This topic contains 5 replies, has 3 voices, and was last updated by  Brittany Foster 1 month ago.

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  • #19836
     Colleen Steele 
    Keymaster

    Are you familiar with the Beads of Courage Program? According to their website, “The Program is a resilience-based intervention designed to support and strengthen children and families coping with serious illness. Through the program children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.”

    I think this is a wonderful program and I’ve known many PH children who take great pride in their string of beads. Unfortunately, I didn’t hear about this program until my son was a teenager. At that point I think I was more interested than he was but we started a string for him anyway. We most likely underestimated the number of procedures and other medical experiences he had up to that point. To look at all the beads he had earned in 5 years was a real, “Wow” moment.

    Does your child participate in the Beads of Courage Program and if not, here is a link so that they can get started.

    http://www.beadsofcourage.org

  • #19839
     Brittany Foster 
    Keymaster

    Wow,
    This is a really great program. Thank you for sharing the link for this. I didn’t hear about this program until I went to the CHD conference and this was talked about. I know a few people who do it but I feel like it is fairly new so most of my friends from the CHD community who are 28 and up aren’t as familiar with it as the younger ones were. I think it’s good to have some sort of visual reminder of all you were able to overcome and get through. It makes getting through the next hard thing a little easier. It is a good way for kids to reflect and very symbolic.

    • #19875
       Colleen Steele 
      Keymaster

      I remember seeing parents post pictures to a pediatric PH group of their children’s beads. I didn’t realize it was a widespread program until one day we had an appointment at our children’s hospital and a representative in the waiting room asked my son if he had one. As I mentioned, he was a teen by then and not real interested but I really wanted him to have one. We stopped collecting after his transplant. I think for the little ones it really is an awesome idea. A picture of a child holding an enormous string of beads really tells their story without any words.

      • #19887
         Brittany Foster 
        Keymaster

        It totally does! And it also would give a lot of hope to others. It could even be a talking piece amongst kids to kids or parents to one another. Really good waiting room conversation starter! I love hearing about other’s stories and to have a visual of someone’s story could be really powerful. I wish the adults did a version of this too, maybe like a bracelet or something. Similar to those Loki bracelets style.

      • #19888
         Brittany Foster 
        Keymaster

        It totally does! And it also would give a lot of hope to others. It could even be a talking piece amongst kids to kids or parents to one another. Really good waiting room conversation starter! I love hearing about other’s stories and to have a visual of someone’s story could be really powerful. I wish the adults did a version of this too, maybe like a bracelet or something. Similar to those Loki bracelets style.

  • #19866
     V.R. Peterson 
    Participant

    I hadn’t heard of this. It’s a wonderful idea. Thank you for sharing.

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