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 Amy Aldridge
Oh, September. You’re a tough month to swallow. You bring a sea of gold, emphasizing my loss and the losses of cancer parents everywhere. What are we to do with you?
There’s a ribbon color for every malady, a day/week/month for every disease with a name. You just happened to be assigned this particular color and cause. You make it very hard for some of us for these 30 days. You emphasize desperation, illness, loss, and great need, sometimes sprinkled with a positive story, but not enough of them. You often bring out the worst in me.
Who am I? Growing up, I was a smart kid, but one who lived in fear of my father, a perpetually angry man. Fear has invisible fingers that hold you so tightly that it’s difficult to break free. Fear lowers your capacity for risk. When you are afraid to fail as a child, you become an adult who is afraid to fail, too.
I was a frightened young girl who wished to be brave. Intrigued by all things British, my interest was piqued by a combination of late-night episodes of The New Avengers, James Bond movies, my fascination with the Royal Family, and my insistence on having the Princess Diana haircut. I thought I would make an excellent spy in Her Majesty’s Secret Service.
I dreamed of solving mysteries that no one else could; of being the heroine. I wanted lipstick cases with poison darts, stilettos with phones in the heels, and cars with rocket launchers. I would be brave, and I would always catch the bad guys. Failure was not an option. Someday, I would not be afraid.
Fast-forward many years. On July 24, 2006, the safe, comfortable life I had built (I never became a spy) came crashing down on me like hot waves of salt water. My daughter was diagnosed with terminal brain cancer on her 12th birthday. (You can read Sahara’s Story HERE.)
That day, our family went to war, and I set out on a mission that was life or death. I’ve tried to find other words to define it, because you can’t or shouldn’t compare a terminal disease with a battlefield in a faraway sandy hell. Or can you? War is hell, right? War is a daily battle, injuries with blood and stitches and triage, needles and pumps and medicine. It’s an ever-changing tactical mission that sees no end.
Trying to save my child’s life when the options were few to none was my version of being surrounded by the enemy. 24 hours a day of being on constant watch, sleeping when we could, coping with unbearable conditions over which we had no control. Cancer’s only mission is to kill. My only child, dying. Ravaged not only by the disease, but by the weapons of chemotherapy, radiation, and steroids that destroyed her little body a day at a time, over the course of seventeen months.
Mouth sores that burned and bled. Stretch marks and skin tears that required me to bandage her arms and legs to keep them from splitting open and getting infected. She lost the ability to walk and became wheelchair-bound. Her words became very difficult to understand. She could barely chew and swallow. She was helpless, and I was the one trying to find the answer to the mystery that no one could solve.
I was so convinced that I would crack the code. I searched the Internet day and night, finally finding some hope at Stanford University. In the end, it was too late to save Sahara. The timer on the bomb clicked back to zero, and in an instant, our world detonated. The mission was truly impossible; the bad guy had won.
Sahara died on the evening of November 5, 2007. I had failed to save her life. I’ve negotiated with this guilt ever since. Did I do enough? Was I bold enough? Did I make the right choices? Did I miss something? Did I make it worse by taking her so far away from home for treatment, away from family and friends?
The niceties of “you did all you could/it wasn’t meant to be/it was God’s will/she’s in a better place,” have never comforted me. A mother’s role dictates that she should be able to keep her child safe and alive. A mother shouldn’t have to wonder what the differences in treatment might be from one institution to the next. A mother should not be told, “It’s always fatal. Take her to Disney World.” Sahara had already done Disney, and certainly didn’t want to go because she had cancer.
She hated that people identified her with cancer. Not a day goes by that the “what-ifs” don’t sneak into my mind. A parent should not be powerless and afraid. Suddenly, the scared little girl inside me was faced with the unthinkable, and I had to navigate those deep, dark waters with a brave face that hid my terror so that Sahara could not see.
The night she died, the best of me died with her, too. My worst fears had been realized. There was nothing more I could do. Ultimate, final failure.
September pours salt on an always-open wound. It’s the feeling I get when I hear a zipper being zipped. For me, that sound means that the body bag containing my daughter was just zipped shut in my living room. In the heart of baseball season, when I see a San Diego Padres logo, it jolts me into thinking about the fact that Sahara was wearing a t-shirt with that logo when she died. I remember every sight, smell, sensation, taste and emotion. It is a hyper-state of being, this post-cancer-parent’s life.
September, you’re too much sometimes.
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Mary Tyler Mom 