely don’t know her.”
Hannah started preschool the week after her third birthday. Once the decision was made, everyone committed themselves to making it work. Mrs. Fisher and Mrs. Forsythe, Hannah’s teachers, met with nurses from the clinic to discuss ways to minimize Hannah’s exposure to germs. They also met with the parents of the other children in the class to address any concerns or questions they had. Ursula, the clinic’s receptionist, scheduled all Hannah’s tests and chemotherapy appointments so as not to interfere with her Tuesday/Thursday morning class. Hannah threw herself wholeheartedly into school. As a result, her treatment became simply one more thing on our calendar, rather than the only thing on our minds.
Mrs. Fisher nudged the last of her charges up the steps of the bus, counting each head as they passed.
“Okay, moms,” she called out. “It looks like we’re ready to roll!”
Her announcement was greeted with a chorus of shouts from twenty-nine three- and four-year-olds. The bus driver slid the doors shut and started the engine. Through the window, I saw Hannah grab the back of the seat in front of her and bounce up and down, a huge grin on her face. As the bus began to pull away, she let go briefly, turned, and waved. At that moment I snapped my camera and snatched a memory that, to this day, sits in a silver frame on Jill’s desk.
“Every morning,” Jill told me, “Hannah waves to me from the window of that bus, and reminds me that more things are possible than I know.”
No Worries
I WAS UNLOADING THE DISHWASHER WHEN HANNAH DANCED into the kitchen. She was wearing her glitter-pink bathing suit and waving her birthday magic wand.
“Mommy, let’s finger-paint,” she said, pirouetting around the table. “Pleeeeze,” she added.
I straightened up, arching the aches out of my back. Last night’s dishes were stacked, unwashed, on piles of unopened mail on the counter. The message light was blinking on the phone-answering machine, and the buzzer on the clothes dryer was reminding me every two minutes that it was ready for more. I had an endless list of things to do, and finger-painting wasn’t one of them.
No matter. We stood the big, blue easel in a warm patch of September sun in the thick backyard grass. Then we took off our shoes and slid glossy white sheets of finger-paint paper under the bright-yellow clip. Hannah arranged cups of pa
int in the tray beneath; strawberry red, ocean blue, lemon-drop yellow, new-tomato green.
We dipped our fingers in the cups and smooshed them around.
“Gross!” Hannah said.
Giggling, we lifted them out. Thick, gooey globs of paint dropped off our fingertips into the grass. We smudged the paper with color in looping, rainbow swirls. We created one masterpiece after the next. Half an hour later, Will came home from school. Seeing us, he grinned and dropped his backpack on the ground, and he, too, became a dancing, painting fool.
Later that night, I sat at the kitchen table with a lukewarm cup of coffee, studying the paintings taped to the cupboard doors. They were beautiful. I was actually proud of mine. A knot in my heart began to unravel. For years I had been wanting to paint and had told myself I would have to take lessons first, so I wouldn’t do it wrong. Today, without brushes and palettes to intimidate me, my fear had literally slipped through my fingers. I had lost myself in the joy of it.
Swirling my coffee around in its mug, I watched the moon rise through the kitchen window. I could feel a whole other life beating beneath my skin.
The Unbirthday
“MOMMY, WHY AM I NOT GOING TO HAVE A BIRTHDAY after four?”
We had gone to the grocery store. Hannah’s question dropped into the car just as I turned into our driveway. Memories of her third birthday and our conversation about whether children ever die were as fresh in me as the scar from her surgery. She sounded perplexed but certain; as if she knew it was true, but didn’t quite understand why.
I pulled the car into the garage, shifted the gear into park, and turned off the ignition. I looked in the rearview mirror; Hannah was watching the back of my head. I took a deep breath and turned to face her.
“I’m not sure that’s true, Hannah,” I offered, hating the exaggerated cheerfulness in my voice. “After your fourth birthday, you’ll have your fifth birthday.”
Hannah's Gift Page 4