Hello! My name is Ben. I just turned seven and I'm a very happy person. Just like most boys my age I go to school, I love sports, I get a little moody sometimes just to get my way, I can be very rowdy, but mostly I like to play.
Unlike most boys (or girls) my age I cannot sit or stand by myself, I am fed by a feeding tube, I mostly breath through a hole in my neck, I have been hospitalized many times, I have a nurse that helps take care of me almost every day, and I adore my big sister!
I don't tell you these things to feel sorry for me. I tell you these things to help you enjoy your life and loved ones as much as possible. I also want you to see my daddy's paintings and consider buying one so that you can see it each day and smile regardless of life's problems.
There is much more to tell so I have this blog now. I can take my time to relate my story and my dad's. He wants very much to make a living as an artist. He has travelled many miles the past two years and I miss him very much when he is away. Most folks tell him that he has a gift and they love his paintings. They want him to come to their towns to buy his art. Unfortunately that means he cannot help me with therapies and I do so much better when he helps me.
My "blog desire" is:
- that people learn about my genetic disorder and know how they can help me and others like me.
- that "normal" people figure out how to interact with us "exceptional" people.
- to keep my daddy at home so he can help me with therapies which means....
- sell some wonderful paintings my daddy and me have created so that you can have original artwork plus something fun to make you smile.
I like to smile and I want you to smile too!