I look at the pale, unmarked face of my son, now a teenager, and I wish I could do more for him ...

Johnathon is not sick at the present time, but he has been through more in his short seventeen-year-old life than anyone has a right to. 

He was born in Germany, only to lose his mother in childbirth; he never even knew her.  He was immediately put up for adoption; nobody wanted him, so he was flown to America; he ended up becoming our first (adopted) child.  It was instant love at first sight.

When he was a year old, he started having problems with his walking.  He fell often, especially when it came to negotiating steps.  He was diagnosed as having Duchenne muscular dystrophy; doctors didn't give him five years.  They said he'd be dead by the time he reached five years old.

At the age of sixteen months, Johnny fell ill with meningitis that left him nearly deaf and brain damaged.  He also had a stroke.  He was in a coma for three months; we hardly left his bedside, praying for a miracle.  That was the first step in his journey with health problems, a journey that, unfortunately, continues even today.

At the age of three, he was walking with braces strapped to his legs and using crutches.  Doctors said he'd be in a wheelchair before he reached the age of seven.  At school, he was teased unmercifully, and it was discovered that he had severe learning problems as a result of the meningitis and stroke he suffered.

School was hell for Johnny; it broke our hearts that we couldn't be there with him 24/7, but we had other children to take care of, plus at the time I was the only one working.  I had to provide for my family.

At the age of seven, we enrolled Johnny in Sylvan classes to help him catch up with his classmates.  It made a world of difference:  when he was once bringing D's and F's, he was now scoring A's and B's on his report card; it was an answer to prayer.

In between all of this, Johnny showed signs of being musically gifted.  He recorded his first CD when he was six; it had minimal success, and when he performed, people took notice immediately.  He was destined to be a star in country music:  he had the voice of an angel and could play piano with the skill of a much older musician (think Ronnie Milsap or Mickey Gilley).  People were always moved at the sight of a little boy in a wheelchair (or on crutches) singing the songs of his heroes.

At the age of 11, Johnny lost all ability to walk, even for short distances, on his crutches.  He remained mobile longer than doctors predicted.  He also outlived their predictions by six years; he was still going strong.  He was determined to prove them wrong; he did, time and time again.  The courage he possessed in his little body was nothing short of miraculous.

By the age of thirteen, Johnny was having more in the way of seizures, as a result of epilepsy, another side effect of the brain damage he incurred due to the meningitis.  No matter what we did, we couldn't seem to get a grip on them; it was terrifying.  We were without hope, ready for him to undergo radical brain surgery, to remove the diseased part of his brain, when we finally found a medicine that nipped the seizures in the bud.

It was one of the worst years he had since being diagnosed with MD. 

It would only get worse.

By the time Johnny was fifteen, he was starting to have issues with his heart/breathing.  The weakness was starting to settle in; it was terrifying to see, especially when he would end up in the emergency room, gasping for nearly every breath.  We were told by doctors that this was the end; they didn't expect him to live another year.  The news broke our hearts, but we (I) were (was) determined to be there for him, with every step of the way.  Just before he turned sixteen, he had to have a tracheotomy and breathe with a ventilator.  In addition, he had to have a PICC line inserted, so he could gain needed weight:  he was painfully skinny, cachexic.

Funny, but it seems that since he had this done, Johnny's been healthier now than he has in years.  He hasn't been in the hospital but maybe once in the last six/seven months.  While he does require more in the way of care, Johnny still enjoys life, finds reason to smile when he gets out of bed in the morning.  He thanks God every morning for a new day and grasps life by the horns; he reminds us of a bullfighter:  cool.  Calm.  Collected.  Even in the face of uncertainty, he possesses a sense of courage that is nothing short of astonishing.

I have a feeling that Johnny will live quite a few more years; he is determined to spit in muscular dystrophy's (death's) leering face and say:  "Look at me, world!  I'm Johnathon, and nothing is going to stop me from achieving my dreams!!"

His two biggest goals in life right now are to get married to his girlfriend, Rebekkah Cohen, and to attend college; he wants to become a meteorologist or a professional storm chaser.

 Johnny first has to graduate high school; he graduates this year, in June.  That's only three months from now.  I have no doubt that he will make it.

I, as Johnny's mother, have been honored to have been with him for every step of the journey.  The worst that can happen to him now is waking up in Heaven and staring at Jesus face to face.  Or getting healed.

Johnny has a strong, unshakable faith in God, and he is a very good witness to others about Christ's love.  When people look at this small, blonde-haired, blue-eyed boy sitting in a wheelchair, preaching the word of the Lord to others, they can't help but be compelled, drawn to him.  Johnny isn't afraid to profess his faith; if one young boy can reach fellow teens his age, then more power to him.

He has more faith in that small, broken body than I do in my little finger, especially when the chips are down and threatening to fall.

Well, I have to go.  Johnny is hungry.  He is roaring for his supper as only he can.  I'd better go and calm the savage beast before there is bloodshed (namely me; I might end up on his menu  LOL).  Take care, and may God bless you; please keep those prayers coming for Johnny; they are being answered in ways that you can't even begin to imagine!  Thanks in advance!

~Love, Johnny's mother, Louisiana.  :)