A boy with spina bifida learns to cope with his disorder.
My name is Giovanni Miguel Archuleta, and I am 10 years old. I live in Baltimore, Maryland, with my mom and dad and my baby brother, Antonio, and my little toddler sister, Capria. We also have a dog, "Stinker", and a cat named "Toodles". I am disabled, but I am a very typical little boy who happens to use a wheelchair instead of my legs.
I was born with an incomplete spine; this happened before I was born, and as a result, I was born with a bump on my back, and I was born paralyzed from my waist on down. Oh, I can walk, but I walk on Lofstrand crutches and leg braces; but it is much easier for me to use a wheelchair.
My disorder is called spina bifida. I don't know why I got it, but something happened when I was being formed, and before I was born, my parents found out that I was going to be born handicapped; and it devastated them; but I then came along, and I have been a very good and loving little boy; and I have shown my parents (and other people) that I can function as well as other people, only I use wheels instead of my legs; and I still can do a lot of things for myself.
Because of my spina bifida, I am paralyzed; have very little feeling in my legs and hips; but it's something I have gotten used to. Still, I have to be careful, especially if I get cold or hot, or if I sit in hot water; I can very easily get burned or frostbitten if I am not careful, so I have to take extra precautions. I also have to wear a catheter tube and a bag strapped to my waist because I can't go to the bathroom as easily as most people, but I still do manage quite well. I just have to take more frequent bathroom stops is all (like every two hours or so). There is a lot that can go wrong with my situation, but I have learned to cope and take things as they come.
Sometimes I have to have surgery for different things; so being in the hospital is something I have also learned to cope with. While it is NEVER easy to be facing an appointment with the surgeon, it DOES help if I get a problem fixed; and besides, if I don't have anything done right away, I can only get worse, and I could die (like if my shunt, as an example, malfunctioned). I have a shunt in my head because my brain doesn't drain excess CSF (cerebral spinal fluid) well, and I need help; and the shunt does that. Usually, I don't even know the shunt is there; but it is, and if something goes wrong with it, boy, do I ever know about it in a hurry!
Living with a disability like mine has very many challenges; but as I said earlier, I am still a typical little boy. I like to play the piano, sing, play video games or electronic handheld ones, play baseball or basketball (on a wheelchair team), annoy my little sister Capria and my little baby brother, Antonio, and hang out with my friends. But I mostly like to read and surf the Internet.
I am like any other kid; I don't know why everyone has to make such a big deal about my disability. I try to treat people nice, and I wish they would do the same to me. I am NOT going to break apart if they stand by me, and another thing, they aren't gonna' catch my spina bifida or become paralyzed if they hang out with me; that is downright stupid to think that! Some people can be such dopes about some things...
I may have spina bifida, and I may be disabled, but my disablility doesn't have ME, and I refuse to give in to it. I am like any other kid, and I have a life that is happy and fulfilliing! Just let me live my life to the best of my ability, and I am happy!
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Reviewed by Simon Thurlow
2/11/2004
Well written Karen. There is indeed a big difference between the words
A very touching write. Some people forget and use cripple when they meant to say disabled. Cripple was always used in my day. Many years ago and it did not have a derogatory meaning. But some heartless people did use it to hurt the person.
wonderful write, hope you get to hear more from this little boy, he sounds like an awesome person, just like you. You are so sweet to dedicate this to me. Made my day!!
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