A young boy talks about his life of living with a disability and his interests.
My name is Johnny (Johnathon) Irwin-Allen Denver Sandusky, and I will be 11 years old in December. I have longish, white-blonde hair that is done in a spiky hairstyle, and turqoise-blue eyes; and I wear glasses and wear hearing aids in my ears. I am rather small for my age; I look more like six or seven than a ten-year-old. (People sometimes say I look a lot like child star, Johnathan Lipnicki, except I am smaller and am in a wheelchair, so there is NO WAY they could possibly mix us up! :))
I am in a wheelchair because I have a disease called muscular dystrophy. (I was told I had it when I was a baby, but I really don't remember. But I do remember always having trouble walking and always having to use a wheelchair or crutches.) My disease makes me weak, and it is hard for me to do a lot of things because I just don't have the strength like I used to. But I still manage to get by, thanks to the help of my dog, "Ginger", and my family and friends.
I also wear thick Coke bottle glasses because I am legally blind, and I wear hearing aids in my ears because without them I can't hear as well as most kids. I had a sickness called meningitis that affected my brain, and it caused me to get hearing and vision problems. I also have a stutter to my speech, and it is embarrassing for me a lot of the times when I have to talk out loud. (I had meningitis when I was small, and I also had it again at the age of six, but the second time wasn't nearly as bad as the first time I had it.) I also have seizures and have to take medication every day to try to control them. So, as you can see, I have a lot of health problems. But I refuse to let them stop me from living my life.
Despite my being disabled, I am a very happy kid. I am also a very active kid. I love to play video games (Tetris and Poke'man are my favorites, and I also love Kirby and PacMan), write on my computer, draw, read (I used to have a lot of trouble with my reading, but I then had extra help, and now it is much easier for me), play on a disabled kids' baseball team every summer (Little League; our team is called "The Challengers", and all of the kids are disabled; it is a lot of fun!), sing, play my keyboards, and go to country music concerts. (I also love to go to school, and I am doing well in a lot of my classes. School used to cause me NO END of trouble, but then I got help, and now school is MUCH better for me!) I have seen just about everyone in country music: Loretta Lynn, Alan Jackson, Joe Diffie, "The Dixie Chicks", Faith Hill and Tim McGraw, Reba, "Alabama", Garth Brooks, Ronnie Milsap (he and Reba are probably my two very favorites, but I love Loretta Lynn just about as much), Tracy Byrd, and Martina McBride. I have been to the Grand Ole Opry and to Fan Fair countless times, and I have also met tv stars like Ed McMahon, Jerry Lewis, Hallie Eisenberg, and Arsenio Hall.
I live in Nashville, Tennessee, with my large family, and I love my family very much. All of us kids are adopted, even me (I was adopted when I was a couple of months old, according to mommy, and I was the first kid to be adopted). I was born in Germany, but I was adopted a few months later after I came to the United States of America. I live with my mommy, daddy, grandpa and step-grandmother (my real granny died; she was my grandpa's wife, and he has since remarried), and my brothers and sisters. I also have a brother in New York City, who is now 14. His name is Erick, and he looks a lot like me. I talk to him every weekend (or just ABOUT every weekend!).
I am not expected to live to become a teenager, but I am not TOO sad because I now have Jesus in my life, and I can always be happy in knowing that I will be going to Heaven to be with Him. But I don't like to think of my dying of MD because I don't have much time left, and that always makes me sad. I don't like the thought of leaving my family, and I don't want them to be sad when I DO die; but I know they will be. That really bugs me (my dying) because I won't get to go on a date, go to my senior prom or graduate from high school or go to college, or even marry or have a family. If you ask me, having MD BITES. I really got gypped, if you know what I mean! Life sure isn't fair sometimes, and it is especially hard when that person so happens to be ME who is having all the problems! :(
My favorite colors are green, blue, or black (ANY shade), and my favorite food is anything German: weinerschnitzel, knockwurst, liverwurst, sauerkraut, or any German pastries. I was born in Germany, so I have learned to love German-style foods and music. I hope someday to go to the land where I was born, so I can learn about it and see it firsthand. (Mommy tells me I was born in a little town near Munich, West Germany. But I came to America when I was really young to be adopted.) And my favorite tv shows are "Poke'man", "Jackie Chan's Adventrures" (he cracks me up, Jackie Chan does!), "Rugrats", and "SpongeBob SquarePants". (I LOVE Nickelodeon! :) I also love "The Wild Thornberrys", especially when they go to Africa! :) )
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Reviewed by Jennifer Cary
3/31/2003
Karen,
I want to cry, this is so real to me. I agree with Karla, you need to be published!
Abundant blessings,
Jenny
