Guest Blog Post – Hair Loss: One Bead’s Story
Submitted by Bead Mom Lindsey …
It took twenty days from diagnosis for my three-year-old daughter to lose her hair. The golden strands I watched her twirl between her sweet toddler fingers was now clumping into knots and itching her skin as it stuck to her sick body.
Adaleigh had been diagnosed with Acute Lymphoblastic Leukemia B-Cell (ALL) on August 13, 2019 after a suspicious looking ear infection landed us in the emergency room. Digesting the news was hard and her super-hero oncologist explained to us that among a myriad of other side effects of treatment, she would lose her hair in just a few weeks.
From a mom’s perspective, things had moved so quickly for our energetic-silly Addie, who spent her days twirling in sunshine and making friends with ladybugs. Now we felt the heaviness of these isolating four walls, endless syringes filled with mystery liquids, and our daughter’s newest accessory—her IV pole. Before cancer she had a catchphrase to describe her ability to face fear with her sunshine-y sparkle, and thus “Sparkly Brave” was created.
As a trauma therapist, I knew the importance of connecting during crisis, retelling our trauma story, and simply walking through this mess with authenticity. With this concept of storytelling in mind, I decided to speak with our Child Life Specialist: “Is there something that you know of that is like a visual calendar kind of thing, to help her see her milestones?” This is when the specialist smiled, “Has anyone ever told you about the Beads of Courage program?” While I had never heard of it—I breathed in every word like it was a life raft in our cancer storm and I knew that we were ALL in!
On day twenty, I placed the “hair loss” bead in her hot pink and glitter-polished hands and she clutched it really hard. Suddenly she knew exactly what this moment was. She beamed her Sparkly Brave smile and held her bead-clutched fist to her heart and said “I’m ready now! Let’s go!”
Adaleigh kept her bead clutched in her fist when she winced from the new sounds of clippers buzzing, when she was confused by her once beautiful curls falling to the ground, and when she didn’t have words to associate with the pain of walking into a new journey filled with unknowns and fears. Through the medicine, pain, cancer, and confusion, she was able to bravely sit while holding her bead. And we affirmed as she bravely proclaimed, “I will miss my hair, but it’s not forever.”
After her haircut she asked me proudly if she could place her new bead on her strand alongside her transfusions, her chemotherapy, her emergency room pokes, and her surgeries. From this day forward, placing a bead on her string became a way to celebrate these treatment milestones immediately—while the “sparkly brave magic” still lingers.
Those twenty days were painful. I ran my finger over her beads feeling deep devastation, loss, grief, hope, love, connection, but mostly—I felt how the power of a bead can give significance to a piece of a story that was experienced, but maybe not processed yet. I closed my eyes and imagined her telling her story of bravery through her beads of courage: during show and tell, at graduation speeches, on her wedding day, in leadership roles, to her future children.
It was more than beads strung together: it was the weight of pain and grief, the glittered triumph of hope, mixed with textures of medical interventions and a kaleidoscope of battles that only her journey could tell. These are her Beads of Courage and this is just one of their stories.
Lindsey N. Wamsley M.A., LPC, TBRI®-Practitioner
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A note from Beads of Courage: As a 501(c)(3) nonprofit organization, we rely on the support of generous donors like you to provide Beads of Courage programs in 300 children’s hospitals around the world. Please consider joining the Courage Keepers, our new monthly donor program, and becoming part of our honored Courage Keepers community. We are forever grateful for your support of our mission to bring hope and healing to the bedside of children like Adeleigh and all the courageous warriors we support. Thank you.