In the middle of treatment for her cancer, Claire decided she wanted to be on the MTV show True Life. She wanted to increase awareness around childhood cancer and she wanted the world to be able to see what it was really like for a teenager to be faced with the challenges of intense chemo therapy, radiation, surgeries, and the constant, lingering possibility of death. She sent in an application online and one of the producers called her back. She was so excited. But in talking with the producer, she was informed that her particular story did not fit into any of the specific topics for upcoming shows. The producer acknowledged Claire had an amazing story to tell and was impressed with the candor, vulnerability and maturity which Claire revealed in that conversation, but politely apologized and that was the end of that.
Even though Claire was disappointed at first, on more than one occasion during the very difficult times to follow, we both looked at each other with mild relief that no cameras were following us at that particular moment. No one to hear our harsh words with one another when we both had been pushed beyond our limits. No one to hear her wails of pain and anguish as she simply tried to go to the bathroom. No one to see her standing with her walker, trapped by her own vomit. No one to see her slowly lose her ability to walk, speak, see and hear.
But then again no one was able to witness her amazing fortitude and stamina as she sang in every choir concert, painted masterpieces in her art class, dressed up as Voldemort for the latest Harry Potter movie, traveled to Washington, D.C. with her choir and New York City with her siblings, and to Disney World with her family for her Make A Wish trip where she rode all the scariest roller coasters more than once, laughing and joking and living life to the fullest even with her crooked little smile which was a result of the cancer invading her brain.
So today I am filled with regret and sadness that her story was not documented on film. Why didn’t I suggest that we do our own “True Life” and get a video camera that she could use herself to show the world her perspective of what was going on? I would give anything to be able to see her living, moving image once again. I have so very few videos of her. I was so focused on keeping her alive I never allowed myself to entertain the thought that one day she might not be here and videos and pictures would be all that we had left. But at the same time I fully understand why we didn’t. There was no more room for anything else at that time. Fighting the cancer, keeping up with appointments, living life, being together, fighting my own cancer, trips to clinic, hospital, school, making time for family and friends, playing with the cats; this is what filled our days and at the end of each we would collapse exhausted into bed where we were unable to sleep because of all the worry and trying to wrap our brains around what was happening. And yet now, today, I wish we would have somehow been able to make the room because I can pretend that if we had it would bring me comfort and lessen the pain of my loss. But deep down I know that this is not possible and no matter how many videos I would have to look at it would never be enough. Because the harsh reality of our True Life is that cancer stole my baby and I am left to hug and kiss her only in my mind and dreams