I have just had a most interesting experience with Cailyn. As her school is preparing for their “Relay for Life”, one of her friends asked her if she would speak about her journey at an assembly scheduled to get students involved in the fund-raising experience.
She agreed, and immediately asked me if I would help her create her presentation.
So, we sat down to begin her draft and agreed to three major sections… 1. who am I? (from Cailyn’s perspective, obviously); 2. the milestones of her journey with a brain-stem tumour; and, 3. her greatest hopes for this presentation.
It was very important for her to start with ‘who she is’, because it is through this section that she’s able to communicate how much more “alike” than different she is from her peers. I actually marvel at her ability to focus on “normalness” when the weekly chemotherapy injections are a constant reminder that she has to deal with things her school mates can’t possibly understand or fully empathize with. Working on this section with her, I was impressed with both her self-knowledge and comfort level with herself.
I found the second section harder… recording in black and white, the challenges she has faced, makes them very hard to ignore. It is also misleading, in my estimation, to distill major milestones on her journey down to one bullet point… it certainly doesn’t honour the emotional or physical wear and tear experienced, by anyone. I have shared a decent accounting of our journey with medical professionals and I figuratively held my breath as her list got longer and longer… I was concerned that seeing everything in front of her would be overwhelming, resulting in her being sad. Also, as she never wants her challenges to be the focus of anyone’s conversation, I was very surprised at her preparedness to document “everything”. I believe she accepts that the more she shares, the more likely she is to inspire her peers to get involved and raise money for cancer research.
Cailyn’s hopes are that research will produce a cure for her and anyone else on a journey with a brain-tumour / cancer… she doesn’t want to lose another friend to this terrible disease. I marvel at her strength to openly share her story and ask for help… I’m so hopeful that this same strength will be her constant companion moving forward.
I appreciate that I shared my thoughts about what her presentation should include and why, but I am humbled by the grace with which she managed the challenge.
What a surreal experience to have with my beautiful girl!