Draft written by Shannon, posted by her mom, Gretchen.

As you know, I try to be as honest as I can be here. As you can probably tell from my writing, and as you probably know if you know me, I’ve always been generally a pretty optimistic person. This blog is called “sunshine and shadows” because I truly believe that there is always good with the bad. I practically thrive on finding the silver lining in situations.

I’ve always been a very joyful person too. I have so many memories of being utterly overwhelmed by exquisite happiness at simply being outside in the sunshine on a beautiful summer’s day. In high school, I dated a poet. He always wore all black, from head to toe, he wrote very intense poems, listened to very dark music, and read Baudelaire and Poe. Several years after we broke up and had drifted apart, we met again in a park to catch up. I was in my hippy, long-skirt-long-hair phase, and I clearly remember chasing a butterfly and being completely enchanted by it. He looked at the butterfly, looked at me and said, “How did we ever date?” It was a very good question.

Shortly after Alicia died, I was walking on Pearl Street in Boulder on a gorgeous May afternoon. The bright sunlight filtered down through the trees and dappled the faces of the crowd watching a street magician perform. In the background, a trio played bluegrass for passersby. Everywhere, there was a feeling of joy, anticipation, and delight in being alive in this moment. At any other time, I too would have been swept up by the emotion of the crowd and would have been beaming from ear to ear. But having just lost Alicia, it was too hard. Being in the middle of such joy, and knowing that Alicia would never be able to feel that again made it far worse than if it had been a dreary rainy day. Happiness and sorrow were far too close. I wondered if I would ever again be able to feel that unadulterated joy that I had previously experienced so often.

Of course, over time I did, and joy returned to my life again. There was still a very slight shadow overlaying my feelings, though it was not enough to even register most of the time.

One day shy of a year later, I of course got my own life-changing diagnosis. For the past 4 years, “roller coaster” is too tame a term to describe how I’ve felt. I’ve plunged into the blackest nights, and also been lit by the sunniest of days. I felt joy–unalloyed joy–tubing down Boulder Creek with friends on hot summer afternoons past miraculously balanced rocks, listening to live music at Red Rocks, and of course delighting in Emmie’s every developmental leap.

But since February, something has changed. I cannot allow myself to feel so deeply any longer. I may feel “happy” about certain things, but it is not the same bone deep, soul-stirring, passion-for-life I used to feel. Now, I recognize the thing as being “good,” smile about it, and move on. The other day, we went to tube Boulder Creek with dear friends, one of my very favorite summer activities, and I simply did not feel moved to even try. Yes, it was a little chilly out, and yes, I wanted to stay comfortable, but it was more than that. Maybe I was afraid my new disconnected personality would muck up my beautiful memories of tubing trips past?