My boy

There are many things in this lifetime that we will never have the answers to. For our family, many of these unanswered questions happen to revolve around our oldest child, Ryan. Most of my readers know that Ryan was born with an incurrable disease called Spinal Muscular Atrophy (SMA). Because of this disease, Ryan has never experienced what it feels like to walk or move his body independantly of his 300 pound powerchair. But, in addition to not being able to walk, which is HUGE of course...there are many other things that he cannot do. As I was tucking him into bed last night I realized once again just how weak he is and how weak he has become. His disease is progressive and he will continue to get weaker and weaker as time goes on. It's something that we (my husband and I) try hard not to focus on or it will literally tear us up inside. As I was positioning Ryan's bipap on his face (a machine that he wears nightly to support his shallow breathing) as well as turning on his pulse-ox and connecting him to his feeding tube, he asked me if I could lift his right arm up. He said he had an itch in his left ear and he needed to scratch it with his right arm reached up across his body. When possible, he wants to scratch his own itches so rather than scratching it for him, I lifted his arm up so he could reach his ear. He then realized he was not able to scratch the itch and asked me to hand him a q-tip. (he has recently placed several q-tips in his cubby so he can easily access them without our help). I handed him a q-tip and he proceeded to try and scratch this itch again. Finally, he asked me if I would help him. So, I took the q-tip and scratched the itch inside his ear for him. He let out a huge sigh and again and again told me how good it felt to have it scratched! I have done this many times throughout his life. But, I have noticed his arms getting weaker and weaker over the past few years and have been asked to do this more often than before. I asked him how often he has to endure a horrible itch as he cannot reach the area of his body to scratch it himself. Apparently, most of his itches, he is able to reach at this point. But, I couldn't help but feel incredibly sad for my boy. He already has to do without so much and to not even be able to scratch an itch on his body!?!? ARGH!!! There are so many times that I just want to scream in frustration for my son. But, then I realize just how content he is with his life and I can't be too sad for him. I mean if he's not sad, then why should I be?? I can't say he never get frustrated with his disease and how much it robs from him. But, for the most part, he is content. He is an amazing boy for sure. I may never understand why life is the way it is. But, as I've said before so many times in this blog, this life is not forever. And there will come a day when my son will be healthy and whole and no longer confined to his wheelchair. He will walk and run free of disease! No, this life is not forever!!!