I simply did not make it to Cody, in time. I sensed the disappointment, even be fore I opened his door. He laid there with his head turned as far as he could, away from the deposits that now shared his bed. He laid there, half on his side desperately trying to assure me he now felt fine. Thankfully, after assessing him it seemed most likely to be a case of acid reflex. My anxiety level lessened, slightly.
I had heard his call over the monitor, but I was slow in my response. I had moved like a snail up the stairs, because I suffered from my own fatigue and personal weariness, of events from the prior night. I felt a bit annoyed with myself, that my haste in coming to his aide, had caused Cody to lay in extracted composits from his stomach. I needed Cody to know he was no more to blame for the mishap than I. We simply were fighting something much bigger than the two of us, and all we could do was cope with each and every unfortunate situation as it arises. What we were faced with now, was the task of getting him out of bed, with as much ease as possible and cleaning him and his bedding up.
I repositioned him slightly, while trying gently to pull his pillow case and sheet from underneath him. His big brown eyes followed me as I worked. Quietly he whispered to me "sorry mom." I could hear the sadness in his voice. He needed reassurance, that I was not upset by the unpleasant start of our early morning. My heart ached for him. I understood the sullenness the moment brought him. He was trapped. Imprisoned in a body that left him helpless, especially at moments like this. He was living with a disease that showed no mercy and that fought to strip him of all pride, fraying any shred of dignity he may have somehow managed to hang onto over the years.
I felt worry and exhaustion both grasping at me. Not to mention, anger. I was happy Cody had not choked or inhaled any of the vomit. Yet, I felt my anger at this debilitating disease, that never ever lets up, grow even deeper with in me. This disease continually stole from us, without hesitation. As I worked to clean up Cody, a silence embarked on me. It was becoming all to real, I was losing in this fight. Right now, I could not bare to have Cody see my own surrendering, to the devastation Duchenne presented to our world.
For the last few weeks Cody had been questioning me regarding the use of drugs, depression and suicide. He had made several comments to me, letting me know he struggled himself with finding an inner peace. He was also angry that his disease prevented him from having the opportunity to act out his anguish, if that was what he so chose to do, in regards towards losing his Independence and accepting all the limits his world held. Simply put, he was feeling a deep sense of loss and was struggling with his emotions. His disease, he said was stopping him from acting out his hurt. I embraced the fact he was honest with me. But my heart broke, for the pain he carried with in.
I had spent a good part of the night struggling with my own acceptance, of letting go of old hopes and dreams. Feverishly, trying to make sense of this journey and the direction I was now choosing to follow. Desperately, now as I attended to Cody's needs, I wanted to help us both feel some peace of mind. But inside, I had nothing. I was worn and felt beaten down. I smiled and did my best to comfort Cody. I did somehow manage to help him to move past his battered pride and sadness, for the moment.
But, as the day wore on it was my eldest son Zach, with his strong embrace, understanding and his loving words that helped to pull me up right, when I needed it. So for right now, in this life today, when it comes down to living and thriving for me and my sons, I have no time to be anything other than strong. Because, nothing is ever worth the cost of giving up.