September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics.
By Jill Bolling
“In God We Trust,” found on every penny. Whether heads up or heads down, that penny is a symbol of our faith. Pick it up!
“God only gives you what he knows you can handle.” Seemingly honest and encouraging words, until you hear the word ‘cancer.’ It affects the entire family. Your mind a puzzle full of 50,000 “what if” pieces looking beautiful on the outside like a Monet painting carrying this burden called cancer with grace, while on the inside it looks like a Jackson Pollock painting. Abstract and ‘Convergence’- bring it all together unifying yourself with this diagnosis. Exigent and vulnerable.
Trust in God. He only gives you what you can handle.
Truth is, cancer is not a work of God. He did not give us this disease. He did, however, help this parent of a child with cancer overcome a sometimes still haunting diagnosis.
God made his presence known in the soul of my child who innocently shared his tender encounter. “Mom, is it okay for me to skate up to God to play?,” said Kellen at the age of 3 and a newly diagnosed childhood cancer warrior. My response, “Yes, but you need to return for supper.” Selfish.
Or the conversation that included a vision with my father, who had passed from metastatic lung cancer when I was merely 16 years old. I had never spoken of my father’s illness or how he died with my children. They only knew that he was in heaven and our Guardian Angel. “Mom, your Daddy died of cancer, didn’t he?” “Yes, he did, Kellen, but a different kind of cancer, not your cancer. He didn’t respond to medicine like your body is responding to medicine.” Honesty with simplicity.
Kellen, my first born, a smart, energetic and angelic looking child with his pouty full lips, soft blue eyes, dimples and wavy white blonde hair was followed by four identical looking children over these last ten years: Cooper, Willie, Wyatt and Aaden. The only difference between them is Kellen’s blood went haywire forming a “common” cancer pre-B cell Acute Lymphoblastic Leukemia. And so our storybook changed.
Chapter 3: Cancer 101 took place of the original Chapter 3: fun filled summer playing in the water, eating watermelon, and traveling to new places with friends and family. The feeling of isolation sets in because the instincts to save your child are the most crucial. This included not going to church, not having germy friends over, no parties, lots of time to think between a toddler’s roid rages, and plenty of advice from friends and complete strangers.
For the first time ever I’m making it publicly known that sometimes I wanted to gently smack the person offering advice. Especially when it came to discussing death, a childhood cancer death. They had no idea how our storybook was to include many children, blissfully naïve adventures, lots of laughs, and hopefully athletic children so they could take care of us as we aged.
Never did I ever think that I would be the parent sitting in a hospital room on the Hematology/ Oncology floor wondering if my child would survive and eventually answering questions about why some kids die and some kids survive until I was.
Kellen survived. He is currently 10 yrs old and just celebrated his 5th Domination Day (last day of treatment) after starting the 5th grade. I would be surprised if any of his friends would remember what he had endured. I’m certain that many of his friends’ parents never found themselves sitting on the edge of the bed with hand over shoulder explaining that their fellow cancer friend had died. Where is my EASY button?
Emotionless. Lifeless. Angry. Frustrated. Lost. Selfish. These words all describing the interaction between mother and son discussing a child’s death. In God We Trust. A semi-relaxed household, we have always been honest with Kellen about his disease and equally so describing it to our other children.
I’m aware they don’t fully grasp the concept of death. I know because in desperation I called Childlife for assistance. But Kellen understands it more. His little brother Cooper understands it more. They know that heaven means eternal life and not this sinful life of suffering and disease and hate.
Over the last year we have lost no less than five local children to cancer and Kellen and Cooper knew four of them. They met during camp and played with their siblings. Alike in so many ways and yet different because Kellen is a survivor. Cooper, our 16 month old toddler comic relief at diagnosis, weeps and seeks comfort at the news of death. Kellen demonstrates flat affect. Emotionless. Avoidance. Until Cooper returns to our side to inform us he is crying. Parent failure? Survivors guilt? Frustration? Jealous?
Where is that damn EASY button!
There is no EASY button. My husband and I have always made this marriage and family a team effort. However, the discussions of death, a harsh reality that we all will in time surrender to, left us speechless. Sometimes we found ourselves staring at each other. What do we say? How will they respond? What do we do if the response isn’t what is expected? How much do we tell them?
Fair questions for a topic that naturally instills fear in mature adults. My boys are physically seen as adolescent and yet they have endured more than many adults. Honesty! I didn’t anticipate a death discussion. Maybe I stored the possibility of death in a small space hopefully to crowd it out with more enjoyable events. Truth is I wasn’t given that luxury of rainbows and butterflies for my children.
I do believe I was prepared for this event. You see, I knew my father was present with us in that hospital room. I knew that Kellen’s conversation with God was to remind us he is near. I believe in eternal life and I knew that my Dad was protecting us, guiding us during these most difficult conversations.
Your children need to see that life can be a struggle and sometimes “bad” things happen to good people. That is this life. If you believe in higher powers, your children should know that God doesn’t want them to die, he wants them to have eternal life. Death is inevitable so that we may live forever. One day they will understand. One day we will all be together free of all things evil. Until then… In God We Trust.
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Mary Tyler Mom 