“I can never die, or get sick or get old”
-Stephanie
When these words came out of my mouth I was met with the harsh realization of what it was that I was saying. Who say’s that? What does that even mean? For me those words were a symbolization of a broken person. In so many ways I am successful in life but in my journey with my son and his Autism, I have yet to feel like anything less than a failure. A broken person. Broken by the understanding that I may always have to care for my disabled son. The understanding that he may never be independent. Is it negative thinking? No. It’s “real” thinking, it’s statistical thinking, it’s scientific thinking. It is thinking based on the cases, the numbers and the results. It isn’t based on negativity or feeling sorry for myself, it is based on what is real. What is true and what is possible. It is possible that he will never be capable of independent living. That is crushing for me. It causes me to feel like I can never leave his side. Can you see where those words at the very beginning of this post come from?
I ask myself several times a day if I will ever be able to live life normally or is this just the beginning of what will always be. My life’s energy is spent on my children and being sure their needs are met. This probably isn’t normal or even healthy but its what my life is about right now. I often wonder once my son’s biggest advocates are gone, what will happen. His father and I are his number one fans and always in his corner but when we are no longer here, what will happen to my child. Children with Autism grow into adults with Autism. It’s more acceptable when they are little and excuses are made for them and some people overlook the behaviors but once they are older and become adults, people are sometimes way more judgmental.
Parents don’t usually think about their own mortality or the lives of their children so early in life, but when your world is rocked by a disability or diagnosis you begin to question everything you have ever known about the world. Suddenly the world isn’t such a familiar place. Things don’t look the same, smell the same or taste the same. I have no other way to emphasize the difference that takes place. Everything you know is just gone. I feel like I am learning everyday. I have forgot all I know and need to start over. After all, this is a new life and this is a new way to live life.
I find that I am more often a ball of emotions than not. I can be at the grocery store shopping and trying to find everything gluten-free and instantly I can feel the emotions rising to the surface. The frustration of not being able to perfect the “Autism Diet” begins to boil beneath my skin. I become angry that I even have to do this. Why am I even here having to do this? It’s painful. I find that I have to quickly collect my things and my tears and leave the store. The strangers around me won’t understand, how could they? They will think I am simply crazy for crying in the middle of the freezer section of the grocery store. They won’t understand the fact that I am overwhelmed from lack of sleep, an intense schedule, a million doctor appointments and little support. They won’t understand the need to cry over my inability to find this product in a gluten-free form or why it is exasperating to have to buy two of everything. They won’t understand and if they did they would still never know why I am crying. A few weeks ago, I was in the steaming hot shower and it was the first time that day that I was allowed a moment to myself. In that moment, I was able to do all my thinking from the day. I don’t know if that was a good thing or bad thing. The longer the thoughts began to run through my head the sadder I began to feel until eventually I found myself in tears. I allowed all of those emotions to find their way out through my tears. It helped me quite a bit.
In the days that followed I found myself extremely emotional and one night while having a deep conversation with my 8 year old daughter, I had to fight the urge to ask her a question that had been on my mind for weeks. I could no longer fight the need to ask. “Mya, you always take care of your brother no matter what right?” Is that even a question? More like a suggestion. She was quiet for just a moment and then she replied, “of course, I love him and I will do it and I will enjoy it.” I found myself so overwhelmed at her response. It was both scary and reassuring. Now I could finally die, right? Now that when my time here on earth comes to an end, I knew that she was going to carry on my work. That was the most reassuring feeling, but then the thoughts of the responsibility came rushing in. All the things that it is going to take and all that must be sacrificed popped into my mind. I don’t want that for her. I never have. I want her to live her own life and enjoy it. To go to college, get married and to have a family of her own someday. How can that involve caring for a brother? Would her quality of life be sacrificed by my requests or suggestion. How could I ask her to bare such a burden? It didn’t feel right but I felt desperate. This was one of the only people that would always understand him and love him. And yes, it is very early to be thinking about the end but when you have so many things to worry about these are the thoughts that run through your mind constantly. Especially because tomorrow isn’t promised to anyone, the only thing promised is death.
and still….. I can’t die, I can’t get old and I cannot get sick! I just can’t.
xoxo
Stephanie Says... 