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Wednesday, October 13, 2010


I listened as a friend told me about how much he was enjoying the football season and his son playing. He shared with me the joy he felt watching his son play quarterback. Giving me highlights of the most recent football game, proudly he spoke of how well his son played his position. The force, skill and strength his son was developing left him with immense joy. I listened happy for him, as he talked to me about fitting the boys in their equipment and the excitement all the boys had as they practiced for their games.

Hours later driving home I could not help but think about my friend suiting his son up for football. I could not help but think about the differences in our lives. While he watched his son run, I pushed both my sons in wheel chairs. While he helped choose the right size equipment his son would need for this season, I refitted my sons in AFOs and had their wheelchairs resized. While he tossed a football back and forth to his strong son, I picked up legos off the floor that slipped from my sons weakening grasp. As parents I was feeling we had so little in common in the care of our children. I listened to him beaming about how strong and fast his son was for his size, wanting to feel joy for him. However, inside I was hiding my fear that my sons were beginning to become to hard for me to lift and carry. While he went to practice with his son, I took turns strapping my sons to a machine that would help them stand. He watched from the side lines with immense joy that his son was developing muscles. I watched in horror daily as my sons showed signs of more weakened muscles.

As parents we shared the same kind of love and admiration for our sons. Yet, in reality our parenting was so unalike. While he helped plan strategy with his son for a game, I would be encouraging mine to try to use their almost useless limbs just to feed themselves. while he helped to condition his son for another season of playing ball, I would work hard stretching the limbs of my Josiah and Cody, in hope to preserve strength. I cried alone in my thoughts driving home that evening. I had sometime ago accepted all the challenges that lay ahead for my sons. But this pain was new to me. The feelings that were bursting from me now were different. I was happy for my friend and his son for what they shared. Yet inside, I was being reminded of the pain and loss my sons and I faced each day. I was happy my friend wanted to share with me how proud he was. I fought to control the tears that fell freely down my cheeks. Wishing I was able to find a comfortable way to happily share the fact that my Josiah took five steps today while in the support of my arms. Find words to describe the magnitude of strength I felt managing to assist Cody in the bathroom by myself. Annoyed at myself that I was once again letting this devastating disease hold me captive to my unrelenting fear I pulled my car over and sat silently. I wanted to see my sons have their moment of triumph at the level my friends son had.

After sitting for sometime alone with my thoughts, slowly I started my car again. I knew I could and would learn to accept this too. In time I knew this reality of loss would lessen. I would find courage to share in the joy that my friends shared with me about their own children. I would somehow find away to overcome the constant reminders of the challenges we face daily. But for now, I would allow myself the need to be comforted from the grief that had attached to me. Tomorrow I would continue to sing praise for each attempt my beautiful sons made at using their weakened muscles. I would embrace the fact that I did not have a section to sit with other parents and cheer on my sons, because I stood along side of them.

Soon the season will change again, a new sport will start for many. For us the same game will continue. The strategy unchanged because we have just one goal, to have another day together filled with hope.

Tuesday, October 5, 2010

There was a time when I packed my dreams away. I felt fear surround me. Afraid of the unknown and tormented by what I knew would be the future. Unable to look past the pain that had become so much apart of our complicated lives. I was consumed by desperation and destined to keep hope alive. I had seen death. I knew the horrific pain Duchenne brought to the lives of its victims and their families. I knew its grasp only tightened as it progressed to complete its mission. I lived in the shadows of despair watching the unrelenting destruction of human life. Helpless and overwhelmed, in silence I surrendered to tears. I gave in to fear and sorrow.

That was my then. My time when fear over took my strength. A time when I was so afraid. I thought that I had reached the end. Overcome by a desire to face the challenges that lay ahead of me and my sons, I have found my strength. This is my now. I am living in the moment. I am facing my fear. I have left the past behind me. The past that once pulled me down, causing me to doubt myself. Now grasping the love and strength that surrounds me. Looking in the eyes of my sons I have found the courage I never had before. I have found away to be the me I need to be. Gone are the shadows that I use to hide in. As I look around I can't believe all the love I see. This is my now, this is the moment I will give my sons.