Love, Laughter and Leukemia
I believe in the power of change. I believe in going with the flow and embracing flexibility, fear, not knowing and inspiration through the process of change. I believe we cannot wait to do what is best because all we may have is today. I believe in passion and inspiration and impulsivity. I believe in intuition and improvisation as we work each moment to make it matter. I believe we have one life and one life only. This is not a dress rehearsal and so we must strive for every moment to count. I believe in joy, laughter and fun. I believe we can have all of these things as we embrace the process of life that is forever changing whether we like it or not. I believe there is so much in life that we cannot control that we should strive to make the very best of the things that we can! I believe that life is hard, but stories and laughter and connections with others make it worthwhile. And even though I believe all of these things and more, I still have to make an effort to do all of these things myself whether it is in each day, each hour or each moment. I believe we are here not to forget, but to work to always remember how lucky we really are. And that, my dear friends, is not always easy.
January 20, 1997, Emma was diagnosed with leukemia at the tender age of 3 and a half. This was the day I was redefined in ways I would never be able to comprehend. That day I left my class of 5th graders and never returned to the classroom as a full-time teacher. That day I was no longer a “normal” mom attending story hour. Playgrounds and swings were replaced with hospital hallways and medical procedures. Play dates and monkey bars were replaced with visiting hours and IV poles. That day leukemia moved into our lives and refused to leave. It set its big ass right down on the couch, cracked open a beer and settled in for the long haul. You could feel his presence when you walked in the door. He was there and whatever I tried to do I could not get him to leave fast enough. It was out of my control. There were days I never showered, days I thought I could not bear the suffering of my curly red-haired, pudgy handed baby and the absence of my 8 month old Zachary. But I did. I just did.
And after four and half years of living in fear, the unthinkable happened Yes the unthinkable does happen. Emma was 6 months to being declared “cured” when she relapsed. Yes six lousy months away from freedom and we found ourselves again put in the shackles of a diseased life. It was unbearable. Any ground we had made was gone, forgotten, as new protocols, names of chemotherapies, and the new idea of radiation to her head and spine were thrown at me I could not dodge them as I lodged myself into a corner in of a dark room at Mass General hospital and I just cried, rocking myself back and forth, back and forth knowing that I could not, would not be able to do this again. This and more. I could not do it. I knew it. But I did. I had no choice.
And for every platitude that was thrown at me in the name of comfort I can only reply. God DOES give people more than they can handle…trust me…this was too much. I am NOT a better person for having experienced this. I liked myself just fine thank you before this all happened. I am just a different person. We all have shit. It just comes in different forms. What we don’t have is control. It is not in our power. And as much as we want and yearn to think we have control the truth is that we just don’t. What we do have is the power to embrace each moment for what it is. In the same way we must treasure each individual not for who they are and not who we want them to be. We must have our eyes open at all times so that we don’t miss the beauty that resides within the shit.
I can still see my beautiful bald baby sitting in the oversized hospital bed wearing her blue and white silk panda bear pajamas smiling over at me and telling me our new favorite show was on. I would laugh and settle in next to her as we watched those chosen ones run through the aisles of a mock grocery store and try to find items faster than their opponents. The show was as ridiculous as our lives had become, but being with her in that moment was a reality I was comfortable with. I had to accept that I myself could not control the cancer, but I could try to have some control of making it a better journey, to roll with her emotions, to laugh together, cry together, play cards for hours on end, do crafts, read and anything else you can imagine doing. And eventually…very eventually we settled onto the couch and pushed leukemia over and made room for ourselves on that couch too. It was not easy. But we did it.
And so this story that has been written. This story that defined me for so long, for so many years, it not my story any longer… It is a part of my history. It has been written. It is done. And so we move forward to the next story that is unwritten and the one after that knowing that we are all going to die. It is just a fact and looking death square in the blue eyes of my Emma I know this to be true. So we might as well laugh, create new stories, cry, go with the flow, take risks, be free, love, live and try to accept what life has to offer…if even for just a moment.
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