Duetting: Memoir 9

Robin Botie of ithaca, New York, photoshops the note her daughter wrote when she received her diagnosis of leukemia.Eighteen years old. I remember when I turned eighteen. Laurie, a year younger but in the same grade, was already driving. I was not. I never liked movement, didn’t trust I could survive skating, bicycling, diving, Kiddie City Amusement Park rides … I did not dare challenge gravity. Being alone, getting lost, drowning, … going downhill in any manner or losing control terrified me. There was no major trauma in my memory, but I lived in dread of the bad things that could happen. I might fall. The ground beneath me could breach. There could be blood and it would hurt. I could die. I was afraid of it all. Nonetheless, at eighteen I had a life. Laurie and I had friends, parties, places to go. We had jobs and were getting ready to go off to college. Home was smothering. So close to freedom and independence, we counted the days ‘til we could come and go as we pleased, ‘til we graduated and got away. At eighteen, with all my trepidations, the worst thing I could imagine was being stuck with my mother. In a hospital. For months.

“Mom, I’m going on a road trip,” Marika had announced the summer before the diagnosis, shortly after she passed her driving test.
“I don’t think so,” I’d said.
“But Carla and Silvie are going.”
I called Silviana’s mom to confirm.
“Paula, did you say yes to the road trip?” She had. And I saw nothing but white-flashing warning lights. Until I heard her plan. In our mother-daughter crowd, if there were valuable lessons for our children to learn, we would creatively bypass saying no. We came up with a compromise. Silviana, Carla, and Marika took their road trip to Rehoboth Beach in Delaware, six hours away. And Paula and I followed them, in Paula’s van, three to four cars behind. We all stayed in the same hotel. We pretended we were not related. Paula and I were given the room next to our girls, unbeknownst to them. They whooped and warbled all night long. Eighteen. Free from moms. Except at dinnertime when we’d meet up in restaurants. Dinner is always the time to convene in peace, over good food. No matter where you are or whatever else is going on.

Three weeks before the diagnosis, Marika had totally disowned me. And my rules. She had a forbidden party while I was on an overnight hiking trip. Coming home to the fumes of Lysol, I roared about the horrific state of my house. I didn’t acknowledge what must have been a gargantuan effort to clean up. More worried about the house than her safety, the ordeal of her trying to contain an out-of-control situation did not occur to me.
“Mom. So what. So my friends smashed the Adirondack chairs. So they threw the stove burners into the pond. They left a few cigarette burns on the deck. Get over it!” She had told me more than once to go fall off a mountain, go drown, take a long hike and get lost. “Get a life, Mom.” Cracks of white lightning stabbed me when she spoke like that. It used to make my hair stand on end for hours, but over the last few years my neuro-receptors had worn down. By the spring of 2008, I rarely even winced at her caustic comments.

Marika didn’t always act like a brat. Like two weeks after the forbidden party, on Mothers’ Day, I arrived home from a hike to a trail of Hersheys chocolate kisses leading from the front door to all over the house.
“Mom, you hafta follow the chocolates and read the clues to find your present,” she’d said, grinning proudly. And fifty chocolate kisses later I found Caesar salad, seafood linguini, flowers, and candles on the table. And a chocolate cake. “Sorry, it’s a Wegmans cake. I didn’t bake it, didn’t wanna make a mess.”

The first morning at Cayuga Medical Center, the staff asked Marika for permission to include her parents in the discussion of her health. Surprised at this new authority, she shot me a delighted glance. Caught totally off guard myself, I dropped my jaw and glared at the doctor, shocked that in New York, at eighteen a kid is “the adult in charge.” My daughter had the right to exclude me from being involved in her medical treatment. Marika held her stuffed Puppy in the crook of her IV-laced arm as she agreed to include her parents and Laurie. It was her first medical decision as an adult. She got that one right. So there I was, and we were about to start a journey. Except for short weekend breaks when her father and his wife relieved me, I would be right there.

And I would not want to be anywhere else. Nothing could keep me away. Not her cursing and calling me names, not blood or vomit. Not the prospect of late nights on emergency car rides to some who-knows-where hospital with frantic interruptions to find a restroom. Or her angry evil eye if I said the wrong thing. In my mind I was thinking, road trip. We were taking a long road trip. Together. I knew it would not be easy or fun now that she had good reason to be cranky. But it would not last forever. And it was my last chance to be there for her. With her. Before she grew up and moved out of the house completely. This was where I wanted to be, where I had to be.

 

 

 

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Duetting: Memoir 8

Duetting: Memoir 8 Robin Botie of ithaca, New York, photoshops purple bruises big as peonies on her daughter who died of leukemia.

“Mom! Get a life!”    
Marika always said this. It was her self-preserving way to end a losing battle, a clean exit that always rendered me speechless. Rolling her eyes, she would bark, “Mom. Get. A. Life.” My just-turned-eighteen-year-old daughter enunciated each word sharply. Like four smacks to my face.

On a spring evening in May 2008, soon after we’d had one of our regular disagreements, she shoved the phone at me. It was my sister. Again. The sister who’s a doctor outside of Boston, Marika’s longtime ally and confidante. She called Laurie every time monster-mom did something disagreeable, like say No. So I was ready to hear the retelling of my latest offenses.
“Put your glasses on and look at Marika’s face,” Laurie said, with no greeting, no preamble. “You’re looking for tiny burgundy snowflakes the size of a pinhead, around her eyes maybe.” I peered closely at my daughter’s pouting teenaged face and peeked at her neck and shoulders, aware we hadn’t been on touching terms the past decade.
“Laur, those burgundy snowflakes? They’re all over her. Hundreds. Everywhere.”

Geese were nesting. Hundreds of spring peepers, tiny frog-harbingers of the season, cheeped loudly into the night. Blooming lilacs perfumed the air as irises poked through growing bursts of greening foliage. And tiny burgundy snowflakes blossomed all over Marika. Along with purple bruises, big as peonies. Amid the budding and blossoming, disaster hit home. It had chewed on Marika for who knows how long. It shot darts through her head, planted renegade cells in her blood, rooted itself and grew.

I didn’t know. The past two weeks, when Marika mentioned headaches and being tired, I thought she just didn’t want to do her homework. But that evening, when she could no longer blame soccer for her excessive bruising, and couldn’t ignore the headaches or the fatigue, she’d phoned my sister. On the phone, from over three hundred miles away, Laurie could paint a clear picture of anything. Like petecchiae, the burgundy snowflakes running rampant over Marika.
“Get to the hospital now,” Laurie said, after listening to our dozen reasons why we wouldn’t be able to see a doctor in the morning. So we dropped everything and made a mad dash to our local emergency room, where Laurie phoned in a request for tests. An hour later she called back. And then—BAM! Leukemia.

It whacked the life we knew inside out and upside down.

Everything always revolved around Marika. She had a way of using up all the oxygen and energy within a considerable radius around her. She’s the one who got picked from the audience whenever a volunteer was called for. She was the one who came home with prizes: a bottle of champagne, a huge stuffed teddy bear from a local carnival. Her fierce determination landed her jobs and favored roles in school plays. Her smile, or maybe just plain luck, got her into situations where I could only shake my head in wonder.

I fretted about how soon she would leave home for college. I savored each soccer game and every opportunity to be a part of her life as she inched farther away, fighting to be free of me. The last stretched-thin string of glue tying us together was our connection to a strong tribe of mothers and daughters who, after years of play dates and carpooling, still got together for theater, out-of-town adventures, and dinners. Paula and her daughter Silviana came over with DVDs and chocolate the first night of leukemia, when the hospital sent us home to pack our things. Overcome with fear, Marika had called them. I was surprised to find them at our door. For me, oblivious to medical crises since Laurie always handled those, it didn’t register right away that here was something to be afraid of. We stayed up watching movies with Paula and Silvie all night before we left home again to enter our new reality of hospitals, doctors, and drugs.

The next morning, at Cayuga Medical Center, a mile from our house, Marika’s friends piled onto the bed with her. Her long hair shone, her cheeks blushed. She laughed. She had played soccer just the day before having next to no platelets and fifteen times too many white blood cells. This whole mess must be a mistake, I kept thinking. But I knew Laurie didn’t make mistakes, not like this. And she was working diligently now on the phone, with us, with the hospital, with her colleagues and resources in Massachusetts. What was leukemia anyway, I wondered? Something to do with bad blood? I didn’t understand a thing about what it meant but I felt my insides steel against some vague looming catastrophe. I sat stunned, immobilized. It wasn’t until the tall, dark storm that was Marika’s father lumbered into the hospital room, that I knew this was real.

 

 

 

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Duetting: Memoir 7

Duetting: Memoir 7  Robin Botie of Ithaca, New York, photoshops a tattoo onto a photo of the face of her daughter who died.The young friends, at their own celebration of Marika’s life directly following the memorial, mull around in tight groups. They touch the photos and memorabilia. They hug and hold each other. Several had gotten tattoos to honor Marika. Images and words etched onto arms and ankles, pigment mixed with blood. Some small part of Marika could be carried forever.

As soon as she was old enough to forego parental blessings, Marika got a cookie-sized Celtic knot tattooed onto her stomach. I’d always questioned my children, “What could you possibly put on your body that you’d want to have there the rest of your life?” Horrified by the idea, I would confront them using the word ‘permanent’ as if a tattoo was a perpetual stain on one’s presence. Not that anything, loved or loathed, could ever be permanent.

In May, two months after Marika’s death, for her birthday, I had her name tattooed on my left shoulder in Celtic letters. Greg, who’d already had a good deal of himself inked with warriors and skulls in homage to his fallen army friends, added a part of Marika’s Celtic knot to his haunting skin-story. Rachel got a Marika tattoo. And Kim. Then Taylor. And Julie. Even Laurie flew to Ithaca to get one from our now almost-family tattoo artist. The thought of our hearts and bodies indelibly etched with Marika was suddenly comforting. Bereaved mothers, other than wanting their beloved children back, want nothing more than to have their child remembered. So I loved those tattooed friends.

But at the end of June, one of Marika’s friends is found dead from an overdose. Several are heavily into drugs and alcohol. Marika had fought for each summer and for every breath in the end. Even though I know addiction is not a choice, I want to grab hold of her friends’ necks and shake them.
“This is it! This is your only life. It’s a time-limited offer. Non-refundable. It is a gift,” I want to shout. “How the hell do you get to throw it away?” I think of the parents, because to lose a child is to lose the center of your world. It is to lose your light and breath. “Look at me,” I wish I could say, “It’s June and I’m still frozen mud in midwinter. Like concrete. I died too. Would you do this to your parents?”

And then there are Marika’s words. Words I can’t ignore now that I’ve found them. She wrote this before she even knew she had cancer. Before there was any doubt of her not living a long full life. What am I supposed to do with these words? They scream to me:

“My words will hopefully live on long after I am gone. That is how I want to live. Forever. Words are immortal.”

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Duetting: Memoir 6

Duetting: Memoir 6  Robin Botie 0f Ithaca, New York, photoshops a bereaved mother searching through her deceased daughter's facebook page as if it is a window to another world.One night in Massachusetts, my sister Laurie and I watch the stars. Then she takes me to Marika’s Facebook page. There we find love letters, poems, stunned friends from all over pouring their hearts out to Marika through the internet. One friend touches another through words that ripple outward, beckoning to an aunt and a mother huddled over a laptop like it’s a window to another world. Invisible webs stretch among us all. So this is what Facebook is, I think. I cast her name out into cyberspace: Marika Joy Warden, who are you and where have you been? Words radiate from my fingertips tapping on plastic. My plea rains over all the planet before waves of warmth come back to me.

On the screen, I see familiar names and photos of children I once knew, now grown. For many of them, Marika’s was their first death. For many more, it was the first death of someone their own age. A few had phoned me on her birthday and on Mothers’ Day. They are traveling or still at college. In all corners of the world, they are getting on with their lives.

I am not getting on. I want my daughter back. I will try anything to keep her close. Wear her clothes. Sleep with her stuffed Puppy, and build a nest in my bed for her real dog, Suki. Marika loved sushi, so I take Rachel out for sushi dinners. Over and over, I play the few songs Marika had recorded. Yearning to know what it’s like to sing before a crowd, and how she could keep practicing a song “until it’s right,” I sing. One song. Musician/songwriter Susan Ceili Murphy put the first poem I found of Marika’s, “Atop a Mountain,” to music. I practice until I can get through it without bawling. Then I take it to France with me and sing it under vaulted ceilings in castles and cathedrals, wherever I find an echo. I sing it over hilltops, off the top of my hotel in Nice, in a boat on the Seine. I sing it to twelve goats in a barn in the Loire Valley, as the biggest goat cocks her head and squints skeptically at me. And back in Ithaca, walking Marika’s dog at night in the driveway, I sing the song to the stars. Finally, I sing it at the memorial in the middle of June.

No one in Ithaca, other than my babies, has ever heard me sing. Setting up for the memorial at the Stewart Park Pavilion on Cayuga Lake, I test the mic with the first lines of the song. There is a sudden hush and I realize I’ve grabbed people’s attention.
“You sound just like Marika,” someone says. Pleased about this, I step before the crowd shortly after, take a deep breath, and begin “Atop a Mountain.” It will take many more months to recognize that my singing would not be the way to hold onto my daughter. But at the memorial, I follow Marika’s voice through the song, without a crack until the last note. My heart pounds as I find my seat, and scoop my inherited dog up into my lap.

Her dog. People had wanted to see Suki. So I brought her, but I’m wondering if this was a mistake. She squirms uncharacteristically. Seeing and smelling so many of Marika’s friends, Suki’s searching frantically for her shining girl. Even though I had quickly become her new girl and she’d become my shadow, waiting for me in her nest by the front door whenever I’d leave the house. Having lost one of her girls, she does what she can to keep on top of the other. My song over, I bury my tears in Suki’s fur. She whines, and looks mournfully at the friends as Rachel begins “Changed for Good,” a song from the show, Wicked. Marika had once silenced a crowd at camp with that song. And now, out of Rachel’s mouth comes perfection. Even when she starts sobbing into the mic, and then apologizes. No one blinks when Rachel sings. And then Cassie sings. And Julie sings. Songs for Marika from those of us who rarely open our mouths in public. I imagine Marika watching us from above, dumbstruck.

 

 

 

 

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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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