I created this blog to have a voice. To stay current I have tried to write at least one entry a month. It has been 4 months since my last entry. I have lost my voice. I am encased in battle armor like an ancient warrior waiting for the next fight. The armor is keeping me safe. Protecting me from that deep seated soul pain I don’t want to experience.
I stay home, I stay silent. Finger to my lips, throat emitting an inaudible ssshhh sound. Don’t talk, don’t cry, don’t mourn.
This morning the armor cracked a little and I let the pain of childhood cancer days creep inside. I was minding my own business, watching “The Voice” on television. One by one the songs chipped away at my armor and I started to cry. The words,” like a movie, like a song” cut the deepest and I was lost in memories of childhood cancer. Little smiling faces. Each child’s face flashed before me. They were young, they were innocent, they were precious.
How do you not remember them? Perhaps you didn’t see them. I did all that I could to improve the quality of life of children with cancer and their families and in my efforts I became mentally and emotionally unhinged.
Look at me. Sitting here crying, in wonderment asking you how you don’t know my pain. There is an indescribable ache in my chest and it pulses in rhythm with my heart.
I have a story of my own family’s journey with childhood cancer. I was 30 years old when my 2 year old son was diagnosed with childhood cancer. My son is a 29 year survivor and faces challenges with the late effects of cancer treatment. He has a brain injury from radiation to his brain and this spring the late effects of Adriamycin on his heart was added to the mix of medical challenges.
I wake up every morning and “the movie, the song” is now the only life I know. There is a clear demarcation in my journey, there are two paths; life BC and life AC. I had a life before cancer and it was ordinary, it was fun, I had a happy heart and I lived free. My life after cancer has not been ordinary, my brain chemistry has changed, I have depression and PTSD, I live in sadness and fear and I do not live free.
I still see their faces, I remember my voice was loud and I fought for them. When I asked you to help children with cancer, did you? Did you look the other way because it’s too hard to look into their story?
I am changed and I have lost my voice.
In spite of my battle fatigue I will move forward in faith that God has a plan for me. I will strive to live in a spirit of hope, charity and love. It is my prayer that after cancer days are lived with purpose, and I hope my voice is heard.