First things first, Cailyn is recuperating nicely. She is able to manage any discomfort she is feeling with ibuprofen. I love how maturely she approaches it… “Mom, it’s uncomfortable, but it’s not unbearable!”
Being home from the hospital this week, one of the pressing questions has become when will she return to school. Over the course of 11.5 years, a constant refrain from all of our care providers is the message that pushing Cailyn to do “the normal” thing is extremely important for her emotional well-being. Obviously, I will do whatever I can to support her emotional well-being. The challenge for me is walking what I refer to as a line (or tight-rope) between the actions of pushing her to do the “normal” thing and both acknowledging and accepting that a “less normal” approach might best honour the uniqueness of her journey. For example, the “normal” home recovery time for the reconstructive surgery she has had is 1 week. Armed with this knowledge, I was thinking that Cailyn might be back to school yesterday. However, having a body that is fatigued by 4 years of weekly chemo and further impacted by the additional, extensive surgery to remove her port, threw “normal” out the window.
I think embracing this drive towards normal has helped Cailyn develop the ability to rise above her circumstances. I’ve been amazed time and time again at her resilience and her capacity to push through discomfort or distress. Regardless, it doesn’t make it any easier to push her to go to school on those days she’s not feeling the best. I struggle weekly, and sometimes daily, with wondering how much pushing is too much.
In this particular example, it is definitely easier to choose the exceptional path… her first day back to school will be next Monday and, as it will take a little while for her to get back into full days again, we’ll figure out together how to “catch up” with her classes… I’m sure her teachers will do what they can to support her.
As I type this I realize that when I focus on the big picture, like my belief that Cailyn’s unique strengths will help her find her way, whether or not an approach is “normal” just doesn’t matter. It’s when I’m thinking about all the minutiae that has to happen that I worry about what every other “normal” child is doing. I think it will be much healthier for both of us if I remember that she’ll find her way and I’ll do what I can to support her.
So, pushing for “normal” can have wonderful consequences but I’m going to try to do a better job of remaining focused on the big picture so that walking the tight-rope isn’t quite so painful. This should also help me cope with my recent reflections that our “train to normal” left 11.5 years ago… the day that she was diagnosed with this life-altering, life-threatening brain tumour.