Kayla did a thorough job of explaining the purpose of Bravery Beads, so I will dive right into my experience. As I’ve mentioned, both my boys were in critical condition for the first six weeks of their lives. I remember a nurse starting a necklace for Theo and hanging it by his bedside. At the time I probably thought it was a sweet gesture but really didn’t think any more of it. I was in such a fog and didn’t take in the intention behind collecting beads.
The second time around, with Christian, I was eager to acquire the correct amount of daily beads. I wanted his necklace to be an accurate reflection of my family’s experience. This was difficult because Christian’s case became more and more complex and my interest in collecting Bravery Beads dissipated. With that being said, I do recall some high moments when the boys crossed certain milestones. The most prominent for me was when my boys received the extubation bead. My boys were intubated for very long periods of time, so in my eyes this bead was like a gold medal. I even remember getting that specific bead and hanging it on the necklace - it was such a sign of relief for me and my husband. Based on my two-time experience, I’ve seen other parents have different relationships with Bravery Beads. Some parents collect as many as possible and others are less interested. Some NICU parents have expressed that collecting beads, even after their child’s hospital stay, was therapeutic and a way to for the family to continue to reflect on their experience. For me, I’m content with necklaces that don’t represent every single poke or prod. The idea of Bravery Beads is to show the child’s growth, so I’m okay with necklaces that don’t explicitly outline every milestone. Something that is important to remember is that these beads are not a competition. Pain is pain, trauma is trauma, suffering is suffering - the more we stop comparing our journey to others, the more we recognize and validate our own struggles. Bravery Beads are what you make of them, but at the end of the day it doesn’t matter who has the most beads and who has the least. We must focus on empathy and give one another credit for the individual journeys we are all on.
1 Comment
The beads behind the blogThe day your baby gets settled into the NICU, they are given a few Bravery Beads to hang from their crib. They start with an admittance bead, and your babes name. You can collect the beads for every procedure, poke, event, diagnosis, test, visit, wow moments, and pretty much anything else that happens. The beads are so much more than beads. Their meaning goes way beyond the beads. They symbolize Bravery. They symbolize every obstacle these babies and children go through or overcome. The sizes, shapes, colours, & pictures on them, all have meaning beyond just a bead. There are so many different options, and each child's strand tells their specific story. It's a timeline of their story. Adam's beads reflect his journey perfectly. We have his strand from the NICU where we documented all of his tests - every single part of his little body was tested and they all came back normal. When he got his G-Tube, we documented and collected beads for every time he peed and pooped - because for the first time ever it meant that his stomach was filling and everything was working as it was supposed to be, and there were no associated anomalies or issues. We have a video from us taking our final bead in the NICU. To us, that discharge bead meant so much, but we had no idea about the very different journey that was ahead of us… Adam's beads look the way that they do because they are an exact representation of his time spent on 5B. There aren't many colours, not a lot going on… but there are a lot of them. We collected beads for every flush or suction of his replogle, clearly some days had more than others. He has beads for every time his feed was connected and he got the milk I spent so much time pumping for him to grow big and strong. It was very calculated - every amount, every time. We collected beads for every replogle change, every time an OT or Child Life visited, every injection, and every holiday we missed while we were there. My favourite ones are Adam's Gap Study beads. Each Gap Study bead is followed by a WOW bead and an Unusual Occurrence bead. Because every single Gap Study he had, his esophagus continued to grow, and his replogle went down further than expected. We stopped collecting them the night before Adam's surgery. He had one IV put in, and the last one we put on was his surgery bead. There was no way we were able to keep up with the chaos we lived through in the ICU. To be honest, I'm not even sure if I want to see them. I know I can't even remember everything… nor do I really want to. I've blocked so much of it out, I don't know how I'd feel about a physical constant reminder of it. We also didn't continue Adam's beads when we got back up to 5B post-op until discharge. There was a night where he got poked what felt like a million times as someone came from literally every separate unit of the hospital to try and put in an IV. Adam's beads tell his story, and our story. Maybe we'll go back and add his clinic visits and G-Tube removal… for now, they're perfect just the way they are - displayed proudly in his room, with his NICU ones on his Hudson Bear. |
To navigate the BTB blog, you can scroll through the posts, or if you're looking for something specific - you can click on a category below & it will take you to related posts!
••• k Archives
September 2022
Categories
All
|