Cody told me today" not being able to walk sucks".
Yes, I agreed, it did.
I saw some new anger in him I had not really noticed before. He wanted new batteries for his WII remote control, which just happened to be upstairs in the kitchen. I asked him to wait while I finished assisting his brother. Josiah had been building with Lego's and was feeling his own sense of dependency from Duchenne. He had been struggling to open some new packages of blocks. Lacking the strength to pull open the plastic sealed bags by himself, I was needed. Cody strapped in his Easy Stand 500, a machine that helps him to stand, waited. Throwing his remote control to the floor and using some more verbal phrases he let me know how much more it sucked having weak muscles and that he wished he was stronger.
Wow, I thought while I fetched him fresh batteries, I had not heard him have such anger towards his disease before. I had heard him in the past become sad or frustrated but anger towards his disease was new. I too also wished with everything in me that he could walk. Two new batteries later, letting go of his anger he returned to his game. I still felt troubled. Anger was normal and necessary but, it still made me feel helpless toward him at those times.
I went back to folding my laundry, but anger felt as though it was creeping up inside me now. I peered out the front window and watched as some children slid down the snow covered hill across from our house. I smiled for a moment as I recalled the days when I walked to that hill with my boys. Josiah perched on my hip, while I pulled Cody on a sled. Zach running ahead of us dragging his own sled. I climbed the steep icy hill toting Josiah in my arms and Cody on a sled tied to my waist, up the hill we went. My feet side ways to keep from slipping, very determined to let my children go sliding. Down we would slide, Cody in the front, Josiah nestled in between us. It felt good to remember. It felt good having memories of a time that did not present us with barriers I could not brake through.
I came back to now. A Little voice could be heard calling me. "Mom, I dropped Lego's. Help I can't reach them". I was needed again. I helped Josiah retrieve his Lego's. The anger was creeping back inside of me again as I heard Cody attack being weak again, on behalf of his brother. I decided today was our angry at Muscular Dystrophy day. I would join Cody with his anger towards this disease. I would sit down and write my feelings out. I would list all that made me mad or feel helpless in someway. I would acknowledge they existed and hopefully let them go.
I was not prepared for the tears I had apparently been building up. Nor the flood of feelings that erupted. The one thing I did know was, this disease always present in my life was also always taking.
I thought back to when my brothers were alive. Struggling with this same horrific disease. I remembered days when they would cry from being frustrated, angry or bullied. A neighbor girl one day smeared chewed bubble gum in my brother Richards hair. Forcing him to get his beautiful blond curly hair shaved off. I thought of the day when my brother George had a brick tied to his leg by another so called friend. He was left alone unable to walk and unable to remove the brick. I remembered the days when my father so depressed and unable to cope with his sons crippling would drink until he passed out. I remembered my mother so tired from lifting and carrying them would collapse in a chair exhausted. I thought of the days when my sisters and I would try to help with lifting and bringing them to the bathroom. I recalled the fear we felt when they would get very sick. I let the painful memories of their deaths surface. I let loving memories and heartache flood me.
I also remembered hating this disease too. Just like Cody was feeling now. It robbed, it stole, it showed no mercy. Never ceasing in its progression. It caused loneliness, anger, depression it took with out boundaries, it killed. I went back in thought to the painful day when Cody was diagnosed. Then to the day when Josiah was diagnosed. Times that I had never felt more alone in my life. I cried. I thought about the pain it added to my crumbling marriage. I thought about the pain it brought to all three of my sons. The sacrifices my son Zach has had to make while I care for them as a single parent. I thought about all the relationships it affected in our lives. I sat and I cried. I thought about the 480 days ago when Cody stopped walking. I recalled the last time 6 months ago when Josiah was able to walk upstairs. I cried because last week I dropped Cody while lifting him. I wiped tears away and thought about the hoyer lift that only works on one level of my multi -level home. I cried because it was becoming increasingly harder to take my sons any where alone. I released tears because I was afraid to think past today. I was angry because I knew the disease was still here to take more. I cried for Cody and Josiah, for the life I knew they would never live. I embraced my pain, reclaimed it and sent it back into the deepest part of my soul. Hoping to not have it surface again for a very long time.
Then as if like clock work I dried my eyes and went on with my day. After all, I still had to be a mom. Assist my boys, be their arms and their legs. Lift them, make meals, clean my home and most importantly let them know they are loved and needed beyond words. I had to once again put on my smile, hold my own hand and offer something positive to my sons, me. The best me I can possibly give. The me who knows; fear, heartache, compassion and love.