A special little boy writes about why he is so blessed in his life. (He has overcome overwhelming odds.)
Johnny Sandusky is my name, and I will be 11 years old in a few weeks, on December 26. I was almost a Christmas baby, but thank GOD I WASN'T born ON Christmas, like my sister, Ronee', was!
I have had a very hard life, a life that I wish I didn't have to go through, but I did, and somehow, with all that I have been through, I still have managed to overcome so much, and I sometimes wonder HOW I did it! I have had many health problems (still do today, and it seems that my health is getting worse), and I have been in and out of the hospital as long as I can remember.
I have had meningitis twice (the first time I was a year old, and the second time I was six; but the first time I had it was the worst: it left me with some problems that I still suffer today), and I also have had appendicitis (also at the age of six; that was a very bad year for me!), breathing and heart problems, seizures, and other stuff. I also have to live with a neuromuscular disease that is slowly but surely robbing me of my muscles, and every day, it seems like I get a tad weaker; and things get harder for me to do. This is why you will see me with my dog, "Ginger", who acts as my helper and acts as my arms and legs, for when I drop stuff and need to reach for something; and she also alerts mama and daddy if I have a seizure. I am in a wheelchair most of the time, and I sometimes DO use my crutches; but that's only for short trips; I get too tired too quickly on my crutches; so this is why I opt to use my wheelchair. For one thing, it saves my muscles, and if I get tired, it seems that I will get weaker faster, so I try not to make myself more tired than necessary. I try to save what strength I have left.
I could feel sorry for myself (and sometimes I DO!), but what would that accomplish? I don't like to think of my being sick, but sometimes it IS hard, especially if I am in the hospital or have to go to my doctors' appointments (AGAIN!), or to my therapy; or even during different parts of the day, like, for instance, when I am in bed at night. I can't get out of my bed by myself, so I have to call for my brothers to help me so I can go use the bathroom, or I may need help turning over because I can't do it by myself. And if I lay in one position for more than one hour, I may run the risk of getting bedsores, which can be dangerous for me, or put me into the hospital, so this is why I need help so much during the night. Now, in the day, it's not as bad because someone is always with me, and I can do SOME things for myself or change my position when I am in my chair (unless I am feeling weak, then someone has to help me). I also have to wear oxygen because my lungs and heart are getting weak, and it is harder for me to breathe; but with the oxygen, I can breathe so much easier, and I don't get nearly as winded as I do without it. I have a portable tank or oxygen unit I can take with me when I go out, and I also have an oxygen generator in my room (or extra oxygen tanks). I know I am sick; but I DON'T need people feeling sorry for me; that is the WORST thing you can possibly do for me!
All I ask is that you treat me like a normal little kid who just happens to use a wheelchair. Don't be scared of me or my wheelchair; I or my chair are NOT going to hurt you, and besides, what I have is something you CANNOT get, like you can the cold or the flu. But, speaking OF the cold or the flu, you CAN'T come by me until you are ALL better over the flu or cold because for one thing, I am NOT nearly as strong as you are, and I could die quicker because my immune system isn't as strong as yours is, and it can cause me to get deathly sick in a hurry. I know I am dying; I just don't want to have it happen sooner than expected, you know??
In addition to my physical problems, I also have learning problems; and for the longest time, I couldn't do well in school, no matter HOW hard I tried. I was barely making above passing, and for me, a D was good, that's how bad my grades once were. I have learning disabilities, and it is hard for me to do things like reading and writing; but then I got the help I needed, thanks to Sylvan, where I go every week (twice; I go on Mondays and on Wednesdays, after school), to have extra help; and it's done wonders. Now I am geting A's and B's in school, and school is now a lot more fun and easier for me. I am no longer struggling like I once was, and for the first time, I actually LOVE school!
I also have vision and hearing problems from when I had the meningitis the first time, and I can't see or hear as well as other people. I wear hearing aids in my ears, and I also wear very thick glasses, and I am legally blind. I CAN see SOME, but not well enough to be able to read regular like you can. When I read, I either hold the book REALLY close to my face, or I use a special magnifier which magnifies the words on the page to where I can see 'em, and then I can read just like you. I also play games, but when I play baseball, I have a ball that beeps, that way I can know where it is, and I also have people help me around the bases. (I DO play baseball in the summer; I play on a team for disabled kids, and we have a lot of fun. Our team is called "The Challengers", and it is a total blast. Last year, for example, we went to the tourney, but we lost in the finals. We came in second place. We did not win, but we still had a lot of fun! Coach was so proud of us; to celebrate our second-place finish, he took us all out for soda and pizza, and we had a ball!)
As you can see, I have a lot to think about (and could worry about), but I still try to be happy in light of my problems and realize that even as bad as it may seem for me, I still am a lot better off than a lot of people. Take my older brother and sister, Todd and Jodie, for instance. They are both older than me, but they will never get to do all that I have done in their lives. See, they are both physically AND mentally handicapped. They are more like big babies than kids who are almost teenagers, and they will always need help with everything, even using the bathroom. They are not toilet-trained, and they must wear diapers. They also need help in getting dressed and fed, just like a baby, and they will never be able to read or write or do anything a normal kid would do. They will always need someone to care for them. Sure, I may be what people call "multiply handicapped" (having more than one disability, which I DO!), and yes, I may need extra help than someone like, say, my sister, Ronee', or even a kid with an "invisible" handicap (like my sister, Summer--she has learning disabilities--, or my other sister, Star--she has diabetes--), but I am a lot better off than someone like my brother, Todd, or my sister, Jodie: at least I can STILL do SOME things for myself while they CAN'T.
I am a very lucky little boy. I may not live as long as most kids (I won't live past the age of 13; that is only 2 more years left of my life!), but I plan on making the last two years of my life as happy and as enjoyable as I possibly can, and I am NOT going to focus on the negative parts. Instead, I am going to be thanking God for letting me live as long as I have, and I am going to tell other people about God and what He has done for me in my life. I bet I could make a good little preacher if I set my mind to it; it's just too bad they don't let kids my age into preacher school! I have to be at least 18 or so, and I won't get to do that, but hey, at least I CAN dream! And besides, I can look forward to meeting God and Jesus and all the angels, and best of all, I can become an angel too and get my wings! I also will be able to fly, and even more exciting, I will be healed, and I will be able to walk, RUN, SEE, AND hear with NO more problems! I will be a totally new kid, and I am REALLY looking forward to that!
(I just hope it is soon!! A guy like me can't WAIT that long!!)
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Reviewed by Robert Blackwell
12/7/2003
Thanks for another poignant look at one of the beautiful children you write so well about! {{{{{{{{{{hugs}}}}}}}}}}}
This book consists of a 150 pages of Christian poetry about the end of time and the Second coming of Jesus Christ not as a servant but as a King, the King of kings. To bring righteousness and peace to the earth and restore the government of God! Peac
