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.
Imagine if every child received a bead for each experience they endured in treatment for any disease? Imagine how caregivers and families could visually acknowledge the great journey. What if every injection we gave came with a documentation of the courage it took to take the needle?
Lowie and Yvonne van Gorp shared Guusje’s beads of courage with me after the talk. The meters of beads were heavier than I expected and more beautiful, too. With two of Guusje’s siblings and her 2 parents gathered around, I heard them repeatedly effuse about Guusje’s immense pride for her beads during her 7 month journey with cancer. It was obvious that all four of them carried with them a great sense of honor, these beads an emblematic string of their love.
Beads of courage can remind us the import of childishness in health care. For children, a need for a strong voice in decision-making, a need for school, for moments of creativity, mindfulness, and play each and every day. These beads can be more valuable than their weight in gold.
Listen to Lowie in this 8-minute talk as he details his experience with Guusje’s diagnosis, cancer treatment, and courage. Share with me ways that we can get these beads to be considered the standard of care here in the US. Let’s really increase well-being for us all.
Do you know any hospitals that start the beads of courage like they do in the Netherlands?