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Friday, January 13, 2012

I am not sure how long we sat there together. Me trapped underneath my eighteen year old Cody. His immobile body laid across my hips and chest. The more I squirmed the more I could feel our bodies sink in to the crater that was forming beneath us. Gently I tried to roll Cody to his side, the effort seemed almost useless. He was completely unable to move his legs with out help. Help, well that was a thought. Help from where and what. Across the room in his desk chair sat my youngest son Josiah, calling to us, asking if we were okay. A victim of Duchenne also. Josiah, unable to offer nothing more than his verbal support. We appeared fine, just momentarily trapped. Oh, I just wanted one day with out hurdles to jump over. One day that did not leave me feeling helpless or my son feeling imprisoned.

I thought briefly about the up coming strong man power/lift show we planned on seeing in a day. Clearly the human body could be trained to do amazing things. Training was not something I had but, strength and courage I knew about. Today I was going to be called to perform a little more than the usual, right now home with my sons. It was going to be up to me to get us out of this position. I knew though the hard part was still to come. I would eventually get up but how would I get Cody up. The image of my younger sister trapped on the toilet seat with Cody on her lap flashed through my mind. It was an awkward moment that could not be replayed if we tried. While visiting her over Thanksgiving she had assisted in helping me with Cody in the bathroom. Somehow she managed to back into the bathroom with Cody in her arms, and landed on the seat holding him. We laughed so hard, they had to sit there momentarily until we regained our composure, so I could lift him off her. Yes, this now was one of those moments.

I ran my fingers through Cody's hair, and gave him a hug. "I am going to have to slide from underneath you" I told him. Preparing him for some more shifting of his body. I was happy he only weighed 140 pounds, easily this could have been harder. Cody attempted some more wiggling. At the same time I pushed with my feet freeing my slender hips out from under his. We were making progress and my small frame seemed to be sliding out from under him at last. we would salvage this night and laugh about this together just like Thanksgiving I decided. This was a good week. Cody had been chosen as the Wish Kids Network Hero of the month. I was determined to show Cody together we can do anything, and that Heroes never give up.

Finally freed I knelt down next to Cody. Smiling he told me it felt good to be stretched out. I was pleased he was comfortable, relieved that our tumble had not harmed him. The question now was how would I get Cody up and out of this over sized bean bag to a chair. Pulling and turning him I helped him to sit up. Fluffing the cushion around him until he sat straight and balanced. Handing him the wii remotes, he was now ready to give this new seating a try. I hid my fear. Just pulling him onto that beanbag bed had caused me to become trapped and somehow I alone I would have to get him eventually up on to a chair later.

I finished lifting and positioning Josiah in his recliner, who can not be lifted by the hoyer because of his spinal fusion surgery. I then Stored away the useless transfer board that had gotten us into this situation. It was the board that caused me to loose my grip on Cody in the first place as it slipped beneath him. So much for saving my back. Frustrated, that once again all I want to do is care for my sons and I hit a wall. I am not asking anything from anyone. I am providing and caring for my sons alone. Devoted and willing to go to what ever level, to do my job.

I knew I had two choices, somehow drag Cody from the cushion (which I can not move because that alone weighs 60 lbs and is very wide,)to his bedroom and use the ceiling lift to get him up, or figure out away to safely take him off the cushion and use the hoyer lift. Not so easy. I have furniture to move like a couch, to get the hoyer lift close enough to him, once I get him off the cushion which has him encircled in a deep sink hole. Quite frankly I want the hoyer lift to be my friend, to make all things accessible. I want it to be the answer for Cody. But it can not pick him up from the lovesac/beanbag, which now he is beginning to like. Also, it can not safely put him in his reclining love seat. The footings do not allow it to come close enough or straddle that piece of furniture. So, to all the remarks I will likely hear about regarding lifts, if I want my son to be imprisoned and only use his wheel chair well yes, than it might be our answer. Safety is first but freedom is so important to us.
I am determined to not take anymore from them, even if it means me having to be more than I am.

P.s. we did have a sweet laugh together during dinner. Cody asked me if I started lifting weights like the strong power lifters would I then be able to lift him. Hmm, I am thinking on this.

Sunday, January 1, 2012

We walked together quietly for sometime, our fingers entwined slightly. The moon glistened on the newly fallen dusting of snow. I looked up at the stars that brightly lit up the night sky. The last year had been very tough on us, especially Josiah, it made me feel stronger to have him with me now. Some how he always helped me find peace in my broken shaken world. His hand gently squeezed mine. I stopped and looked at him momentarily, I wanted to know why. Why, was there so much pain in this world. He looked at me as a tear slowly rolled down his cheek. Pulling me closer he wrapped his arms around me. "I feel your sorrow" he sobbed softly into my ear. I hear the cries, I am with all of you always. I wanted to pull away. No, that was not what I wanted to hear right now. I wanted more from him. I needed to know that this was not all in vein. That some how he would end the suffering. He held me tight. I wanted to feel special, I wanted my prayers answered. Most importantly I wanted my sons to live. I wanted to end Duchenne. I let myself relax once again in his arms. "Trust in me" he whispered.

Some how he knew all my fears. Before him I stood broken, lost and alone. I surrendered and let myself sob in his arms. Today was no different than any other except that for these fleeting moments I did not have to be strong. I could bare my soul, unleash my fears. I had arms to hold me up. He raised my face our eyes meeting. Gently he wiped my tear stained cheeks. I felt myself enveloped in warmth. He comforted me in ways I could not explain, helped me to trust in myself. Yes, I knew why he came to me today. For that reason alone I knew I would not let him down. I could feel his heart beat as he held me. In a soft whisper he simply said "it is not time yet, soon, for now you need to be strong and have faith." He was so real so alive, with me right now. We walked some more then stopped. Our time together was up. It was time for me to go back and be all that I needed to be. I knew I had more challenges ahead of me to face. I understood also this pain that overwhelmed me at times would be with me throughout my journey. I would weep from heart ache but, I would also know unconditional love that few would ever know or understand. Love that God has intended for me to feel.

"Like you I have wept in pain and also felt joy" he said to me as he turned to leave." I am with you always, when you feel the most alone I am at your side." It felt good to hear those words again even though inside I wanted so much more. "Jesus" I called out to him as he began to walk away. "I will not give up even when it seems impossible." He smiled and then was gone. Inside of me his warmth, and touch lingered. I smiled at the two beautiful bright smiling faces that were waiting for me, for in them I could still see Jesus and all the love that was meant just for me.