I met Lowie backstage, about an hour before my own talk earlier this month. I had butterflies in my stomach for all sorts of reasons. I’d read about him prior to arriving and perused the blog he’s written about his daughter’s cancer and his family’s journey during her life and death (you can have Google translate it into English). It was so nice to meet him.
I was really looking forward to his talk although a part of me knew I’d need to brace myself, dig fingernails deep into my legs and let my throat tighten when he started to speak. I knew his words would fill my eyes with tears.
His story detailing Guusje’s voice and needs during her cancer treatment did, of course, cause me to cry. But the images he shared also gave me great hope. Learning about his daughter’s life implored me to share his lessons. I realized we could share the beads of courage widely and put these beads in the hands of other families everywhere. You know we can learn a lot from those in the Netherlands — they did just top this list from UNICEF for child well-being for the wealthiest countries on planet Earth.
Beads of Courage
In the Netherlands when a child is diagnosed with cancer, they immediately spell out their name with beads and then chronicle their courage each and every day in order on a string. Each day of chemo, each radiation treatment, each terrible, bad day (green), and each good day gets documented, strung up in line, and valued. A ledger and journal of the courage a child maintains as they fight for life.
To me it seems obvious that these beads of courage can represent a child’s endurance, perseverance, experience, and will. A hand-held way for a child to see where they are and where they’ve been. Yet reflecting on and re-watching Lowie’s talk I realized that more, these beads can represent the wishes and life experience of a child who courageously fights for life during a chronic or life-threatening disease in a health care environment.
These beads can be a tactile acknowledgement of humanism in health care. Read full post »