Tag Archives: mother daughter relations

Duetting: Memoir 39

Duetting: Memoir 39 Robin Botie of Ithaca, New York, photoshops a poem written by her daughter who died of leukemia onto her photograph of a sea of clouds.

My story bounces around a lot. Back and forth between times. That’s because I, myself, am always straddling time, living with one foot firmly planted in the past and the other limping in the here-and-now. Time is so squirrely. It’s always getting waylaid by something catastrophic or miraculous, or just plain draining.

What am I doing? I ask myself when almost everything I do is for Marika. In the spring of 2012, I’m going to Australia to carry out her last wishes. The trip is an extravagance I would never have allowed myself. But someone was going to have to go someday, unless we would have brazenly mailed her ashes off to that Australian she loved, who never answered my emails, and let him dispose of her ashes, easy and cheap. No. In April 2012, I am still standing guard over her. Her ashes. This is part of our journey together. And for me, a journey is never simply a distance covered in time or space. It’s an opportunity to change something. It can be open-ended, intuitive, or steeped in purpose, but a journey is dependent on attitude more than intentions. Where will I allow myself to go? Can I stay open to whatever comes my way? And if something goes wrong, if “broken tides collide” like Marika wrote, will I be able to smile—one day, if not immediately—and accept that it was simply what happened? Just part of where that journey would intercept another path?

Australia was Marika’s dream for another shot at life, a life without cancer. And when my journey is over I, too, will start a new life. My life without her.

I have to keep reminding myself I will not find Marika in Australia. Not a trace of her. She was there only two weeks. When she left home, I gave her tickets and a Triple-A Travelcard loaded with three hundred dollars. I told her not to spend money on anything for me. I just wanted to know about different foods she would find. And she gave me, on her return, cookies and a postcard with a cheeky four-year-old in a superhero costume on the front. It was a government-issued advertisement for product safety she’d gotten for free.

“Mom,” she had written on the back of the card, “Always Marika, Top 5 foods from Australia to try: 1. Vegimite!! – Very salty 2. TimTams – Especially dark 3. Rosy Apple Bits – ask me for some 4. Australian style bacon – probably can’t find in US 5. Lamington slice – I couldn’t find. I need to try too!” Right there was an unfinished mission, I noted.

Then there’s her scrapbook with clippings, postcards, and brochures. And photos. Photos Laurie and I googled to match the backgrounds with images of particular places. So I could have an idea of where Marika’s feet had taken her, “which way my feet are going,” like Marika said.

She had flown to Australia alone to meet up with her lifelong friend from Ithaca, Carla, who was at school in Sydney for the year. Marika had other friends there as well. I will have no one. She’d asked for extra money to rent a car and I’d said no. So I will not allow myself to have a car there either. I will not open the box to spread her ashes until after Sydney, after one last flight five days later to Melbourne. I’ll take four full days in Sydney to calm my apprehensions, fuel my courage. I’d planned as much as I could before the trip so I wouldn’t end up immobilized by fear in hotel rooms for the whole two week trip. Yes, I’m terrified. That is why, on my last night home, I emailed twenty-two women, my Australia-Alone Support Squad:    

If you’re getting this email it is because I regard you as someone who has been strong and supportive, and I need your help now. I am on my way to Australia with Marika’s ashes. But I am not alone. I have her stuffed Puppy, my iPad, and you. It is scary but I can do this …

To Marika I wrote, in response to her poem: Marika, I am not “Flying to You.” There will be no one and nothing to greet me. I will arrive alone, tired and hungry, and scared because I will have to fend for myself as soon as the plane lands. I will not be rewarded with your smile or anyone’s open arms. Oh, to be flying to someone I love. And now, over this past year of grieving, I have found all your words, all over the house. There won’t be any more poems left to find when I get home. But while I was packing, I came across a framed drawing of a rabbit you’d made that said “Welcome Home Mom.” I put it on the mantle outside my bedroom, to be the first thing that greets me when I return from Australia.

Let the royal rumpus begin, I always say upon starting an adventure. Buckle up. We’re gonna bounce around a lot.

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Duetting: Memoir 37

Duetting: Memoir 37 Robin Botie of Ithaca, New York, photoshops a sea of highways to illustrate her fear of waves, fear of cancer, and fears of getting lost.

Long Island, New York. I knew nothing about how to navigate my way around the place of my birth. Yet every cell in my body was acutely aware I was back home. My original home. Where Marika was immediately accepted into the drug trial program at North Shore Medical Center. Insurance was going to pay for it so we were going to be stuck on Long Island for most of the summer. I followed the GPS instructions to my cousin Norm’s apartment in Woodbury, twenty minutes away. Norm was graciously giving us his guest room and the living room couch for our first weeks in treatment. We unloaded Marika’s belongings into the guest room before she took off with Rachel. I got the couch.

The girls spent as much time together as they could between Marika’s appointments and Rachel’s classes. Some days Rachel took Marika to Jones Beach, my old hangout. They wore eye make-up and dressed in little bikinis. Marika’s tiny cutoffs sat well below her navel ring. Joined by friends, they wave-surfed and picnicked with wine coolers, beer, and watermelon. They stayed up late, stargazing in Hofstra’s intramural fields where Marika sang long into the night with strangers who brought guitars. They laughed, made up lyrics, and ducked in the gully to avoid the patrolling public safety enforcers. Marika went with Rachel’s friends to a concert in Brooklyn where the tickets were sold out so they climbed over a fence to watch for free. They rollicked all over Long Island while I lay low, reading in Norm’s apartment where it was cool and quiet. Except for a noisy air conditioner. Which I kept off as much as I could stand, not wanting to hike up Norm’s electric bill. When temperatures fell below eighty, I ventured out to hike along Jericho Turnpike. It was harrowing to walk alongside moving vehicles, but I felt oddly alive being whipped by the hot blasts of their passing. I couldn’t simply sit inside all the time. Sometimes I just needed to be out under the sky, to have room to stretch.

The GPS was set to find the medical center, west of Norm’s. It was set to find Rachel at Hofstra, somewhere east. “Have GPS will travel” was my motto. When Marika went out with Rachel, I sometimes took off to find Turkish restaurants, shopping sites, and parks to walk around. Anywhere I could get an address to plug into my GPS. But on one hot afternoon, driving Marika to Rachel’s, we noticed the GPS was dying. First, the feisty female voice quit. Lindsay Lohan with barely restrained attitude stopped ordering me around, stopped badgering me, sneering, “Ree-lo-cating,” like she had to work hard not to add, “dumb bitch, you missed this turn for the fifth time.” If she had eyes, she’d have rolled them like Marika. She ditched me.

Then the map disappeared. By the time I dropped Marika off, the text of instructions had gone entirely as well. I felt abandoned. Terrified, I tried to retrace my way back to Norm’s, but I was lost. I drove on, searching desperately for something familiar. I was in a sea of highways. Wide bands of roads crammed with cars crisscrossed, curled, and tangled over and under in churning waves. Directionless, I wiped my sweaty forehead, and continued with the flow of traffic until an exit advertised a shopping mall. I turned anxiously from the highway, my first intentional move on Long Island without the guidance of a global positioning system, and found the mall’s Best Buy. A half hour later, with the new Garmin Nuvi GPS set to a charming British male voice, I was back on the road again.

Almost every town I passed on Long Island had a memory tucked away: an old boyfriend who lived in Wantagh, a factory my father once owned in Westbury, the parking lot at Roosevelt Field where our family dog died when a friend left it in a hot car. Most haunting about being back though, was the ocean. It was in the air all around me, always just beyond the crowded highways and stretches of shopping centers. It was in my blood. To be on Long Island in the summer was to feel the Atlantic Ocean and the Long Island Sound pulsing in every part of me.

Living in Ithaca, I missed the ocean. So we’d take vacations to beaches, with boogey boards and picnics. My children were fearless in the water, maybe because I’d swung them around in Cayuga Lake and in pools and ponds from early on. But I was always terrified of waves. If I went into the sea, I stood stiffly in the waves, jumping up as high as I could at each swell, keeping the kids close, ready to grab before they could be pulled under. Because as a young girl, one summer on Jones Beach, I was swept away by a wave. Not very far. But I remember being petrified, helpless under the water. The sea was way stronger than I. It was vast and violent below its surface. And it wanted to swallow me. Crying, I finally pulled myself up out of the shallow remains of the wave and looked about. I could not find my mother whose hand I’d been holding only a moment before. Salt water stung my nose and throat. All around, concerned strangers reached out to help me. But I was not supposed to talk to strangers. I was frantic. Lost. Battered by the ocean I’d loved. And where was my mother?

That trauma haunted my dreams. It gave me a tremendous respect for water. It made becoming a lifeguard the hardest thing I ever tried. And it fired a small current in me every time I watched my children in the waves. In no way could I stand the thought of Marika or her brother being lost or scared like that. In pain. In any sort of trouble, with no mother to protect them. Back on Long Island during the summer of 2010, I visited the ocean at Jones Beach only once. I didn’t have to see it more than that. It was in me.

 

 

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Duetting: Memoir 36

Duetting: Memoir 36 Robin Botie of Ithaca, New York, photoshops a maze over an old photograph of her daughter, a cancert patient, to illustrate that there was nothing simple or atraightforward after cancer struck home.

Nothing was simple or straightforward ever again after cancer hit home.

“Let’s toast to summer,” said my friends, as we clinked glasses at our first outdoor dinner of 2010. I pictured berry picking, pond swims, barbecues, and all the feasts we would cook up the next three months. In between Marika’s weekly blood draws and my search for a new teaching job, I would allow myself some time off. Marika had secured her job as boating counselor and lifeguard at the Stewart Park Day Camp. She had her apartment and her car. We both had new bathing suits. Finally, after missing the last two summers, our Best Summer Ever was about to begin. But in our lives nothing could be presumed anymore. There was no straightforward movement towards any end. I should have known better than to celebrate.        

Marika’s friend Rachel, hanging out at Limbo before leaving for summer school at Long Island’s Hofstra University, was also anticipating summer. “I just have Anatomy-Physiology to finish up and then I’m done,” she told Marika, chewing a mouthful of Australian cookies.
“Did you just eat the whole box of TimTams?” Marika chided her. With chocolate crumbs dotting her face, Rachel shook her head, licked her lips and grinned, “You should visit me on Long Island this summer.” But Marika was preoccupied inspecting the countless unaccounted-for bruises on her arms and legs. She knew what that meant.

“What is it about cancer and summer?” I asked Laurie, that night, over the landline. “It’s exactly a year after her first relapse, and that was a year after her first diagnosis. Why always summertime?” We quickly resumed our old routine where I relayed to Laurie the medical terms doctors threw at us, so she could breathe meaning into them.
“It’s the same type of leukemia,” she said.
“Laur, they told us they ran out of drugs to treat her with,” I wailed.
“Well, there’s one mega-problem with the second relapse: there are no standard forms of treatment.” I squeezed the phone as Laurie continued. “The only option is to find an experimental drug in Phase Two of its clinical trial, meaning they are ready to try the drug on significant numbers of people—I guess the mice must have lived.”

“So what’s the good news, Laur?” I asked hoping to eliminate the scenes of squirming cancerous lab mice stuck in my mind.
“She might get to keep her hair?” Laurie said, questioning herself. “You get to travel,” she added, more sure of this possibility. The Roc Docs had been consulting with colleagues in Chicago about a drug being used in Japan. They wanted to send us to Chicago, but Laurie went online and discovered clinical trials for the same drug being conducted on Long Island. In order to get a new drug, we would have to show up regularly at a cancer center. We couldn’t simply have a new box of pills mailed to us and just continue with our lives. So we were on the phone making plans to go to North Shore Medical Center in Manhasset, one town over from where I grew up.

“I hate Long Island!” Marika stated. Emphatically. I shushed her, and hunched over the phone.
“Can you come down the day after tomorrow?” Pat Li, our contact nurse at North Shore, asked. The quick responses from the clinical trial people surprised me. Did they sense our desperation to do something—anything—to be rid of cancer? Or did they need us, need more human guinea pigs? We packed half-heartedly as Marika had not yet been accepted into the program. We wouldn’t find out if she qualified until our first appointment. If she did, we would remain on Long Island for three weeks. If not, we would turn around and go home. There were too many questions either way. Like where would we stay if she qualified? And what would we do if she did not? Whether or not her father’s health insurance would cover it, I didn’t dare consider yet.
“Wifey, it’s only seven minutes from my school,” Rachel said joyfully to Marika, “You’re definitely visiting. We’ll have a blast.” Oblivious to Marika’s sentiments about Long Island, Rachel was already making plans.

“I’m not going,” Marika said on the morning of the first appointment for the clinical trials. She had slept at the house to make for an easier early morning departure. It was time to go, and I was anxious about dealing with New York City rush hour traffic, finding the medical center, and maybe being told she didn’t qualify for the trial. “I’m not going,” she said again, banging the refrigerator shut. We had at least a five-hour drive ahead of us and she was already being difficult.
“Mareek, this is our best bet to get you into remission. Our only bet.” I was sweating, and my head was beginning to hurt. “What on earth is the problem?” I was losing it. My voice got higher. Louder. “I’ll meet you in the car in ten minutes,” I said, praying things would not explode into an outright war, or worse, in her disappearing on me. I’d made breakfast and delivered the tray to her room. I’d walked her dog and driven it to family friends who would take care of it. I made Marika’s special tea with lemon and honey in a thermos for the road. So she was supposed to cooperate now.

“I. Don’t. Want. To go.”
“Okay, what do you need to have happen so that we can get moving? Because I’m getting nervous. This is not my idea of fun. Who wants to be driving to Long Island? Of all places! I thought I was done with Long Island years ago.” I was ranting uncontrollably, “And they might just send us home with nothing. And then what? You would miss our last chance for a cure because you don’t like Long Island?”
“I don’t want to talk,” she said, her tone matching mine. “I’ll go, but don’t talk to me. If I hear your voice I’ll jump out of the car.”
I opened my mouth, then caught myself and nodded instead. But she had already thrown herself into the back of the car with earphones plugging her ears, her thermos of Get Gorgeous Tea and a thick invisible wall between us. We drove in silence and got caught in morning rush hour traffic, as I knew we would.

As far back as my mind can remember there was anger every place I called home. I was attracted to it and it followed me everywhere: my childhood ranch house on Long Island, the palace on Ithaca’s West Hill, the homes by the ponds. Anger lurked in the walls and ceilings, in the carpets and closets, in every corner. It seethed in the spaces between the inhabitants. It was inherited; it was contagious. It could boil for months, sometimes seeping through the cracks before erupting completely, violently. My own small blaze was mostly suffocated in passive-aggressive smoldering. I got away with that for most of my life. And when I should have been most angry, my little fire turned to ashes. It disappeared somewhere in the sad miles and years of shuffling my young children back and forth between two simmering households. I watched the anger grow in my kids. My son eventually found it useful for survival in combat. In Marika, it came out in fierce tantrums. By the time cancer crept into our lives, my own anger had mostly dissipated in the raging storms around me. Seeing it in the eyes of the ones I loved, chilled my heart.

“Let me know if you want me to stop at this rest area,” I said, breaking four hours of silence. “I think it’s our last opportunity.”
“Don’t talk to me!” She kicked the back of my seat. For the first time I wondered, if we were to go home that day, if she might possibly be able to ride back with her father and his wife. They were already in the waiting hall of the medical building on Long Island.

Finally, we were stuffed into a small office at the medical center. More chairs were crammed in to accommodate Marika’s father and his wife. And Rachel. We had not planned on including Rachel in this meeting but everyone was grateful to have her there. With her EMT training, she was savvy about medical proceedings, and the one thing we could count on was Rachel’s ability to calm Marika. Besides, somehow she always showed up, whether or not she was invited.

Pat Li and the new doctor introduced tamibarotene, our new drug. The TammyBear-o-Teen pills were parceled out like expensive French truffles. They were to be taken mindfully, at particular times twice a day. Each dose was to be checked off and recorded in three places on various forms. The drug was ten times more potent than the ATRA Marika had taken the first two summers, the ATRA that had given her seizures and landed her in the ICU with respiratory failure. The good news was there would be fewer and less severe side effects with TammyBear-o-Teen. And Marika would not lose her hair.

“It is not a cure,” they reminded us. “A transplant is the only cure, and for that she must be in remission. This drug will get her into remission, and then she can have a stem cell transplant. As soon as possible.” I finally understood the whole plan. We could all see where we were headed. It seemed straightforward. Simple.

 

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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.

 

 

REPLY TO ROBIN

Duetting: Memoir 30

Duetting: Memoir 30 Robin Botie of Ithaca, New York, photoshops her daughter's image under photograph of a handwritten poem superimposed with a typed poem, all about waking up and starting a new life.

Summer 2009 was gone. A second whole summer pirated away by mobs of mutinous white blood cells wreaking havoc with my daughter’s body. Marika had gone under sedation in an altered mental state—as my adoring three-year-old—and at the end of August came out of it, dazed but driven. Fifty-seven days in the hospital. In oblivion, mostly.

“Mom. You’re staring.”
“Sorry. It’s just good to see your eyes open again,” I said, not daring to ask how it felt to wake up near September when she’d lost consciousness in July. Or how it was to discover her friends engrossed in new movies, new music, and new relationships. To have gone to sleep skinny, and then wake up swollen. To find a fresh growth of hair instead of her balding head. To climb to her bedroom after being gone and find things moved, to find a huge pile of mail on the bed that hadn’t been slept in except by her cat that no longer seemed to recognize her. The Rip Van Winkle and Sleeping Beauty stories don’t take into account what it feels like to wake up and find a chunk of your life gone. And I never asked Marika. But much later, I would find her journals and the poem above, Wake Up, and stand in awe of her strength and resolve to pick herself up and build a new life. And when I felt my own losses were too much to bear, I remembered her indestructible hope, and kicked myself to reset my course and carry on.

 

Marika’s Journal, September, 2009:     

            I sometimes wonder if it was all a dream. I don’t feel as sick as most people think, but the doctors still advise me to “take it easy” and “lay low,” which makes living normally and finding a job or an apartment even harder. It feels like it was all a dream until I look at my pillbox. Twice a day (usually), I extract a dose of chemicals—poisons—to heal my would-be dying body.

            My health has improved, so it’s hard to even believe that I almost died three times, or that a few months ago, my once athletic body required two nurses in order to walk. I’ve had to relearn how to walk many times now. After being sedated for weeks on end, your body forgets, and your muscles shrink. What you’re left with is a bed-ridden, weak, catheter bearing, poor excuse for a human soul, who has a long road of walkers, falls, and chipped teeth ahead of it.

            I’m much better now, but I’m not “out of the woods” yet. I may be moving into an apartment with a puppy and starting over where I left my life. It’ll be different now.

 

 

 

REPLY TO ROBIN

Duetting: Memoir 28

 

Duetting: Memoir 28 Robin Botie of Ithaca, New York, photoshops a scene of treading on shaky ground to illustrate how she feels that she has no religion.

There’s something I should have mentioned long ago: I have no religion. I mean, I don’t know if I believe in God, or in scriptures, or heaven, or in any of the various teams directing members about how to worship or who to trust. Religion, like politics, is one more thing that divides people. I don’t subscribe to any sides even though it means I’m often treading on shaky ground.

I like to imagine there’s some invisible thing out there, some entity that’s always creating, giving and taking. Watching over us all. I feel closest to this thing when I’m by an ocean or hiking in the mountains. Regularly, looking up at the stars or out across valleys into the hills, I send out grateful thanks to it. When I feel lost, this something reminds me I’m not alone. It counsels me to treat others the way I’d want to be treated, and it assures me I will never understand the ways the world works. Occasionally I beg for help or protection. And then it fades as it bids me to do my best and be strong.

In times of crisis or loss, I’ve always envied those who have faith in someone or something beyond this world. Life would be so much easier if I was chummy with God or had some indisputable doctrine to live by.

Back on the last day of June 2009, Marika’s burgundy snowflakes were all over her again. Her job as lifeguard and boating counselor at Stewart Park Day Camp was to begin the next day. It was supposed to be the summer to make up for the loss of the previous summer.

“I’m fine,” she said, dully, when I caught up with her at Strong Memorial. She’d already been put on intravenous arsenic, the standard second line treatment for her type of leukemia. “I’m bored,” she said, meaning she felt trapped and knew her summer plans were now shot. I rubbed her feet and made mental notes of what I would fetch from Wegmans.

“Have you heard anything from Jake lately?” I asked, suddenly needing to know more about the other almost-adult child with leukemia. Whenever we had a setback I’d check the status of the other players, as if we were in some sort of race to beat cancer.
“He hasn’t returned my messages,” she said, and turned away. We settled into our old established patterns for hospital confinement. But “fine” and “bored” didn’t last long.

“She didn’t eat the Cheesecake Factory takeout,” I whined to Laurie.
“Robin, she’s depressed and in pain. You don’t eat when everything between your hair and your toenails hurts.”
“And now they stopped her chemo. What does that mean? Are they giving up?”  
“That’s just temporary, until they make sure she doesn’t have an infection or pneumonia again,” she assured me. But two days later, Marika was short of breath, and the Roc Docs put her in the ICU to avoid respiratory failure, her signature crash landing. Then she did crash and was put on the ventilator once more. And as she lay there unconscious, the cascade of complications compounded. Low blood pressure. Liver malfunction. Kidney failure. Her heart developed an electrical abnormality leaving her vulnerable to lethal arrhythmias. Inefficient heart patterns. My own heart smashed into my stomach. I flailed about wildly to grasp something stable, anything that might hold me or help me find solid ground. I rubbed Marika’s feet fiercely.

A portable dialysis machine was wheeled in. It looked like a cross between an ancient refrigerator and a big old-fashioned tape recorder standing on its side. I stared at it skeptically. It hummed and churned. A wheel spun around as Marika’s blood went in and came back out. I watched the colors of the input and output to discern any differences, and asked questions of the technicians who monitored the process constantly. There was no one else to talk to. I was miserable. During dialysis, for some reason I was not permitted to rub Marika’s feet. Desperate for connection, by the end of the second week in the ICU, I left my Sleeping Beauty for a weekend at home when her father came to take over. Then, in Ithaca, I couldn’t face anyone. People said, “How’s your daughter doing? I’m praying for her,” and I didn’t know how to answer. If they were kind or tried to hug me, I broke down crying.

A cousin called to tell me a group of nuns in New Jersey were praying for Marika. Another cousin brought Marika’s name up in a service at his temple in Tucson. “We’ll keep her in our prayers,” various friends promised. I thanked them, “We need all the help we can get.” Visions flooded my head: Julie Andrews in The Sound of Music, cloistered away in an abbey of somber nuns, singing and praying in heavenly harmony. Prayers, churches, synagogues, mosques, and monasteries were all foreign to me. But if more people were uttering Marika’s name, and wishing us well, it couldn’t hurt.

Still, for me, then, the only sure solid thing in this world was my daughter. I rubbed her feet and wondered, would those nuns really pray for a girl whose mother practiced no religion?

 

 

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