Beading the Odds: Beads of Courage (Part II)
In yesterday's post, I spoke of Beads of Courage, a remarkable program in many hospitals that enables children battling serious illness to use beads to track and celebrate their medical journeys. When I was learning about Beads of Courage, I had the privilege of speaking with Joellyn Boggess whose daughter, Erin, is a participant in Beads at a Distance, a Beads of Courage program for children fighting illnesses outside of hospitals.
Nine-year-old Erin now is in third grade but began her health journey several years ago. She first was diagnosed with a form of autism and since then has been diagnosed with several rare illnesses in addition, including Asperger's syndrome, complex partial epilepsy, 22Q11.2 duplication, and eosinophilic esophagitis. Joellyn learned of Beads of Courage when Erin attended a Birthday party during which the Beads of Courage Director of Communications and Development, Ashley Ethridge, was teaching partygoers how to string beads. The strands were being sent to a children's hospital in Hawaii. Joellyn spoke with Ashley about what Erin had been going through, and Ashley thought Erin would qualify for the Beads at a Distance program. Joellyn submitted a list of the procedures Erin had been through thus far, and within a short time, a package of corresponding beads arrived at their house.
"I remember that first package of beads so clearly," says Joellyn. "I didn't think I'd be emotional when I saw the beads, but as we strung them one by one, for the first time ever, we had a complete, visual record of Erin's journey. It was incredible." She has witnessed changes in Erin as a direct result of the beads. "Erin doesn't dread the needle pokes quite as much because she knows she'll be getting a black bead each time. It's such a great idea because she is rewarded for her bravery." And, Joellyn and her husband are rewarded for their strength, too. Every time she looks at the strand, Joellyn is reminded of her unrelenting determination to figure out what was going on with Erin at the beginning and to find ways to make Erin feel better. "I get as much encouragement from the beads as Erin does. You can hold the beads in your hands, rub your fingers on them, draw strength from them. I did that the last time Erin went in for an MRI. I sat in the waiting room, looking at her beads, and thinking, 'See? We've made it through all of these things. We can make it through this one, too.'"
Erin's appointments required numerous trips from her Kentucky home to clinics elsewhere, mostly in Tennessee, but even as far as the Mayo Clinic in Minnesota. To cut down on the travel, the family recently moved to Nashville to be closer to Erin's doctors. (They're in an apartment at the moment, on the lookout for roomier quarters.) Erin receives a fish bead for every medical trip taken. She has many fish beads. She also has many bumpy beads, which represent medication and diet changes. And, Erin has several Courage Beads – one-of-a-kind beads that are awarded in instances of extra bravery. Joellyn was holding Erin's beads as she spoke with me and told the story of one particular Courage Bead on Erin's strand: "Erin had just been diagnosed with benign tumors on her brain, and this Courage Bead arrived in the mail not long after. It's a big, yellow smiley-face bead with goofy eyes on the front, but when you feel the back, there are little bumps. It was the perfect bead to represent her tumors."
Joellyn asked that I relay her gratefulness for the program and for the many lampwork bead artists who create and donate the unique glass beads on Erin's strand. "It's an amazing thought that, right now, someone somewhere out there is sitting in front of a fire, making a special bead to give to a courageous child. I can't begin to express how appreciative I am for those people."
The Beads of Courage programs rely entirely on donations, fundraisers and income from an online store, where 100% of the profits go toward the programs. There are several ways to give support. Beadmakers can donate glass beads, polymer clay beads and others – all of which are used either in the programs themselves, or to create pieces sold at fundraisers. Beaders can donate finished pieces for auction, or can organize a String of Strength session, in which each person donates $15 to Beads of Courage and then uses kits provided to make two bracelets – one to keep as a reminder of the program, and one to be given to a child within the program. Beaders and non-beaders alike can participate in the fundraisers taking place year round: races, auctions, festivals and more.
For information, visit the Beads of Courage website. While there, be sure to check out their very first book: The Ladybug Star and the Jester's Hat, which includes the designs from the first Beads of Courage Bead Challenge.
On a personal note, I'd like to thank Ashley Ethridge and Joellyn and Erin Boggess for their assistance. Joellyn and Erin, your courage inspires me. Joellyn, may you soon have a big, sunny kitchen in Nashville. You are most deserving.