Tag Archives: daughter with cancer

Duetting: Memoir 58

Duetting: Memoir 58 Robin Botie of Ithaca, New York witnesses her daughter's last breaths as her life support system is unplugged.

Warning: The following is an account of witnessing my daughter’s last breaths. A beautiful but very sad memory, it was important to me to include it here. But if you do not want to be faced with intense sadness you might want to simply enjoy my illustration and forego the reading this week.

As a mother preparing for my daughter’s impending death, I needed to see the beautiful life I’d brought into the world carefully wrapped up and tucked in snuggly. This was really happening. There was no stopping it, no stopping time. It was past the time for hope.

Marika’s father and I had promised her peace, that we wouldn’t fight. We had worked hard to hold things together. But on Friday, March 4, 2011, the day we were to let her go, we were both on the dark, uneven edges of our individual cliffs. We’d agreed to “have it happen” at one o’clock. But suddenly, in the middle of the morning, her father announced he couldn’t stand it any longer; it had to happen right then. His wife couldn’t bear to watch him suffer. So there we were. The time that had been ticking away was suddenly taken away.

The nurses asked us to leave. We would be called back soon to be with her for the end. Marika’s father, his wife, my son, and my friend Celia slipped quietly out the glass door. I did not. The preparations for disengagement of life support would not be pretty. But I wanted to be there anyway. I held onto Marika’s feet, and looked the nurses straight in the eyes through a blur of tears.

“I’ve been with her through everything else,” I said, trying to collect myself in between gasps, “I want to stay.” And they invited me to come closer to where Marika lay in the milky light of the overhead fixture that hummed on center stage. There, the nurses, like Disney bluebirds attending Sleeping Beauty, flitted about undressing ribbons of tubing, tying up cords, primping and preening her. They fidgeted with the monitors. Marika looked peaceful and trusting.

Are you dreaming, Mareek? I said to her, in my head. My Hurricane Marika, where’s your thunder now? You know you could tear out these lines and rip apart these bags of blood and drugs. You could throw the IV stands javelin-style through the glass walls and make torrential waves shatter and smash everything. You’re still alive.

I wrapped my hand around her forearm. The nurses checked her eyes one more time, shining a small flashlight under her lids. She had the warmest hazel eyes. It’s okay, Mareek.

It wasn’t okay. I hated hearing myself say those words. That was something I said when she didn’t win her soccer game or didn’t get the grade she’d expected on a school project. ‘It’s okay’ meant she’d get over it and things would work out better next time.

They unhooked the bags of meds draped up and down the twin IV stands, leaving only the painkillers. I watched Marika’s perfectly arched eyebrows for signs of discomfort as they swabbed and then suctioned her mouth. The monitors ticked. After weeks of constantly checking their displays, I couldn’t stop peeking at the blinking green digits.

There was no plug to pull. There was no lethal injection. It was simply a matter of removing the air that was being pumped in. First the nurses peeled the tape from her face and gently wiped the tape marks from her chin and cheeks. Then they pulled out the breathing tube that delivered air, and stuck another tube deep into her mouth to suction out her throat once more. I heard the air hissing and then sucking. The monotonous hum, ticking, and beeps of the monitors comforted me; they meant she was still here. The air tube was gone now and she breathed on her own. I inhaled and exhaled every breath with her. Keep breathing, Mareek. Breathe. Breathe.   

The others filed back in around us. Her father found the monitors too distracting, so a nurse turned them off. The screens that exhibited Marika’s life in glowing green turned dark. I felt for her pulse the way I learned as a lifeguard. Still strong.

You’re still breathing. Marika breathed seconds long enough for me to imagine her never stopping, long enough to imagine a chorus of nurses singing “mistake” and “miracle.”

How long can you keep breathing? Sweet breaths. Shallow breaths. She would not last long now.
You’re still here. I’m here. I need to focus, wake up. Watch. The now I know will be different on the other side of a blink.

Her mouth opened and took in no air this time. It closed and opened and hesitated. Her lips gently shut and opened and shut. And opened. Gently. Slowly.

Rest, Mareek. My Mareek, it’s okay. Her mouth was suspended open.
Rest. I love you. I had only her pulse. Pulse, no breathing. She was really going.

You are so beautiful. Pulse slowed.
Here. Still here. She was still here.

Here. Still.

Here.

Still.

 

Gone?

All gone?

 

Gone.

The clock said 12:28. I wanted the nurses to notice. It was 12:28 and Marika was gone.

I held her hand and stared: Lavender lined eyelids. Rosebud lips. The tiny spot that had been on her left chin forever. And I kept checking in with the clock, watching time fall away. March 4, 2011, 12:28 pm vanished. Just dropped off the planet. Overtaken by 12:29, and then 12:30. Wishing the whole world would end, I watched as the part of me that could sing and fly disappeared into nowhere. I waited. Like time might suddenly rewind. But wherever Marika was, her body was empty. She’d abandoned it. Some essence, some energy, was no longer there. This was not her. This was just her house. Her beautiful house with its scuffed walls and once-bright windows through which once emanated sweet songs. And sometimes thunder.

I hope there was light, Mareek. I hope you saw light. 

Please, whoever or whatever you are out there—God? —please don’t deprive her of the light.

 

 

Duetting: Memoir 57

Duetting: Memoir 57 Robin Botie of Ithaca, New York tells her dying daughter her birth story

Mareek, I want to tell you the story of your birth, I rambled on in my head as I rubbed my dying daughter’s feet. I could not remember if I’d ever told Marika that story. This was on the third day of March 2011, shortly after I’d signed the papers to end her life. Consumed by the unfairness and all she would be losing out on, I was feeling like the worst kind of thief. I could not yet imagine my own loss, how that would feel. I’d failed her. I couldn’t tell my mother or even Laurie. There was only one day left to get close enough to death to accept it, to learn to love it. So, standing at the foot of her bed, I brought up the memory of when she was born, and then I tried to convince myself of everything I’d ever heard about death: Death means freedom from pain. Death is a transition, not an end. Our dying begins the moment we take our first breath so death is simply the last part of life.

Many rave about watching a birth, welcoming oncoming life that blooms from womb to world. And your birth, Mareek, was one of my most magnificent moments. But really, witnessing the exiting of life, even when walloped by sorrow, is awe-inspiring. Life, when it enters the world can be traced back to the source of the seed. But its departing is shrouded in mystery. A year and a half earlier, I had tried to watch as life evaporated from the still form of my father into nowhere. I stared, transfixed on an invisible drama, detecting only the signs of a soul having already taken flight: his just-stopped pulse and empty lifeless eyes. My father’s eyes were half open, dark black marbles that caught glints of light, even at the end. I wondered, for how long could he still see me as his mouth opened and closed, opened and closed so slightly like a dazed fish out of water gently gasping for breath? He seemed unaware he was not catching any air towards the end. He lay there calm and still while his family shook in sobs. I watched, but could not tell if the life ebbed out of him slowly or if it left as in the flick of a switch.

Where life goes in the time it takes for a heart to stop beating is an astounding mystery. Is the life locked dormant inside or does it dissipate into the negative space between those grieving? Does it escape into countless particles of dust? Are there a gazillion invisible, homeless souls freed from their earthly shells, crammed around us, hovering over the ones they loved and left behind, hoping to be reborn?

Mareek, I’d named you Marika Joy before you were even conceived. Yes, I knew you were out there waiting for me somewhere. Like the crocuses that herald in the spring. I always knew I would have a daughter one day. And I’d love the warmth of your dark-haired head on my cheek. ‘Marika’ was the most beautiful, magical name I’d ever heard. You were named after a flower, a Twelve Apostles Neo-Marica. A walking iris. And Joy, for your paternal grandmother, a precious life snuffed out too soon by cancer. A spark of her would live on, be reborn with you. Yeah. Too bad we couldn’t have erased the cancer genes from those sparks of Grandma Joy’s.

You were late, Mareek. You were supposed to arrive in April, the month of your father’s and my birthdays. You were taking your time but Doctor Kyong wanted to go on his vacation. So he had me choose a day in May from three convenient dates. I was embarrassed by this as all my pregnant friends were having natural childbirth with no interventions, no drugs. Back then childbearing was like being in some sort of Amazon birthing marathon, but being ten years older than everyone else, I had to comply with a different set of rules, or lose my adored doctor.

I chose May third. Three letters each in May and Joy. And so, early in the morning on May 3, 1990, your father and I arrived at the hospital after leaving friends in charge of your brother, our businesses, and the pets. The nurses gave me some drug, oxytocin, to induce my labor. And then an enema. But there was no progress in my dilating. We waited. And walked and waited. Wearing the special kimono-style birthing robe I’d sewn from fabric with joyful bursts of blossoms, we walked the halls of the hospital and waited all day. You were already finding ways to defy demands and doctors. There was little that was natural or unplanned except you simply were not ready, were not complying with anyone else’s agenda but your own.

I don’t remember pushing, Mareek. I don’t remember pain. I remember waiting, maybe a little impatiently, to see your face and be on our way to our great adventure together. My water was broken for me in the afternoon and then there were fierce contractions. I growled like a wild animal and hugged your father hard. They injected me with three paracervical blocks for pain relief, and finally, just at dinnertime, supported by your father, I squatted, extending one leg out like a Russian dancer. After some grunting I was cut open to make it easier for you. Then I ripped open even more. Suddenly there was a great avalanche inside me. And you tumbled out, surprised, kicking and demanding, What’s for dinner, Mom? You chomped down eagerly, nursing right away as they stitched me back up. You were purple and bruised. You were perfect. I loved you immediately. My Marika Joy. A true Taurus, my friends said. Everyone expected you to be solid and steady and strong. And stubborn. And you were.

 

 

Duetting: Memoir 50

Duetting: Memoir 50 Robin Botie 0f Ithaca, New York, photoshops an image from a dream about dying.

“It would take a miracle,” the ICU nurses said about the possibility of my daughter’s recovery. But we’d seen Marika pull off miracles before. They said, “Each day on the respirator lessens the chance of her ever getting off.” She’d been under for almost two weeks. Her lungs had not responded to the special drugs they’d ordered. So the Roc Docs used something called PEEP to force oxygen through. Then a hole developed in her right lung.

Her father and I had agreed we would allow no painful interventions, but when Marika’s right lung started to collapse, we let them shove a chest tube between her ribs. A day later, when the short-lived victory from that procedure dissipated and the left lung started to go, we allowed them to plant another tube through her left side. Nothing helped. Her lungs were shot. We continued to hope and pray past the time the doctors would have quit, pulled the plug, and sent us home.

“When you start to hear the same grim prognosis from the four different teams of doctors, it will be time to consider withdrawing life support,” our social worker said.

Withdraw life support. Is that how it was to end? Like this was an everyday procedure— you either produced a miracle, like she’d been doing for the past three years, and get wheeled out of the ICU to the unit down the hall—or you died amidst Code Blue chaos with staff shoving the family out the door before scrambling around to resuscitate and electrocute—or you got unplugged. I hugged myself, and begged my beautiful girl, “Do something, Mareek. Do something NOW.”

We’d never talked about the healthcare proxy. Armed with little more than that signed piece of paper, I did not know how to begin to guess what Marika would want. Would she want to live if she couldn’t sing or walk? If she were tethered to oxygen tanks for the rest of her life, stuck with feeding tubes forever, would she want to go on? What if she was trapped inside her head, could think but not communicate, could feel pain but not move? When it comes to considering death, people grab at every grain of hope, giving up more and more of what they once felt was important for a good life. I was grasping for anything. I’d take meager crumbs. The dregs. But what would she want? Would Marika sit, strapped to a wheelchair with an oxygen tank, living on memories, and feel life was worth living? And not fight, forever, for more?

“She wants everything possible to be done to keep her alive, unless it becomes hopeless,” Rachel said when I called to tell her I didn’t think Marika would make it. “She also told me she doesn’t want to cause more suffering for her family and friends.” Marika said that?

“We should put her on a DNR status, Do Not Resuscitate. So if her heart stops, she won’t receive chest compressions or electric shock to re-start it,” Laurie said. “That would only cause more pain from broken ribs and wouldn’t preserve the quality of her life. But don’t give up on her yet. Her blood pressure is good, her kidneys and liver are working well. Her blood cells and platelets are coming up, so the transplant is working.”
“So we just need a miracle to remedy the small matter of her blasted lungs,” I said.
“She’s been at death’s door before,” Laurie reminded me, “and has pulled out a miracle and survived.”

The Roc Docs said she was sinking. It was just a matter of time. It was not presented to us as a choice: to pull the plug or not pull the plug.
“No, not yet,” I begged on Friday when she’d been pumped by PEEP for multiple days. “Give her the weekend,” I pleaded, clinging to Marika’s feet and urging everyone to whisper, in case she could hear.

On Tuesday, the first day of March 2011, the seventeenth day on sedation, the four teams, one by one, filed in and out saying, “Sorry.” I clutched Marika’s feet and rubbed madly. I watched the life I had guarded for almost twenty-one years drift farther beyond my reach. They’d given us all the extra time they could to wish for a miracle, and over the weekend hope had ebbed away like a receding tide. A strong current was pulling me out into uncharted waters, to a place no one I knew had been before. Whose child dies before their parent? I wondered. How could this be happening?

“It’s time,” I remembered my father announcing at his end.
“It’s time,” the social worker said.
Drained and defeated, Marika’s father and I finally both agreed. I said yes, and signed the paper that said my daughter’s life was to be ended.

My bedside notebook for recording dreams caught only nightmares then: I was fished out of rushing water, dripping wet, and hauled up to the whitewashed docks above by a rope. Caught. I knew I didn’t belong there, that being there meant I’d be executed on the spot. I huddled, cold, wet and miserable, trying to make myself small on the hard dock while my captors considered me. A sympathetic one pointed to a place just above my tailbone, urging the other to shoot there, where it would be kinder. Closing my eyes, I waited for the shot to shatter my bones and end my life…. Later that day, I realized that the tailbone area was where Marika got her spinal fluids drawn and chemo injected. Maybe this was really a dream about Marika. Even in my dreams I had a hard time separating her ordeal from my own.

The second day of March was barren and gray now that we had accepted there would be no more miracles. I moved like mud. Heavy, frozen, lifeless mud. Marika’s life would be taken the next day and I had a dilemma: to tell her or not.

Even heavily sedated, she might be conscious on some level, or in and out of consciousness. But if Marika couldn’t say anything, couldn’t say goodbye or “I love you,” if she wasn’t able to express anything or even move a muscle, what would she do with this information? For the first time ever, her father and I agreed immediately on something. We did not want her just lying there, drowning in fear and anger, unable to communicate. So we whispered and tiptoed around her, holding her hands and head. I did not tell her she was going to die.

What is the bigger tragedy: losing your loved one suddenly without a chance to say goodbye? Or knowing your loved one is close to death and not talking about it? I did not know how to talk about it. So I just stood there, silently, stroking her face with my eyes.

Much later, I would find these lines crossed out, in a song in one of Marika’s journals:
“My mama strokes my hair and tells me I’ll be fine now,
‘We gonna take care of you.’ But her eyes tell me she’s hiding a lie.”

We’d had a conversation or two when she was very young, about how not saying something is like lying. So I was lying. I was not being honest anyway.

There was more. Worse. What, later, I’d give anything to be able to rewind and replay: I did not tell her, “I love you.” As she drifted farther away from me, I did not dare say it. I hadn’t said it enough. Does it mean more when you say it less? Does it mean less when you say it more? And what did it mean to my precious girl that I didn’t say it at that time?

Because if I told her then, “I love you,” she would know it was the end.

 

 

 

Duetting: Memoir 45

Duetting: Memoir 45 Robin Botie of ithaca, New York, photoshops apicture of her daughter who died of cancer on Bells Beach in Australia.

“Why would you want to go THERE?” ask two stewardesses on my flight from Sydney to Melbourne, when I question them about transportation to Geelong, the gateway city for my next destination, the Great Ocean Road.
“To scatter my daughter’s ashes,” I gush out, in tears, overwhelmed by the first bit of interest anyone has shown in me since I got to Australia. I’m also a little terrified, having no plan for getting from the Melbourne airport to Geelong to the tiny town of Torquay where I have booked a room. This is not how I like to do things, not knowing what’s next.

From the airplane to the Melbourne shuttle, two train rides, two buses, and long walks dragging my rolling luggage behind, I am making my way, inch by inch, with direction-seeking and extended waits between each step. It takes all day to get from Sydney to the remote town of Torquay on Australia’s southeast coast. This second part of my journey is filled with questions no one back home could answer. Marika’s friend Carla would only tell me the Great Ocean Road must be discovered for oneself.        

The first I’d ever heard of the Great Ocean Road was in April 2010 when, in the middle of her trip, Marika had phoned. Overjoyed to hear her voice, I was caught off guard. I thought she was homesick. I should have known better. She was calling to ask for extra money. To rent a car for a trip along the Great Ocean Road. It was “what everyone does on holiday from Melbourne.” I told her, No. So she and Carla took a bus.         

Now here I am, two years after Marika’s trip, on a V-Line regional public bus, racing along a two-lane winding road that hugs a corner of Australia’s dramatic southeastern shoreline. The road ties together one hundred fifty miles of remote coastal towns and popular resorts. Prime surfing territory. I can’t take my eyes off the teasing blue sea which one minute seems ahead of me, just beyond a stretch of beach, then disappears and is suddenly smack below as we speed along atop high cliffs. We wind by rocky gorges, rolling foothills, secluded bays, and shipwreck coasts with towering limestone formations. Built as a memorial to the fallen soldiers of World War I by the returning soldiers, and later the jobless of the Great Depression, the Great Ocean Road is one of Australia’s National Heritage Sites. Tour buses from Melbourne regularly run its length, stopping at the most dramatic spots, the stunning seascapes in Marika’s photos.

Finally arriving in Torquay at the east end of the road, in a new motel room I reconstruct the altar of photos, chocolates, and stuffed Puppy, around the box of ashes. Then, wanting to locate the trailhead before dark for the next morning’s mission of ash-scattering on Bells Beach, I question the motel’s friendly bartender. No one else is around at that moment. So he closes up shop and leads me to his car. I hop in. He’s not really a stranger, I tell myself. But I sit poised for escape anyway. He drives a short distance down a deserted road.

“Yer sure ya want to walk all the way from the motel ‘n the morning?” he asks, regarding me like I’m crazy. “It’s a long way.” I don’t want to look at him. What am I doing in this bartender’s car anyway? He keeps driving.

“Nine kilometers, that’s only like six miles. Not much elevation change. Why not?” I say with a rising cloud of doubt. He shakes his head. I must look old to him, this kid running the whole show here. A hotel, motel, gaming room, bar and bistro, all in one, the Torquay Hotel Motel is the liveliest place in this little town. Everyone including this bar-boy seems to be Marika’s age, maybe younger. “I can walk back from here, thanks,” I say once we reach the trailhead. My sense of direction flustered, I ask him, “Which way back to the motel?” just to be sure.

Back at the bar and bistro later, I borrow a knife to open the sealed box of ashes, to let Marika breathe. And to make sure I won’t be stuck way out on the beach the next day, unable to open her box without tools. It is my first time meeting her ashes. With held breath and quivering hands, I pry gently at the box. It opens easily, like she’s pushing the lid from inside. She’s a trillion tiny shards, like cool white sand on a beach at sunset. In a plastic bag. In a bewildering way she’s still beautiful. I stare at her. At what’s left.

“The internet’s crashed,” says the Hotel Motel bartender when I seek him out once more, to get online. “I’m sorry. This never happens. I’ll refund some of your money.”
“No, that’s okay,” I say, thinking I may have killed the Internet connection myself. I’d tried to google “how to scatter ashes” and the little iPad went blank. Connection disappeared. It went the way of my family and friends all during the past year whenever I’d mentioned anything about Marika or ashes. Or death.

I didn’t have much faith I could learn efficient tossing techniques online anyway. I’d simply have to stand with my back to the wind and wing it. Tossing ashes. Flinging ashes. Ashes are typically “scattered” or “spread” if not kept forever in an urn on the mantle until someday some distant young relative has to figure out what to do with them. Marika had requested her remains be “scattered in Australia, if possible,” which gives me a lot of leeway. Spreading means smearing, like what one does with peanut butter or sunblock. So I’m glad she specified scattering. It gives me more a picture of sprinkling small amounts. Either way implies a distribution over a large area or several areas, broadcasting here and there, as opposed to just dumping it all in one place. And Australia is a vast continent, almost as big as the US. Early on I decided to leave ashes in the places I knew from her photos that she’d been happy.

The next morning, I load Marika’s Ithaca Track and Field drawstring backpack with water bottles, a peanut butter and plum sandwich, and chocolate bars I’d hunted and gathered from the local grocery the evening before. I add maps, Marika’s stuffed Puppy curled into her baseball cap, and the ashes. But when I put the pack on, the box of ashes chafes at my back, giving me visions of Crusaders with heavy crosses gouging deep gashes across their backs and shoulders. I take the bag of ashes, maybe six pounds, out of the black box and gently stuff it back into the pack, leaving the box behind. With a full, heavy backpack I step out the door to a blinding sun. Quickly the bag of ashes settles into a rounded rump shape that bumps behind me as I walk a few hesitant test-steps around the parked cars. I imagine I’m carrying a life-sized Marika piggyback style. I can almost feel the swish of her heels swinging by my knees.

“Mom. Let’s go.” She kicks and nudges me in the direction of the trail. And so we’re off to Bells Beach. A long walk with a lot of weight, but all I need to do is keep on the right trail and be wary of the high tide at four-thirty the bartender had told me about.
“Oh, I’ll be done way before then,” I’d responded. Then he’d warned me to watch for the occasional big rogue wave, and I’d stifled a gulp.

Now, tall dark Norfolk pines line the beaches I pass. A long boardwalk over shallow water bounces under me as I tread the moist planks. When I reach solid ground, the landscape changes rapidly. Forest turns into scrub, and then into sandy coastline. Soon the path climbs. It becomes gravelly beneath sky that is dauntingly blue and forever. Under the hot sun, I lumber over rocks and cliffs, along crunchy red-sand footpaths, and through heathlands. Grasses, scattered trees, birds flickering in low woody bushes. Scrubland. The Surf Coast Walk twists and breaks off occasionally for lookouts. I whisper nervously to Marika’s ashes each time the trail splits. When it hangs over the shore, visions of falling from crumbling cliffs crash in my head. And I assure her—her ashes—we’re okay.

There are surfers out in the distance. A dog sits in the teeming shallows waiting for its owner. So much of surfing is waiting. You wait to be in the right place at the right time, wait for the right wave, and then fly with it. Hold on when you’re tossed, keep on top, re-find your footing when it’s lost, and then go the distance. As far as you can. And scramble back up again when you get dumped. And wait some more. It reminds me of living with cancer. Am I a cancer survivor, I wonder? Marika got wiped out by cancer, but I survived. Watching the surfers, I wonder how they don’t get completely mauled in the crashing waters.

Three hours later, I climb down several sets of wooden stairs and stare at Bells Beach, the exact spot in the photo. The photo where Marika stands smiling, holding her arms out like she’s hugging the world. Only it’s an empty landscape before me now. It’s supposed to have her centered in front of the jutting point, arms lifted outward. Glued to the spot, sweating, I wait like I’m expecting to be met by her ghost.

An Asian tourist, bogged down with heavy cameras, passes by after a while and I give him my borrowed, pocket-sized point-and-shoot to take my picture in Marika’s place as I try to duplicate her pose. When the tourist is done and walks off, I am left alone on the beach. A kick at my back tells me Marika wants out of the bag, so I remove it from my pack, open its twist tie and inch closer to the water. Fears of waves and the incoming tide clash with the realization that I need to wade into the water to release the ashes. This is what I came all this way for, I tell myself. I can’t just spill Marika’s ashes onto the sand. So I kick off my sneakers, roll up my pant-legs, and cautiously slip into the seething surf. In knee-deep water the waves barrel into my body, soaking me almost to my waist. I brace myself against the poundings and try to ignore the stirrings in my head, “Don’t go out too far” and “Never swim alone.”

 

 

 

 

 

 

 

 

 

Duetting: Memoir 43

Duetting: Memoir 43 Robin Botie of Ithaca, New York photoshops an old picture of her daughter who died of leukemia as she sang her last concert.

“We have a donor for you,” the Roc Docs announced at our meeting, like they were giving Marika a birthday gift. “He is twenty-nine years old.” Age and gender was all the information the transplant team could share about our donor.
“The transplant preparations take two weeks, and the donor is available in mid-November.” Because of her history of extreme reactions to treatments, Marika would have to stay in the hospital during the rigorous preparations. “So you’ll be admitted at the end of next week,” they said. Startled by the short notice, I must have gulped. Suddenly seven sets of eyes turned to me. Then a small voice popped up, not my own.

“I can’t,” Marika said, and the focus honed in on her. “My concert. I have to do my concert.” There was a stunned silence in the small, overstuffed room.
“Your concert? But—um, when is your concert?” one of the team finally asked.
“It’s either the 26th or 27th of November. We’re still working out the details.”
“Uh, we can see if the donor can wait,” one of the team suggested uncertainly. Leftover smiles were frozen on the faces of the doctor, the social workers, and the nurses. They eyed each other in disbelief. Then they looked at me like I should do something. I heard myself swallow. No one said to us, “We’re worried about losing our small window of opportunity” or “We might lose our donor.” If this was a bad idea, it wasn’t being made clear. They simply nodded and said they would ask the donor if he could be available at another time. So everything was put on hold. My stomach was grinding bricks.

“Are you out of your mind?” Bewildered when I told her, Laurie yelled at me over the landline back home. “Remission doesn’t wait around for you to check everything off your to-do list.” She said nothing to Marika, didn’t yell at her. But a day later, she called back to ask me, “So, what’s the new game plan?”
“The concert is on Friday, November 26th. We get admitted on Monday the 29th, and the transplant is on Monday, December 6th. Wanna come out for Thanksgiving?”
“No, but I wouldn’t miss that concert for the world,” she promised.

Thanksgiving in Ithaca is a chaotic coming and going of thousands. Evacuating students, mostly. But also friends and neighbors. The people you count on to participate in putting on a concert, or to show up. All the movement over the course of a few days makes planning an event during this time period an exercise in patience, creativity, and faith. Marika and Russ scrambled about to get a back-up singer and other musicians from people who had not yet heard their music. By the day after Thanksgiving, the night of the concert, The Nines in Collegetown was packed. I knew almost everyone there, and their mothers. Saving a seat for Laurie, I nursed a beer at a table with friends as we ate pizzas and tried to hear ourselves talk over the clamor of The Nines, known for its crowds, Blue Monday jams, and deep-dish pizzas. Our excitement and anticipation were at a peak when simultaneously, the band appeared and Laurie arrived. My eyes immediately zoned into an examination of Marika. Cute dress. When did she get that? She’s wearing the boots I gave her. She looks happy. She looks tired, like she just woke up.

Pleased with the crowd, Marika started singing “Party Jam,” a short song she and Russ wrote. Her large earrings dangled wildly as she moved to the music. In the back, Russ beat away at his drums. I was mesmerized watching my daughter doing what she dreamed about. I ordered another beer.
“Hello everyone. Welcome to the Nines,” Marika said cheerily, and went right into “Soldier,” a song she had written for her brother who was there in the crowd, recently honorably discharged from the army. She grimaced at her back-up singer who, unfamiliar with the tune, sang off key. The singer wore an old ridged washboard tied around her neck, which she struck with two drumsticks. I glanced across the room at her mother who smiled proudly at her healthy, spirited daughter.

“Don’t forget to tip those bartenders,” Marika ordered at the end of the song. “I wanna see more of you dancin’,” she yelled. The crowd cheered. The music got louder, and she danced. Then we all danced. We bumped into each other and laughed, waving our arms. It didn’t matter that we could hardly hear the songs over the percussion. This was what we’d waited for, what our lives had been put on hold for. The crowd at the Nines was crazy. The music boomed and Marika was in command. I wanted to freeze-frame the moment. She sang “Never After” and trailed off, “I am not going anywhere, I am not going anywhere, I am not going anywhere.”

Finally, with a victorious smile, finger pointing and fist punching the air, Marika shouted a song by Cake, “I want a girl with a short skirt and a lo-o-ong jacket.” A raucous finale. Just in case anyone was thinking this concert was to be her swan song. Sometimes I wonder if Marika knew it would be her last performance.

It was ending. Please don’t let it end, don’t let it be over yet, I pleaded in my head, sending a grateful prayer to whatever kind spirit might be watching my world. Cheers to Russ and all the musicians, to all the servers at The Nines, to everyone in the crowd. I shot blessings to the doctors who waited and the donor who waited.

Laurie and I walked back to the car, our Frye boots scuffing the sidewalks of late-night Collegetown. My ears still rang. In the dark streets, the dazzling streetlights were kaleidoscoped by my tears.

 

 

 

 

 

 

 

 

 

 

Duetting: Memoir 40

Duetting: Memoir 40 Robin Botie of Ithaca, New York, photoshops a scene of hugging her luggage for dear life in airport security screenings.

Traveling from Ithaca, New York, is never easy. And to travel from Ithaca to Australia can take over thirty hours if all goes well and none of the three flights is delayed or cancelled. During those thirty hours I will be offered only two small meals and a snack. During those thirty hours, unless I check my luggage or make a fast friend, I will be anchored to my bags. It feels like they’re filled with bricks. Precious gold bricks, considering the irreplaceable contents. I mean, there was no way I was going to ‘check’ my daughter’s ashes so she could ride in the cargo pit of the plane. Nor her stuffed puppy. Nor her baseball cap, nor her polar tech fleece jacket that had already gone to Australia and back with Marika two years earlier. No, I stuffed the box of ashes and everything else into my carry-ons. And now I’ll have to have to squeeze myself, with my backpack and rolling bag, into tiny airport restroom cubicles all the way to Australia. And during those thirty hours, I will fly far enough away from Ithaca on the first day of spring that my whole concept of the year and seasons will be totally rattled upon arrival in Australia on the third day of autumn.

In the Ithaca Airport waiting area I look around at my fellow travelers who are mostly engaged in tablets or smartphones that light up travel-worn faces. No one else is hugging their luggage for dear life or seems close to tears. My first flight is cancelled due to thick fog in Newark. So I am stuck in the Ithaca Airport, talking to Marika’s ashes for almost four hours. And when the new flight is delayed, there is a complete revision of the plan I’d worked on for months. It is still unclear if the newest flight will ever take off.

I hold the bulging backpack on my lap, wrapping my arms around the bulk of it the way I held my belly in the last weeks of my last pregnancy. Back then, if I was safe, Marika was safe, and being good to myself meant being good to her. Worries of cancer then were even more foreign and far away than Australia.

Marika’s first airplane ride was when she was three months old, and weighed nineteen pounds. My father had given me three hundred dollars to “go buy Gregory a toy for his birthday.” Instead, I bought airplane tickets to visit my Dad for a weekend. It was the first time I was traveling by myself with two children. Marika, who weighed only four pounds less than her just-turned-two-year-old brother, was always attached to me then. So she was along for the ride. That was decades ago. Over time we had all become veteran travelers.

Marika-in-the-box and I finally take off from Ithaca.

Traveling is not easy these post-9/11 days, but traveling with ashes is just asking for trouble. The security guard in Newark regards the sealed black box with a frown and furrowed brows. He scans my face. I hold my breath and don’t know where to look, back into his eyes or at Marika’s box. He nods in the opposite direction, “Step over there, please.”

Immediately I take out the documentation: the previously requested confirmation from the Australian Consulate, raised-seal death certificate, crematorium papers, and letter from the funeral home. Some terrorist somewhere must have tried the old box-of-ashes trick because every airport over the course of our trip has a special procedure for handling sealed boxes. Sometimes there is a particular broiler-like rack for ash boxes to get x-rayed on. Agents also run tiny laser-like flashlights over every inch. And then there are tests where they don rubber gloves and rub the box with a colorless liquid on paper that turns blue. Or doesn’t. In the Los Angeles Airport, my heart pounds and I momentarily abandon my shoes at the end of the x-ray screener when Marika and I are separated into different sections as they sonogram her box from every side. I recall a family vacation years back, just months after 9/11, when a last-minute random sampling search had targeted eleven-year-old Marika, separating her from me and her brother who had already charged ahead to board the plane. Torn between the two, I had run after her.

“It’s okay, Mareek,” I tell her ashes after the sonogram. Traveling with ashes, I have someone to talk to who shouldn’t be interfering with the plans. But she does.
“Mom, I’m starving. Pleeease. You promised,” I hear her every time we pass a Starbucks kiosk or airport sushi bar.
“Her remains,” they’d informed me at Bang’s Funeral Home, when I went to pick up the letter affirming that the box was indeed filled with ashes, “are the last physical leftovers, the flakes and chunks and chips of her bones.” Even reduced to crumbs, she’s still bossing me around. And as chunks and chips, she is heavy.

After three flights and what feels like a year later, Marika and I arrive at Sydney International Airport. Getting off the plane, I sense her excitement, especially when the security dog from Sydney Customs comes by, wagging its tail. I was sure, after all the fuss at each airport’s security station, our arrival at customs in Sydney would be the killer. But the security dog does not stop at our carry-on, now laid by my toes along the yellow line on the floor with everyone else’s belongings. The dog goes straight for the punky fat guy with the earring. It trots right by us to his stuff, which really appeals to that dog. And I swear I can feel Marika’s ashes jump for joy as it passes, “Here pup! Awwww, come ‘ere pup.” The dog ignores my precious bundle on the floor. So Sydney is the first airport out of four where my box of Marika is not subjected to swabbings, dustings, x-rays, or severe scrutiny. It took a fraction of a second to pass that canine sniff test, and now Sydney is ours without a single question. And dog-tired as I am, I quickly replicate, in the hotel room, the tiny altar I’d set up at home with her box, photos, stuffed Puppy, and chocolates. Through the hotel window, the early evening light on the harbor calls to me. Any mother and daughter would need to take a break after traveling non-stop together for almost two days. So I scurry out of the room, and right away begin my exploration of Sydney.