myshininglight.com Blog

Upon thinking about how I should have done this a long time ago, I realized that I was not ready before now. I spent the last few years sorting things out, and taking care of my little family, so we could heal. Hindsight being what it is, I am seeing how I have gone through this odyssey we call grief just as I was meant to. I have progressively risen to different levels of healing as I go. Of course, I would prefer to know I am doing this as I go, but for whatever reason, I guess I am not meant to know until I have moved through it.

When I posted the MySpace page (http://www.myspace.com/leoraslegacy) a floodgate was opened of others affected by this disease. People from everywhere are contacting me. LMS attacks only hundreds of people, but the ripple effect is enormous. Each one of those hundreds has many people who love them. I realized this is not a futile cause! Awareness is not hopeless!I’ve spent the last several weeks trying to analyze the intense emotions I have been feeling. At dinner the other night, Fran and I sat across the table from each other, and he asked me how my page was going. My eyes immediately welled up, and I felt as though I would burst. The best I could explain to him what was happening is that I feel this tremendous power inside of me. My body buzzes, and I feel so emotional. All of these people are reaching out to me, and I FEEL them. I feel their love, their strength, their fear & frustration, their anger, and their need to reach out to me as if I am their hope. 
He asked me if this power was a good or bad thing. I told him I wasn’t sure, and that it scares me to death. He said, “Maybe it’s divine.”

I instantly knew what he meant. This man that I share my life with struggles with his own relationship with his own higher power, but I knew at that moment that underneath it all, he believes. He had probably made the most profound statement to me that I had ever heard.I am not a religious person. I am not a Christian. I am spiritual – VERY spiritual. I choose to call my universal power God in most circles, so everone can relate to who I am speaking of. I don’t believe that we have to believe in what anyone else tells us to. But I do think we have to believe in SOMETHING if we want to heal.

This new rush of emotions has been quite overwhelming. Ever since Leora has been gone, I have been committed to helping others, whether it be grief support, fundraising, or anything related to the issues close to my heart. I have spent the last few years helping others heal from grief, especially those who had lost someone to cancer, and those who have lost children. What I stopped short of, however, was helping the people who were actually afflicted with the disease, or the children who were dying. I could volunteer for Make-A-Wish, but could not meet the Wish Kids. I could spread the word about LMS, but I could not become personal with the people who have the disease.