As I was saying earlier, you and your sister were both very sick, and doctors were doubtful about your prognosis; but day, by day, you started showing subtile signs that you were starting to emerge from your coma. It was three months later, but you started to slowly emerge from your coma.
How we hoped for that day, that day where you would open your eyes! How we hoped for that day where you would start moving your limbs in response to doctors doing their tests on you! You had a long way to go, but you were starting to come back to us, and we both cried with sheer happiness when the chief pediatric neurologist told us that you were slowly emerging from your coma.
However, you were far from being well. You had a feeding tube in your nose, and it was as though you didn't know us; you looked as though you had a faraway look in your eyes; and your eyes didn't have the healthy sparkle to them as they had prior to when you first became so sick with the meningitis. You were also pitifully scrawny, and you had lost so much weight since you had gotten sick. Your movements were erratic and spastic, and you had to have extensive physical therapy to relearn lost skills and to get you moving properly again.
That was when doctors discovered the deficits in your vision and in your hearing; and that was when they discovered that you had suffered a stroke: your one side was noticeably weaker than the other. You apparently suffered a stroke when you had been so ill with the meningitis.
You would have to be fitted with hearing aids, and you would have to wear thick-lensed glasses in order to see and hear properly. You also needed extensive speech therapy; you had severe speech deficits.
In addition, you also needed braces and crutches for a time until your legs got stronger (not knowing that, just a few short years later, you would need them in order for you to walk..permanently).
Your new physical disabilities proved to be a challenge, but as you emerged from your shell, you became more determined to overcome your challenges; and the loving, if somewhat shy, little boy we knew and loved before you became so sick was starting to reemerge, like a butterfly emerging from its cocoon, and it made both your daddy and myself burst with pride and love. You survived a deadly bout of bacterial meningitis, and you had overcome tremendous odds placed upon you by your neurologists.
Johnny, when you were four years old, you suffered your first seizure. You were in your room when I heard thumping noises; and when I went to see what was going on, I found you lying in the middle of your bedroom floor, your small body jerking like a dog that had been hit by a car. My heart fell clear to my toes when I saw you like that; I was so scared! Your little face was all blue, and you were drooling uncontrollably. Just as quickly as it began, your little body became limp, and you went to sleep. But I was scared beyond belief; and I rushed you to the emergency room. You were then admitted, and you had tests; and it was found shortly thereafter you had epilepsy.
Oh, GOD! Only more heartache for this child who didn't deserve all he had gone through! I cried as though my heart was breaking; what must you have been thinking? Oh, if I could only take all this medical drama out of your life..if I could, believe you, me, Johnny, I surely WOULD!!
Yet that wasn't the end of your problems. More problems would continue to crop up in cruel and at times unexpected ways, but ways that somehow always managed to catch us off guard.
At five, you had your first breathing crisis. You had just gotten over a cold, and you had a bronchiospasm that caused you to stop breathing. I will never forget the sound of your stridor or the sight of your blue, sweat soaked face as I ran into your room, to try to help you, only to have your head fall back and watch your small body go limp. I honestly thought you had died just then, and it terrified me. Needless to say, an ambulance was called, and you were rushed to the hospital. (Again.)
At six, you were now using a wheelchair, a sure sign that your muscular dystrophy was surely progressing; and by now you had been wearing those ungodly ugly metal-and-leather braces on your stick-thin legs; and those equally hideous orthopedic shoes. But you withstood each new challenge like the trouper you alwayas have been, and you were more than ready to tackle life and all its occurances, be they bad OR good. You have always remained my brave little Johnny, even back then.
You also had a second bout of meningitis, but it wasn't nearly as deadly as the first; still, you were plenty sick enough, and all the horrible memories of the past came rushing back like a hurricane. But after a week and a half in the hospital, you recovered, with no further brain trauma or physical disability, which was a miracle on God's behalf.
At seven, you had several more breathing crises, and each time we feared the worst; but God was watching out over you. Even back then He had a plan for you; you weren't ready to go JUST yet, according to Him!
At eight, you were told by your doctors your lungs were starting to become weak; as a result, you now had to use supplimental oxygen from time to time, to give your lungs an added boost; and so far, it's been helping. You wear oxygen sometimes, but you don't let it daunt you; you still act like a typical little boy who loves his life; and you still do little boy things, like play your video games (at which you are a MASTER; I, your mother, never could figure out those danged computer or video games!), play baseball on the disabled league each summer (which you are an inspiration to the other members of your team; they just dote on you!), draw, color, write poetry or stories, or play on the computer. You never seem to run out of ideas or things to do, to keep your mind and body occupied!
Now, you are nearing the age of ten, and you still manage to overcome all new challenges that befall you; and I believe your life is only going to get better as time goes on! Not only do you have your family or your faith in your Lord Jesus Christ, you also have "Ginger", your helping companion, to help you and love you (or lick your tears away whenever you are hurting or feeling sad), and you have made so many wonderful friends at school, which has become so much easier for you this year. School used to be such a struggle; now you are sailing through your classes, and your teachers are absolutely blown away by your steady progress!
My little Johnathon, you are a MIRACLE. I look at you, and I see God in you. You enjoy all what life has to offer, even though you are dying, and you offer so much in the way of hope and life to others who may be suffering. You are a little Messanger of Hope, and God has been using you in such a mighty and profound way! You have blessed all of us tremendously with your courage, and you will continue to do so to others who are facing horrific challenges. You do not let the fact that you are terminally ill deter your path; in fact, it just only has seemed to make you STRONGER!!
I am honored beyond belief to be your mother, and I love you more and more each time I look at you. You are my Little Miracle Boy, and you are to be REWARDED for your courage! Jesus has some VERY BIG plans for you in Heaven!
I LOVE YOU, MY SWEET LITTLE JOHNNY!!
As always, Your (Grateful) Mother. ((((HUGS)))) and XXXXX's!!
Another remarkable write, keep them coming! YOu have a special gift, I'm glad to be a witness to this gift, and glad to read the works you write.
Your Sister in Christ
Michelle
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