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Things You Should Know About Me #2 (By Johnny, aged 11)
By Karen Lynn Vidra, The Texas Tornado
Tuesday, March 02, 2004
Rated "G" by the Author.
Now Johnny offers us a glimpse into his life.
My name is Johnny, and I am 11 years old. I turned 11 on December 26 of last year. On December 26 of this year (2004), I will be 12 years old. I was born on December 26, 1992. I was born in Europe, in the country of Germany.
I live with my family in Nashville, Tennessee. I have a mom and dad who love me, and I also have many brothers and sisters. All of us kids are adopted, even me. I was adopted when I was a little baby.
I was born in West Germany, near Munich, and my mom died while giving birth to me; so I never knew her. I came to America when I was almost two months old, and when I was nearly three months old, I was adopted into the family I live with today. The family I have now is the only family I have ever known. I didn't know this until a few years back, but I also have a real-life brother, Erich, who is going to be 16 this year. He lives in New York City, New York. He was adopted by a family whose last name is Trachtenheimer; and he looks like me but he is tall. His hair is darker, too, and it is longer. But you can definitely see that we are brothers if you look at pictures of the two of us together. He is really nice, but it was weird meeting a relative I didn't even know I HAD until a few years ago!
I am short for my age, and I have spiky white-blonde hair; I also have bright-blue eyes and wear glasses. I also wear hearing-aids, as I also have hearing problems. I had meningitis when I was a toddler, and it affected my sight and my hearing. It also affected my speech, and when I talk I stutter. It is embarrassing, and because of this I am rather shy; I don't like to talk in front of people I do not know; I am afraid that they will only end up laughing at me.
I also happen to be in a wheelchair. I have a disability that is making my muscles weak, and eventually it will kill me. I try not to think about that, but sometimes it is hard NOT to, especially since I won't be able to do things like have a girlfriend or go on a date or to the prom, graduate from high school, get a car, or have a family of my own and watch my kids grow up. This is probably the biggest thing that bothers me about having a disease like muscular dystrophy. I wear braces on my legs, and I also mainly use my wheelchair; but I CAN walk for short trips; but when I DO walk, it is on crutches. I don't mind the crutches; but I prefer the wheelchair because I get tired too fast on my crutches.
Now the muscular dystrophy is starting to affect my heart and my breathing, and it is because of this that I now have to be on oxygen. I get short of breath easily, and when I am sick, I have a lot of problems with my breathing, so I have to use oxygen at times. My heart has acted up only once, but I really don't remember much about it as I was unconscious! LOL When I woke up I was surprised to find myself in a hospital, but then I got better, and about a week later, I was well enough to go home; and ever since, my doctors have really been keeping a close eye on my heart and on my breathing. It is when I get sick when I have to be especially careful, or I could really get into a jam!
In addition to my muscular dystrophy and my hearing/vision problems, I also have epilepsy. This is another way the meningitis affected me (the first time I had it; I had meningitis twice, but the first time was the worst!). I have seizures; and when I have a seizure, I fall to the ground, and I then shake all over; and when I come to, I am sore all over, and I feel all confused; and I really don't remember anything about the seizure itself. When this happens, mom has to call the doctor, to let him know I had a seizure; and I usually have to go see him to make sure I am okay, which I usually am. If not, or if I have one seizure after another (and this has happened before!), I then have to be admitted to the hospital, where I am then tested and then given a new medicine that will hopefully control the seizures and help me.
I am in the fifth grade at Morningside Academy, which is a school for kids with disabilities; and I am in the multi-handicapped class. I AM doing better in my schoolwork, but school is still rather hard for me at times. I have learning disabilities, and sometimes it is hard for me to read or write; but I have been getting extra help after school from Sylvan, and I am doing MUCH better; and my grades have improved a lot, which makes me happy! My teacher's name is Mrs. Potter, and she is really nice.
I don't have a lot of friends, but I DO have some; and my best friend's name is Jose' Varquez. He and I met two years ago, and we are really tight. We like a lot of the same things, and he wants to be a basketball star when he gets to be an adult. I hope his dream comes true , especially since I won't be around to BE an adult. That makes me sad; if I were ABLE to become an adult, I would probably like to be a writer or an artist, or something of that nature. Jose' is a very nice kid; he lives with his "abuela and abuelo" ("grandma" and "grandpa" in Spanish; he is teaching me Spanish!), and while I have brothers and sisters, in HIS family, he is an only child. I also have a friend in Ryan Seacrest (not THE Ryan Seacrest who hosts "American Idol", but a different one; this Ryan Seacrest is a BOY my age! LOL), and also in Tremaine Givens. Jose' is not handicapped, and he goes to Eastview Elementary school, but Ryan and Tremaine both go to my school. Ryan has cerebral palsy and walks on crutches, and Tre has Down's syndrome.
When I am not at school, I love to play on my computer, play video games (I am the KING of video games; not many people can beat me, I am that good!), play piano and sing (I have sung on stage a few times, but I am NO singer, I think; I think I will leave the singing to my sister, Ronee'; she is WAY better at it than I am!), write stories or poems, make up songs, go skiing in the winter (I have a sit ski I sit in when I go; I can't ski like most people), travel with my family, meet my favorite stars in country music and also in tv (I was the "Poster Child" for the Tennessee chapter of the Muscular Dystrophy Association a few years back, and I got to meet a lot of famous people including Ed McMahon, the Chairman of the MDA himself, Jerry Lewis, Hallie Kate Eisenberg, Johnathan Lipnicki, and others--that was very exciting!--), and play baseball in the summer. (I am on a Disabled Kids' League, and our team is called "The Challengers"--last year, we lost in the semi-finals; but we still had a LOT of fun!)
Too often, people wonder if my dying of a disease makes me sad. Yes, in all honesty, it DOES make me sad because I feel as though I am being gypped out of my adulthood; but the WORST thing that can happen (BESIDES my dying, that is!) is meeting Jesus face to Face. I guess I really don't have to worry about dying all that much because I accepted Jesus Christ into my heart when I was seven, and when I did, I was assured of a place in Heaven, and when I die, I will NO longer have to worry about being sick. I will have a new body when I get into Heaven, and I will be HEALED of all my problems I had here on Earth, and best of all, I will be able to WALK and RUN, two things I was really never able to do! I will also be able to breathe and my heart will be strong; and I will no longer have seizures, and I also will be able to see like an eagle and hear like a rabbit. I will be COMPLETELY and TOTALLY healed, and I am REALLY looking forward to THAT! I will also get my Angel's wings, and I will become an honest to goodness LIVE Angel! :D
Well, that is my story. I hope you liked reading about me. I enjoyed writing my life story, and I hope that you find it readable. Now you know more about me, and now know that even though I AM disabled, I am still a kid, and I am a lot like you, more than you may realize! Sure, I may be in a wheelchair or have problems with my hearing or vision or with my seizures; but I am still a kid, and I like to do little kid things. I laugh, I cry, and I think, too, just like you do. I have dreams and plans, too, and I have a (fairly) good life. I may not live as long as you will, but my life is FAR from boring, and I happen to think that I have a very good life; and as long as I am still alive and am able to do things, I am going to make the last few years of what is left of my life the BEST years EVER, and I want to end life on a HAPPY note! I also want to let people know that they need Jesus in their lives and why, and also tell them that even with a problem like mine, life doesn't have to be sad or scary! As long as I focus on Jesus, then I don't have to worry about a THING! As I said earlier, the WORST thing that can ever happen to me is seeing Jesus face to Face when I DO die!
~Love, Johnathon Irwin-Allen Denver Sandusky, aged 11.
(Written on Tuesday, March 2, 2004, for English class, Grade 5.)