The beads in this picture tell a story, the story of a little girl who at the ripe age of three has already battled and overcome heart disease and other challenges. There is a bead for every doctor and Early Intervention appointment, for each night spent in a hospital, for every time she had a feeding tube change, for every time she was poked with a painful needle, for every echo, xray and EKG. There are beads to represent milestones such as the day she was finally able to get rid of the feeding tube, when she was discharged from the NICU team, and the wonderful day when seventeen months after our journey started, we learned that her heart defects were finally closed. More recently, there are also beads to represent her journey on the Autism Spectrum. Almost 400 beads tell the story of the first three years of my daughter’s life – and we’re lucky, some children’s strands have many more than that.
As any parent who’s had a seriously ill child knows, paediatric illness is not a fun journey, not for the parent, but especially not for the child. What these children go through is more than most of us will ever have to endure in our entire life. But what’s more, these brave babies and children go through it all with a spirit, a grace, that most of us adults marvel at, that we know we ourselves would be incapable of. They suffer, but they smile through their tears.
Beads of Courage, originally started in the United States, now supports over 30000 children in five different countries, including Canada. Their program awards children beautiful, handmade glass beads for everything they go through – from doctor’s appointments to medications, needles, tests, chemo, surgery and more. At start up, there is a one-time fee of $25, a tax-deductible donation, that goes to support the program. You are then sent a kit which includes your child’s name in beads, the initial Beads of Courage bead, cord to string them on, and a tally sheet.
On the tally sheet you keep track of all the appointments, tests, procedures that your child goes through. Once a month (or as frequently as you choose), you can email, or use their special online order form, to submit your tallies, and within two weeks, you will be sent beads that represent what your child has gone through. Certain beads represent certain things, ie. a black bead is for needle pokes. After that initial donation, there is no cost, ever.
So what’s the big deal about a string of beads? To the child and their family – everything. These beads are the child’s badge of honor, the tangible proof of their bravery. Out of the negativity of illness and disability, it gives both the child and parent something positive to look forward to. For our daughter, who was blessedly too young to remember the suffering she went through, her beads will allow us to someday show her the story of what she went through, and what she overcame. We will show her the beads and say, “This is the story of your courage.”
Beads of Courage also offers a program for siblings. With the purchase of a sibling kit, the brother and/or sister will be sent their own personalized strand of 25 special beads that represent traits like strength, compassion and more. In this manner, Beads of Courage acknowledges that illness doesn’t just affect the sick child, or the parents – it affects the whole family. Sadly, when one child is sick, the other healthy children have to make sacrifices. It’s not fair, but it’s the reality a family faces. Our son was so proud of his sibling beads that he asked us to display them in the living room.
I love Beads of Courage. At a hard time in our lives, it was wonderful to come across this program, who in their way are bringing a glimmer of light into what can be a dark time in a family’s life. If you have a child battling chronic illness, or know a child that is, go to http://www.beadsofcourage.org to start collecting the beads for their story – for not all stories can be told in words.