Every now and then I am given the opportunity to see my sons throw a curve to Duchenne. Rejoicing with what might be a seemingly small feat of muscle strength to the ambulatory world yet a very large triumph for my sons and I.
Yesterday shortly after dressing and lifting Cody from his bed into his desk chair on wheels I wheeled him into his bathroom to brush his teeth. A ritual he took pride in and was still able to perform daily with minimal assistance. I fixed his electric tooth brush up with tooth paste and handed it to him. Laying a hand towel next to him, I watched momentarily as he slowly moved his hand in front the motion sensors of his bathroom faucet. I stood there wondered for a second just how much longer he and Josiah would continue to prefer the desk chairs in the house rather than their power chairs. Carefully he held his toothbrush under the running water. Satisfied he had his task at hand under control, I could now concentrate on assisting Josiah with his morning hygiene. Shortly after I had Josiah lifted from his bed and seated him comfortably in his desk chair I returned to check on Cody. Much to my joy he was not only done washing his hands and brushing his teeth he was now attempting to etch his way out of his en suite, by propelling himself with his feet backward into the hall. I was thrilled this was still a physical capability for him, and feeling hopeful the he was getting a bit of muscle stretching in return with out my assistance. From the back of the chair I assisted Cody slightly over the threshold leading from his en suite. While most of the door ways though out our house on the main level had been modified to serve both of my two younger sons needs, this one still required a bit more muscle strength to propel by use of a wheeled office chair.
Cody now free to roam on his own worked his way back in to his bedroom. I watched as he paused slightly at his closet door reaching for a stretchy cord with a clasp attached. He diligently raised his arm to pull the strap from the door handle. With deep concentration he worked his fingers to maneuver the strap around his head. Leaning forward he draped the elastic cord around his neck. Not sure why he wanted the cord on I watched him continue to move. With a force all his own he managed to get himself positioned in front of his PS3on a shelf just at foot of his bed. I stood amazed . Cody was defying Duchenne right now. He was 20 and a half. Clearly arm strength was diminishing as well as leg. Cody was very limited with his ability to use his arms, yet there he was. Placing a neck cord over his head,most likely just because he could still do it. Using his feet to push himself around and feeling happy he could still manage.
I smiled as I recalled the past year. 2013 had been an eventful year for us. Yes it had had its up and downs. But we had made it through all of it. Not with out tears and some losses, and the end of the year has personally been difficult for me. But the year has filled me with great joy. Watching Cody graduate from high school taking the lead. As a Duchenne mom there are no words to describe the magnitude of joy I had as Cody personally accepted his diploma. My child with a fatal disease and a cognitive delay graduated with honors.
This year one day out of the blue Cody had told me just how he felt. He looked up at me and said "mom I have a good life". That told me all I needed to know. My son- at least right now- was happy. I felt relief. It was a year that still had its trying moments and hurdles for us to over come . But both boys managed to letter in adapted bowling at school. Make the honor role and attempt a few new things. Josiah and Cody went Turkey hunting, was successful at Salmon fishing. This past fall both also went bear hunting. Cody after only being out in the woods for 2 hours had harvested his own bear. Yes, clearly we had been blessed to have these opportunities. Memories of very special moments I shared with my sons. I felt good about the year we had had. I felt proud of what I had accomplished myself as a single parent without their fathers help at all. Despite the comments and negative rapport that had worked its way back to me, I had indeed accomplished more than I would have thought possible. Whatever was said about me did not matter. I had won the praise of my son and that was all that counted.