Posted by Hanging from IV poles and strung across patient rooms, Bravery Beads are a common sight at the IWK Health Centre. Since 2013, Child Life Services has been giving out these beautiful beads to patients and families in the Children’s Health Program as part of the Bravery Hearts Beads program, a national initiative created by the Bravery Hearts non-profit organization.
At first glance, you might assume the beads to be a craft project or homemade necklace, and they can be both. More importantly, the beads help patients and families experiencing serious illness to tell their story of triumphs and challenges through each little pieces of plastic.
“We usually get two different reactions from people when they see our beads,” says Melissa Willman, mom of six-year-old IWK patient, Liam Willman. “It’s either ‘Wow! Look at all your beads!’ or ‘Wow, look at all your beads…’ depending on if they know what the beads mean or not.”
The Willman family started collecting their Bravery Beads just days after their son Liam’s birth on January 2, 2013. Liam was diagnosed prenatally with hypoplastic left heart syndrome, which is a rare and serious congenital heart disease. The syndrome is palliative in nature, with surgeries that help prolong life until an eventual heart transplant. Immediately from birth, Liam was taken to the IWK Pediatric Intensive Care Unit (PICU) where he underwent an extensive heart surgery at six-days old.
“Back then, we just did one bead per procedure a day, otherwise we would have amassed hundreds of beads a day,” Liam’s mom recalls. “We had them strung across his bed in the PICU and then strung across his room when we moved to the floor.”
To date, Liam has had six surgeries on his heart and for each IWK stay, the family has brought the beads along. As the family catches up on beads for the tests and procedures from his most recent IWK stay, his parents say that Liam will have close to, if not over, 1,000 beads.
The long strings of colourful beads quite literally mean something different to every patient. They can read like a log of a patient’s path through treatment and can span from a one-time stay to an entire childhood experience with the IWK.
On starting the program, all participants receive the IWK and Child Life Services beads. After that, beads are collected after each experience. Some strands may have many bunches of stars which represent multiple test and scans, or, like Liam, have many gold hearts, representing each heart cath procedure. There are beads for “wow” moments (smiley face), diagnosis (dolphin), Life Flight (airplane), radiation (white glow bead), and the ones all families want, the completed treatment (daisy) and discharge (house).
According to Chantal LeBlanc, professional practice leader and coordinator for Child Life Services, the beads can also play an important role in starting a conversation about what a patient and family are going through. Receiving the beads can be an opportunity to reflect and discuss what that experience was like. LeBlanc also recalls stories of children bringing their beads into school for show-and-tell as a way to explain to their classmates what they went through. Families may even hang their child’s beads on the Christmas tree.
“Kids get excited about their beads and they’re proud of them,” says LeBlanc. “The beads help them share their story in a way that’s empowering. It allows them to take control of how they want to tell it.”
Each family has their own reason for starting the program. “We started it as something for Liam to have in the future so that he knows what he went through,” Brian Willman, Liam’s father, says as he lays next to Liam in his hospital bed. “He asks more and more each time we look at them, now he helps putting them on and stringing them up.”
“It’s mostly to show him his journey, like ‘look at all the stuff you did, buddy, you’re pretty amazing’,” continues Melissa.
The Willman’s family is expected to be discharged from the IWK any day now. Their keepsake of Bravery Beads has gotten longer, but Liam’s parents agree that they treasure the irreplaceable strands.
“It’s humbling and it brings back a lot of memories, but it’s great to have. We know that in a couple days that we’re done for a while and that’s a great thing. We’ll be able to look at our beads from this time and go ‘We did it. We all did it again’.”
“We’ve had other families stop us and say ‘our beads aren’t as long as yours’ and Brian and I are quick to say ‘that’s okay’. It’s not about how many beads you have, it’s about eventually not having to get anymore.”
See the full bead legend of what each bead represents to help better understand a patient’s journey the next time you see these strings of colourful beads.