The other day, I ran across a tiny, plastic bag that contained a blue bead representing a clinic visit.
My son Caeleb was part of the Beads of Courage program at the University of New Mexico Children’s Hospital. The program uses glass beads donated by artists to help better the treatment experience for children coping with chronic, life-threatening illnesses. Beads come in different shapes and colors, each with special significance depending on the category; physical therapy, infusions, overnight hospital stays, and blood draws are a few examples.
The children are first given a length of string and beads to spell their name, then additional beads are added. Children can also create a “Dream Bead.” Every year, artists and glassblowers gather across the country with the goal of making as many beads possible in one day. They have a contest to see which location creates the most beads. Children can request their Dream Bead before the event and pick up their bead on contest day. It is a bead that is unique to their wish without another like it. My son wanted a Sonic the Hedgehog bead and an artist from Arizona created a work of art for him. Sonic was his superhero. Caeleb wanted nothing more than to be fast.
Why does something as small as a bead make such a huge difference? When you struggle with illness and are in and out of the hospital as much as chronic kids are, sometimes, it’s the little things that make a big difference during a hospital stay.
Caeleb would often be in tremendous pain or want desperately to go home, but we had days left before we could leave. His strands of beads signified his strength and courage. We would hang his beads on his IV pole, and they always became a talking point when someone would enter his room. When asked about certain beads, he would often beam with pride over his favorite ones. For a moment, they took away the pain of being in a hospital.
The beads went with him to every hospital stay and remained a focus not only for my son, but also for me. It was a tangible way to connect with the ordeal we were living through.
Even now, as Caeleb has been out of the hospital for a few years, his beads hold a special place in his room at home. Instead of curtains, he has his beads draped from one side of the window to the other, loop after loop after loop. These beads still serve as a reminder of his strength and courage that sometimes a 13-year old might not think he could possess.
When I came across the small, blue bead, the memories of collecting beads by the hundreds came flooding back. Yes, we went through some horrific times. They were times I never want to live again. But those times were filled with lessons I would never trade. I came to understand compassion in a deeper way than I ever dreamed. Compassion for the providers who spent hours and hours developing treatment plans for my son. Compassion for the nurses and techs who spent long hours away from home taking care of not only my son, but also my family. And compassion for my son. One that enveloped my entire being as I watched my child suffer in pain.
I am so glad we are now in a better place. And those little beads? They made all the difference in the world.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.
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