Johnathon, aged 10, tells people about his world and why he is the way he is. For all he has been through, Johnny is a very spirited little boy who has learned to overcome much in his young life.
My name is Johnathon Irwin-Allen Denver Sandusky, and I am 10 years old. Most people call me Johnny, but some call me by my name of Johnathon or even names like John-John or John-Boy (I HATE that one!). I live in Nashville, Tennsesee, with my parents and my brothers and sisters. (One of my sisters is the one who wrote the piece before this one, Ronee'. She is my adopted sister, and she and I are very close.)
I have muscular dystrophy, which explains the wheelchair and the braces on my legs. I have had muscular dystrophy since I was really small, and I have always had to struggle in learning to walk or get around. I usually use my wheelchair now (it is electric), but for short trips, I use my crutches. (I use the forearm kind.) I also wear oxygen because my muscular dystrophy is starting to affect my breathing. My disease is causing my muscles to get weak, and eventually, I'll get so weak I will end up being in bed all of the time, and I will end up with a trache tube in my neck, or even hooked up to a breathing machine that will breathe for me.
I don't like to think of my disease getting worse, but it IS, and I just have to learn to accept it and live each day to the very fullest. I get mad because I'll be dead in a few years, and right now, other than therapy to help keep my muscles supple and going on for a longer time, not much can be done for my disease, and it will end up killing me. Doctors dont' think I'll live to become a teenager, and to tell you the truth, it makes me mad because I think I got gypped. I won't be able to learn to drive a car or get a job, or go on a date, get married or have a family, and I won't get to see my children grow up and become a grandfather. I will always be a kid, and I think that really BITES! (I have the severe form of MD, Duchenne's, which mainly strikes boys, and it is the worst kind of MD. Nothing much can be done to stop its progression.)
One GOOD thing, though: when I DO die, I don't have to worry about going to Hell because I accepted Jesus Christ when I was seven, nearly 3 years ago, and because of it, I will get to go to Heaven to be with Him and all of the angels. And I will become an angel, too, and I am REALLY looking forward to THAT! :)
Besides worrying about my MD, I also have to worry about my hearing and my seeing (I wear very thick glasses, and in order for me to see well, I have to sit close to the computer screen, or I have to hold the book up to my face in order to see the words, and I also wear hearing aids in both my ears, as I am quite deaf without them). I had meningitis when I was a baby, and it affected my sight and my hearing. I also have a stutter to my speech because of the stupid meningitis. I also have seizures, and I have to take medications, to try to keep them from happening as much. I also have trouble with my breathing from time to time and often have to wear oxygen prongs in my nose.
Even though I have to worry about a lot of things, I still don't have it as bad as do a lot of people. For one thing, I am doing a LOT better in school, and I can see and hear and talk (although I DO need some help with the hearing and seeing parts!). I also have done a lot in my life that most people don't get to do in their whole lifetime, and I think that I am a better person because of my MD and other health problems. They have taught me to appreciate the smaller things in life, and I have met many neat people because of it. I have met many stars, and I have also had my picture taken with them and have gotten their autographs, too! :)
Even though I AM disabled, I DO love to do a lot of things. I love to play video games, write on the computer, sing and play the piano or keyboards, play with my friends and with my brothers and sisters, go to church, and
play with my helper dog, "Ginger" (she is a Golden Lab, and she is very sweet and helpful to me!), and also go to country music shows and meet the stars.
I am just like any other kid; the only thing is I just need more help in DOING these things, and it just takes me a bit longer is all! :)
Rasputin, the most feared wolf in the forest, bent on revenge for old insults. But then one night his life is turned around and a new future presents itself... will the old wolf choose to accept it?
