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 intesity 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. I smiled to myself remembering the clumsy awkward toddler he once was. The little boy who waddled, following behind my son Cody as they played 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 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. 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 alarming to myself, I fought diligently to hide my overwhelming sense of the loss I felt watching all my nephews approach their teen years. Age and achievements went together so well in their world. Where as age meant loss in the world for my two younger sons and I. It pained me deeply to not be able to completely rejoice inside for all the glory in my nephews world. I felt 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 room 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 postit note. Very simply he wrote some X's and O's . He then had managed to scoot in a desk chair 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 nephews beloved dog, Angel, that had passed away earlier this 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.

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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Comment by Andrea Cleary on November 29, 2011 at 7:35pm

Amen, Sister!

 

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