A mother writes about her son, Johnathon, aged 10, who has significant physical disabilities and other health problems.
Johnny is also dying of an incurable neuromuscular disease, Duchenne's muscular dystrophy.
My son, Johnathon, is ten, nearly ten and a half years old, but he has been through more in his brief life than most people go through in their entire lives, and he has had to go through things that NO human being should EVER have to go through!
For starters, Johnny, as we call our son, survived a premature birth; and even though he was a tiny two pounds, he proved to be a little scrapper, and he managed to survive. He was born in Germany, but was flown to the United States when he was well enough to leave the hospital as soon as he was strong enough. We then adopted him about a month later; he was our first adopted son, and we fell in love with him on the spot.
He's been ours ever since, and our love for him only grows stronger and deeper as the years go by.
Johnny is now ten, nearly ten and a half, and he has had to endure much in the way of heartache or hardship, things that no human being should EVER have to face. He survived not one, but two, bouts of meningitis (the first, of which, left him brain damaged and physically impaired; his hearing and vision are the most affected from the meningitis), and when he was a year old (prior to the first bout of meningitis), doctors diagnosed him with muscular dystrophy when he was having problems with his walking and his balance. (He fell often, especially when he negotiated steps, but we attributed to his being born premature. How wrong we were.)
His disease has progressed to the point to where he now needs a wheelchair most of the time (for short distances, he still uses his little forearm crutches), and he has gotten so very weak. He wears braces on his legs, too. He needs help with getting dressed and with getting his hair or teeth brushed; and his breathing is now starting to be affected. He needs oxygen at night to help him breathe a little easier. To tell you the truth, it scares the living hell out of us because we don't know what tomorrow might bring, and each day is only one day closer to the time when he will leave us.
Johnny, in addition to his MD and the damage from his meningitis, also has epilepsy, and once to several times a week, he can be counted on to falling to the floor in a seizure (or, if he is in his wheelchair, we take him out, and we lay him onto the floor and put him onto his side and let the seizure run its course; and when it stops, we make sure he is breathing and make sure he didn't injure himself. If he doesn't wake up right away or stops breathing, of course, we call 9-1-1 for an ambulance.) To control his seizures, we have him on anticonvulsant medications, and they mostly do the trick, but he still manages to have a seizure or two, especially if he is stressed out or upset about something.
Johnny needs a lot of help with getting around or with many of his personal needs, but he is still a very happy little child with a (fairly) good attitude about him. He is rather shy in nature, but he DOES have a few good friends who visit him just about every day, and he loves to play with his electronic handheld or video games, where he is a whiz. He has some learning difficulties, but he is doing much better in school, thanks to ongoing after school help. His grades have improved dramatically, and so has his overall attitude. He is an altogether different little boy from the one last year, and the change in him is nothing short of remarkable or miraculous.
Johnny has been in and out of the hospital because of one thing or another, and there have been times where we have nearly lost him; but somehow, through a miracle, he has managed to survive the odds and emerge from whatever problem he may face, stronger and more determined than ever. He is a trophy of courage, strength, and hope, and when people see him, they are always encouraged and amazed. They find it hard to believe that a little boy with all the problems he has can be so happy, but he IS. He is never sad for long (now, if we can only work on his shyness...), and he always makes people feel good about themselves after they meet him. People realize just how fortunate they really are when they meet my son because they know that some kids don't have it as good, and they should count their lucky stars that they DON'T have a disease like muscular dystrophy.
When people first see Johnny, they are always upset, but once they get a chance to get to know him, they find out that Johnny is just like any other child, only he has some physical problems, and that he has feelings, too. They then start talking or asking him questions, and Johnny starts to open up, and they soon feel comfortable around him; and they are more than happy to become his friend.
I think Johnny is a very lucky little boy because if it were NOT for his handicaps, he would probably be looked over, and his handicaps are a blessing in disguise because they somehow bring out the very best in people, and more people are willing to help him or the Muscular Dystrophy Association, in the race to find a cure for this catastrophic disease.
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Reviewed by serenety L
6/12/2003
It is a sad story again, but I agree: he is a lucky little boy. Great write. Enjoyed reading it so much. Lots of love. Nico
This one tore me up.. It's hard to think of Johnny as dying, I have come to love him as if he was so real I could reach out and touch him, it takes a talented writer to make their characters that real.
God Bless
~michelle~
Reviewed by Robert Blackwell
6/11/2003
It is very difficult for any parent to speak of a child whose days are numbered, but imagine the outpouring of love for the time that is left.
Yes Karen I agree to thinking Johnny is a very lucky little boy because if it were NOT for his handicaps, he would probably be looked over, and his handicaps are a blessing in disguise because they somehow bring out the very best in people, and more people are willing to help him or the Muscular Dystrophy Association, in the race to find a cure for this catastrophic disease.
I weight just over 2 pounds at birth myself.......now the shit in my head weighs that....lol !!
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