Now it is Johnny's turn to shine. Louisiana shares her favorite (and some not so favorite memories) of her son, Johnny, who was adopted just prior to Ronee'. Like Ronee', Johnny was adopted as a tiny baby, but he came to the family from Germany. He was their very first child.
Johnathon Irwin Allen Denver Sandusky is a child who doesn't know the meaning of the word "quit".
Like his sister, Ronee', Johnny was adopted into our family when he was just about two months old; in fact, he was a week shy of two months of age when he joined our family; and he was our very first child to be adopted. Johnny was born in Germany, and he proved to be a rather scrappy little fellow.
He still is, in a lot of ways.
Johnny is a very handsome young man with spiky, flyaway hair the color of cornsilk, big, bright-blue eyes fringed with white-blonde lashes, a quick smile, and skin the color of pale pink roses. He wears gold, wire-rimmed glasses and hearing aids in both ears because he has vision and hearing deficits. He CAN talk quite well, but his speech is permeated with a stutter; and is often shy and quiet because he is embarrassed about it.
Johnny also has serious physical disabilities. He was born seemingly healthy (but had suffered a catastrophic illness at the age of one year and three months, an illness that left its ugly mark in his hearing and vision capabilities; he also has brain damage and seizures because of this illness), but at the age of one year, right before he took sick with the meningitis, he was diagnosed with the beginning signs of muscular dystrophy. At first, doctors attributed his clumbsy nature to his being born premature (at birth, Johnny weighed in at a skimpy 2 pounds; he was just a tiny little thing), but then he started showing other signs that pointed to a possible neuromuscular disorder. When tested by specialists, it was discovered that, indeed, Johnny did, in fact, have muscular dystrophy.
Doctors didn't think he would live to the age of five.
He got his first wheelchair at the age of three. He also got his first pair of crutches.
Johnny was a very happy-go-lucky child who didn't let his illness get into his way. He still managed to find a way to do things; and we found him to be passionate about playing with his toy cars and trucks, singing (when he sang, he didn't seem to have his stutter; he sounded "normal"), playing his toy piano (he could pick out a tune on his piano, and he taught himself how to play), and picking on his brothers and sisters! (By now we had adopted several more children into our family.)
When he was six, Johnny fell ill a second time with meningitis; and even though it was bad, it wasn't nearly as bad as the first time he had it (that is, it didn't leave any further disability or brain damage). He recovered, but it took a while.
At the age of seven, Johnny was picked by the local chapter of the MDA to represent the Muscular Dystrophy Association (Middle Tennessee Chapter), and during his "reign" as Poster Child, he went to be featured in several articles in local papers, as well as in several television commercials. He also met many famous celebrities, including the Chairman of the MDA himself, none other than comedic legend, Jerry Lewis. He was the Poster Child for the Middle Tennessee Chapter of the MDA for nearly two years, and he enjoyed it very much.
During this time, at the age of eight, Johnny was found to have a new problem, but one not associated with his muscular dystrophy. He was found to have epilepsy: he started to have seizures; and each seizure proved to be very frightening to watch. It was then discovered that he had "lesions" on his brain from the first time he had meningitis. It was a clear sign that his brain was more damaged than was originally thought, and it broke our hearts.
Johnny seemed to take his problems in stride, but we could easily tell that he was struggling. He was having difficulty in school, and his grades were barely above passing. For him, a D was good. We tried everything to help him with his schoolwork, but we were often met with frustration, tears, or tantrums. It didn't help that his closest friend, his sister, Ronee', was a certified genius, and he was at once angry and jealous of her; and sometimes they would get into horrendous fights. Ronee' tried her best to help her brother, but Johnny absolutely refused it.
At the age of nine, last year, Johnny finally got the help he so desperately needed in his schooling. We enrolled him in an after school program for learning-disabled students, and ever since, it has been like a Miracle because all of a sudden, his grades improved dramatically, and when he was bringing home D's and F's, he was now bringing us report cards that glowed with A's and B's. His attitude towards school improved dramatically, and all of a sudden, he was now looking forward to going to school. For years, he would fake at being sick, just so he could avoid school, and now, all of a sudden, he was looking forward to each school day like an eager puppy.
The change in his grades and in his attitude was remarkable, and today, I am glad to report that he is still doing extremely well. In just a few short weeks, he will be in fifth grade, and for the first time, he will be right up there with his classmates instead of lagging behind, as he had done in years past.
But despite all this happy news, there is some sad news to report. Johnny's health is failing, and every day there are new signs that he is, indeed, growing weaker, as a result of his muscular dystrophy. He is now unable to dress himself (mainly his pants, socks, and shoes), brush his hair or teeth, and reach for items on high shelves. He now needs help with these things, and he also needs help with his bath (getting him in and out of the tub and helping him wash himself). He is also starting to have problems with his breathing, and he is often on supplimental oxygen because he gets so winded so fast, and it doesn't take much for him to start gasping for air if he overexerts himself. We now have a helping dog, who acts as his arms and legs, and she also alerts us if he has a problem. She is his closest buddy, and she has been a welcome addition to his (and our) life.
We don't know what next year will bring for Johnny; every day with him is a blessing, and we try to make each minute count. We try not to act sad around him or bring up the fact that he is dying; but Johnny is a very smart little man, and he isn't scared to die. He doesn't want to die; but he knows he is, and he tries not to think about it. For him, living for the moment is what is important, and he tries to be positive about things. He still finds time to laugh and play with his friends or his brothers and sisters, and his hobbies are still his Number One Priority. He can spend many a happy hour playing with his video games or typing away at his computer, and he also loves trading his Poke'man cards with his closest buddies (namely Jose' Varquez, who is his very best friend). He also loves to listen to Reba McEntire or Ronnie Milsap on his stereo, and he loves meeting the stars at concerts.
The only thing that really bothers him about dying is the fact that he will never have a girlfriend or go on a date, learn to drive a car, or have a family of his own after he gets married. He will always be a young child or a very young teenager. He isn't expected to live to the age of 13, and this makes him sad. He wants to live as long as possible (and he has; in fact, he's lived nearly 6 years longer than what doctors predicted!), and he wants to enjoy life while he is still able to do so.
Johnny is a very eager little boy once he gets past his shyness. He isn't that comfortable around strangers, and it takes a while for him to warm up to people. Part of the reason is because in the past he was teased so often, and this has helped shape his personality.
Besides video games, the computer, music, or his Poke'man cards, Johnny also now loves to read (like his sister, he is a very eager reader; he will read just about anything), draw, and write stories and poems. He also loves to collect toy cars, and right now, his greatest prized possession is a remote control Hummer, which he got from his baseball team for a successful season. (He plays on a Little League team for disabled children, and they made it into the semi-finals, but lost before they could reach the finals.)
Johnny has taught us what it means to live life to the very fullest in the face of incredible illness and hardship, and he has also taught us the meaning of trying your very best when things are difficult. He has also taught us love, patience, and hope.
We have certainly been blessed with a child like Johnny, and even though he may not look like us (we are dark, and he is fair), he is still very much our child, and he is an integral part of our lives. He will always be among our favorites (though we TRY not to pick favorites in our family; to us, each child is special in his or her own way), but Johnny has something that makes him stand out, and this is why he is often singled out by us. He is a little charmer, and he is very well mannered. He does whine at times (especially if he is tired, sick, or bored!), but he is an overall good kid, and he knows that if he misbehaves, he WILL get disciplined. Just because he is disabled doesn't mean he won't get disciplined because he DOES. ALL of our children do when they misbehave!
Yes, life with Johnny is very interesting, and besides that, it is a lot of fun! He can make us laugh at the drop of a hat, and he can really surprise you with what he can do. He may be multiply handicapped, but there is absolutely NOTHING that will stand in his way, and he WILL find a way to do things!
Let this coming of age story of a boy named Bean take you back to a simple time. Set in a small southern town in the 1960's, encircled by a river and gleaming white cotton fields.
Johnathon Irwin Allen Denver Sandusky is a child who doesn't know the meaning of the word "quit".
