Friends and family had always been an essential part of the life we shared together for 35 years of marriage. Our days were filled with activity; work, family, and planning travel adventures. We skied with friends every year, we arranged scuba diving trips with family and friends, and we traveled on extended family adventures almost every year since 1985.
“You take your children on adventure travel, but they are so young? What do you do with them in the airplane?” friends would ask. “Put their seat belts on” Randy would answer. This is what made our life so full of laughter and love.
We were having four people for dinner on Saturday, April 5th, 2008. It wasn’t a special dinner but one where Randy and I looked forward to introducing two couples to each other and enjoying not only our friends but also the making of new friends. However, for about a month he hadn’t been feeling well. We had been skiing in Tahoe with wonderful friends but, Randy felt weak so when we returned he went to the doctor. Nothing unusual was found so rest was prescribed and life continued. But that Saturday Randy said “I just don’t feel right.” He showered and off we went to the emergency room. Our “Life’s journey without maps” began.
I believe that a life’s journey without maps is one that has the best chance of leading to unique and lasting discoveries. Rather than an average journey with a defined direction it is rather a journey of “self-discovery.” It is also why our perspective of how life is to be lived changes with the ever changing path. And my perspectives were about to change radically! First, for so long I believed that a “caregiver I am not.” Mine was not a fear of dying but rather a fear that I would be responsible for the total care of someone I loved deeply. Friends, family, and yes even Randy, use to remind me that I wasn’t “Florence Nightingale.”
I recalled with laughter when a friend asked, “have you shot him yet” – referring to the fact that Randy had a cold for a few days. As for me, I am “NEVER” sick. Thus when we received the diagnosis of Glioblastoma Multiforme – better known as GBM and the most deadly, incurable form of brain cancer, all I could think of was that I could not possibly take care of him with the dedication, patience, compassion, and unconditional love that he so deserved. My greatest challenge in this journey would be to overcome this deep seeded fear.
That perspective was based on the experiences I had when I was traveling on a different life journey; a journey of life where future travels were planned, future work discussed, and future dreams of graduations, marriages, grandchildren, and retirement were possibilities. There were no maps for that journey either but we believed in living life to the fullest and striving to achieve our future dreams.
Early in April our life’s journey took a different path, and I suddenly found our two sons, 28 year old Tyler and 22 year old Brendon and I had become Soul Sitters to Randy. This new role gave our sons, our family, and our friends a totally different perspective on life. Without the support and love of our two sons, I know that this life’s journey would have included many “bumps,” “hurdles,” and “ditches” which were avoided as we came together to share with Randy – my husband and Tyler’s and Brendon’s father – the experience that this new journey would take us on. We evolved into Soul Sitting, learning one day and one moment at a time what was needed. We learned to live in the present while letting the next moments unfold.
Our home became open, in a sense that only those would experience Soul Sitting for someone so deeply loved, can ever imagine. One evening, when a friend was bringing over dinner, he politely asked, “How many people are going to be at the house?” I turned to Tyler and asked if he knew. “I just meet and great,” he said with a smile. Dinner came, people came, bread was broken, wine was shared, and we gather together with Randy who was ever so present. Others joined in to Soul Sit Randy and, in their own way perhaps, they were Soul Sitting Tyler, Brendon and me as well. Our life’s journey was shared with others and they each discovered the empowerment and encouragement that came from the experience.
Together we learned that the normal life, where one gets sick or injured and then gets better– “I feel much better today and I can get up and go to work”–was not the journey we were on. Soul Sitters must learn that each moment is measured by how little your loved one has declined from the day before. “Dad is only about 5% worse than he was yesterday, he can still manage to walk down the hall with only a little help.” Randy’s band of Soul Sitters never faltered; in fact it only grew and grew with a passion that to this day fills me with love.
Our wonderful neighbors, including 2 young children – 4 year old Ryan and 2 year old Taylor – were important members of Randy’s circle of friends. As Randy’s health declined and he was eventually forced to remain in a hospital bed, Taylor would come into the house with her mom, give me a hug and say, “I am going upstairs to hold Randy’s hand.” The image of the 2 year old little girl holding Randy’s hand still brings tears to my eyes. Randy’s band of Soul Sitters forever.
I also believed that depending on need, having Randy cared for and even die in a place other than his beautifully and passionately built home was “not a problem.” I explained to the hospice admission nurse that I did not have a deep commitment to having Randy die at home in our bed. Yet, that is exactly what happened. In the final hours, our home again was filled with Soul Sitters and in our bedroom family and friends enjoyed dinner and wine with Randy still present.
As the evening wore on, in-laws and friends drifted downstairs. In the end, Randy was in our bed surrounded in a circle of love. Our oldest son Tyler was on one side, our younger son Brendon nestled below him, each with their girlfriends cuddled closely, and me on the other side with my head, where it always was, deep within his shoulder. Peacefully Randy died, almost 2 years to the day after his diagnosis.
This “circle of love” was repeated at a tribute to his life. Over 200 people joined together at the Powerhouse Park and over 60 people paddled out beyond the surf, at our favorite beach wall – 20th Street in Del Mar – where Randy’s ashes were spread to the sea and to the heavens, his spirit remaining close to our hearts.
While I truly regret that our circumstances led us on this life’s journey – a journey with no signs, no boundaries, no maps– I am honored to have been a Soul Sitter and to have shared the unconditional joy and love achieved during this journey. I discovered that I could do things I never imagined being able to do. I discovered that through the love of family and friends one can move through any fear and overcome one’s greatest challenge.
This journey of self-discovery taught me that I need not be a single Soul Sitter and that banding together with the love of family and friends enabled me to become who I was meant to be, and a different if perhaps not better person because of it. It may not be possible for everyone, but it is wonderful when Soul Sitter is plural – “Soul Sitters.” In ways large and small I have been inspired by family and friends. I have learned the true meaning of friendship and have gained an appreciation of what it means to live life to the fullest, to strive to be our optimal best, to commit to being true to ourselves, and to continue to reach for our dreams. In a sense, this is a journey of self-discovery, one that will never end as long as it is immersed so clearly in the deepest love as this journey has been and continues to be.
As Brendon posted on FaceBook the morning after his father’s death, “When it comes to the end, all that’s important is family and friends.” That says it all and that is how I choose to live my life.
Editor’s Note: This series has been on a bit of a hiatus, but we will at least finish out the 52. It has changed from its initial purpose, but it has evolved into something powerful for each participant, I believe. I hope that everyone who has a chance to read this series brings away a sense of hope – for themselves, for their loved ones, and for a cure.