Beecher Grogan is the director of a nonprofit organization founded in 2006 by her daughter, Lucy Grogan. Lucy’s Love Bus delivers comfort to children with cancer through free integrative therapies such as acupuncture, massage, yoga, meditation and therapeutic horseback riding. Grogan is committed to healing the medical community and strives to educate physicians regarding the benefits of integrative therapies.
Grogan’s essay “Simple Gifts” tells the story of Lucy’s four-year struggle with leukemia and the difficulties Grogan faced in letting her daughter go. “For my twelve-year-old daughter, death was a welcome friend,” she writes. Interview conducted by Jasmine Turner.
You started a nonprofit in 2006 that offers alternative therapies to children with cancer. What has been your experience directing Lucy’s Love Bus?
My work with Lucy’s Love Bus has been my pathway back to a meaningful and joyous life after the death of my daughter. Lucy taught me so much about love, and its capacity for exponential growth. She showed me how to live with courage, grace, and humor, and how to find the silver lining in the most awful of circumstances. She taught me what children need when they are sick, suffering and frightened. People often think that working with children who are fighting cancer would be depressing. The truth is quite the opposite. Working with our children and families inspires me daily. It is a gift to be allowed into the lives of families who are fighting cancer, and incredibly rewarding to be able to offer comfort and quality of life to children who are fighting for their lives.
In your essay, you write about how difficult it can be for the parent of a sick child to interact with and understand their child’s feelings about death. What is something you’d hope someone in that position would take away from your essay?
During the four years of Lucy’s illness, we lost more than 20 of her closest hospital friends to cancer. I saw some common and recurring issues regarding end of life that were hard to witness. Each parent copes in his or her own way with their own fears about the possibility that their child might die. The journey through cancer is physically, emotionally, mentally and spiritually grueling for the patient and the caregiver. We become superstitious and start to believe that if we acknowledge the possibility of the death of our child, this thought might actually make it happen. It is especially difficult for parents to open up conversations about death and dying with their sick children, because we don’t want our children to think that we are afraid, giving up hope, or worried about the fact that they might indeed die. Children with cancer often die with very little warning due to the intensity and toxicity of their treatment. I would urge all parents of children with life threatening illness to encourage gentle and age appropriate conversations about death and dying. The only thing sadder than the death of a child is the death of a child who feels alone, terrified and worried in the moment of their death.
From our time in the hospital, and the work I have done since then with children who are approaching end of life, I have learned that children always know when they are dying. We think that we are protecting them by not talking about it, but in fact, even very young children know when they are transitioning to end of life. One little boy we knew was only 5 at the time of his death. The day before he died, he asked his mother if she could see the shapes floating on the wall. His mother asked him to draw the shapes because she couldn’t see them. He drew an hourglass and said, “See? We are running out of time.”
When a parent is not able to begin this conversation with a child who is on hospice, I offer to come visit the child. One child I worked with had privately planned her entire funeral, but never told her parents because everyone was telling her to be brave, to be positive and to continue fighting. She was brave—she was positive—and she was fighting, with all her might. But she was also quietly thinking about and absorbing her reality.
When I talk to a child about the possibility of death, I say, “You know that I love you and hope with all my heart that you will live a very long and happy life. But I also know that you are having thoughts and feelings that are frightening, and I don’t want you to feel alone. I am curious to know what’s going on inside.” This is often enough to burst the dam, and the child is at last allowed to share their incredibly heavy burden. I think that children often feel that they are the only one who knows how the story will end. To open up a conversation with one’s dying child about the reality of death is difficult. It is terribly painful. But it is also the greatest gift we can give to a dying child. We need to be as brave as our children. In doing so, we can validate their experience and share their fears, so they can feel fully loved, supported, understood, and accompanied in their last days.
I was interested by the term “living grief” that you mention in the essay. Can you elaborate on that, and how do you deal with it?
I heard the term “living grief” from a family advocate at our hospital. It resonated with me, and I think of it often as I witness our families coping with childhood cancer. It is the feeling of grieving a loved one who is still alive. It is about letting go and wrapping one’s head around the possibility of death, while also hoping and praying for survival. People don’t like to talk about this, but the brain plays awful tricks, and will flash images that are completely unwanted and terrifying. In the exhaustion that comes with long-term illness, we are particularly susceptible to these unwelcome thoughts and images. The mind is just trying to come to terms with what might eventually be a reality, but it is also clinging desperately to hope and the future. Living grief is exhausting. When Lucy was sick, I tried to go easy on myself—I tried to be as gentle, compassionate and understanding with myself as I was to my peers who struggled with the same thoughts and fears. The whole experience is surreal—in one moment we are optimistically planning our child’s wedding, in the next, we have an unbidden image of their funeral. Hope and fear wrestle with each other for dominance, and it takes a heavy toll.
What sort of difficulties did you face writing about such personal events?
The original draft came easily. The hard part was in the editing, because it meant reading and reliving Lucy’s story over and over again. That part was painful, though certainly therapeutic. In the early days of my loss, I craved the type of honesty and courage that is found in each story in this book. I searched for it, but could not find it. I needed writers who could share the blood and guts of their experience, without mincing words or glossing over the realities. I needed to know that others had faced similar loss and yet somehow survived. This book does this so beautifully, and I am grateful to be able to recommend it to others who are struggling with the death of a loved one.
At the End of Life explores how palliative care professionals treat patients and their families, for better or for worse. How do you feel about you and your daughter’s experiences with end of life care?
Tragically, Lucy’s death experience was a train wreck. I think it often comes down to luck of the draw. Lucy’s experience was very much shaped by the staff who were working that night. With the exception of one of our favorite nurses, every person involved that night was a stranger. Lucy’s death came with no warning. Technically, she was stable with strong vitals, so this caused a lot of confusion when she went into crisis.
My hope is that over time hospitals and hospice will become integrated. Right now the system is set up so that people are either in the business of living or in the business of dying. Reality is never so black and white. There are people on hospice who are still living rich and beautiful lives, and people in the hospital who are actively dying despite heroic measure to keep them alive. We like to think that we can separate the two and make it neat and tidy, but this is impossible. Had there been a hospice trained medical person on staff the night that Lucy died, I believe that her experience would have been far less painful, and would have allowed her to die with the same dignity and grace with which she lived her life.
What do you think is the role of a family member or close friend during the end of life process?
I think that the most we can do is to bear witness to the experience with gentleness, an open mind, and a willingness to bring our hearts to the process. Dying is a very private experience in that it only belongs to the dying person. It is an honor to be allowed into that profoundly private and sacred moment. I was terrified of death until I saw Lucy die. I couldn’t believe how similar the process was to birth. Having witnessed it, I am no longer afraid, and am only curious about what comes next. As much as I still grieve and long for my daughter every single day, I know for certain that she is happy and fulfilled. I feel her around me. I know that I will see her again. I felt that my role, during the hours of Lucy’s death, was simply to love her, stay close to her, advocate for her, and to honor her need to be done. I had to put aside my own needs, wishes and hopes in order to be a compassionate, generous and loving mother when she needed me most.
You mention that in the two major hospitals you spent time at, while there were support groups for parents, there weren’t any for ill children. Are there any other resources or hospital policies that you found lacking, or that you think could improve the quality of life for young patients?
There is so much attention focused on quantity of life, that quality of life becomes secondary. Most hospitals have playrooms and child life programs, which have a positive impact on quality of life for children, but there is so much more that we could be providing. Someday I hope to see integrative therapies such as massage, acupuncture, yoga and Reiki available to every child in the hospital. These services provide invaluable support to the child and relieve depression, anxiety, nausea, pain, improve circulation, appetite and sleep, and can also support a weakened immune system. I have yet to see a support group for sick children that allows them to talk about their experience. I think there is a desperate need for a place to connect and share the very real and terrifying parts that they don’t discuss with their parents. Children tend to try to protect their parents, but need a safe place to talk about the reality of their situation.
Do you think that people in hospitals are in denial about the realities of death?
I wouldn’t call it denial. I think that medical professionals are trained to fight death with every means available to them. This is their job. I imagine that it is an incredibly difficult job, and I don’t envy them the decisions they must make or the responsibility they must feel when a patient dies. In this setting, I can understand how life becomes synonymous with success, and death can only mean absolute failure. I think it becomes instinctual for physicians to fight death, no matter what the circumstances. To be fair, they are often under intense pressure from patients and family members to perform a miracle, or to continue treatment when all hope for a cure is long gone. To me, death is not failure. It is a natural and inevitable result of life. I hope that At the End of Life will help infuse this knowledge into our medical culture.
Jasmine Turner, an editorial assistant for Creative Nonfiction, is a junior at the University of Pittsburgh studying English nonfiction writing, political science and French.