Six years ago today, January 14, 2011, my first born child, vibrant, beautiful and intuitive by nature, took her final breath here on earth. It was a Friday afternoon, shortly after 3:00 pm. As she lay cradled in her mother’s lap on her bed, I looked away for a quick minute. I glanced back over and there was no rise and fall to her chest. That was it. Thirty-three months after she was marked for death by a brain cancer known as DIPG (diffuse intrinsic pontine glioma), she died peacefully.
I have so many thoughts swirling through my clouded head today. Many involve the childhood cancer advocacy work now forms my professional existence. Some involve the fear for the many thousands of children currently fighting cancer and those who live with the life-long acute health issues as a result of the treatments they endured. Their future hangs in the balance just like their insurance coverage.
Despite battling the deadliest pediatric brain tumor, Alexis lived each and every day to the fullest. She lived a life that was adventurous, creative, brave and kind. She lived a life that stands as an example for me each and every day despite often failing to achieve these ideals. In a little less than five years on this earth, Alexis lived more than most of us do who reach late into our days. Most of us simply go through the motions. Alexis taught me so much about life. When I think about her, which is quite frequently, I am always reminded of a letter attributed to Hunter S. Thompson about what it means to find your purpose in life. Thank you Alexis for this message and gift achieved on the tip of a spear called pain.
I have no major message today. I will save that for another time. Each of us is capable of finding our own meaning in life if we are willing to dig and pry back the layers. Sometimes life does the digging for you. Alexis was the best digger I have ever known. In the end, life is not linear. I have many tasks waiting for my attention today. Today though, I will turn to the one task that is pressing the heaviest. Today, I will simply celebrate Alexis’ love, courage and legacy. Pass it along please.