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 Olivia’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.
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, ‘Journals of Hope,’ with the aid of medical staff at a pediatric hospital. The goal is to give parents and children over 13, the opportunity to express their own stories, be valued and heard. To read a tribute about ‘Journals of Hope,’ click here.
My husband and I live with our Goldendoodle dog in New England. I continue to find comfort and peace while walking on woodland trails or by the sea.
