Caregiving

Robin Botie of Ithaca, New York, photoshops a mandala of the supermoon and trees in a kaleidoscope of tears.It was late when we got the discharge papers and I drove my friend Annette home from Cayuga Medical Center. Even my son was fast asleep by the time I pulled into my own driveway. But I was wide awake, my head pulsing with something like pride. With memories: home from the hospital. It transported me back to the times in and out of hospitals with my daughter during her almost-three years of cancer. Strong Memorial Hospital in Rochester is the place I last “left” Marika. The hospital is where I first learned I was a caregiver.

When one you love becomes sick, you become a caregiver. No references or prior experience necessary. You learn on the job. Patience. Attentiveness. Compassion. You learn to let go of what you cannot control. You learn how much there is to lose: breath, balance, mobility, independence, …hope. The certainty of being able to go home.

“When can I go home?” is what everyone asks in the hospital, sitting around waiting, watching the world pass you by while you’re stuck there. The goal is to get out. But for me, for almost three years, my whole world was right there in the hospital. Whenever I left without Marika, my heart was tethered to that place. Maybe it still is.

In the end, I did not bring my daughter home. Instead, I dragged home the heartbroken remains of who I was, and the beginnings of the person I would grow into over the next years: one who loves life and doesn’t discount it by who or how much she’s lost, but rather gauges good living by what she can put right and save.

“It feels good to be needed again, to be able to help,” I’d said, when I delivered Annette to her apartment and she thanked me like I’d given her gold. Then the waning supermoon followed me home across two hills and a valley, peeking through clouds and bare branches. It made a giant mesh of moon-shadows in my driveway. Almost midnight, everything was silent and still. Except for me. I felt like skipping. Dancing in the moonlight. And I don’t know if I was speaking to the moon, my daughter’s spirit, or God when I whispered, “Hey. I brought someone home tonight.” The moon, the branches, my pride, longing, love, and gratitude were all kaleidoscoped by my tears.

 

What makes you want to sing and dance in the moonlight at midnight?

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Making Mandalas for Healing

Robin Botie of Ithaca, New York, photoshops a healing mandala.After the election, stunned friends flew to their therapists. The TV flashed scenes of protests across the country. People all over the world were in various stages of grief: denial, anger, bargaining, depression, and acceptance. I was numb, my mind too scattered with other problems: pipes leaked under my driveway, contaminating the water system. The well pump was close to burnout. My mother’s dieffenbachia plant was in trauma. And my closet shelf, once securely screwed to the wall, had torn away and collapsed under the weight of my belongings. It felt like everything was falling apart or failing. So when a friend phoned inviting me to walk in the woods, I said, “Yes, let’s go right now.”

“It’s gonna be slow,” my friend warned. “I want to gather some things along the way to make a mandala.” She mentioned something about needing to “right the world.” Maybe she said “for healing” and “to calm spirits.” It didn’t matter what she said. It resonated. And I was desperate to escape.

In the woods, on the way to locating the creek that would be blessed with our “round symbol representing the universe in a search for completeness and self-unity,” my friend and I collected leaves, ferns, twigs, small patches of moss, and a single red berry.
“We need seeds for the mandala,” she said, something about “planting change and growth.” My previous mandala-making was mostly out of the peas and potatoes on my dinner-plate. So I kept quiet and my friend showed me how to string red and yellow leaves together, threading their stems through their papery skins. She arranged the elements while I photographed leaf veins that resembled tiny trees. She planted a feather in the middle of the masterpiece when it became apparent that I’d stepped on the berry.

Finally my friend was satisfied. She’d done her part to foster peace in the world. So we left the woods and went to my house where she screwed the shelf back into the wall and rescued the dieffenbachia plant. Maybe she said a prayer over the driveway’s leaky pipes and contaminated water too. I don’t know. But things felt a bit lighter, restored to order.Robin Botie of ithaca, New York, Photoshops a friend making a mandala for healing and peace after the election.

The next day it rained. The wind was blowing the trees bare. Unsettled as the weather, I hovered over the computer with the TV on for company. And, thinking of seeds and leaves with tiny trees reaching out to the world, I photo-shopped a mandala of my own. For “self-unity.”

 

Do you have any rituals or remedies for coping with things falling apart and failing? For things changing?

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Light at the End of a Tunnel of Grief

Robin Botie of Ithaca, New York Photoshops the light at the end of the tunnel of grief.Online grief counselors say, “Embrace your pain,” “Face the loss,” … “Make friends with the heartache.” Meanwhile, today a friend politely pointed out, “There are different patterns to get over the loss of someone” and “You need to stop all this grieving and be happy.”

I am kind of happy. Life is good, except for my daughter dying. Until this afternoon I had no idea I was particularly unhappy or stuck, lost in a forest of grief.

I see grief as a bridge or tunnel connecting each sorrow forward to peace. Grief is a journey. Maybe a long journey, as some days the tunnel seems endless. One has to walk through the tunnel, carrying the pain like it’s a small child who needs to be rocked to sleep. The ache awakens at times. Sometimes suddenly. You stumble backwards. You whimper. You wail. Then regain your footing and continue the rhythm of your step. And as you traipse on, you notice there are countless minuscule cracks of light and color in the tunnel, where joy seeps through.

If you don’t see any light at the end of the tunnel, your hope grows more slowly as you learn to maneuver in the darkness. But you love that tunnel, even only dimly lit, because it is still your connection to peace.

 

In difficult times, what has your connection to peace been?

 

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Thank You Letter

Fall flowers and a donation to Ronald McDonald House in memory of her deceased daughter inspired kindness and generosity for bereaved mother Robin Botie in Ithaca, New York.Dear Wag’in Tail Dog Grooming in Auburn, NY,

Thank you so much for your gift to Ronald McDonald House in memory of my daughter Marika Warden. I don’t believe we’ve met. I’m not even sure Marika knew you. But I’m very grateful for your donation. Unless you are another bereaved mother you probably wouldn’t understand how much it means to know that the life of your child mattered, or could make a difference somewhere. It means the world to me that five years after her death, Marika could inspire kindness and generosity.

And I’m so glad you chose to give to Ronald McDonald House. Because in the sad parting from the city where I last “left” my daughter, and in all this time since she died, I never really thanked the warm people at Ronald McDonald House and the Ronald McDonald House-Within-the-Hospital who welcomed the distraught mother standing at their doorsteps dazed and red-eyed, early on in her journey through the wilds of cancer, sobbing, “Is this for real? You mean I can sleep here and you’ll wake me if the hospital calls?”

Imagine you’ve traveled far from your home to seek treatment for your sick child. You know no one in this city. You sleep in the hospital’s uncomfortable reclining chairs, not wanting to leave your precious one alone. You eat from your child’s almost-untouched meal trays. You’re told not to use The Patient’s Bathroom, so you dash down the hall to the ladies room when you have to, and hug the sympathetic nurse who shows you the shower in a nearby slop closet. Your kid reacts to chemo so horrifically you don’t dare leave her bedside until things stabilize, and when they do you suddenly realize how tired and disheveled you’ve become. You don’t know how to begin to resuscitate yourself. And then, one day you’re offered a very affordable room close by.

First it was a room right in the hospital, a few floors down from the oncology unit. Later it was in a house a couple of blocks away. A room with a real bed and my own bathroom. Washers and driers nearby. Flowers. Meals lovingly prepared and left for whatever hour of the night I would tear myself away from my daughter. There were other mothers to talk to. Families. People like me, living in a strange city with invisible thick rubber bands tethering them to their critically ill children in the hospital, gratefully pulling themselves back and forth from their home-away-from-home, to regroup. Ronald McDonald Charities. You picked a good place to help out.

So thank you, Wag’in Tail. For your gift, for reviving my memories, for letting Marika’s story move you, and for allowing her life to still count for something. Cheers!

 

PS: Wag’in, The note Ronald McDonald House sent to inform me of your donation was what gave me the most joy this week. I don’t know your real name. But I know you are no longer a stranger.

 

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Standing Out in the Rain

Robin Botie of Ithaca, New York, photoshops rainy day walkathon of the Cancer Resource Center of the Finger Lakes.Months ago, when we were still in the middle of a drought, I had Staples print up two large vinyl banners, photos of my daughter, to be strung together and worn sandwich-board style for the Cancer Resource Center of the Finger Lakes’ Annual Walkathon. It seemed like a good idea back then. That was before I’d had time to consider how conspicuous I would be, sandwiched in bright colors, shoulders to knees. It never occurred to me that the dry spell could finally end in a three-day downpour concurrent with the October Walkathon. The banners’ colors would hold up in rain. But could I?

I didn’t stand out as much as the guy in the Tony-the-Tiger costume. I stood with him until the rain picked up and people ducked into the tents. Then I stood alone in the rain, waiting for my friend to show up. People passing by nodded with sympathetic smiles.
“Can I take your photograph?” I was asked several times.
“Yes, please. Take pictures. I’d like that,” I said, smiling into the cameras. Whoa! Was that really me? I hate being photographed. And I hate being conspicuous. It’s bad enough feeling folks’ eyes taking in “the woman who lost her daughter.” Before my loss, I’d tried hard not to stare at the one woman I knew whose child had died, as I wondered what kept her from disintegrating into millions of miserable molecules. Now I was that woman. And I was standing in the rain. Standing out. Alone. In costume.

High school girls’ teams came by. They wore tight wet jeans, soaked sneakers without socks, drenched jackets. My daughter would have fit right in. “That’s what you’re wearing in this torrential downpour?” I’d often said to her. She liked rain. She played soccer in the rain, wrote a song about rain. She even looked good wet. Whereas I was told once, coming in from the damp, I looked like a drowned rat. She’d be mortified to be seen with me now in my knee-high heavy-gauge rubber boots and clear plastic hooded raincoat.

“Oh. Marika!” her former teachers and an old friend pointed at me sandwiched in the photos. It felt good to hear my daughter’s name and have her remembered. And I realized that I wasn’t a drowned rat. I wasn’t simply a bereaved mother. Just then I was Marika. I was wearing her smiling face from shoulders to knees. And she loved being photographed. She wanted to be seen. So I shamelessly approached a small group, a young man in a tutu, and asked if they would take my picture with Tony-the-Tiger.

When my friend finally arrived and offered me space under her rainbow umbrella, I said, “No thanks. I’m completely waterproof.”

Robin Botie of Ithaca, New York, posing with friendly folks at the 2016 Annual Walkathon for the Cancer Resource Center of the Finger Lakes.

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Swan Songs

Swan Songs Robin Botie of Ithaca, New York, photoshops changing colors of fall foliage as she contemplates death as a beautiful transition rather than death as the end.Ancient legends tell us of the swan, mostly silent during its lifetime, that sings a song of great sweetness and joy in the moments before its death. A swan song.

In the fall of 2011, when doctors announced they’d found a donor and were scheduling my daughter’s stem cell transplant, she told them, “I can’t. My concert. I have to do my concert first.” Everything was put on hold until after she’d performed her songs on a crisp fall evening, to the crowd at The Nines in Collegetown. “I wanna see more of you dancin’,” she’d sung out that magical night. Later, I wondered if Marika knew it would be her last performance.

Now, every day I can, I go out hiking with friends under brilliant blue cloudless skies. In these bright days before the trees are stripped bare to the bone, I gaze at their rainbow of fall foliage. “October is more colorful than Christmas,” I tell my companions, as I gather a few perfect leaves to take home. The wind picks up, and red and yellow leaves fall gently. “It’s like watching the forest cry,” I say. The show of color is October’s glorious swan song.

Death is not the end. Death is change. Transformation. Some call it beautiful. It is a beautiful transition. Birth and death are simply two points on a continuum, the circle of life. We have been dying since the time we were born. Every minute of every day, cells in our bodies are dying. Eventually our physical bodies die completely. But our spirits are still singing somewhere. I have to believe this. I’m still hearing, “I wanna see more of you dancin’.”

Rain and colder weather are in the forecast. This may be the last warm evening until next spring. I’m on the deck singing, with my dog, a ripe pear, cheese, and a glass of Madeira. If I sing and dance and do everything like it’s my swan song, when it’s my time to transition, I will have lived my physical life with my fullest heart.

 

How does one live life to the fullest? If you were to plan out your last great act on this Earth, what would it be?

 

 

 

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