I recently read the beginnings of a memoir by a 46 year old man that was diagnosed with endocrine cancer. As different as my situation is, I related so much to the cancer experience of this man. The journey from symptoms to discovery to diagnosis….I have walked that path. But as a mother as opposed to the patient, our paths diverged. As I read him describe his “painful” chemo cocktail of etoposide and cisplatin for 3-4 months, tears began to burn my eyes. Not only did Hayes have those exact “painful” chemo drugs, but he also had 8 more chemos over the course of his 8 Month protocol. My sweet 10 Month Old Baby was exposed to those same drugs and more. It was our only option, but as parents you do anything. You do anything to keep them safe and comfortable while at the same time, knowingly giving them poisons that nearly kill them, day after day. But that is our only hope. It is the only weapon we have to fight the monster that is just as relentless as we are.
Looking back over the battle we had, I realize that during that fight, I really didn’t recognize the magnitude of what we were facing. I was devastated and scared, but every day I clung to the hope that chemo would fix my baby. Having hope was the only thing I had control over and I unceasingly held onto it.
I remember so vividly what I was doing a year ago today. It was Halloween of 2016 and Hayes was Home. I woke up early, got my kids in their costumes and excitedly dressed my 3 babies in their themed carnival costumes. Life was beginning to “normalize” and I had nearly let go of all the fear of cancer I had accumulated over the past 8 months. Although Cancer was in the rear view mirror, a deep, hidden part of me knew I was forcing it away; running from the monster that would forever stalk us. But, I ignored it and I have no regrets about my denial…it allowed me to feel peace and happiness and joy which my family so desperately deserved. Life was blissfully naive for a few short months.
I feel like my life is mostly in black and white now. I still smile, my kids still smile and there is laughter. But, that rich deep feeling of life that is seen through saturated color is not felt very often anymore. I sat through my kids Halloween parade today and watched as my kids marched through the halls of their elementary school, proudly showing off their costumes and my babies danced to the Halloween music playing over the loud speaker. I smiled as the scenes unfolded before me, but then it hit, it always does, that Hayes should be here and the magic of another holiday vanishes. It is painful. Steve and I always smile for our kids, but deep down, we want to hide. Sleep away the winter that brings with it all the painful reminders of our sweet angel boy.
I don’t like to focus on the pain, I really don’t, but this is also our story. Life isn’t easy, unfortunately. But, in a strange juxtaposition, what gets me through these hard days is hope. Hope for a brighter future, hope for a happy tomorrow & most of all, hope that I will see my Hayesey again. Hope is what got me through that original fight and ironically, it gets me through my days without him now. I will continue to slap that smile on my face with a hope that one day it won’t be so forced. With hope that one day I will be able to have a life where Hayes is simply a warm, happy memory and not a painful reminder of loss in my heart. Until then, I hope.