Tag Archives: parenting

Duetting: Memoir 33

Duetting: Memoir 33 Robin Botie of Ithaca, New York, photoshops a duet about cancer deaths and losing a loved one.

“They’re flying in the wrong direction,” Marika said. “The geese. They’re going the wrong way.” She was living back at home after her year in college and second summer in the hospital. We were about to leave for the hospital in Rochester when we heard, overhead, the shrill commotion of geese in their winter migration south. Autumn departures of geese are head and heart-turning events in Upstate New York as the sky fills with their cries, long before one spots the approaching V-formation of their flight.

“Maybe they’re just circling before they leave Ithaca,” I said. She was right. Wrong direction.
“Stupid geese,” she muttered, still staring up at them, expressionless.
“Well, we always end up driving the wrong way, and we have GPS and road signs down here,” I blathered, watching the commotion disappear. She grimaced briefly in my direction and plopped into the passenger seat.

To accommodate the complex treatment in autumn 2009, Marika and I drove to Rochester three times a week with an occasional overnight stay. The Roc Docs were urging us to move up there for two months, for the rigorous schedule of dialysis, spinal chemo injections, and IV arsenic treatments. Social workers had researched places we could rent nearby that had no stairs. But we wanted to stay in Ithaca. Carpenters installed handrails in the house so Marika could reach her bedroom upstairs. None of this fit into Marika’s plans once she’d been sprung from Strong. She wanted to get on with her life, to be free of me and doctors and cancer. The social workers abandoned the idea to have us relocate, and were suddenly helping Marika apply for social services so she could afford her own apartment in Ithaca. There were conversations that didn’t include me now.

Life was gray and clouded, like the autumn sky over Ithaca, as we waited in a holding pattern: Marika hoping for funds to help pay for an apartment, and myself, anxious about locating a donor for a bone marrow or stem cell transplant. Greg was not a match. I was edgy because it was a risky procedure. Also, Marika had completed her chemotherapy, and the protocol demanded a pause in treatments before the transplant. Which meant there was nothing holding the cancer at bay.

On a dark afternoon in mid October, we sat in the Cardiology Center at Strong. Marika was intently studying her cell phone, her head at an exaggerated angle to accommodate viewing texted messages with her good eye. She looked up slowly from the phone, right through me, out across the empty waiting area’s loveseats and end tables.
“Jake died,” she said, more to herself than to me. Then she was silent.

I glanced at her still tearless face and didn’t know what to say. The other almost-adult child with cancer was gone. And in my head something was cracking. Something piercing and threatening that I needed to escape. Much later I would wonder about the mother with a broken heart somewhere in Pennsylvania or New Jersey, but at that moment I muted everything. Marika and I returned home from the hospital and retreated to our individual rooms.

In November, we drove to Roswell Park Cancer Institute in Buffalo for a second opinion about the transplant. The new Buffalo doctor examined Marika and read her history while I waited, crammed into a small conference room with her father and his wife.

Doctor Wetzler had riveting eyes. And a kind of compassion I didn’t understand. We’d never met before and would probably never see him again. We were summoned into the exam room and it felt like when I enter an expensive boutique shop knowing I will not be buying anything. Doctor Wetzler purposefully touched each of us with his deep warm eyes, and then began,
“Marika is not strong enough to survive a bone marrow transplant.” He said, “With her damaged heart, a transplant would be fatal at this time.” There was silence. The world froze still as we digested those words. She could die? The cure we’d been waiting for and counting on for so long could kill her?

“She should have her own stem cells harvested and frozen after several months of chemo,” he continued, looking at Marika, “when you’re free of leukemia cells. For a future transplant. Your heart needs time to heal.”

So. No transplant. No more risky procedure with bleak survival rates, possible organ damage, donor cells attacking normal tissue. Life-threatening complications. No more. Nothing. The lead blanket we’d been living under was suddenly lifted.

So Marika and I quickly headed for the car and drove the few blocks to the Anchor Bar and Grill, home of the original chicken wings. We ordered a feast. She took sips from my beer and waved a wing in the air. And then she told me her news, what I knew was coming sooner or later, the other issue I’d dreaded for months.

“Mom, there’s an apartment and I’m gonna get a monthly check now so I can afford it and Julie lives there and it’s in Collegetown,” she bubbled over in a long overdue spark of excitement. A storm grew in my gut. The wings on my plate grew cold.

 

 

Duetting: Memoir 29

Duetting: Memoir 29 Robin Botie of Ithaca, New York, photoshops an illustration of her child in the hospital with cancer holding her favorite stuffed animal.

A good lifeguard is a dry lifeguard. Meaning: a good lifeguard is diligent in predicting and preventing trouble. I remembered this from my training days at Camp Scatico. Waking up on a Sunday, I had my cry, did my morning hike, loaded up the car for the week and took off for Strong Memorial. By the time I parked, I had morphed back into my Strong mode. Starting the week off on the right foot, I climbed the eight flights to the ICU, and was on guard again. Ready to meet trouble. I would handle anything Strong sent my way that week.

The Red Cross books on life-guarding and first aid list the first step when you arrive at the scene of an accident: “Survey the scene for danger.” I always got that. My skills in diving underwater and hauling frantic victims to shore were questionable but surveying for danger came instinctively. Always wary of what might lie behind a closed door, in a bag left on the road, at the bottom of a kitchen sink filled with murky water, or in an old takeout container abandoned in the fridge, I exercise caution. So on that Sunday afternoon, arriving back at the hospital, I knew immediately something was wrong.

First clue: Marika’s father and his wife were still there. They wore twin frowns. Marika had been taken off the ventilator earlier that morning, recovering after two unconscious weeks, and now the monitors sat silent and still. I quickly pushed through to her bedside.
“Hi Mom,” she said in a voice higher than I expected. She smiled joyfully at me.
“Hi. Are you okay, Mareek?” I asked, my own voice rising in pitch to meet hers.
“Puppy.” She said, holding up her stuffed animal. I looked back and forth from Marika to Puppy to Marika again, to size up the scene: my Marika smiling at me, waving Puppy. Smiling. At me.
“Hi Puppy, it’s good to see you again.” I shook Puppy’s threadbare paw. Marika eyed me expectantly as I continued making a mental snapshot of things. Skirting familiar territory, in my special education teacher voice I asked, “Umm, can you count to ten, Mareek?” The situation was strange only because it was my own daughter I was assessing. Off on the side, her father was holding his head.

“Okay,” Marika said eagerly. “Okay. One, two. Three. Mom, Puppy.” She shoved Puppy at me like when she was three years old and wanted me to make Puppy dance. Baby Marika. Yow. What was happening? My little girl was back. And she liked to say “okay.” And now she wanted to sing. So we sang.

Surprisingly, Marika could remember many of the words to past camp songs and from beloved Broadway musicals. She now had me working hard to remember the words to Joni Mitchell’s “Circle Game.”
“An’ go around an’ round an’ round an’ round,” she was stuck like a broken record until I finally changed the tune.
“Oh the sun will come out,” I began an old favorite song by Charles Strouse and Martin Charnin from the musical, Annie, and she joined in. “Tomorrow. Betcha bottom dollar there’s no sorrow, come what may.” I held Puppy up and she watched, totally engaged. “Just thinkin’ about, tomorrow…”
“Keep her singing. It’s improving her breathing,” said Robert, the nurse who was adjusting the monitors next to us.
“Lah la la-la … hang on ‘til tomorrow,” we sang.
“Keep it up,” Robert encouraged, “It’s definitely helping.” Marika and I continued, both struggling to remember the words.
“La la-la-la something—something—sorrow,” we sputtered and came to a stop. And suddenly a deep baritone voice resounded around us,
“When I’m stuck with a daaaaay that’s gray and lonely, I just stick out my chin and grin and saaaaay—Oh—,” Robert sang with gusto, with hand gestures. We picked up our cue.
“The sun’ll come out tomorrow, so ya gotta hang on ‘til tomorrow,” the three of us sang loudly. “Tomorrow, tomorrow, I love ya, tomorrow! You’re only a day a-way!”

“Bravo!” I cheered, and turned to Robert. “You’re brilliant. You know all the words.”
“You wanna know how many school musicals I sang in?” Robert said. “I know all the words to everything. But I think we have to stop singing now. It seems to have increased her heart rate.”        

I assumed Marika was just dopey from the lingering sedation, and that she’d come around shortly. But by Tuesday the Roc Docs were conducting tests to determine the cause of her change in mental status. Laurie was on the phone, upset because the doctors wouldn’t return her calls.
“I’m not used to being an obnoxious, interfering relative, but if that’s what I have to be, I’ll do it. I’ve had a few patients die in the past twenty-nine years, and I can’t help but wonder whether the outcome would have been different had I spoken up and made the specialists listen to me,” she said. “I don’t ever want to feel that way about Marika.”

I’d forgotten one small detail in reporting back to Laurie. The doctors wouldn’t speak to her because Marika had arrived at the hospital this time with her friend instead of me, so the forms listing who should be privy to her medical information didn’t have Laurie’s name added. And now there was intense bleeding, nosebleeds so severe they made Marika’s blood pressure drop dangerously low. The doctors put us on alert. The Red Cross called Greg back from Afghanistan to be with his sister. Diagnoses and hypotheses showered down around us. But I was looking right into the eyes of my baby Marika who could barely see me, but was happy to have me there. And that night, after her father and his wife left, Marika’s breathing rate increased. Her oxygen level dropped and her heart rate shot off the charts. Afraid she wouldn’t be able to sustain the effort she was putting out just to breathe, the Roc Docs shoved the tube back down her throat and put her on the ventilator again.

I rubbed her feet and lay low under the tent I imagined around us, sheltering us from the storm that dropped down in a tumult of medical terms. “Encephalopathy.” “Aspiration pneumonia.” “Chemical pneumonitis.” “Necrosis of the red blood cells.” And “leukemia cells in the spinal fluid.” They drifted beyond our small world where I alternately rubbed her feet and snuck around the tubes and trappings to come closer, to sing into her ear in a high choked whisper, “The sun’ll come out tomorrow, so ya gotta hang on ‘til tomorrow….”

 

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.

 

 

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.

 

 

 

 

 

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.

 

 

 

 

 

 

 

 

 

 

 

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.