Sometimes when I have a difficult day I imagine sitting in front of a tall window dressed in sheer covering. The sun is amber and the wind is trickling in the crack of the window to disturb the sheer. I imagine the blue sky beyond and feel the warm breeze rise up my feet. It pulls at me and dares me to chase. I could run barefoot until I could run no longer. I would then lay back and watch the clouds float further than I could ever go. It would be quiet, it would be peace.
I love nature but find it hard to leave the comfort of my house. It has been hard to handle all my children outside the home with my special needs son. I never know when and what may set him off so it is less anxious for us both to remain here. I save my dreams for days when I have helping hands. There are also dreams I may never fulfill. These dreams are simple but it feels like they were taken from us by a thief. Taken by a greedy disease with it’s fear and unpredictability. I want a life back and it will never happen. I can try to be optimistic, but it won’t change the facts. I grieved for the life my son will never have and now I grieve for the life we have left behind. It sounds selfish but it’s true. Disease has a grieving process very similar to death. Maybe I have yet to reach acceptance.
This window I dream about is something I have been escaping to since I was a child. I had found that I had the ability to escape in my mind when my body could not. I hope my son can figure out how to do the same. I hope he can find a place far from his sometimes sad reality. He will never know a day without medicine. He may never understand why he must live with this burden and I may never be able to explain it to him. He just doesn’t understand but it doesn’t mean he doesn’t struggle because I assure you he does. That is a hard pill to swallow, even for a faithful person. He has purpose and meaning. His life has already made differences, although he may never know.
For all he is, it makes my heart hurt to know that I cannot provide him all that he deserves. I can’t provide him a beautiful day in the park if his disease won’t allow me the ability to help him enjoy it. I am angry that so much has been taken from all of us. I have lost my identity in this disease right along with him. I didn’t want it to take over my life, it just happened. I have to think about it every day. I think about it the four times a day he gets his medicine. I think about it every time he gets on a bus and isn’t able to attend school with the peers in our hometown. I will think about it every time a school milestone occurs and he won’t be asked to participate. Sadly I can’t carry this for him. I can only grab his hand and help him along and when it’s really bad, I can carry him. Mostly, I wish I could take it away.
I feel removed from this life in a lot ways so please excuse me when I seem put off by the problems I wish I had and forgive me if I can’t be more sympathetic. I am busy staring out my window. My mind is too busy running out the window and toward the sun and imagining a normal existence.