A Closer Look Back

Before I continue with the next part of my journey, I believe it is important to take a step back and explain in more detail the root of some of my early feelings and beliefs. I have mentioned how protective I was of my mom, but it is time for me to say more about that level of defensive caring I felt. You see, after we returned to Madison from our six week stay in NYC, my dad slowly began drinking more and more to help deal with anxiety and stress. When my sister was born with Down's syndrome, this only added to all of our worries. What I secretly wondered to myself was, could the mental and physical upheaval of my illness have caused both of these situations to occur? Could the underlying causes of Mary's mental development and my dad's entry into the world of alcoholism be due to me? I took on a deep sense of guilt remorse and responsibility for possibly bringing all this tension, grief, sadness and turmoil to my family. What could I do to help contain the disruption I may have caused?

This was the beginning of my need and desire to protect Mom from as much pain as possible. My goal was to make myself available to help with Mary, run little errands or do almost anything else needed to make her day run as smoothly as possible. Anything except clean the house, since my sister Kathie was always the queen of cleaning, so why not let that be her domain? I would try not to disagree with Mom or cause silly fights with my siblings. Looking back, I think I felt the desire to let her know through my behavior and actions how sorry I was for causing so much worry and concern. Being quietly protective was my way of earning forgiveness for all the turmoil I had caused to our family. Now, as an adult, I realize my limited powers of insight and awareness were due to the fact that again I was attempting to understand adult issues through the mind and heart of a child.

Mom and I developed a special bond through our many trips to New York, and all that faced us with each trip. She had to answer some serious questions from me, and she had to choose her words carefully so that she wouldn't frighten me with her response. There was a little boy who had become my friend over visits when our treatment times overlapped, and I had begun to look forward to seeing him each time I arrived. But after two consecutive visits without seeing him, I asked Mom, "Where is Timmy?" She had to delicately explain that even though the doctors had worked hard to stop his tumor from growing, they weren't successful. When I still was unable to understand what she was trying to tell me about Timmy, she had to again choose her words carefully as she gently explained that he had died. I was shocked by fact that his little white spot could make him die!! It took many tears, long moments of quiet thinking and many hugs of comfort until I finally comprehended that those little white spots could be extremely serious!
I never again questioned Mom about any of my fellow patients who seemed to be missing. In reality, as my level of understanding of the scope and sequence of retinablastoma increased, my level of fear also increased. My prayers to God became more urgent and my need to prove my worthiness also increased. My, my, so much for one little mortal child to balance...but my strong faith assured me that my prayers would be heard. Heard? I not only wanted my peas to be heard, I also needed to have them granted so that I could lead a life without cancer and without paralyzing fear!!