As much as I try to shine a positive light on living with cystinosis and strive to treat Elsie like any other little girl, there is no denying that cystinosis can be heavy. She has a lot of responsibility pressing on her little shoulders and a lot of unpleasant experiences to endure. I’ve spent more than a few late nights worrying about how all of this is going to affect her as she gets older. More than anything I want Elsie to understand that she must take care of her body and stay compliant with her medications, while at the same time not feel burdened by them. She should be proud of her fortitude and resilience.
So when I learned about the Beads of Courage program, I was ecstatic. Beads of Courage is an arts-in-medicine program in hospitals across Canada, USA, Japan, New Zealand and the UK that help children with serious illness record, tell and own their story of courage through beads. Children are given different coloured beads for every procedure, scan, poke, etc, they do which allows them to share their stories with others and take pride in all they have overcome. Below is a great video explaining what the program is.
Did you get through that without tearing up? I made it until we met Scott and then lost it. Such a courageous young man ❤
I was so excited to sign Elsie up but when I went to the participating hospitals link, I found that BC Children’s Hospital, was not listed. Luckily they also have a Beads in the Mail program and I quickly applied for Elsie to be a part of it (note: if you are in Canada, like us, you need to apply on the Beads of Courage Canada site). We heard back quickly and I was sent a link to send in my request for beads! To start with they send you a length of string, white block beads spelling the child’s name and one bead for each category you request to signify treatments completed before enrolling in the program. Elsie was so excited to get her beads and repeatedly asked me when they were coming.
I think they took about 3 weeks or so to arrive and when they did she was not disappointed. We went through all the colours, I told her what each one meant and she got to string the beads herself. She wore them around her neck for 2 days straight. Now whenever someone asks to see them she’s always so happy to pull them out and ask me what the different colours mean so she can tell them her story. I think her favourite one is the glow in the dark bead (it’s mine too, because glow in the dark man!).
I’d say the only draw back to the beads in the mail program is having to wait for the beads. I keep meaning to write them and ask if I can pre-order the beads when I know that appointments and blood draws are coming up. One of the goals of the in hospital program is to strengthen the relationship between the child and their healthcare team as they are the ones who present the beads in acknowledgement of what the child just bravely went through. So if I had the beads ahead of time, Elsie could also experience that part of the program.
In addition, they also have a sibling program and I plan to enroll Linden when he gets a bit older and stops putting everything in his mouth. Already he’s always trying to get his hands on Elsie’s meds and you can see how much he wants to be just like his big sister.
If you’ve never heard of Beads of Courage please take some time to check out their website. This is one of those organizations that I recommend everyone look into. If you don’t have a child with a medical condition, they are always looking for donations and they are making an incredible impact in so many children’s lives.
Not even two weeks after I’d ordered Elsie’s first set of beads I also discovered an amazing shop called, Bravery Buddies. A mother of two boys with cystinosis had shared the story of Bravery Buddies on Facebook as she was friends with the woman behind the stuffies. Her name is Leslie and she originally created some buddies for her three triplet sons who were each diagnosed with retinoblastoma. She wanted something they could cuddle with during their pre and post op recovery from the many surgeries they had and also something that could display the Beads of Courage they received during their treatments. The buddies have mouths you feed the beads into so they can be displayed in the clear pouch of their tummy.
After her three boys cancer became more stable she wanted to give back and help support other children going through their own medical journeys and Bravery Buddies was born. She uses Bravery Buddies Facebook page to spotlight these courageous children and each one receives a free buddy. If people would not like their children to be spotlighted or want to help financially support the stuffies they can purchase a Bravery Buddy on her Etsy page as all money made through the site is used to create more buddies.
As you can see in the picture above Elsie loves her buddy, whom she has named “Pinky.” And as a fun bonus Pinky’s ears and legs were made by me! Leslie had posted that she was always looking for people to help make pieces of the buddies or even just donate fabric and I had a ton of fabric left over from various projects. The ears are from Linden’s first Halloween costume and the legs are left over from a cowl that I made Elsie, one of the first things I ever sewed on my new machine. I was so happy to be able to contribute and sent along a few sets of faces, ears and legs. Those little personal contributions make Pinky that much more special to me and Elsie.
If you have extra fabric on hand and maybe even some extra time please consider donating to Bravery Buddies. I can’t think of a better way to use fabric scraps.
It’s difficult to watch your child go through so many hardships and feel like you can’t do anything for them. Thankfully there are programs out there like Beads of Courage and Bravery Buddies that help parents like me do everything they can to empower their child and show them just how incredible they are. Elsie is the bravest person I know and I hope that she knows just how courageous she truly is.