May 31, 2013
Swirls, colours and patterns. Each one representing my son's journey through Crohn's Disease. A silver bead for every iron infusion, orange and red swirls for blood tests and a green bead for each invasive procedure....colonoscopy, endoscopy, MRI, capsule scope.......an endless list.
These are my son's Bravery Beads. A visual history of his story through treatment, and a unique way to remember what he has to go through. I think this is a very personal thing for him, as he has told me that the beads show how brave he is during his hospital visits, and how they make him feel strong.
The Royal Children's Hospital in Brisbane have a Bravery Beads programme, but it is only being applied in three departments at the moment - Oncology, Respiratory and Metabolic Medicine.
It is hoped the programme will be offered in other areas including Gastroenterology, which is our stomping ground, and I really feel that it should be because Crohn's Disease is a chronic illness with no cure. It is stressful and confusing and annoying and life long.
Until then, we will keep collecting the beads and his story will grow through colours and swirls and love.
May is Crohn's and Colitis Awareness Month in Australia.