Tag Archives: mother daughter relationships

Duetting: Memoir 47

Duetting: Memoir 47 Robin Botie of Ithaca, New York, photoshops her daughter who died of leukemia amid a screen of falling blood cells

Sometimes I got my life mixed up with my daughter’s life. Like whenever Marika’s blood was drawn, I felt the pain. And once, in the ICU, I watched the monitor display her racing heartbeat for so long, I had to be taken downstairs to the emergency room as my own heart quickened and surged. Marika was getting the transplant, but I was getting a severe panic attack. As we waited for the transplant, I had to remind myself to relax. To breathe.

Late in the afternoon on December 1, 2010, the Roc Docs entered our room looking defeated. I worried, maybe something had happened to our donor. Doc Phillips was back, heading the team. But he did not look like his jolly old self. He sat down heavily and began with a long sigh.
“You are no longer in remission,” he said to Marika. Remembering how we’d postponed the transplant for her concert, I couldn’t bear to look at her.
“So there’s no transplant?” I heard a small voice say. Was it mine? Or Marika’s?
“Things have changed. We do have some good news out of all of this. We have a silver lining,” he said, recovering some of his cheer. “A silver lining,” he repeated. We waited, shaken. “The presence of leukemic cells makes you ineligible for the donor transplant. But,” he said with a dramatic pause. “But, remember that collection of stem cells we harvested from you last March, after the arsenic treatments?”
“Yeah. And then I got leukemia again three months later,” Marika wailed.
“Well, the new plan is to give you an autologous transplant using those cells, your own harvested cells, in the next day or two. This won’t cure you, since you had leukemic cells shortly after the harvesting, but it can get you back into remission briefly. And then you can have the donor’s-cells transplant.” I hugged myself and wondered how many more months until we were on the way to being cured. Relapse number three, and it wasn’t even summer yet.

The autologous transplant was a quick, uneventful procedure, so at the end of the week I went home to Ithaca. When I returned on Sunday, an electronic piano had been moved into the hospital room. New posters were taped onto the wall opposite the bed. The place had a cozy, lived-in feeling, a look that smacked of exuberant festivities.

“How was your weekend?” I asked, trying not to sound overly nosy.
“Mouth sores,” she said gloomily, reminding me of Eeyore from Winnie the Pooh.
“Oh, I brought you Vitamin Water. Maybe that will help.” I unpacked food items, fresh laundry, and mail. Gift bags and an assortment of drinks from her father and his wife already lined the windowsill. A big shiny balloon sailed above the end of the bed, which meant Rachel had been there. I rarely saw Rachel anymore as she worked weekdays. She must have brought the half-eaten chocolate cake that sat on the bed-tray too. They’d had a big party here all weekend, and I got to come back to Eeyore.
“Can’t talk,” Marika said sullenly.
“That’s not good. Are they giving you lozenges or something?” I asked.
“Can’t swallow,” she said, grabbing the croissant I’d placed on her tray.

In the next few days her cell counts rose to acceptable levels and we went home for the holidays. Our donor, the complete stranger who was going to share his blood, rich with stem cells, so Marika could live, would wait for us. Again. For the end of January. I wrote and rewrote a thank you letter to him that the Roc Docs would deliver. The holidays sped by quickly. I celebrated everything I could. Chanukah, Christmas, Kwanzaa, the Winter Solstice. I made tiramisu. Marika and Greg took me out to Bandwagon, a new Ithaca restaurant and brewery. He bought dinner. She gave me her new CD. I gave them each hundred dollar bills wrapped in new gloves, with Chapsticks and chocolates.

“It’s not finished yet. The CD. There’s another song to be added,” Marika said. She sat across from me wearing a turquoise head wrap, large hoop earrings and eye make-up. She had a party planned for after dinner. Her friends were home from college, and she was cramming what she could into her nights. During the days she came home from Limbo to do laundry and sleep. She’d creep down the stairs every so often, “Mom, ‘s there anything to eat?” I loved that time before the donor transplant. It was peaceful. Quiet. Like the calm before a storm.

Deep, dirty snow mounded up along the roads in Rochester on the morning we arrived back at Strong for a full week of chemotherapy and radiation. I piled Marika’s belongings onto a stray wheelchair in the parking garage. My own things remained in the car to be unpacked later at Hope Lodge, the cancer families’ home away from home. I stashed away her bathrobe, slippers, and toiletries exactly where they were in the last room, and then, just as I pulled up a chair, Marika handed me a three-page typed document. Fumbling for my glasses, I saw it was a list of all the places in Rochester I could visit for free.

“You’re not staying,” she said firmly. “I don’t want you here all the time anymore.” For a few stunned seconds I stood there trying to collect myself.
“But your cancer is my cancer,” I whimpered.
“Mom. Get a life,” she blasted back. For a few more seconds I forgot to breathe.

“Okay, but I’ll be here every morning for the doctors’ rounds,” I said, “and then I’ll leave until dinnertime.” She loved her dinners. “And I’ll be on the treadmill in the family room for an hour after rounds each morning, if you need me—need something.” Despite my bruised feelings, I was gaining momentum. “Otherwise I’ll be at Hedonist Chocolates, Wegmans, The Owl House Café, or Dinosaur Barbecue,” I added, naming her favorite Rochester eateries, “or any of the places on this list.” The plan worked for two days, and then the effects of the radiation kicked in and things started to get scary. On the third day, after the morning rounds, she flashed me her pathetic puppy-face as I got ready to leave.
“Aren’t you gonna stay?” she begged.

 

 

 

REPLY TO ROBIN

Duetting: Memoir 25

Duetting: Memoir 25 Robin Botie of Ithaca, New York, phoshops a tangle of computer wires and cables to illustrate a aprt of her memoir about closure after the death of a loved one.It is the day before my first Christmas Eve without Marika. No Christmas this year. No Chanukah. Holidays seem pointless without Marika. So I’m erasing the whole season. Instead I’ll clean and write and do un-holiday-type things. Like clearing out the last of Marika’s belongings.

I had surprised myself, and others, by how quickly I got rid of her things. It had been eerily easy. Somewhere, someone said cleaning up after a dead loved one is an important aspect of achieving closure. Closure—hah! Not for me. It is more like a desperate urge to re-home the many pieces of Marika. I am seeding the world with her stuff. It requires a great trust in the universe to find the right new person or place for the pretty prom dresses, the high-heeled shoes, stuffed animals … and now, the old desktop computer in her room. Marika hadn’t used it since shortly after she got cancer, after my father gave her a new laptop for college. Staples will recycle the old computer for ten dollars.

Rachel comes over to help me get it into the car. It feels less intrusive to rummage through Marika’s underwear drawer or her journals than to go anywhere near her old computer. But we briefly check it for anything I might want to keep. Nothing. I crave the writings of the almost-adult Marika, but this computer predates that. So Rachel tears it from the tangled mass of cables and wires, the arteries and veins that bind it to home.

“I ended up drunk in the ER every weekend. It was like I was suicidal,” Rachel tells me as she pulls cords out from under the desk. I keep my mouth shut. “When I went into Rehab, I was out of contact with the world for twenty-eight days. No phone, no computer,” she says.
“Are you back at work now? What was that last job? Working as a caseworker?”  
“Yeah. I had to resign when I went to Rehab. I loved that job.”
“That was a neat job,” I say. She carries the computer down the stairs and I follow.
“Can you read some of the book to me?” she asks, after she shoves the computer into the car. She reminds me of Marika as a young child begging me to read. But before I can begin, Rachel’s cell phone rings. She listens briefly.

“What are you doing in a bar, you goofball? Get out of there. Fast,” she says. Then, “You’re gonna throw sixty days of sobriety down the trash for a girl?” As she speaks to this person in crisis, I am awed at how together Rachel sounds. She seems to have found herself after this difficult year of loss, substance abuse, and Rehab. Her head is in a good place, whereas I feel lost. After the last three sad but blessed years of knowing exactly why I was where I was, I now find myself directionless.

Later, alone in the Staples parking lot, I can barely lift the computer tower out of the car and into a shopping cart. I know I’m in trouble when, wheeling the loaded cart through the automatic doors, I have a flashback to last year at this time when I pushed Marika in a wheelchair through similar doors at the hospital. But soon, two Staples technicians are operating with screwdrivers and pliers to pull the ancient computer apart. The younger tech, about Marika’s age, extracts and then hands me the hard drive, a small but surprisingly heavy black metal box. It says “Fragile” on it and contains all her old high school homework, snippets of printed conversations with friends, playlists, … young girl-stuff locked up inside. It is like holding Marika’s heart. The technician draws stars in blue ink on the white label.

“Drill here. When you get rid of a computer you have to destroy the hard drive,” he says. Too mesmerized by the mysterious box in my hands, I don’t question why Staples doesn’t just take it and complete the job themselves. Through sobs, I ask the tech whom to pay the ten dollars to, and he tells me there’s no charge. On the verge of a major meltdown, I take Marika’s Heart Drive and flee.

My son, on his way out just as I arrive home with the somber little black box, offers to blast it apart at his next shooting session. Remembering how proud Marika had been of her brother shooting a shotgun off the deck during one of her parties, I give it to Greg. After all, maybe he needs some closure.

 

 

 

REPLY TO ROBIN

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 19

Duetting: Memoir 19 Robin Botie of Ithaca, New York Photoshops a duet of her words and the writings of her daughter who died of cancer.

It was all distractions. Diversions. Detoured from our former daily missions, we’d do anything to pass time so we could just go home again, live our real lives, and be normal.

I discovered I liked being a caregiver. I also learned that my toughest challenges always seemed to involve the invisible. Like germs. Fungi, bacteria, and viruses surrounded us. My days revolved around avoiding them. Water bottles and food older than a day were thrown out. It was comforting to wash my hands in very hot water, humming the Happy Birthday song twice, the recommended amount of time to eliminate germs. And I loved “Purelling,” using hand sanitizer, forty times a day. But despite my phobic efforts, Marika was always being plagued by something I couldn’t see. Like abnormal blood counts. We waited every morning for the daily report. If the numbers were right, she could leave the room with a mask on, eat an apple, visit nurses on other units, maybe even go home. I couldn’t see it in her face or her demeanor. She could be feeling terrific but if the counts weren’t where they should be, we weren’t going anywhere.

And I, myself, was invisible. Afraid of being told to go, either by Marika or her doctors, I made myself small. I was the fairy facilitator, barely noticed until clean clothes, food, or a hand to squeeze during a shot was needed. Much of the time Marika pretended I was not there. But I knew that she knew I would always be there for her. The hard part was my invisibility when dealing with the rest of the world. Like her father. I’d report to him daily after the morning rounds, and immediately when there was trouble. But he’d call the nurses and doctors anyway, so I felt overlooked. Invisible. And Laurie. She emailed online newsletters to keep family and friends posted so they could support Marika.

“Laur, what about me? You report the news like you’re the one stuck here in the trenches getting all the information yourself. There’s never any mention of me or my efforts,” I cried, like a jealous four-year-old with a new baby in the family. The doctors stopped addressing me. The nurses, many only a few years older than Marika, were devoted to her and visited often. From my lonely corner by the recycling buckets and hazardous waste containers, I peeked at the company that came and went. “I’m her mother,” I wanted to scream. “She wouldn’t be here if it weren’t for me.” No, she wouldn’t be here if it weren’t for cancer, I corrected myself. And in my heart I was grateful for the attention Marika got. I might be small and insignificant, but not to her.
“Mom, can you get me some Pacifica Brazilian Mango perfume at Wegmans?” she pleaded, with a silly pout. Then I was practically skipping out the door.

July. August. There was so much hope. We charged up and down the hallways dragging the IV stand by its cord, taking turns pushing the wheelchair, both of us wearing masks to ward off germs. Wending our way around meal carts, we dared the despicable germs to try to catch us. Marika had already recovered from major episodes of seizures, pneumonia, septic shock, and respiratory failure. Twice she’d emerged smiling victoriously from complete life support in the ICU. She was a star, on life number three, and we couldn’t imagine that she wouldn’t always be able to produce a miracle. Stunned and proud, and tethered behind like a small dumb dinghy, I sailed, always in her wake.

The gall bladder surgery took three hours. I sat alone in the hallway chewing my cuticles until it was over. There were complications. She came through but would need more recovery time. This would set back the final chemo treatment and thereby create a major timing crisis. The chemo required two weeks of careful monitoring as her cell counts were put into crash mode. But freshman orientation was coming up fast.

“She can’t miss orientation,” Laurie pleaded over the phone, “That’s when students learn how to make college work for them and how to go about screwing it up. Lifetime friendships are formed during that first week. It’s critically important.” I remembered my own college orientation, the excitement of beginning the new adventure that was mine alone, not my family’s. That was what I wanted for my daughter. But I kept quiet and let her work with Laurie to devise a plan the doctors would accept.

Early on a crisp morning at the end of August I drove Marika from home to Clark University in Worcester, Massachusetts. I helped her unpack. Laurie joined us, elated that Marika was finally going to live close by. It was a magical day, sunny and warm, full of excited students and other apprehensive parents.

“Do you believe we made it?” I said, over and over, drunk with happiness as we inspected the dorm, its bathrooms and community spaces. Laurie and I followed Marika to the registrar, the computer center, the dining hall, and finally the health center where we made sure they were well aware of what Laurie affectionately termed “the little time bomb” they now had in their midst.

I cried all the way back to Ithaca. Our scrimmage with cancer was over. It had ended well. Marika would get her college orientation and the first week of classes, I reminded myself. She would stay with Laurie in a hotel between the school and the medical center during the riskiest days. And in two weeks she’d return home, briefly, for her third round of chemo at Strong. I would go with her to Rochester until her counts allowed her to recoup at home. And then she’d be off to the university again. It was a good plan; everyone was satisfied.

So she’d been launched. Her new life was beginning. Marika belonged to Massachusetts and Clark University now, six hours from home. She belonged to Laurie. She belonged to the Greater World at last.

Mission accomplished.

There was plenty to worry about.

 

 

REPLY TO ROBIN

Duetting: Memoir 15

Duetting: Memoir 15 Robin Botie of Ithaca, New York photoshops a poem written by her daughter who died, placing it over an image of silhouettes.

Marika’s classmates and teachers had been sending notes of support, and “Marika Kicks Leukemia” tee shirts circulated throughout Ithaca High. In a daze, but smiling, Marika listened to her benefit concert over my cellphone held to her ear. The guidance counselor called daily to see if she could attend the graduation, but no one knew for sure if Marika would be able to walk, sit up in a wheelchair, or even tolerate the trip back to Ithaca. At the last minute the Roc Docs said yes. In a stupor of disbelief, I drove her home.

There was plenty to worry about. Marika could pass out at any time. It was hot, and the red wig was heavy under her cap. She could barely walk, but insisted on walking. There were stairs. Her last name beginning with ‘W’, she would shake the same germ-riddled hands that shook all four hundred classmates’ hands before her. Concerned about her meager immune system, I presented her with a pair of purple latex gloves. She ignored me. She was uninterested in instructions on how to gracefully avoid handshakes and hugs. How would she hold up during the half hour wait in line the students had to endure before claiming their seats? She was determined to do the whole thing the way she’d always expected. So I left her off as close as I could to the stadium at Cornell University where the event was to take place, where there was already a traffic jam, long lines, and huge tangles of people and germs.

We were all there at Schoellkopf Hall. Laurie. Greg. Rachel. Marcus. Marika’s father and his wife. Our mother-daughter tribe. Teachers Marika hadn’t seen in weeks. People I hadn’t seen in years. I was hugged repeatedly as Laurie and I made our way to the spot high in the bleachers that Rachel had staked out for us. The band began to play and the class of 2008 filed in and filled the expanse of seats below us. Teary-eyed, I kept my gaze fixed on Marika during the speeches. Then, finally, the students rose from their seats.

Marika stood. Soon, she was walking. She was next. The stairs—suddenly I couldn’t see through the crowd—she’d somehow climbed the stairs when her name was called. There was a burst of applause. There was thunderous clapping, cheering. She smiled, embarrassed, up on the stage. I had to stand to see. People all around were standing. She stopped before each of the graduating officials to receive their blessings. The audience stomped and roared. Marika stood there, astonished, surveying the scene for what seemed like forever. I clapped hard as I could. I cried.

The bleachers shook wildly when she stepped down off the stage. The rumpus continued as she headed back to her seat and was ambushed in hugs. And as the din died down, I scanned the crowd. How astounding it was to be held in the hearts of so many. I’m her Mom, I smiled through tears. Right then I knew I’d always remember the sheer glory and magnificence of that moment. What I didn’t know was how later, and forever, the memory of Marika’s graduation would stir up an ocean of pride and tears. Like it was just the other day.

 

 

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