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Fighting For Johnny: A Mother's Courageous Battle For Her Son (*Warning! Tear Jerker Material*) by Karen Lynn Vidra, The Texas Tornado
Tuesday, February 17, 2004
Rated "PG" by the Author.
Louisiana has had to fight for her son, Johnny, more often than do a lot of mothers...ANY mother would do the same if their own kids were sick or were suffering, but it seems that Johnny and his mother have been fighting the hardest.
Johnny is my son, and as long as I have breath in my body, I will fight for him and his rightful place to be a part of society.
My son is now 11 years old, but in his short, brief life, he has had to face more personal battles with his health than most people do in a lifetime, and unfortunately, life for him has NOT been at all fair a lot of the time.
This is where I come in. As his mother, and as his biggest advocate and supporter, I want to make sure that my son, who is battling Duchenne's muscular dystrophy and other health problems, gets the same respect from people whenever they first see him. I want to make sure that my son gets all the benefits and same opportunities in his schooling and make sure that he gets the extra help and attention whenever he is struggling or needs help. I want to make sure that he gets the best in medical care when he suddenly becomes ill, and I want to make sure that he is NOT treated like a second-class citizen, just because HE happens to have serious health problems that threaten his life, and even though he IS "terminally ill", he is STILL a child, and he STILL deserves to be treated like any other child when they become sick or need to go to a hospital or see a doctor!
I have had to fight tooth and nail for Johnny; and it is ONLY because of my constant fight that Johnny has gotten as far as he has in his life. If I hadn't stepped in when I did, Johnny just may NOT be here now. He wasn't expected to live to his fifth birthday when he was first diagnosed with Duchenne's at the age of one year; and it is ONLY because of my peristance and constant battle with uncaring doctors or overworked nurses that my son has gotten the medical care he so desperately needed (and still DOES need to this day). Johnny has had to face more challenges or roadblocks, and life to him is often not very nice. He is often subjected to stares or cruel comments from people, and people have NO idea what my son faces every day in his life. Now at the age of 11, Johnny is starting to have problems with his heart and with his breathing (he is often on oxygen), and he is also losing the ability to do things for himself at a rather rapid rate. Things that were once easy and/or effortless for him now seem like unsurmountable mountains, and he needs more of our help in everyday tasks. It is getting to the point to where we are seriously thinking of getting 24-hour medical care for him because trying to take care of HIS needs--as well as the needs of 49 other children--is starting to take a toll on us. It is NOT easy to raise children anyway, as it is, but it is especially difficult to raise a child with medical needs as demanding as Johnny's!
Johnny is only a child, but he doesn't deserve all of this trouble that he is currently facing. He doesn't deserve to have something as serious as muscular dystrophy, and he certainly doesn't deserve to have the severe form where certain death is always innement. His disease had threatened to take his life at the age of five; but it is ONLY through a Miracle from a Loving God that Johnny has survived THIS long; and any day that he survives is an extra and added bonus! He is now 11, living six years longer than what doctors had first predicted; but he is still very sick, and every day, he somehow turns just a little bit sicker and weaker. Every day we see subtile signs that he IS getting worse; and to tell you the truth, it makes us ALL cry because we are NOT ready to say goodbye to Johnny just yet! We want him to have the opportunity to learn to drive a car, go on a date, or even get married and have a family of his own; yet, because of his disease and its implications, it doesn't look like he will even have the opportunity to do any of these things. He isn't expected to live to become a teenager, and if he DOES become a teenager, it will be quite a Miracle if that happens!
Johnny has often been denied decent medical care because people (DOCTORS of all people!) have been afraid to treat him because of his delicate health situation. That is understandable, but Johnny is a LITTLE BOY, NOT some second-class citizen or some lab animal! He is a very sick little boy, and he deserves to have the BEST treatment options made available to him! My son has nearly died more than once because of people's reactions towards him when he gets sick, and it is ONLY because of some caring people who saw the urgency in his situation that he even SURVIVED!!
This is why I am writing this down, to let you know of some of the things that Johnny (and I, as his mother) have had to go through! I only hope that none of YOUR children or loved ones become sick or develop life-threatening diseases because once it does happen, it changes your entire perspective on life! Take it from a mother who KNOWS just what it is like fighting a daily battle so that her child has a chance at a normal (or halfway decent) life before he DOES die!
heartbreaking story--most mamas would become a she-bear and would fight for the right for their kids to have the best care, disabled or not, especially when they are sick. well written, though!
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