Tag Archives: parenting

Duetting: Memoir 20

Duetting: Memoir 20 Robin Botie of Ithaca, New York, photoshops a peaceful loving moment between her children when they were young and constantly in competition.

They are out there, all around us, even here in small-town Ithaca. Around every corner, at the mall, strolling on the Commons, in Wegmans picking through the tomatoes. There are more and more scarred young women with denuded brows, wearing head-wraps to hide tender skulls, pristine and bare like babies’ bottoms. Is it just me noticing the increase of these brave veterans of private wars? I can picture entire armies of these women, these chemo-hardened warriors. At one time I would turn away, unable to look at anyone who looked like a cancer patient. But now, as when my son Greg joined the Army and I’d practically hug anyone I encountered wearing digital camouflage, I find myself drawn to these cancer-surviving women. They are my cousins, my family. We are blood relatives: I’m giving blood; they’re getting blood. They are my tribe, along with their mothers.

Blood donor, mother of two, Marika’s Mom, Army Mom, lifeguard, caregiver, lifelong student, artist, small business owner, teacher … in February 2012, I consider my various past roles, wondering who I am now and what’s next. Since my daughter died, women reach out to me; some I know and some strangers. They tell me they lost a son, or their daughter died too. They hug me. Welcome to the club, this is forever, they say. Bereaved Mothers. Our stories have similar endings. Our bonds are quickly cemented solid. Unlike the land-mined deserts materializing between me and all my friends who still have daughters. They are taking them to Cancun or Paris, while I am putting together a solo trip to Australia to scatter Marika’s ashes. My life is out of whack. I’m not prepared for any of this. How can I begin a new journey? Begin anything?

In the fall of 2008, Marika had wanted to hide her scars, the telltale signs of a cancer survivor. Hairless, exhausted, foggy from the chemo—it was not the way she wanted to begin college. But she needed to get on with her life. And I had my teaching job to get back to. The summer that wasn’t, was over. We thought normal was just around the corner, the cancer gone. So we focused on the logistics of her living in a basement dorm room, using a shared bathroom, and being in contact with thirty-five hundred students coming down with countless ailments just when her white blood cell count was due to crash from the chemo. She carried on with her classes wearing headscarves, make-up, and large dangling earrings, pretending to her new friends and teachers that she was not sick. Except to her friend Jake.

“Mom, I met that guy. Jake. The other freshman who has cancer,” she called during the first week. “On Saturday we’re going to Boston to- ”
“Did you go for your blood draw Monday?” I interrupted, meaning to get back to Jake, whom I’d heard about and hoped she would meet.
“Yes,” she barked back.
“Did you tell your instructors you’ll be gone for two weeks? Will they email you the notes and assignments? Are you eating?”
“Mom!” Over the phone, from three hundred miles away, the sound of my name was like gunshot. Retreating, I stifled my barrage and forgot to come back to the topic of Jake.     

Shortly after Marika got back to school in Massachusetts, brother Greg transferred from his army base in Washington State to Fort Drum in northern New York, about three hours from Ithaca. He drove home each weekend in less than two. The oncologists did not think Marika would need a bone marrow transplant but Greg, eager to deploy again soon, wanted to have his blood tested to see if he was a match, just in case.

My children had guts. I felt like a wimp next to them. She was fighting for her life with fevers over a hundred-and-four. He was flirting with death in far off deserts filled with improvised explosive devices. And I got on the phone or emailed almost daily to ask if they’d eaten enough protein for breakfast. They were anchored in their real worlds and I was the dizzy planet that orbited light-years off in the vast space around them.

They’d rarely been in agreement until he shipped out to boot camp. He was always a warrior. Or, more precisely, he had learned to fight to hang onto his share of the attention when his sister was born. She would wave her tiny clenched fists in his face when he peered into his old crib to find the sweet playmate he’d been promised. Twenty-two months apart in age, when Marika was three Greg cut off a chunk of her hair and she walloped him. He destroyed her doll; she walloped him again. She adored him but he’d storm into her bedroom late at night, whooping a war cry, and she’d wallop him on the spot. And then Greg would barely contain a gloating grin as she got punished for walloping him. There was constant competition between them.

“One day you two are gonna be best friends,” I’d say and they’d look at me like I was wearing dirty diapers. For many years, Marika was the big strong one, but Greg was fearless. He fought me and his father, his friends and his sister, long before he grew to be six feet tall and was called to Iraq and Afghanistan. As a teenager itching to get out of small town Ithaca, he teased the local cops, tearing through the streets on his bike. When he got his license he tore through town in his father’s truck, or in a girlfriend’s mother’s sedan, ripping up lawns and shearing mailboxes. Through an early-entrance bonus program he entered the army during his last year in high school, and trained in paintball combat with the recruiters on weekends, until he could graduate. Desperate to get going on his career, he was a displaced soldier, a total misfit in the liberal college-town of Ithaca. Marika and I were proud of him, but we worried about the trouble he could get into when he was home, and fought nightmares of worst-case scenarios when he finally deployed.

What does it really mean to be a soldier, I wonder? Soldiering, like lifeguarding, involves a lot of standing guard and protecting. Soldiers fight fiercely for causes, often destroying lives in the process. A lifeguard’s main mission is to save lives. Lifeguards stick around in one area, ever watchful to avoid disaster, while soldiers are always saying goodbye and leaving, heading off towards the thick of danger.

Long ago I lived with another soldier, loved him, and so many times watched him go out into the uncertain world. My father. He had been in the army during World War Two and was climbing the ranks in the Civil Air Patrol as I grew up. I’d spend hours following him, observing his carefully coordinated movements. I’d run to the door with the barking dog to welcome him home each evening, and made it my job to be up at six every morning to see my first soldier off to work.

Early one morning the boiler exploded in the musty basement of our Long Island ranch house. My father gathered up his three daughters and our mother into a far bedroom, and then led the fire brigade up and down the stairs to the scene of the disaster where it was not yet clear if the emergency was over. Strong and courageous, he was the one I wanted to be like. So later, whenever it was my turn to face danger, even though I was terrified, I tried to do what I thought my father would do: get tough and let nothing get in my way.

Soldiers tread the shaky ground between life and death. It is not always prudent for soldiers to ponder too closely their proximity to death; it’s more feasible to press forward with the mission at hand. When my son was about to leave for his first deployment, he went to say goodbye to our beloved family friend Andrea, the Montessori School directress.

“Greg, are you prepared to die?” she asked. Maybe it was like a small grenade bursting in his head, giving him something to think about. That’s how it hit me later, as his mother, when I heard about the conversation and tried to imagine how anyone could ask this of a soldier going off to war. That’s Andrea. She’s another lifeguard, caring for young lives in her small corner of the world. But unlike me, she wasn’t afraid to question what she didn’t understand.
“Yes,” Greg had answered her. And later, in Iraq, he missed death by mere minutes, inches, and the luck of being put on the fire squad that entered the building next to the one that was rigged.

No one ever asked me if I was prepared for a child of mine to die. Or I might have joined the Smother Mothers tribe, and clung desperately to all my beautiful soldiers, slowly strangulating the life out of them myself.

 

 

REPLY TO ROBIN

Duetting: Memoir 17

Duetting: Memoir 17 Robin Botie of Ithaca, New York uses Photoshop to illustrate how caregiving is like lifeguarding.

“When can we go home?” This was the one question I could always get away with in the hospital. It was our routine: ignore the nasty details, and push through to whatever we needed to hear in order to breathe. “She wants to know when she can go,” I’d say, but really, I, myself, hated being stuck in that creepy sunless hospital where I was turning languid and pale, sitting day after day immersed in my Ken Follett novel, World Without End. I was just as desperate as Marika was to be out of there. With luck, this second round of chemo would bring her blood counts back to normal and get her into remission. But Marika now had yellow skin and eyeballs. She was miserable with a head cold, fever, and stomach aches. Two weeks before, the Roc Docs discovered her inflamed gall bladder, but the surgeon couldn’t operate because she had no white blood cells to fight infection and too few platelets to stop the bleeding. Instead, they stuck a drainage tube in her side. It was now grinding against her tolerance.

“Mom, this sucks,” she yelled at me like it was my fault. We were constantly working to keep the tube and bile collection bag tied up in place with elastic bands and pins, tape, or anything that would hold until they could remove her gall bladder.
“Mom, where’s the tube?” she suddenly bellowed at me as if I’d taken it.
“What do you mean, where’s the tube?” We’d focused on little else the past week.
“The tube’s gone,” she said urgently.
“What did you do with it?”
“Maybe it fell out when I was in the vision clinic?”
“You left the tube in the vision clinic?” I said in an exaggerated accusatory tone, trying to stifle a giggle. We both broke out laughing at the thought of some unsuspecting half-blind patient finding the bile tube sitting abandoned on a waiting room chair. We needed to laugh. Cancer had become a summer-long project and the path to remission was riddled with setbacks. It looked like it was far from over, and Marika was tired of being a cancer patient. I was just getting the hang of caregiving.

Being a caregiver is a lot like being a lifeguard. Except as a caregiver I had just one swimmer I didn’t dare take my eyes off of. And she’d already sunken a few times, so I told myself I knew what danger looked like. Still, the lifeguard in me rarely rested.

“Any minor cold you pick up, with your compromised immune system, could turn into pneumonia. A friend’s pinkeye or cough could end up in septic shock for you. A virus could lead to major organ malfunction. Any stray little fungus or bacteria could kill you. So, no sushi,” the Roc Docs reminded us. Marika wanted sushi takeout for dinner. She always wanted sushi.
“Oysters?” she tried again in a tiny voice.
“How about cooked sushi? You know, the ones with cooked shrimp,” I contributed, trying hard to keep peace and establish common ground. Doc Phillips conceded to that and my eyes checked in with Marika’s.

“Can I get a pass to leave the hospital for a few hours?” she pushed. She was always pushing. I went for the compromises while she straight-shot for the prize. “Can I start college next month?” It was the big question of the summer. It was what we all prayed for, but didn’t dare plan on or shop for, in fear of jinxing the whole possibility. There was still too much that could completely dash that dream. And we never knew where trouble would come from.

“There’s no more cytarabine. So we’re sending you home. We’re sorry,” the Roc Docs announced days later during morning rounds. “We tried to get some from other area hospitals but there’s a nationwide shortage.” My eyes met Marika’s for a brief second before turning back to the doctors in disbelief.
“But that’s my main chemo drug now,” Marika whimpered.
“We’re sorry.”
“Call your dad, I’ll call Laurie,” I said, not fully digesting the significance of the situation but aware this was news they would want to know about. A good lifeguard is always ready for the unexpected; one never knows when it’ll be necessary to leap in and pull somebody from disaster. I made the arrangements for a homecoming, and packed up efficiently as nurses removed Marika’s IV. Then, suddenly, two young residents charged into the room out of breath.
“They’ve located the drug in Buffalo at Roswell Park Cancer Institute. It’s being sent over now.”

By the time the IV team returned to go through the tedious process of locating another vein on Marika and replacing the IV, I was wilted over the foot of the bed.
“Mom. Mom!” She blasted her eyes at me and bucked her chin toward the technicians surveying her arm. I’d almost forgotten my opportunity to squeeze her hand.

 

 

 

 

 

REPLY TO ROBIN

Duetting: Memoir 13

Duetting: Memoir 13 Robin Botie of Ithaca, New York, photoshops a picture of her daughter who died of leukemia to illustrate the confusion and chaos that follows the initial diagnosis of cancer.

The Roc Docs ordered another bone marrow biopsy. It was to be done by two residents, girls who looked no older than Marika. By then I knew about the trickiness of this standard bedside procedure, the need to get the right angle, the chances of missing the exact spot from where the marrow fluid was to be drawn, and the possibility of not getting enough material extracted. We asked about their success rates and the tools that were to be used. The docs assured us it would be nothing like the procedure performed at our local hospital. We agreed to give the resident-girls a chance. But if they didn’t get the sample they needed in two attempts, it would be quits.

They marked the spot with an X, and showed me the door, but Marika grabbed my hand and wouldn’t let go. Grateful she wanted me, I took my position at her shoulders once more. The resident girls missed at their first try. Wrong spot, no fluid. Marika produced a roar like a cornered tiger. They focused on their mark once again, and the world stood still. I watched Marika scrunch her eyes and grit her teeth. Three women hung over her, each in breathless silence. And suddenly one of the girls’ cell phones rang.

“Enough! I’m done. Get out,” Marika screamed at all of us. And then Marika made her second sound medical decision as an adult: no more biopsies without anesthesia. “I want Ver-sed,” she announced, coached over the phone by Laurie. Magic words. Biopsies with anesthesia meant no more bedside biopsies. And no biopsies by residents. The Roc Docs shrugged and shook their heads, surprised that insurance would cover it. So from then on, all Marika’s bone marrow biopsies and spinal injections would be done in the radiation department, with anesthesia, by an angel named Iris.

A week later we were twelve days into cancer, and Marika’s excessive bleeding was barely under control. I reluctantly left her to return home for a job review, the timing of which was not negotiable. Driving home from the hospital, I considered the logistics of the next day: the appointment to revive my neglected hair, the search for my pin-striped interview suit, and time to do laundering before returning to Strong. I recalled driving Marika to her first job interview a year before. She had worn a strappy tanktop with jeans, and heavy eye make-up.
“That’s what you’re wearing for this?” I’d asked, glancing over at her and grimacing.
“Mom, it’s for a camp job. It doesn’t matter,” she’d shot back. And she’d gotten hired, on the spot, charming them into hiring her for more money than was originally offered. She had that effect on people. I wished I had that. I approached interviews like I was going before a firing squad. I had to work hard to hide the sheer terror blazing in my eyes, my shaky speech and hands.

My cell phone rang and I pulled off the road. An unfamiliar voice gabbled on, something about bleeding lungs… adverse reaction to drugs… respiratory failure… admitted to the ICU.
“Is it serious?” I asked, still oblivious to the signs of disaster. “Should I turn around?”
“Well, your daughter has just been sedated. And intubated. And put on a ventilator,” she said in a voice that sounded like there was a “duh-uh” at the end.
“Sedated? Intubated? Ventilator? What does all this mean?” I asked, completely clueless about drugs that knock you unconscious, breathing tubes and breathing machines.

I turned the car around. And when I got back to Marika, now moved to a glass-walled room in the ICU, I learned they’d almost lost her. Respiratory failure. My daughter had stopped breathing. She was now taped and tubed, strung up and surrounded by chrome trees of drug-filled plastic bags and noisy pumping apparatus that inhaled and exhaled for her. To keep her alive. My own breath was stuck in my stomach. I watched the ticking monitors. We were tumbling yet deeper into the nightmare, into the wilds of cancer.

At six the next morning, when Marika was somewhat stabilized, after my colleagues had confirmed that indeed I must attend the review, and after a long night trying to rest on a tiny couch next to her bed, I left her again. I drove the two hours, got a fast haircut, threw on my suit, and pulled off the interview in a daze, and then traveled back to Rochester still wearing my interview outfit. Too anxious to wait for an elevator, I climbed the eight flights of stairs to the ICU, and arrived breathless at her bedside. Panting, I gratefully grasped her feet.

Days later she was taken off the respirator and transferred out of the ICU. And I was told I could keep my teaching job. Sore from the breathing tube, Marika could hardly talk or eat. But the drugs were working. Her bruises were fading, and her skyrocketed white blood cell count had plummeted to an acceptable level. Everything seemed under control, so when her father arrived I left, again, for the weekend. At home, exhausted from the difficult week, I had just allowed myself to relax when I got the phone call.
“She’s okay. Now. I was right there with her,” her father stated calmly before choking up, “Out of nowhere. Fast. Marika had seizures. Two horrific seizures. They almost killed her.”

There were no words. No breath. No grasp of time or gravity. There were no speed limits or miles or towns between home and the hospital in Rochester. Somehow I drove, and landed, stunned, back in the ICU. I crumpled at the end of her bed too shaken to do anything but clutch her feet and rub. She could have died. Twice, she almost died, and I wasn’t there.

 

 

 

 

 

 

 

 

 

 

 

REPLY TO ROBIN

Duetting: Memoir 11

Duetting: Memoir 11 Robin Botie of Ithaca, New York, photoshops words of her daughter Marika Warden who died of leukemia.

Before leukemia, home was the place we came back to long enough to grab what we needed, whether it was a nap, a meal or a gym bag, as we rushed out again down the hill and back into the world. We rushed and everyone around us rushed. We rushed to get our homework done, to get to school on time, to go to soccer practice or to the mall to pick up some last-minute sports tape, and a fast smoothie to tide us over. As a new special education teacher, I pushed to get through paperwork that piled up too quickly, while Marika scurried between schoolwork and part-time jobs at her favorite sushi restaurant and the gym’s daycare center. There was never enough time. Maybe we liked to eat out so much because it forced us to sit still while we waited for our food.

We were foodies. She baked. I cooked when I didn’t have too much homework from my SUNY Cortland classes. I danced in the kitchen to the muffled sounds of Marika’s music. Indie rock. Upstairs in her room, where she thought no one could hear, she sang over pre-recorded instrumentals. And in the car, stuffed with singing girls, the joyful un-muffled voices made me smile as we sped off to soccer games in neighboring counties.

On the soccer field Marika was an aggressive tank, stopping at nothing to get at the ball. I winced whenever she headed it, and cringed every time she barged into another player. Marika was fierce; she was fearless. So of course she was going to fight leukemia. Early on, a friend set her up with a blogsite, Marika Kicks Leukemia. Though she lived in a dense fog the first few weeks of cancer, Marika was set for battle. She would fight her disease, her doctors, me, and anything else that kept her from living her life the way she saw it.

Life, the way I saw it, should be beautiful and function flawlessly. I always believed I could design my way into or out of anything. For me, to design is to control. It is ongoing, like breathing. Each day, before the sun rises, I envision every possible scenario so nothing can hit me by surprise. To put the most harrowing things in manageable perspective, I draw and make endless lists. There’s always a ‘Plan B’ as I bolster myself for the worst.
“I’m not worrying, I’m designing,” I insist, when accused of being anxious. And designing always started at home even though I hated being alone at home, and Marika would rather be anywhere else. But by the end of May 2008, home was where we both yearned to be.

“When can I go home?” she asked countless times as teams of doctors filed in and out of her hospital room. First this had to happen and then that—there were obstacles. It was like Monopoly, one of those endless board games we always gave up on before we could finish. We were only at the beginning of our road trip. And my mind was already racing, working overtime to find “beautiful” and “flawless,” to put them back into our lives wherever we might land. But leukemia had wormed its way into the warp and woof of our world. Cancer hit home. The tides were broken. They’d collided. Soon I, too, could not “ride along to the same rhythm anymore,” as Marika said. We were hanging over the dark craggy cliff of the gorge when Marika nearly died two times in her first three weeks of cancer.

There was no way to design my way out of that.

 

 

 

REPLY TO ROBIN

Duetting: Memoir 10

Duetting: Memoir 10 Robin Botie of Ithaca, New York, photoshops layers of a word cloud to illustrate the stae of her home at the time of her daughter's cancer diagnosis.Our home is Ithaca, New York. It’s a small town, a perpetually young town between Cornell University and Ithaca College. Bumper stickers proclaim, “Ithaca is Gorges.” It’s true. At the south end of Cayuga Lake, the largest of the Finger Lakes, Ithaca teems with frothing waterfalls and dramatic cliffs. Fractured rock continually crashes down these steep craggy gorges, occasionally smashing and rearranging the landscape.

To grow up in Ithaca is to be intimately familiar with Purity Ice Cream, the Stewart Park Carousel, swimming at Buttermilk Falls, and picking out pets at our local no-kill SPCA shelter. Teenagers in Ithaca attend the Winter ChiliFest, the Ithaca Festival, and the nearby Grass Roots Festival, yearly events that draw thousands to the region. Many teens dare to party on Cornell’s beer-flooded Slope Day, and sneak down to swim illegally at Second Dam, a popular swimming hole. They know their way around the ethnic eateries of Collegetown. Ithaca is environmentally, politically, socially, alternatively, and healthfully conscious. Bumper stickers peg Ithaca as “Ten Square Miles Surrounded by Reality.” It suits me. It’s the special place on earth where I fit in.

In 1976, I followed my first husband here when he landed a teaching job at Cornell. We bought land in the countryside and built a palatial home with a pond. There, I started Silk Oak, a small silkscreen-printing design business. I finally learned to drive. Too busy with our careers, we did not have children. After ten years we split, and I got most of the land. I built a small house and another pond. A few years later I married my plumber, the God of Heat and Hot Water. We made the house bigger, and had Greg and Marika. Then I gave away my 20-year-old home business so I could be with the children, to take them swimming, on vacations, to birthday parties and summer camps. No longer in need of the space for Silk Oak, we sold the house and built a third, smaller house with a third, smaller pond on the same land. And when that marriage fell apart, I paid a lot of money to have my second husband’s name erased from the piece of paper that said the house and the pond and the land once belonged to us both. But I couldn’t erase him completely. He was still the father of my two children.

I don’t believe you can own land, the land you live on, pay taxes on, and love. I believe the land owns you. The land I call home claimed me long ago. Here, high in the hills surrounding Ithaca, it feels secluded from the world but is only a five-minute drop down the hill to town. The green hills, the gravelly soil that tries to contain the ponds, the wind which causes frequent power outages. The woods and the abundant wildlife. The valley, and its view of Ithaca College where at each year’s end the dormitory windows are lit up to display the changing digits of the New Year. This land holds me when I’m home. It calls when I’m away. Wherever I travel, my inner GPS is set to the hill west of Ithaca, to Go Home.

To go home in the spring of 2008 was to follow the long driveway from the turn off State Highway 79, just over the crest of the hill after EcoVillage, our local intentional community. Home was the wreck we abandoned each weekday morning, fleeing to our schools. Marika’s was Ithaca High School where she was a senior; mine was Lehman Alternative Community School where, after years of subbing once the kids got older, I’d been hired as a special education teacher. Home was the sweet mess we gratefully returned to late each afternoon, to scurry away into our individual corners until dinnertime, our time together.

It was just Marika and myself then. My son Greg was in the army, always far away in Iraq or at Fort Lewis in Washington State. And there was Laurie. Our ever-present encyclopedia and sounding board, Laurie was always lodged in the phone, the landline. And in the message machine that still held a twelve-day-old recording of her singing Happy Birthday to Marika in her calm low voice, drawing out the final line. We always counted on Laurie for either a short version or a lengthy, but engaging, exposition of the truth. She always gave you choices. She could explain quantum physics in terms a preschooler would understand. She planted cannonballs in your gut, spouting twenty reasons to go see a primary caregiver about your searing pelvic pain. She made you cringe in horror describing the fish-flesh texture of tissue invaded by lymphoma. Or she could get you to relax in grateful relief, telling you the pain you were sure was ovarian cancer was most likely gas.

“Laur, is leukemia related to cancer?” I asked on that first night.
“What’s gonna happen to me?” Marika asked at the same time. Over the phone, sandwiched between Marika’s and my ears, Laurie said,
“Don’t you know anyone who has leukemia?” like everyone on earth has at least a dozen friends walking around hijacked by their white blood cells. Marika, in a squeaky voice on the verge of crying, said,
“Yeah. He died.”

 

 

 

 

 

REPLY TO ROBIN

Duetting: Memoir 8

Duetting: Memoir 8 Robin Botie of ithaca, New York, photoshops purple bruises big as peonies on her daughter who died of leukemia.

“Mom! Get a life!”    
Marika always said this. It was her self-preserving way to end a losing battle, a clean exit that always rendered me speechless. Rolling her eyes, she would bark, “Mom. Get. A. Life.” My just-turned-eighteen-year-old daughter enunciated each word sharply. Like four smacks to my face.

On a spring evening in May 2008, soon after we’d had one of our regular disagreements, she shoved the phone at me. It was my sister. Again. The sister who’s a doctor outside of Boston, Marika’s longtime ally and confidante. She called Laurie every time monster-mom did something disagreeable, like say No. So I was ready to hear the retelling of my latest offenses.
“Put your glasses on and look at Marika’s face,” Laurie said, with no greeting, no preamble. “You’re looking for tiny burgundy snowflakes the size of a pinhead, around her eyes maybe.” I peered closely at my daughter’s pouting teenaged face and peeked at her neck and shoulders, aware we hadn’t been on touching terms the past decade.
“Laur, those burgundy snowflakes? They’re all over her. Hundreds. Everywhere.”

Geese were nesting. Hundreds of spring peepers, tiny frog-harbingers of the season, cheeped loudly into the night. Blooming lilacs perfumed the air as irises poked through growing bursts of greening foliage. And tiny burgundy snowflakes blossomed all over Marika. Along with purple bruises, big as peonies. Amid the budding and blossoming, disaster hit home. It had chewed on Marika for who knows how long. It shot darts through her head, planted renegade cells in her blood, rooted itself and grew.

I didn’t know. The past two weeks, when Marika mentioned headaches and being tired, I thought she just didn’t want to do her homework. But that evening, when she could no longer blame soccer for her excessive bruising, and couldn’t ignore the headaches or the fatigue, she’d phoned my sister. On the phone, from over three hundred miles away, Laurie could paint a clear picture of anything. Like petecchiae, the burgundy snowflakes running rampant over Marika.
“Get to the hospital now,” Laurie said, after listening to our dozen reasons why we wouldn’t be able to see a doctor in the morning. So we dropped everything and made a mad dash to our local emergency room, where Laurie phoned in a request for tests. An hour later she called back. And then—BAM! Leukemia.

It whacked the life we knew inside out and upside down.

Everything always revolved around Marika. She had a way of using up all the oxygen and energy within a considerable radius around her. She’s the one who got picked from the audience whenever a volunteer was called for. She was the one who came home with prizes: a bottle of champagne, a huge stuffed teddy bear from a local carnival. Her fierce determination landed her jobs and favored roles in school plays. Her smile, or maybe just plain luck, got her into situations where I could only shake my head in wonder.

I fretted about how soon she would leave home for college. I savored each soccer game and every opportunity to be a part of her life as she inched farther away, fighting to be free of me. The last stretched-thin string of glue tying us together was our connection to a strong tribe of mothers and daughters who, after years of play dates and carpooling, still got together for theater, out-of-town adventures, and dinners. Paula and her daughter Silviana came over with DVDs and chocolate the first night of leukemia, when the hospital sent us home to pack our things. Overcome with fear, Marika had called them. I was surprised to find them at our door. For me, oblivious to medical crises since Laurie always handled those, it didn’t register right away that here was something to be afraid of. We stayed up watching movies with Paula and Silvie all night before we left home again to enter our new reality of hospitals, doctors, and drugs.

The next morning, at Cayuga Medical Center, a mile from our house, Marika’s friends piled onto the bed with her. Her long hair shone, her cheeks blushed. She laughed. She had played soccer just the day before having next to no platelets and fifteen times too many white blood cells. This whole mess must be a mistake, I kept thinking. But I knew Laurie didn’t make mistakes, not like this. And she was working diligently now on the phone, with us, with the hospital, with her colleagues and resources in Massachusetts. What was leukemia anyway, I wondered? Something to do with bad blood? I didn’t understand a thing about what it meant but I felt my insides steel against some vague looming catastrophe. I sat stunned, immobilized. It wasn’t until the tall, dark storm that was Marika’s father lumbered into the hospital room, that I knew this was real.

 

 

 

REPLY TO ROBIN