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 in 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.

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Comment by Dina on January 19, 2012 at 4:51pm

reading this. i have had a few of these moments myself.  thank you for sharing.  i don't feel so alone. 

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