When thinking of the story of my life I never thought this was how it would turn out. Sad and desolate, filled with heartache and anguish. Every sad story needs a hero but that is certainly not me. I am no hero and nor do I wish to be one. I can barely save myself much less help others. I am angry that I couldn’t be the hero. That I couldn’t save my daughter. In a story about families the parents are supposed to be the heroes. They are supposed to save their children, protect them from harm. But no heroic action on my part could save Ariella. I could not when it was most necessary, fulfill my role as a mother.
My daughter is the real hero. She is light, she is grace, she is my savior. But she is no longer here. She is the hero that paid the ultimate sacrifice for the battle that she did not choose. It chose her. Her story defines my story, from the day she was born. I was no longer just a wife, just an occupational therapist, just whatever. I was a mom. My most important and meaningful role. My life and story was forever changed where I went from the main character to a supporting role. My daughter had, and still has, the leading role in the story of my life. Now more than ever since I feel her absence everywhere.
This story is no fairytale. It is a horror story with twists and turns and suspense. The nightmare began when Ariella was diagnosed and since that time there have been many plot twists with unexpected hospital stays, achieving remission, relapsing, setbacks, and progress. We never knew where the story would take us, what scans would show, what the next steps were, how it would end. I wish I could go back to not knowing how it would end. I wish it was one of those choose your adventure stories because any other ending has to be better than the ending we got.
But unfortunately for me my story did not end there. My life did; my meaning, my purpose, but physically, my story goes on. Collateral damage left in the wake of destruction. I am not the hero in this story. I am not doing anything heroic. I am not inspiring, the epitome of strength, someone to look up to. I breathe because it is an involuntary function. My heart beats, also against my will.
My story took a dark turn, led me into a black, twisty, labyrinth with no way out. The true heroes of my story are present. The ones who have been there, who are not scared, who don’t turn away from the demons haunting me. They try to lead me through the paths, to the light but no matter which direction I turn, I keep hitting dead ends. Sometimes I feel like I am making progress, finding my way through, the path ahead looks clear but then out of nowhere, a wall. A dead end. This wall, this barrier, doesn’t just stop me from moving forward, but actually pushes me back. I feel trapped, lost, confused, have no idea which way the path will take me. But after some time with my heroes present I pick myself up and try a new path. A new direction towards survival. And so I slowly start again. One foot in front of the other, slogging through the mud. Breath by breath, heartbeat by heartbeat. But then another wall, another obstacle, something else keeping me trapped in this maze. It is maddening. It is infuriating. And so incredibly frustrating. I feel so lost, so confused. Turned upside-down and inside-out. What’s up is down and what’s left is right. I don’t know which way to turn. And when I’m sure about the direction I choose, it turns out to be wrong. I’m beginning to think there is no right path. That there is no way out of this web. That I am doomed to spin in circles with no relief, no way back into the light.
I used to think we wrote our own stories. That our future was in our own hands. In a cruel twist of fate I learned that we really have no control over our destiny. How naive I was. It remains to be seen how my story continues and ultimately ends. I just wish it was sooner rather than later.
