Tag Archives: cancer memoir

Duetting: Memoir 68 Epilogue

Duetting: Memoir 68 Epilogue Robin Botie of Ithaca, New York, photoshops herself and her daughter who died wearing masks like they did back in the days of cancer and caregiving, and took precautions similar to those taken for the COVID pandemic.

On the tenth anniversary of Marika’s death, in the spring of 2021, I am once more about to re-enter a changed world. Gently, my dead daughter drags me from the table where I’ve been blogging and Photo-shopping for almost a decade. It awes me to consider Marika’s been dead for ten years. Dead but not completely gone, some remnant of her now coaxes me from the house and down the long rocky driveway to where it meets the highway.

At the beginning of 2020, I had wanted to be out with people more, to spend less time and energy writing. So, instead of having to come up with new material each week for my blog, I started sharing the manuscript I’d already written about our journey through the wilds of cancer. Over the course of the year I broke up the 200-page/21-chapter memoir into weekly blogs and Photo-shopped illustrations for each, “Just to keep in touch [with my readers] while I venture out to discover where life will lead me next,” I wrote in the first entry. Then, shortly after I began, the world broke out into the COVID-19 Pandemic. Life, as I knew it, ended once again. And I was stuck social-distancing at home, alone with Marika’s ghost, her dog Suki, my computer, and my manuscript. Reflecting on this difficult past year, I believe that what kept me going was the rewriting, illustrating, and sharing of our stories, with Suki and the sweet ghost of my daughter by my side.

This COVID thing. It takes me back to the days of cancer and caregiving, when Marika and I wore masks and avoided crowds, always fretting about germs. That was when I first learned to sing the birthday song twice-over while scrubbing my hands. I would scrutinize everyone we came into contact with for any signs of infection or possible contamination. Living with cancer was so lonely back then. If only we’d had Zoom. Marika would have been endlessly zooming parties from her hospital bed. Maybe I could have zoomed my son and Laurie instead of burying my head in novels so much of that time.

Because of the novel coronavirus, I haven’t seen Greg in well over a year. He texts and phones me regularly from California where he works in executive security. I am so proud of him, employed and keeping up his own apartment during these chaotic times when so many sons and daughters are struggling. “There’s always a place for you here,” I tell him, in case things change.

Laurie phones me. And sends gifts through the mail. She still practices medicine but works online at her home these days. I miss her and look forward to the day my sisters and I can all get together again in person.

And Rachel. I mean Ray. On the eve of the tenth anniversary, Ray texts me from his cozy home in Florida, “Sushi tonight,” and I text him back, “Sushi tonight and tomorrow. Wish it could be with you.” Ray is a very handsome man now. He’s worked hard to find himself and make a good alcohol-free life. Yet he readily talks about his beginnings. And when I mention the dream I recently had where he was still Rachel, he told me he sometimes dreams of himself in his old life as Rachel, as well.

My friend Liz is my COVID buddy. Throughout the pandemic we have shared meals in each other’s houses and formed a tiny safe pod to get through this time. On the morning of the tenth anniversary, we mask up and meet at Ithaca’s new Trader Joe’s where she tells me first thing, “You have to buy flowers for Marika.” Then I shop like in the old times, bringing home more than I can possibly stuff into the freezer.

Suki, my inherited dog, is eleven years old now. My constant companion during the pandemic, she’s still hiking with me several times a week in the remote hills around Ithaca. It’s eerie how Suki often stares intently out across the living room, tentatively wagging her tail as if she maybe sees the shadow of someone she once knew and loved. If Marika were to actually appear, that dog would go ballistic jumping and a-leaping, dog-kissing her and squealing in joy.

As for me, I try to be One Tough Cookie, an expression of my mom’s I adopted after she died two years ago. I don’t want people to look at me and see only the pathetic Mother Whose Daughter Died. Okay, I do now-and-then nosedive into my grief, needing to wallow in the pain. And sometimes a song or smell will trigger me into a meltdown. But most days I’m filled with gratitude. Even during these COVID times, the life I lead is one I love, is one Marika would be proud of, is one she would have loved to live herself. I am the Mother Who Swallowed Her Daughter. There’s something of her in me now that soars at each opportunity for adventure, that sings in the car on the way to and from home. I now view the world through two sets of eyes, Marika’s and mine. And I carry her with me in joy as much as in sadness. 

I’m still on the fence about religion and heaven. And angels. And where one ends up after dying. My best friend from childhood, who discovered God and became an ordained minister over the decades I lost touch with her, told me God is everything, is in everything. That works for me. To me that means God is in Marika. And that makes me less embarrassed about admitting that these days I pray mostly to Marika. That’s not meant to sound irreverent. But maybe if we all connected the people around us to God in that way, we’d end up treating each other a lot better.

It took me four years to even consider joining a grief support group. One day I became a volunteer making bereavement phone calls for Ithaca’s Hospicare and Palliative Care Services, and shortly after, I began attending a child loss support group through Hospicare. That group eventually became the Ithaca Chapter of The Compassionate Friends. TCF is a peer support community for families that have experienced the death of a child, at any age, from any cause. Through TCF, we see the many different ways to live—with and without—our children who died. A dedicated member, when I realized there were other bereaved parents having problems socializing, I organized an offshoot of our local group to gather over monthly potluck dinners at members’ homes. All these get-togethers have had to operate via Zoom during COVID. And that is how I ended Marika’s tenth anniversary day, zooming with good friends who “get me.”

In November 2017 I returned to Australia. Traveling solo again for that trip, I met up in Adelaide, Melbourne, and Sydney with other bereaved mothers I’d found and friended on Facebook. Bonds formed easily with these strangers on the other side of the planet as we shared our stories and photos. And in Sydney, after giving me a tour of the city and the university Marika was to attend, TCF New South Wales president Jenny Wandl brought me to a monthly TCF meeting before taking me to her home to cremate Marika’s stuffed Puppy in her outdoor grill. It turns out Puppy was made of polyester, not cotton. So her remains were hard black chunks rather than ashes. Which reminded me that we’re all made of tougher stuff than we think. With Jenny’s help I scattered what was left of Puppy in the rocky shallows of Sydney’s Manley Beach. Being non-biodegradable, perhaps Puppy’s remains are still floating there among the rocks.

In the winter of 2021, I got the two COVID-19 vaccinations, each time holding tight to the memory of Marika grabbing my hand whenever she got a blood draw or injection. Sometime after my second shot, I woke up early one morning having dreamed of her. But it wasn’t the dream that woke me. I heard her say, “Mom,” her voice, spoken distinctly, close to my ear as if she was standing right over me. Just the one word, “Mom.” It was almost physical, like I could feel the breath in it. In over ten years I had not heard her voice so loud or clearly. And Marika’s voice didn’t fade like most dreams fade. It kept me smiling for weeks. I can feel it still.

I don’t know what’s next for me. It’s been cozy and safe, staying close to home. But almost daily, something of Marika drags me out into the world. On the news now they’re saying vaccinated persons no longer need to wear masks. I’m still wearing mine around my neck and keep an extra in my purse, but the Marika in me is already tearing it off and applying Very Berry Lip Gloss. She tells me, “Mom, I want to eat INSIDE a restaurant,” and has me checking out menus online. With her encouragement, every day I inch out a bit further from the house in one direction or the other. No longer rolling her eyes at me, in gentle prodding she says, “Mom, get a life. It’s time.”

 

 

 

 

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Duetting: Memoir 5

Duetting: Memoir 5 Robin Botie of Ithaca, New York, photoshops an illustration for her memoir about the journey with her daughter through the wilds of cancer.Days after the calling hours, I enlist Rachel’s help to go through Marika’s belongings. Rachel wants me to meet her boyfriend. So the next week, still in a daze, I take the two of them out to dinner. Dressed up, made up, and manicured with acrylic French tips, Rachel glows, reminding me of Marika. For a moment I feel like the mother of a daughter again.

“May I see your wine list, please?” I ask the server, intending to order a bottle of wine for the table, the way I do when I go out with my girlfriends or family.
“I’ll have a Long Island Iced Tea,” Rachel says. I try to remember if that’s the drink with five different liquors. Tequila, I think. Vodka. Rum and gin and…. I’m surprised. But she’s of age, so I forget about it. Until she orders a third Iced Tea before our meal of steaks, fries, and giant chocolate chip cookie topped with ice cream is over. Does she always drink like this, I wonder? Did Marika drink like this? At that point, though, I get distracted by car talk. I sell Marika’s car to Rachel’s boyfriend.

Days later, I don’t empty the car or look to see what’s inside. The creaking sound of its door and smell of the strawberry-kiwi air freshener over the dash could release a torrent of memories. Car gone. That’s when I really know for sure Marika isn’t coming back. I spend the next three months running away as fast and as far as I can. I would have run out of my skin if I could have.

In the spring of 2011, England’s Prince William marries Kate Middleton, the Federal Government threatens to shut down, Osama bin Laden is killed, and New York legalizes same sex marriage. But I’m oblivious, racing to catch planes and scanning the crowds of fellow travelers for Marika’s face. It doesn’t matter what’s going on in the world or where I land. Finland. France. Anywhere but home. She is no longer there. The presence I felt so strongly the first days after her death dissipated shortly after I brought home her life-sized portrait and began talking to it. Maybe when I return to the house again she’ll be back. Maybe if I set her free, set her belongings free, she will come back to me. So I’m on a mission to toss Marika’s earrings and bracelets into oceans all over the earth. Does this have to make sense? Will anything make sense ever again?

Then suddenly it’s June and I’m back in the States. I wake up in my car one day, lost somewhere between my mother’s home in Western Massachusetts and my sister Laurie’s in the east. And I’m desperate to find a post office so I can mail more of Marika’s jewels to places she’d have visited. She wanted to see Greece and Ireland. She’d have loved Colorado. So I send out bits and pieces of her to friends all over the world. It offers me some vague comfort, like she is still here, like some part of her is just off traveling someplace beyond my reach.

 

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Duetting: Memoir 4

Duetting: Memoir 6 Robin Botie of Ithaca, New York, photoshops an illustration for her memoir about her life with her daughter who died.At Bang’s Funeral Home, we discuss the ashes. Her father wants them. He says he will buy a nice urn. Then he starts talking about dividing the ashes between us.
“No. Don’t split her up,” I beg. “You can keep her ashes. Whoever goes to Australia first will take them.” That’s how we leave it. I assume he and his wife will be the ones to go to Australia anyway. That’s okay. I don’t need my daughter’s ashes. I have her words.

Family members and a couple of Marika’s best friends gather in a back room at Bangs for a brief service before the calling hours begin. My friend Andrea, directress of the Montessori school my children attended, hands out DVDs of Marika singing “Over the Rainbow” at a school anniversary celebration ten months ago. When Marika was barely six, Andrea had given her the leading role in Joseph and the Amazing Technicolor Dream Coat knowing she would be able to sing the songs, if not deliver the lines. Marika went on to star in the school’s production of The Wizard of Oz, and music became an important part of her life. I hold the DVD of her return to the Montessori community as a star having conquered cancer. Marika’s friend Rachel holds a life-sized portrait of Marika. My mother and youngest sister Wendy hold Laurie, my other sister, who looks like she’s been shot. The small group is silent as I read Marika’s poem, “Atop a Mountain,” clutching the journal to keep from crying. Marika would want people to hear it, I remind myself. I must not sob her poem away.

The calling hours begin. It’s my last chance to stand up for her. To stand guard. I will be a soldier. A rock, solid to the core. Soldiers go to funerals for their fallen comrades all the time and never break down in tears, I tell myself. Or maybe they do and I’ve been turning my head. I stand with my twenty-two-year-old soldier son who is no stranger to funerals. He arranged Marika’s.

Most of the people in the procession somehow know better than to try to hug him. Greg looks lost, and brittle like he might crack if you got too close. A man of few words even during the jolliest of times, he nods, avoiding the faces, watching the floor from his six feet up. He stays by me the whole five hours. Be strong next to him, I tell myself. But my tears are nowhere near. I’m too awed by the endless crowd.

It was supposed to be only three hours. But dripping wet people keep filing in. They wait outside in the rain in a long line that winds around the block, trudges up the stairs, and circles the porch of the funeral home. Inside, they pass the hushed room where my mother and sisters sit. They enter the lively space where members of Marika’s father’s and stepmother’s families are clustered, and finally reach the inner chamber where Greg and I are stationed with the stuffed Puppy and life-sized portrait. And I can’t stop thinking how courageous all these people are, waiting to face a shell-shocked family, a soldier saying goodbye to his only sibling, and a heartbroken mother who lost half her world.

“Are you doin’ okay?” Rachel bends from her high-heeled six feet to hug me when the visitors are gone. Her eye makeup has smeared, but otherwise she looks like she’s held up.
“Tired,” I say. It’s what Marika might have said—one word to someone who cares, but doesn’t care if I don’t feel like talking.

Months after the calling hours, Bang’s Funeral Home phones me. What do I want done with Marika’s ashes? Horrified to hear she’s still at Bangs, I drop what I’m doing and fly sobbing down the hill to bring her home.
“I’ve got Marika’s ashes. I’m sorry,” I leave a message on her father’s phone. “You can have them anytime you want. But her words—she wanted to be scattered in Australia. So I can’t just leave her abandoned in Bangs’ basement.”
That’s when I make a promise—Australia. That’s when I know I’ll be the one to go.

 

 

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Duetting: Memoir 3

Duetting: Memoir 3 Robin Botie of Ithaca, New York, Photoshops an illustration for her memoir about her life with her daughter.I hold my daughter’s ponytail to my nose and sniff, then slip it back into the bag, and hurry off to the funeral home where I give it to her father.
“So you can visit her anytime you want,” I tell him.

Writing would become my way to visit my dead daughter.

But writing the story that pulverizes your whole world is like becoming a lifeguard when you’re terrified of drowning. I’ve done both though neither was ever in my plans. At the age of fifty, to afford sending my children to summer camps, I became a hiking counselor at Camp Scatico in Elizaville, New York, never expecting they would train me to be a lifeguard. Afraid of going underwater, it took all my courage to pass the part of the lifeguard test that required diving into deep water for bricks. Diving into my worst fears turned out to be good training for what was to come.

I never wanted to be a writer. The day my daughter died I sank, and then got my life handed back to me, unrecognizable, like I’d picked up someone else’s clothes at the cleaners. Then suddenly, I start writing a long letter to my daughter. Writing jolts memories. It dredges up painful debris. Alternately I sink and swim. I scramble up from great depths, cradling bricks in my arms, in search of the surface so I can breathe again. I let loose the bricks, one by one, on the pages I write.

In desperation one day, six months after I sank like a boulder dropped in water, I wanted to duet with my daughter. Too late, you can’t have a duet with a dead person. Someone who’d had her own heart broken told me this when I showed her the letter. I’d poured my heart out into that one long letter, for months, filling it with I’m-sorries, pleadings, and promises: When your tide broke, mine did too. Waves crashed over us. As they washed back out to sea, I was left alone with the sand seeping out between my grasping toes. Somehow, I am still here. So I will tell the story of our broken tides. I will cherish the words you left. Where your words and my words sit on a page together, we will have our duet.

I didn’t know about Marika’s poems until she was gone. If I couldn’t have a duet, at least I could riff off her words until I had a song of my own. So I put the poems, her side of what happened, in the telling of our journey as it unfolded. Then I responded to her words. What did I know about writing? I’m the one who drew and painted. But everything is changed now.

So I write to own what happened. She died. I let her die. To own this is to grow beyond it. I write so that someday I can look at a rainbow again or be hugged without crying my eyes bloodshot.

I write because she wrote. She left behind a brand new, otherwise empty journal with a single poem on the first page. In the bare pages that followed, Marika beckoned me to continue. No. She dared me to carry on.

And mostly I write to separate, in my mind, her story from my story. Because, before her death I was my biggest and bravest self as my daughter’s lifeguard. Before March 2011, my life was all about holding on and keeping her safe. Even as she fought to be free.

Eventually most mothers watch their children go off on their own. There are two stories as each one’s life takes its own direction. Two stories. They wend and wind. Tangling up at times. And then, unraveling. It’s not as if our two journeys were ever supposed to come out even or end up in the same place. A mother is lucky these days if her path intersects with her grown daughter’s for an occasional birthday or Thanksgiving. If a mother pines an hour or so each time her child leaves home, she is fortunate. One more countless sweet sorrow that is not forever. In a heartbeat, I’d give anything to have this be our parting rather than what we got.

Still. Separation was complicated enough before Marika died. From her earliest years on I tiptoed the tightrope between keeping her happy and keeping her safe. Regularly I’d hobble off, wounded, exhausted. But I always came bounding back. I was her least favorite person. But she—she lit up my life. Now I’m left to resolve the questions: Where is she now? Whose life am I guarding? Who am I, if not her mother? And how do I live without her?

 

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Duetting: Memoir 2

Duetting: Memoir 2 Robin Botie of Ithaca, New York, photoshops an illustration for her dead daughter's final wishes.I’m an intruder. Stalking through my daughter’s sacred and secret things. No mother should ever have to do this. It’s all upside down, inside-out. Backwards. Yet I feel my dead daughter is watching and directing my every move.

Marika hadn’t even died yet when her father began to whisper about what we should do with her remains. Scrunched together with his wife and our son Greg in a curtained-off alcove fifteen feet from Marika’s ICU bed, he said he wanted her to be buried in a cemetery near his house.

“So I can visit her.” His eyes winced wildly. I tried to contain the scowl twisting my face.

“Marika would want to be cremated and have her ashes scattered in Australia,” I said, the words flying out of my mouth even though Marika and I had never discussed this. I caught up my drooping jaw and gulped. And realized it was the first time in years I was sure of anything about her.

I was right. Days later when Marika died, Rachel, her closest friend, found her final wishes. In a shoebox under the bed, in the apartment she rented with friends, where she’d moved half her stuff, and stayed when she wasn’t sick puking or in pain.
“You should write some final wishes. Just in case,” I’d told my daughter, four months earlier, back when writing wishes was more like making a shopping list. She’d actually done something I’d asked. Now I ache to think of her sitting alone in that place, imagining herself no longer alive when these words would be found.

“In the Event of my Death,” Marika had written by hand in November 2010. The document is simple and short, like her life. “Final Wishes” is penciled in diagonally at the top, the two words flying heavenward off the page. “If I am ever in a permanent vegetative state, do not keep me alive on life support.” Then she bequeaths her personal things. First, I would get Suki, her dog. Her closest girlfriends would get “whatever clothing they desire.” She shopped for her clothes at the Salvation Army and other secondhand stores. Who would want her clothes? But I want her fake leather cowboy boots and the sweaters she never returned that I lent her, and she lent to Taylor or whomever. Her jewelry is to be divided among the girlfriends. Figuring money was what her brother would value the most of all her earthly possessions, she requested her college fund go to Greg, “If possible, … along with the bracelet he gave me from Iraq. I wore it almost every day.” To Russ, her music partner, she leaves her guitar and lyrics. Other friends, the guys, get the pipes and party paraphernalia she’d given pet names to, Cricket and Halo. And on the bottom of the second page, she had signed her name with a final request. “Marika Warden. I would like my remains to be cremated and scattered in Australia, as that is where I would be if I were alive (If possible).”

Wishes. Last wishes. Wishes on stars. Birthday wishes. I was with her on every one of her birthdays. Twenty birthday cakes. With candles. Always one extra for good luck. Her last wish—leaving her ashes in Australia, where she had intended to begin a new life, free of cancer, and me—she must have known I’d make it possible. Anything would be possible. For her.

Her father hadn’t been mentioned in the wishes. Through the black hole of the past week, he had needed to grab onto every last little thing that had been Marika’s. He can have it all, I tell myself, the next four days as I poke through her soccer trophies, beanie babies, CDs…. Then, on the fifth day, my house fills up with people. Time to go to Bangs Funeral Home.

Marika orders me to bring her stuffed Puppy, some photos, and the first journal I discovered with the one poem. Looking for a bag to carry these to Bangs, I scrounge through a closet until a perfect-sized black canvas tote surfaces. It seems to be empty as I begin to load my few items. Then I notice a small plastic bag in the bottom. I take it out and unwrap the paper towels inside. Suddenly I’m holding Marika’s ponytail. Almost dropping it, I gasp at the silky-soft honey-brown bundle still bound at one end with a rubber band. Three years ago, when it became apparent she was losing her hair with the start-up of chemo, Marika’s friends had chopped it off and shaved her head. Not quite the requisite ten inches needed to donate to Locks of Love, a nonprofit organization that makes wigs for children suffering hair loss from illness, the ponytail had been stashed away.

I hold her hair to my nose and sniff, then slip it back into the bag, and hurry off to the funeral home where I give it to her father.
“So you can visit her anytime you want,” I tell him.

 

 

REPLY TO ROBIN

Duetting: Memoir 1

Duetting: Memoir 1 Robin Botie of Ithaca, New York, uses photoshop to print and illustrate a poem written by her daughter who died.My dead daughter drags me up the stairs and into her bedroom. I thought I’d left her for good, in the hospital, in Rochester. But she walked in with me when I got home. Now, she is all over the house, excited, calling me to look, see this, find that. And she pulls me up the stairs. I don’t want to see that room. But I can’t sit still. Can’t think. Can’t eat. I want to be where she is. I want to be dead. It’s almost bedtime now and for hours I’ve resisted her luring me up here. But she wins.

Look, she says.
For what, I wonder? I scan my daughter’s room, trying not to believe she’s ninety miles north, in a bag, in the hospital’s basement refrigerator. No. Remember her here. In this room. She slept with her eye makeup on, smudged, her red painted toes peeking out from under four quilts. I’d wake her with breakfast trays—smoothies and grilled cheese sandwiches—to coax her into the morning. Now, sinking nose-down into the princess’s bed, I sniff, searching for her dwindling scent left buried in the linens. I roll over to see the room like she did. It feels like her hundred thirty-five pounds are sitting on my chest. Is she okay, I wonder? No. Nothing’s okay. I can’t keep her warm and comfortable anymore. Who am I without her? Am I still her mother? Now what? What am I supposed to do now, Marika?

Floor to ceiling, every inch and corner is filled with stuffed animals, photos, books, and memorabilia. Clothes. Papers. Nothing has been thrown out in three years. Since cancer. The room is crammed, and I am completely empty.

Look, she kicks me.
In the middle of the bookcase, a small spiral-bound notebook stands out an inch from the other books. It appears to be an unused journal. Until I pick it up and flip the pages backwards. There, on the first page, written in her most polished handwriting, is the poem above.

A wave crashes over my head. Inside me a seawall breaks. I take the poem and her stuffed Puppy to bed. The night fills with images of my almost twenty-one-year-old Marika flying over hills and mountains. And in the morning, I find myself back upstairs, haunted. Hungry for more. Another journal beckons, and then another. Rummaging through her things I find sketchbooks. Notebooks with poems and plays. Letters. When did she write all this? Songs. Diary entries. Bittersweet glimpses into her short life. And it’s like an invitation. I’ve found my daughter again. Marika’s not gone. She is upstairs in her room in a dozen different journals, in a million words, waiting for me to finally—really—get to know her.

 

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