Tag Archives: healing journey

Duetting: Memoir 34

Duetting: Memoir 34 Robin Botie of ithaca, New York, photoshops a party scene to illustrate her daughter's first apartment, and adds her daughter's poem about partying.

When I think of all the times I could have said No to my daughter, I am so grateful that someone reminded me to “pick my battles,” and that my intuition or just plain love got in the way of my saying No. And luckily, Marika’s will was stronger than mine.

She was moving out of the house. I was gnawing at my nails. Visions of dirt, lethal germs, and total abandonment of discipline clouded my appreciation of her excitement. But I knew how much she craved independence. Every single chance to be on her own had been foiled by leukemia. So now that she’d finally found a way to afford leaving home, I had to embrace her dream. The day after we learned there would be no transplant Marika began the move to her friend Julie’s apartment with her new dog and new hope.

She moved in slowly. Cautiously. First she moved her belongings. For weeks she hung out and partied at the apartment but did not stay overnight. Then, when she started to sleep there, she came back to the house for showers and meals. And she always returned home to do laundry. Whenever she arrived at the house, I stopped whatever I was doing. Something in me soared each time she showed up.

The apartment was a typical tumbledown Collegetown rental. As soon as I entered, I remembered my own best times in my first home away from my family. The sink and counters were filled with dirty dishes. Mountains of beer bottles and pizza boxes took up most of the kitchen floor. Doors were always open, heat on high, and lights left on no matter what the season or time of day. Dust. Mold. Mysterious odors and dark, dank narrow halls. A rust-stained bathroom sink with a constant drip and a shower that dared you to try to find a clean inch to put down your bare feet. A huge stained couch built to accommodate masses monopolized the living room. The place was begging for a party. Marika moved in and lit it up like Christmas. Plastic palm trees, blinking lights, posters. A psychedelic bedspread, magenta pillows and rugs. We shopped at Target for utensils and dishes to go with the lively décor. My housewarming gift.

The apartment had a high turnover and an ever-expanding cast of characters. One day two guys she’d never met moved in. Friends of friends would come and go, sometimes camping out on the couches, sometimes coupling, playing music, always coming back and partying. Rachel, escaping the stresses of relationships and school, hung at the apartment whenever she was home on breaks. When I visited, my eyes would focus past the people to the piles of beer bottles. Does Marika drink? Didn’t the doctors say, “no alcohol”?

I never knew who I’d run into. If I looked strange or out of place there, no one seemed to notice or care. Everyone and everything was in transition, on hold, waiting to see what was next. Hence, they called the place “Limbo.” And somehow community developed, which was just what Marika craved. I had to be happy for her. And she was a lot easier to live with now that we had separate homes. Was this what it’s like to have a grown adult daughter?

When Marika finally completed her move to Limbo, her puppy Suki became a regular resident too. Coming and going as much as anyone else, Suki was in and out of Facebook photo pages, another partygoer. If Suki could write a book it would be filled with parties, road trips, leftover pizza crusts, carloads of friends, couch-loads of friends, and her quiet adventures with me. Suki became my Sunday morning hiking partner when I discovered that Sunday morning didn’t exist for Marika and her apartment mates. Sunday mornings at Limbo were like the day after Doomsday. Bodies lay all over amidst decaying remains of Chinese take-outs. No signs of life anywhere. It soon became our regular arrangement, my rescuing Suki on Saturday afternoons before the festivities began.

“Mom, did you have dinner yet?” she would call just after I’d eaten. “Can you take Suki for the night? Do you have an extra set of measuring cups?”
“Sure, I’m in Wegmans. Do you need any— ”
“Sushi?”
“Okay, I’ll be right over.”

Her apartment was just a fifteen-minute drive from the house. I stopped by regularly to bring dinner or pick her up for our trips to Rochester. In the middle of the night I drove the empty streets across town to bring her home when she phoned she was sick. I kept my clothes out, ready for those calls at two in the morning. It was good to still be needed. There was always frozen fruit for smoothies, extra eggs, and bacon in my house for the mornings she woke up hungry at home. That was our deal: call when you need me. I never had to wait long.

 

Duetting: Memoir 12

Duetting: Memoir 12If the muskrat digging holes in the banks of our pond were to continue to bore a tunnel clear through to the other side of the earth, it would end up in the Indian Ocean off the southwest coast of Australia. Marika had picked the farthest place one could go from our cozy home in the hills surrounding Ithaca. But on our first forays into the jungles of cancer, we were being carried off to a world even farther and more foreign, and there was no knowing what awaited us on the other side of it.

To me, cancer was the demise of ancient neighbors, the terrifying realm of beloved grandparents. It wasn’t supposed to happen to one’s child. Although there was Marika’s father’s brother who died at age six, of a brain tumor, over forty years before. How could my daughter have cancer? All I could think was what did I do, or not do, to cause this? Visions of all the used and refilled water bottles in Marika’s room kept haunting me. Dozens of plastic bottles on the floor, in her gym-bag. In the hot car, festering toxins. “That can’t be good for you,” I’d mentioned to her, casually, way before cancer. What kind of mother was I that I hadn’t kept my daughter safe and healthy?
“Laur, you tell Mom. Okay?” I begged my sister, as cancer moved into our lives, clobbering me with guilt. And shame. I couldn’t face my own mother.

Everything Laurie read about Marika’s type of leukemia said that once identified, it should be handled as a medical emergency. By the time it was diagnosed, Marika’s disease was already advanced. Aggressive. So after one night in our local Cayuga Medical Center we dashed up north to Strong Memorial, a teaching hospital at the University of Rochester Medical School. But before she could escape the Ithaca hospital, Marika­­­ had to undergo the cancer novice’s initiation, the bedside bone marrow biopsy.

Marika lay prone in the hospital bed, waiting for the inevitable pain. We both saw the tool. It resembled the antique hand-crank drill I inherited from my grandfather, a carpenter in the 1930s. The doctor marked a spot inches above her tailbone. He braced himself. I held Marika’s shoulders down. He drilled. She shrieked. I cried, silently beseeching him to hurry up. Her face and neck turned red. I focused on the tiny waterfall that scaled her cheek and trickled off the tip of her nose, creating a wet blotch on the sheet. I wondered how they knew I wouldn’t faint. It was taking forever. And when the longest ten minutes of our lives were over, and after the required twenty minutes to stay very still ended, Marika grabbed the nearest thing, a box of tissues, and threw it forcefully at the wall where the doctor had stood.

So by the time we got to Strong Memorial and met that week’s squad of the always-rotating oncology team, Marika was already wary of doctors. Laurie called them the Roc Docs.
“Acute promyelocytic myelogenous leukemia, or APML, has an average survival rate of eighty-five percent,” they said, “depending on complications.” They wasted no time starting an intense chemotherapy attack. Three days later Marika developed her first serious complication. “Disseminated intravascular coagulation. DIC,” the Roc Docs reported. Marika’s blood clotted inside her blood vessels but she bled from everywhere else—every orifice on her body, through every sore, through the tender spot near her tailbone, under the retinas of her eyes, and into her lungs. Always squeamish around blood, I anxiously waited for the nurses to come back with more pads as I applied pressure through soaked gauze on one of her arms. Marika cursed through a towel she held to her nose and mouth. Leaning over to push the call button, I noticed she was lying in a puddle of blood. I did not pass out. An animated movie was playing in my head. It starred my headstrong daughter’s bone marrow that had produced lots of immature unruly cells that didn’t do what they were supposed to. Like those red cells that need to carry the oxygen, and the white cells which should be fighting infections. And her impossibly undisciplined platelets that were supposed to be clotting and stopping all this bleeding. I imagined millions of tiny-legged rebellious cells sneering, careening and carousing throughout every inch of her body. And I was thinking, Marika’s a rebel—clear to the core.

In the non-patient bathroom by the elevators, regarding myself in the mirror as I washed my hands, I saw old tired eyes. My nose usually bullied other facial features for attention, but now, small shuttered eyes glared back at me in cold detachment. I sighed and turned away from the ghostly reflection. Marika had gotten all the good looks in the family. Even sick and strung out by cancer, she still looked beautiful.

It was a showdown: headstrong Marika versus aggressive cancer. The Roc Docs pumped drugs with strange names through her. Daunorubicin Hydrochloride, Cytarabine, something called ATRA that sounded like a sneeze, and something I heard as “Harass-Sea.” There were established formulas for treating this leukemia. Complying with these evidence-based approved protocols was considered the path to beating cancer. In my head the medicines blossomed into yet more cartoon characters, like Sigh-terror-bean, Cytarabine. Donna-Ruby-Sin Hydrochloride. Reactions to these chemo cocktails could be deadly. And when the ATRA almost destroyed Marika but failed to put her into remission, they gave her arsenic instead. That one I knew. In my head I saw the dead shriveled-up mouse I’d found as a kid, on top of the mail pile. “Arsenic,” my Mom had frowned at the mouse, explaining, “I forgot to leave a holiday tip for the mailman.”

Marika had horrific reactions to everything. She retched, and wrenched in pain. I winced as she threw a cupful of pills down her throat with a fast splash of water.
“How do you do that?” I asked, remembering smashing tiny aspirins in applesauce for her just a week before. She shot me a look like I had food on my face.
“Mom. I’m a cancer patient.”

 

 

 

 

The Compassionate Friends: A New Chapter in Ithaca, New York

Robin Botie of ithaca, New York, uses Photoshop and Adobe Illustrator to show a stand of trees representing the new Ithaca chapter of The Compassionate Friends, a worldwide child loss grief support group helping bereaved families grow and heal.“Pretend you’re trees. Open your arms wide like branches reaching out,” I said to the tiny group of people posing before my camera. They stood there, smiling at me, with outstretched arms. We were gathered for the first meeting of The Compassionate Friends of Ithaca, New York, a child loss support group. “Look up at the sky,” I directed, thinking they looked like children waving in the wind.

I was designing artwork for our brochure, for a Facebook page, and our new website. Since my daughter Marika died, it has not been easy to ask for assistance. It had taken me four years to even want to be part of a grief support group. So last week, when I needed people to pose, I had hesitated sending out the email, “I need help.” But now, here were these new friends of mine, swaying with arms held high like they could catch the sun. Or catch a child falling from heaven. They were eager to be helping me. I was so touched.

The Compassionate Friends is a worldwide support group for people who have lost a child or grandchild or sibling. All the people running Compassionate Friends groups are people who have lost children of all ages, from many different causes. Bereaved parents are a diverse group from all walks of life and all races. They understand what parents go through, and hold regular monthly meetings where they reach out to each other, sharing their pain and the love they have for their children. Together they grieve and heal and grow.

In Ithaca, our new TCF chapter meets the first Thursday of each month from 5:30 to 7:30 at Hospicare on 172 E King Road. If you are a bereaved parent nearby, or you know of someone who is and would benefit from opportunities to connect and learn together, I invite you to contact us at tcf.ithaca@gmail.com or (607) 387-5711.

The morning after that first TCF Ithaca meeting I came across this illustration of a stand of pine trees I’d made for a friend. Immediately I connected the picture to what I was trying to portray by lining the parents up with outstretched arms. A stand of trees is a community of trees having a definite distinguishing characteristic, a particular uniformity, which makes it stand out from other nearby trees. The Compassionate Friends is my stand. These folks “get” who I am now. In a society that puts limits on grieving, and is uncomfortable discussing death or deceased loved ones, I have found a place to go where I can still be Marika’s Mom. In this journey called life, we all just want our children’s lives to matter, to be remembered. Hence, our Credo: We need not walk alone.  We are The Compassionate Friends.

 

Do you know someone who is grieving? Are you grieving?