In this picture you see a boy. In this picture he is literally on top of the world. In this picture you see a care free child who appears not to have a care in the world. If you look closer that is still what you will see. However if you live under our roof you will see a much different picture. You will still see that young man who appears to be on the top of the world. Who appears to not have a care in the world. However if you lived in our house. If you lived our lives. If you lived HIS life you would get a much closer to glimpse of the personal struggles he is dealing with.
He leaving behind his child hood years and entering his teen years. These are suppose to be some of the toughest yet most fun days of his life. He is suppose to be hanging out with his friends. He is suppose to be loving life. Instead he is struggling with one of the biggest struggles he will encounter and will continue to encounter for the rest of his life. He has recently been diagnosed with muscular dystrophy. His world as he knows it or thought he knew it has changed forever.
It started with small struggles and grew bigger until the concern was so big it could not be ignored. The testing began. The endless testing, labs, doctors and finally diagnosis. His muscles are weak. They are trying to give up on him when he needs them the most. He wants to grow strong and be with his friends and not stand out. Yet he finds himself needing help with the little things. The things most of us take for granted. Opening a water bottle, squeezing something tightly, typing and writing. The things most of us do daily with out a second thought have now become the only things he thinks about. When will my hands fail me? Will I be in public? Will people notice? Will they laugh? Will they help me? will they stare? These concerns are all things he struggles with daily.
He has always been tiny and a bit weaker then those his age. I did my best to teach him that he will grow stronger with age and catch up. That it was what was on the inside that counts. That his day will come. Imagine my heart ache and tears when I myself learned that this was not true. HE WILL NOT CATCH UP. He will never be as strong as his friends. He will never be their size. As his friends grow stronger. He will grow weaker. Imagine my surprise when the doctor tried to tell me other ways for him to tie his shoes and button his pants eventually. I am still not sure I fully heard any of that appointment. It was like I was in a dream, watching from the outside. It was not a dream and we will not wake up okay. Things are different and I have tried to take the summer digesting this, accepting this, coping with this. Instead I have spent the Summer frustrated by this, sad by this, furious with this. Mad at the world, mad at myself. Feeling sorry for him and me.
I know this is NOT the way to move forward and as the summer days end and the school year begins I know its time to face our new reality. It was time to speak with the school and make more people aware of what is going on with him. It was time to try to make him aware of what is going on with him. I am not sure I have done a good job at this. I still find myself wallowing. I still find myself watching him sleep and praying to god to "fix this" I still find myself wondering how this happened to us and why us. Asking what I did wrong. He was just a kid, a happy kid who does not deserve to deal with this. A kid who has never wanted anything more then to just fit in. To just blend in. To be "normal"
Instead he has been dealt these cards. The cards of a body that is failing him. The cards of not knowing our future or what life will be like for him a year or ten years from now. Not knowing how fast his muscles will weaken. Only knowing there is NO cure and NO treatment at this time.
I am pretty sure he does not fully understand the seriousness of his condition. Why should I tell him? He knows enough for now in my opinion he knows this stinks and that his hands keep "freezing up" He knows its painful and embarrassing at times. Why does he need to know that maybe some day he will barely be able to use them at all. Maybe someday it will effect his legs, or worse off his heart. How do you ever tell your child something like this when the future is so unknown. How can I explain something to him that I myself do not understand and due to the fact that there is no cure clearly many others do not understand either.
It sure changes your perspective on life. It sure teaches you to cherish each day. To appreciate the small things. It teaches you to love your kids unconditionally and with everything you have. It teaches you that life can change with one phone call and one diagnosis. It teaches you that nothing is certain. It teaches you to appreciate life.
I am unsure where we are heading from here. I am unsure how we will be a year from now or what other functions may weaken for him. What I am sure about is that I will continue to love him with everything I have and support him. I will love him for the boy he is now and for the man we hope he will be some day. I will pray daily for a cure. I will teach him and remind him that he is special. I will laugh with him and cry with him. I will be his mom.
