Louisiana writes about the concerns she feels for her son, Johnny, whose health is getting worse. (He has Duchenne's muscular dystrophy.)
Tuesday, March 14, 2006, 4:31 p.m., C.S.T.~
Dear Journal~
I just don't know what to do anymore. I am tired of worrying, and I am tired of having to see my now-thirteen-year-old son suffer so much!
Tomorrow, Johnny goes to the muscular dystrophy clinic here in town, where he will see his specialist. He will probably have to have some tests on his muscles and breathing, blood work, and other lab studies. He has been having problems with his breathing (he is already on supplimental oxygen now), and he is starting to have some trouble with swallowing. He also can't turn over by himself anymore, and he can't walk on his crutches for shorter distances without having to stop and gasp for breath.
This has been going on for the past several weeks, and to tell you the truth, it is scaring the hell out of me. I know that his muscular dystrophy can't hold out forever, but when it is your child who is suffering, you want to do all you possibly can to prevent his demise or pray like hell for a cure in the next few years, or else he will end up meeting his Maker.
Muscular dystrophy is a cruel, insidious disease that strikes children in their prime. Most of the time, Duchenne's muscular dystrophy isn't really noticed until the child has already been walking and he has some trouble getting up or going up stairs, but Johnny's case was diagnosed when he was just a year old. He kept falling over while learning how to walk, and he had trouble on steps, but at first, we didn't think too much about it. We thought it was a normal part of his development, but then at the age of two, we noticed that his legs looked wasted somehow and that his calf muscles looked bigger than normal. Something wasn't quite right, so we had him looked at by our doctor. This was when he sent him to the hospital for tests because he suspected that Johnny had some sort of a neuromuscular disease; he had the symptoms.
It turned out that he was right. At the age of three and one half, Johnny was officially diagnosed with Duchenne's muscular dystrophy, which is the worst form of the muscular dystrophies, and it primarily strikes boys. It also ends up killing them when they are in their teens or early twenties due to heart or lung failure. Eventually, the child ends up totally dependent on others for care, and he basically ends up not being able to move at all without help; he ends up being totally immobilized.
Now, Johnny wasn't expected to live beyond the age of five years; he is now thirteen, and he has amazed doctors with his courage and will to live. His disease hasn't progressed as fast as most others with the disease; now it is finally starting to take its toll on Johnny's young body. He is getting noticeably weaker, and every day, every week, every month, we see subtile differences in his strength that weren't there before, and it is very upsetting, to say the very least. It is now starting to enter the "terminal" phase, meaning that soon his heart and breathing will be affected, and we can be sure to expect more trips to the hospital on his part.
I am sure that once the testing is complete and the results come in, the news will not be good. I am trying to steel myself for the outcome, but at the same time, I am scared for what the answers will be. I am scared for the future for Johnny, I am scared for Johnny, I am scared for us. I am scared how Johnny's impending death will affect the family, and I am scared that I won't get to say goodbye to my son when he does die. I am also scared that he will suffer a needless, painful death, and I am scared that he will die when we least expect it.
I will write more in here tomorrow after the doctor's appointment; I expect to be at the muscular dystrophy clinic all day with Johnny, so if you don't hear from me right away, now you will know why. I will keep in touch; stay tuned~
(((HUGS))) and love, your (terrified) friend, Louie May, Johnny's mama. :( >tears<
Take heart from the fact Karen, it is not the length of our days that define us as a quality human being, but the love and compassion residing in our hearts and souls, that Amighty God takes account of, in his infinite and omnipotent wisdom !
In Johnny's case, as in other cases of afflicted children with muscuar dystrophy or motor neurone syndrome, you very often find these are remarkable children, akin to the mysterious and exceptional Indigo Children, who now walk our earth !
Love and Blessings
Peter
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