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Monday, November 28, 2011

I marveled at the very intense expression on my nephews face as I looked at the photos of him running in a track meet. With his lips half curled, caught in a snarling grin, I could almost feel the intensity of his attempt to catch up to the runner in front of him. His long sleek limbs, stretched in a paused motion, defining his athletic toned muscles pushing against gravity. I smiled to myself remembering the clumsy toddler he once was. The little boy who waddled with a silly half frown on his large bawled Charlie Brown head, following awkwardly  behind my son Cody, as they played together when they were very young.

Desperately I wanted to be enveloped in my sisters joy as she shared her photos with me. Inside I struggled. Feeling almost embarrassed that I secretly wept looking at his strong young healthy body. As happy as I was for my nephew Blake and his mother at all his athletic achievements, I could not help but quietly mourn the loss I shared with Josiah and Cody as their muscles weakened daily. Damn, I hated Duchenne. What she shared with her son tormented me in the most covert way. I fought hard not to let the adolescence of my nephew remind me of limitations that were now apart of my sons world. I delighted as best I could in sharing with my sister different events that surrounded our lives. While she told me about track meets, Lacrosse games, and Blake learning to drive, I spoke of Dr. appointments, Specialist  and swim therapy.

Why was it, I wondered that the holidays we shared as a family somehow often left me feeling awkward, and somewhat inadequate, as a human. Like somehow, I just did not measure up to the world around me. I was with family that I loved and family that loved me back. Relatives that cherished my sons. Yet, I struggled with being a single mom next to my happily married sisters. I struggled with feelings of helplessness when maneuvering my sons outside our home. Almost alarmingly  to myself, I found myself fighting diligently to hide my overwhelming sense of the loss I felt, watching all of my nephews approach their teen years. Age and achievements went together so well in their ambulatory world. Where age meant loss in the world I shared with my  two younger sons.. It pained me deeply to not be able to completely rejoice inside, for all the glory in my nephew's achievements. I felt a slight disgust with the anguish I tried to bury in me. Somehow, I knew I had to set myself free from the hold I had allowed Duchenne to have on me, once again.

I entered the room where my Josiah and Cody had been playing at my sisters home. We had been visiting for Thanksgiving weekend and she graciously had given up her bedroom for my sons and I to share. There waiting for me was my simple joy to pull me back. Back to the loving world I shared with my sons. Cody had manged to reach for a post-it note with his very limited strength.    Plainly he wrote some X's and O's . He then had managed to scoot in a desk chair on wheels across the room to a near by bureau. Out stretching his arms  he attached it to a photo sitting on my sisters bureau. The photo was of my sisters beloved dog, Angel.  A long haired tailless shihtzoo   that had passed away earlier this past spring. His note brought tears to my sisters eyes when she followed me into the room and saw it. Cody had touched her deeply with his very sweet gesture of love. I stood next to her sharing silently in the realization of the magnitude of effort Cody had put fourth to perform this gesture of love.  He had managed to use limbs  that  barely had any muscle strength to propel against carpet and defy gravity.

My sons may never run in races or play sports. While they watch their cousins strive to be first or the best in sports they will battle in a fight for their life, against a disease that shows no mercy. There cognitive delays will be another constant struggle for them. I will most undoubtedly continue to hit low moments that will rip at my heart and often leave me feeling broken and beaten. But with that I will also be rejoiced in pure amazement at the acts of love my sons will willingly distribute for no reasons other than to express and share love. This Thanksgiving though I am so thankful I have once again been blessed to see beauty in such small acts of kindness.

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