More thoughts worked their way through my unsettled mind. It did not seem to matter that even with age most of us still fought to find our place in this world. Some of us still struggled to find a Comfy place that could carry us off, away from our current dilemmas.
I was thrilled to have a few days to spend just with Josiah. A week away from the city at my sister Marie's new lake home. Nestled in a small town up north. Not only did we hope to take Josiah out for a pontoon ride, but he was excitedly hoping, to visit a casino or two, while away. Yes now 18, new adventure ideas danced through his beautiful mind.
However I could not help but be pulled into the thrones of what this new milestone meant in another way. Age in the devastating world of DMD. A world where aging was not a friend or met kindly. It introduced more adaptions and machines for daily living. It represented more loss of functions and less ability. More importantly it brought the realization of an end becoming nearer. I wanted ardently for 18 to be the the turning point that meant the beginning of a new chapter for Josiah. I wanted it to mean, graduating from high high school like his cousins. I wanted it to mean hanging with friends, asking me for my car keys. Getting a summer job, even dating. What I did not want it to mean was learning how to use a bi-pap machine, researching for an arm assist or having his power chair resized and fitted with new adaptions that would aid in his continual muscle loss. I most importantly did not want it to remind me how much little time might really be left. A reality that tore at my heart.
I chewed another pretzel smothered in frosting, fighting to suppress my feelings of sorrow and loss. I hated this disease with every fiber of my being. I was helpless in our fight against it. And despised the control it had in every aspect of our world. My whole life was and has been consumed with surviving its viscous attacks, first with my brothers and now with my sons. Helping my sons to thrive was now my only ambition.
I disliked the representation of aging and right now wanted nothing more than to ignore it. If only it could be that simple I thought to my self. But even packing my son now for a few days away meant packing machines that helped him thrive. Pre-Planning was essential to his stay anywhere, even for a few hours.
I felt anger encroaching in my thoughts of how hard life was quickly becoming for my 2 younger sons and all the boys like them. I needed a deterrent and fast. I had long ago accepted this was our world. As hard as it was, pure and simple, fitting in to an ambulatory world really did not matter anymore to us. I was done trying. We had long ago moved past that stage. I needed to concentrate all my efforts on the special life I had worked so hard to create for my sons. Because the reality of it was, we were indeed different. I embraced marveling at all that my nephews achieved turning 18. But right now I would run with the wind to help Josiah live out his own coming of age.
With my last bite of a frosting smothered pretzel I decided that Yes I did posses the power to put my restless thougts to rest for now. I would help Josiah have his own amazing year of turning 18.