As I cared for my daughter Elizabeth during her yearlong battle with osteosarcoma, I was catapulted into an unfamiliar and frightening world where children are gravely ill and doctors spoke in a language I didn’t understand. I sat by her bedside when the doctors told Elizabeth that she had tumors in her legs, hips, spine, sternum, ribs, lungs, and skull. I was instructed about how to give my daughter infusions at night, change her medical dressings, watch for fevers, clean her central line. I wasn’t a trained nurse, but home care wasn’t provided.
During the day, I mustered all my reserves to be calm and strong, but at night I trembled with fear. The familiar ways I relied on to give me strength—swimming, walking in the woods, being with friends, attending church—couldn’t assuage my anxiety.
One night, I picked up my pen and began to write. I wrote of my shock, my trauma, and how the motherhood I had imagined had been shattered. I wrote of my eldest daughter Alex’s terror. I wrote of Elizabeth’s parting wisdom. I wrote of my broken marriage.
When writing, I felt as though I had a companion on my journey with whom I could share my hopes and fears. Years later, I realized that this silent companion was me. I had been buried alive by grief. To survive, I had to dig deep and bring forth my painful memories. In this process, I grieved, I screamed, I questioned, I sobbed. Slowly, I began to accept that while Elizabeth’s illness took her life, her brave and compassionate spirit would never die. I hope that my story will provide companionship to bereaved parents, families, and communities on their journey of grieving and healing.
I shared my story at the 2019 Partners Healthcare Patient Experience Summit. To watch my presentation, which begins at minute 21:20, click here.
I also build strength by sharing my story with organizations, like Healing Story Collaborative, that encourage people to tell and share their stories as a way to promote healing.
Witnessing Elizabeth’s daily courage and compassion also made me acutely aware of others who are suffering. In honor of Elizabeth, I am leading a journaling program with the aid of medical staff at the MassGeneral Hospital for Children. The goal is to give parents and children over 16, the opportunity to express their own stories, be valued and heard.
My husband and I live with our Goldendoodle dog near Boston. I continue to find comfort and peace while walking on woodland trails or by the sea.