I love the sun. On cloudy days if the sun peaks through I immediately feel my spirits lift, a surge of energy rush through my body and suddenly life isn’t all that bad. Claire, on the other hand, I think had a love-hate relationship with the sun. Before she had cancer she enjoyed sunny summer days at the beach or pool and always looked forward to her “summer hair;” an even blonder version of her “winter hair” complete with sun kissed highlights.
But cancer has a way of changing EVERYTHING. During her twenty months of treatment there were those occasional sunny summer days when she actually felt good enough to enjoy the pool at our townhouse, soaking up the sun and getting in some physical therapy in the water to help combat her neuropathy. But after cancer we were extra hyper vigilant about making sure she was covered in sun screen, especially her beautiful bald head. And I know in the back of both our minds was the nagging fear, “Will the sun make her cancer worse?” I do not know the medical answer to that question but just thinking about the possibility that the sun who had been our happy friend could now become our distrusted enemy earned its way onto the list of “How We Have Been Robbed by Cancer.”
And then there were the days when she didn’t feel well, which were most days. We had started out our cancer journey at St. Paul Children’s where the clinic was “cozy” and the rooms were tiny windowless boxes complete with a secret toilet tucked away in the cupboard! Making the move to Minneapolis when the two clinics merged was a challenging transition, but among the “good” of the change were the spacious, luxurious infusion rooms with those big windows. Walking in there for the first time I could feel strength returning to my soul because now I would be able to feel connected to the outside world during those long days of chemo and transfusions. Claire was not so thrilled, however. Much to my disappointment, every time we came on a sunny day, regardless of the season, the first thing she would ask me to do was to close the blinds. Of course I did it, because she was the one being poked and prodded and getting pumped up with either toxins or blood. While it made me personally sad to say good-bye to the outside world for the day and to the nourishing sun which would help to soothe my own soul, I realized that it was a small price for me to pay in order to help make my daughter as comfortable as possible in an extremely uncomfortable situation. I never really knew why she wanted them closed. Maybe the sun hurt her eyes, or she had a headache, or she wanted to block out the outside world because she couldn’t participate, or she just wanted to crawl into a dark cocoon. It doesn’t really matter why. As cancer moms we do whatever we can to help our child through this scary, tedious, unfair process. So sitting there in the dark helped me get a very small glimpse into what it might be like for Claire. Her life as she had known it had come to an abrupt halt. Many days she was not able to do what she really wanted to do because of her physical limitations. When I put it in this perspective, giving up my sun for the day was nothing. I couldn’t make my daughter feel better, I couldn’t fix the cancer and I couldn’t take her pain away. But I could sit with her in her darkness.