May 31, 2013

Bravery Beads

Beautiful beads.

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 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.


♥.Trish.♥ Drumboys said...

I'm so glad you found C some beads , they look fabulous. When you go to US maybe you can get a stash.
It is great they help him endure the tests and procedures.

Princess Kate said...

What a beautiful way to document his journey and his courage.

Farmers Wifey said...

That's a great idea Trish, I'll have to find some bead shops in America!!

Thanks Dorothy, my son loves them, truly x

country life said...

This is such a good idea, I'm glad it helps! One of my friends has this, the beads are a lovely way to help get through the tests and procedures

LisaW said...

I love the idea of bravery beads! I've never head of them before, but I can see how each one of them tells a part of your son's journey, and how they would help him. Does he display them some how in his room? They're quite's just a shame he has to collect them. I agree, they should add gastroenterology to the list. There must be a lot of kids out there that could benefit.

Mimsie said...

What an amazingly wonderful idea and something your lad can look at and realise how brave he's been and is being. Much more research needs to be done on some of these diseases that seem to be put in the too hard basket. Is it the more 'fashionable' diseases that get more research money I wonder?

Farmers Wifey said...

@ Country Life, that's great that your friend has these, I'm sure it really does help, hoping your friend is ok x

@ Lisa, We do have some beading soft wire to make a necklace...maybe he'll just hang them on the end of his bed..they are really quite pretty x

@ Mimsie, I wonder that also, about the more "popular" disease, Crohn's is a life long, chronic condition, so often these children suffer just as much as others...they have it for life :( x

Alyce @ Blossom Heart Quilts said...

In regards to research money, there is DEFINITELY a bias to "fashionable" diseases. My husband's a scientist under the broad cancer research banner, and when applying for research grants in Australia for cancer research, if it isn't breast or prostate or whatever's hottest at the time, it's a lot harder :(

Norlin said...

That is such a great idea!! Never heard of them but it's a great concept/way for him as he goes through his treatments etc. :)

Farmers Wifey said...

@ Alyce, yes it is harder, this disease needs more "air time" to help people realise how awful it can be xo

@ Norlin, it really helps him, gives him a bit of a boost when he has to go through all of this xo

Fiona said...

Crohn's is certainly an evil, insidious disease. My mother lives with it, and we've had some really hard times with it.
I certainly don't want to push my opinion on you, but it's nice to be able to share experiences and of course you can take on board what you wish for your situation.
I read David Gillespie's 'Sweet Poison' a couple of months ago and as a consequence gave up eating sugar (lots of substitutes available and it's really giving up fructose, not glucose which can still be used for baking etc). To cut a long story short, my Mum gave up as well, and as a result has never been healthier in terms of bowel health which is just amazing for her. And no, it's not nice to talk about bowels, motions etc, but in her words for the first time in her life, her bowel seems to be working properly. She even had a video-conference with her Brisbane doctors (Royal Brisbane) a couple of weeks ago and they were amazed at how healthy she seems and were keen to hear all about her new 'diet'.
Sweet Poison is well worth the read, and even my four children are now sugar-free (within reason), without altering our lifestyle too much.
Wishing you and your son all the best.