Showing posts with label Living Loving and Dying. Show all posts
Showing posts with label Living Loving and Dying. Show all posts

You Who Are In My Stories


Photo by Paul Wellman

Tomorrow they will hold a memorial service for you in the beautiful grove where we celebrated your 80th birthday. I’m sad I can’t travel to hold space for you, to celebrate your life on earth with all of our friends. Some of our other friends also cannot travel to be there. And yet in the ways of our ancestors, and all things that never die, we will be there, we will all be there together holding space for you, not in flesh and blood, but of souls and songs. 

You who are in my stories, today you are making your transition, walking on. As you know, my stories are not only about me, they are also about you, and our friends whose lives are braided with mine, defining it, and shaping me. 

In my stories I've offered a measure of privacy with some name changes. But what has not changed is the love and time you gave. I’m holding the love and the gift of your time, helping me give to others. 
 
This morning the ocean is reflecting the sunlight and is shining like thousands of diamonds. My grandson and I walked for 2 miles along the sand, exploring, looking for seashells rounded smooth by the waves. It was a good day for collecting driftwood too. In my mind I brought you along with us on our walk. The bits and pieces of shells we picked up would delight you, perfect for art projects. You will be also be happy to know I’m wearing the beaded medicine pouch you made for me twenty-five years ago. So please know I am protected. If I forget to put it on in the morning I hear your voice, reminding me. Your beadwork lets me feel close to you, and reminds me of all our years and great times together, the lessons you gave, and the way you believed I could, and taught me how. 
 
Sage down, and prayer up. The sunrise singers have come for you. A high sweet trill of voices, abalone beads swaying, carrying songs from the ancestors. I'm pretty sure the sunrise ceremony now rides in my heart, and is carrying me. 
 
I love you my friend, auntie and sister. 
 
Donadagohvi. Until we meet again. 
 
Gratitude, Respect, Caring, Compassion, Honesty, Generosity, Wisdom.

Copyright © Terra Trevor. All rights reserved. 

Autumn in Dixon, New Mexico




The land and the places where I have lived have shaped me. It serves as elder and friend. I walk in its grace, feel its solace and hear the stories it tells me.

For many years my long-loved friend lived in Dixon, New Mexico. His door was always open to me. The land where he made his home by the river is an ongoing character in my life. 

 




My friend has finished his walk on earth and has crossed over to the other side. From flesh and blood to souls and songs. 

I feel the wind spilling through the red and yellow leaves, and the fine dust from this red earth on my skin, as I walk the good land of the home I carry within.

 

Photos © Santa Fe Daily Photo. All rights reserved. Reprinted with permission.

Sunrise

Voices Confronting Pediatric Brain Tumors, Johns Hopkins University Press


Visit www.nibjournal.org/news/voices.html to download this open access collection. 

My essay, Prepping for the Day You Hope Never Arrives: Facing Recurrenceis included. Page 29.

Following the release of the Voices publication it was also a great honor and sincere privilege to be invited to sit on a panel, speak and read my story at the ASBH American Society of Bioethics and Humanities Conference.

Since I've been writing and speaking in other genres and venues, and away from the pediatric brain tumor world for a number of years, I felt like the fairy godmothers must have tapped me with a magic wand, leaving me eloquent and able to speak on a tender topic far beyond my usual ability. I’m sure this must be because my fellow panelist, a beautiful and articulate young woman who is a pediatric brain tumor survivor, spoke and rode on the wings of grace and presented a paper that was far beyond excellent.

I am deeply appreciative for our outstandingly good audience, and a deep bow, many thanks, and grateful acknowledgements to the editors, to my fellow panelists, to ASBH, and Johns Hopkins University Press.

Rejecting cancer language in terms of winning, or losing the Battle

“Why do you suppose when a person dies from cancer they say he lost the battle?” My then seven year old son asked. His face was pinched with confusion. I blinked in surprise.

“Don’t worry Mom, I know dying is not about losing.” And with the zeal of a kid determined to restore order to the universe he announced, “Heaven is filled with winners.”

In 1991 my seven-year-old son faced a cancer diagnosis and received medical treatment of outstanding quality. For eight years his scans were clear and he was healthy and strong again. 

Then in 1999, at age fifteen, the tumor recurred and he received more excellent medical treatment. Still the brain tumor gained ground rapidly.

Courage, like love, requires hope to flourish. My son found his way through the stages as they came up. Having a positive attitude was important to him. As ill as he was, he gave the impression he’d outlive all of us. But suddenly his condition worsened.


Following my son's death I received stacks of cards I treasured from earnest friends. Their sweet messages almost restored my courage, yet nearly all contained the lines, "We are so sorry your son lost the fight."  

I have witness lives lived for which I call winning

The child on chemo who reassures a newly diagnosed friend with cancer that "her hair will grow back." 

The teenager who drags his IV pole from his bed to sit outside with friends. 

The young mother who allows a Hospice nurse to help her wash her hair and take a bath. 

The father, neighbor, teacher, your friends and mine facing a cancer diagnosis.

Every day ordinary people are called upon to do extraordinary things, like finding pockets of happiness, reaching deep, loving wide and living a good life in the midst of a cancer diagnosis—even when sometimes it appears life is coming to a full circle closure.

Perhaps not cancer, yet each one of us will die one day.


What I know for sure is my son and dozens of others I’ve loved who have lived long and short lives with cancer have proved we must challenge and reject cancer language and cliches that define life and death in terms of winning, or losing the battle.


First published in Candlelighters: American Childhood Cancer Foundation

Three Sections from MY LIFE

I received a long-awaited phone call from my social worker. But before I answered the phone I had one of those knowing-feelings and knew it would be the adoption agency telling me about my soon-to-be child.

Then on a crisp morning in Seoul, Korea, a wide-eyed baby was readied to leave his homeland. Dressed in a pink bunting to keep out the winter chill, one-year-old Kook Yung was carried aboard Korean Airlines, and he set off for a new life; adoption in the United States.

When the plane landed in California, Kook Yung was placed in my arms, and I felt awareness deeper than the ocean, grasping the loss his first mother endured. That boy became my son, Jay. The one who would later pick purple and yellow wild flowers for me, and bestowed me with the title of adoptive parent and the pleasure of being his mother. 

.   .   .

We had three kids. First I gave birth to our daughter and our son was placed with us as a one-year old with special needs from Korea. Then we added a third child to our family who came to us from foster care at age ten. When we decided to add more children to our family we wanted to make a difference in this life by parenting children who were already born, waiting, and needing a family. We wanted kids that were considered hard to place because deep down inside I knew adopting children who were waiting to be matched with parents was my calling in life. When I shared this with my husband he said, “I've got that same feeling.” Then we tortured ourselves by examining and delving into the myriads of types of special needs placements we wanted to pursue. We wanted a child with a special need, but we only wanted to take a small risk.

Looking back, I can see that our thinking was pretty much the same as those who claim they only want to parent a “healthy child.” We wanted to believe that it was possible to be in control of the outcome. We wanted to chart our future and to be able to map out our children’s medical conditions. But when I gave birth to my first child we were open to receiving our baby in whatever form he or she was delivered into this world with. Why then when it came to foster care or adoption did we insist on only children who would carry a medical label that felt minor and easy for us to handle?

Today if I were to bring another child into my family, I'd like to believe I would welcome the opportunity to consider all types of special needs, instead of only those requiring corrective surgery. Now I’d consider receiving a child with a host of unknowns, because the unexpected special medical need our son developed much later on, that we did not choose, which we would have given anything to avoid, has reshaped me, chiseled off my rough edges and softened me, made me better, and filled me with tender grace. But back then I was looking for a guarantee that my children would have only minor health issues.

After nearly a year of waiting, finally the call came and we received a referral for a one-year-old boy in Korea who was born with Syndactyly. His fingers on both hands were joined together, bones and all, making his hands look like small mittens. Might this child be right for our family? We wanted this child and we began to do medical research to familiarize ourselves with what this condition would mean. While we considered what might be ahead health-wise for our child to be, our good friend, Bruce, who is blind and lost his eyesight as a young adult, yet went on to become an outstanding wood craftsman and cabinet maker, kept telling us he had a strong feeling this was going to be one of those things we looked back on as no big deal, and that our little boy was going to be fine.

And when my son was placed in my arms, immediately I understood something was far beyond ordinary about him. He was calm and centered in a way that let you know he possessed a great amount of wisdom; his presence made skeptics believe in angels. 

There was something extraordinary about the trauma that surrounded Jay’s early life and how he eased his way through it. He endured the first syndactyly-release surgery when he was eighteen months old, and the process involved skin grafting, with grafts taken from the soft skin near his groin area. Every few months he underwent another surgery to separate another finger, and by the time he was five, he had ten individual fingers. Granted they were misshapen and scared. But he had fingers. Fingers that he could now stuff into gloves, or a baseball mitt, which delighted him, and he found his own way of making his new fingers work perfectly for his needs.

Turned out Bruce was right. The condition that caused Jay to be placed with us as “Special Needs” when we adopted him, turned out to be hugely unimportant. We’d managed to have an easy outcome, just like we set out to do in the beginning. It breaks my heart, however, knowing that if my son had congenital heart disease, or a host of other diagnosis, or if I had looked into my crystal ball, chances are we would have been frightened off, and might not have adopted him, causing me to miss out on having him for my son and some of the best years of my life as a mother.

The truth is before we adopted Jay I did look into my crystal ball, or rather I went to the hilltop and I got real quiet, and what I knew for certain was that if we adopted this baby, it would be wonderful, better than anything I could ever imagine, and that his life circle would be small. Within a slip of a moment I could feel my joy and pain braided together, and I knew that I was meant to take this journey. When I know something, I know. But how could I know? As a young child I discovered that often I feel things, and I know.

With my vision tucked into the recesses of my mind, for the next six years I enjoyed a blissful, wonderful motherhood, joyous beyond measure. Then suddenly ours life changed forever. I learned that 7-year-old Jay had a brain tumor. 

Following surgery, radiation, and then chemo, the cancer went into remission and the brain tumor was gone, and stayed gone for much longer than the doctors had initially predicted. Each time Jay had an MRI, the scan came back perfectly clear. He was back to snorkeling at the beach, and he looked healthy, if fragile. And on the head of a pin we delighted in eight more wonderful years, joyous beyond measure. And then the tumor came back, and Jay died at age 15.

Following my son's death, I felt the way Mt. St. Helens looked ten years after her summit was removed by a volcanic eruption. I stood under an evening sky watching the slate blue dusk blend into ragged peaks and lava domes. 

A friend once had a cabin perched on a bluff overlooking the lake, surrounded by gigantic pines, and now fireweed and purple-red flowers dotted the level earthen floor, in a place where a forest once stood. My son Jay, a pole star of my life, had passed. I knew I would never get over it. Nor would I ever be the same. And I would not give up or given in to societies mistaken notion of getting over grief. I’d find a way to learn to live with it and not allow it to hold me back. 


I walked, circling the crater, and saw wild violets blooming. The mountain had been scattered and sundered into bits, and she survived. I swallow a clotty grief deep inside my throat. A grief so wide it gives me laryngitis. Bold and enthusiastic thoughts of my son Jay filled me. 


I shuffled out into the empty field of my mind to find enough words to make it through another winter of writing. My life has changed into something I didn’t want, and I began gathering the pieces that were left of me, coaxing them back into growth, and starting again, but like the mountain I’d lost all of my big trees. 


I felt myself a part of the mountain, with hills catching the sunset through a furious wind, dust devils kicking up dirt. All my senses became alive, out on the edge. I imagined fireweed blooming on the burned over land in my heart with tiny purple petals, and it was a beginning.

That was in 1999. Like a river stone tumbling in the raging water, my grief has grown softer, and I found gold along the way, but I had to reach for it. If I had the chance to do it over again, I would choose to be Jay’s mother and take this journey again. Everyday I thank my lucky stars. Out of this has come an unimagined gift. Loving Jay with all my heart and soul, and having to let go, gives me the faith to open my arms and embrace each moment. The special need Jay came to this earth with—was to spread his love wide.

Copyright © Terra Trevor. All rights reserved. 

When a Child Dies: Living with Loss, Healing with Hope

When my fifteen-year-old son died in 1999, my plans for parenthood sat like scenery on an empty stage. He was my youngest child and I wasn’t ready to have an empty nest. I needed to come up with a new life for myself. But how could I choose my destiny when I couldn’t even buy a new sweater without exchanging it twice before deciding on a color and the right fit. I was starting my life over from scratch, and I was terrified of making decisions, even little ones. 
 
I didn’t think I would ever care about anything ever again. My mind felt glued shut, and my heart was beginning to feel like it was laminated, sealed in plastic to keep out further pain. Then I had a soul-bleaching moment when I understood that I didn’t want to stay closed up and hollow feeling forever. 

There had to be a way to allow myself the space and time to grieve deep and fully, and feel every ounce of the pain, and yet continue to walk forward. My child, a pole star in my life had passed. I would never get over it. Nor would I ever be the same. I would not give up or give in to societies mistaken notion of getting over grief fast in order to get on with my life. I would find a way to learn to live with grief and not allow it to hold me back. 

The answer came when I remembered a family vacation to the state of Washington. We went to Mt. St. Helens and my son and I stared at the way she looked years after her summit was removed by a volcano eruption. That day I stood watching the slate blue dusk blend into ragged peaks and lava domes. 

A friend once had a cabin perched on a bluff overlooking the lake, surrounded by gigantic pines. I pulled up the hood of my sweatshirt, my face strained into the wind. Fireweed and purple-red flowers dotted the level earthen floor in a place where a forest and the cabin once stood. We walked, circling the crater, and I saw wild violets blooming. The mountain had been scattered and sundered into bits, and she survived. 

I swallowed a clotty grief deep inside my throat. A grief so wide it gave me laryngitis. Bold and enthusiastic thoughts of my son filled me. I was breathing proof he was once more than a photograph. 
 
I shuffled out into the empty field of my mind to find enough words to make it through another winter of writing. Nothing quits. My life had changed into something I didn’t want, and I began gathering the pieces that were left of me, and coaxing them into growth. I was starting out again, but like the mountain, I’d lost all of my big trees. The horizon was still mine. I felt myself part of the mountain with hills catching the sunset through a furious wind, dust devils kicking up dirt. All my senses became alive, out on the edge. I imagined fireweed blooming on the burned over land in my heart, beginning purple petals.


When A Child Dies 10 Ways You Can Help
 
When a child dies you may feel helpless and ill at ease. You can help, though. Here are ten practical ways to really help a grieving parent— from one who knows. 

1. Don’t avoid us. Be the friend you’ve always been. 

2. Listen if we want to talk about it. 

3. Cry with us and don’t try to find magic words to ease our pain. 
 
4. Don’t say, “Call me if you need anything.” Most bereaved parents won’t feel strong enough to pick up the telephone. Instead offer to do something specific. 
 
5. Give special attention to and offer to take care of our other children. Siblings have not only lost a brother or sister to death, they have also lost their parents to grief. 
 
6. Remember: Grief is exhausting. Grief feels like fear. 

7. Marker events like our children’s birthday, adoption arrival day remind us our child is absent. Pay careful attention to us on Holidays. Most bereaved parents dread holidays. Follow your heart and take a leap to reach out to us because we are deeply hurting. If we say no, ask us again year after year. Eventually we will feel strong enough to say, “Yes.” 
 
8. Think twice before referring to your adopted child’s arrival as “Gotcha Day.” Gotcha takes away from a birthmother’s loss, and only focuses on an adoptive parent’s gain. And it sticks in the throat of a mother (any mother) who has lost her child, whether to death or adoption. Adopting a child is a sacred event. Better to celebrate and hold the day in awe without feeling a need to name it. The English language does not carry words powerful enough to convey what loss and gain become when they are mixed. No child should carry the burden of the UNnomymity of this mix. Parents, please claim but don’t name the day.... 
 
9. In the days and especially in years ahead share a fond memory and mention the name of the child who died in conversations as casually as you would any living friend or family member. 10. Acknowledging the date our child died by sending us a card or flowers is a wonderful way to remind us that you are remembering our child and we need not walk our grief journey alone. 

10. There is no timetable for grief. Be patient with us. We don’t recover from the death of a child, we learn to live with it, and over a process of years we begin to find a new normal.


This article was first published at EMK Press. 
Copyright © 2007 Terra Trevor. All Rights Reserved. 

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Today I am every age I ever was

Today I am every age I ever was. I am eleven riding the waves on my raft. I am 14 and 17 on my friend's surfboard, on my stomach, slicing through the surf. I am 35 swimming with my kids, with our Newfoundland dog. We hold onto her collar and she tows us to shore. And I am in my 70s now, swimming in the ocean with my grandchildren, what a wonderful day I think.

Writing, Reading and Living: Essays, Stories, and the Spaces Between

Some of my essays and stories are serious/substantial and are balanced with lighter topics. A dozen were first published decades ago. Some are new, and all have been previously published in a variety of publications. Most of all, my writing is timeless (vs timely).

Photo by Paul Wellman