How I or Miles, Sr., wish that we could turn things around: go back to the halycon days where we didn't have to worry about things like doctor's visits, tests, fear, pain, or uncertainty ...
Yet we are unable to. We have to face facts that our little angel-boy, Miles RaShawn, will probably never reach adulthood and face the grim possibility of purchasing items such as crutches, wheelchairs, braces, or hospital stays.
Miles is five years old, the spitting image of his father, Miles, Sr. While he may look like his daddy, he has my personality: quiet, serious, thoughtful. And very intelligent.
At the age of five, Miles can read fourth or fifth grade level books, operate a computer, build complex puzzles, make intricate buildings with his Legos, sing and read music, play the piano (he is taking piano and voice lessons), and make people laugh with his wry sense of humor.
He is a miracle (then again, aren't ALL children??).
We weren't supposed to have kids, but God had other plans. That was when Miles came into the picture. All seemed perfect until he was two, right as he was learning to walk. We didn't think that his delayed walking was a sign of things to come, but his blood work was abnormal, so this was when our (his) pediatrician, suggested he have further testing because said pediatrician suspected something was wrong.
Oh, boy, was it EVER. This simple blood test led to more advanced, more invasive testing at the hospital; when the results came back a week later, the news was not good.
Our son, our beautiful little child, had the beginning stages of muscular dystrophy. The worst kind possible: Duchenne's, which primarily struck boys and shortening their lives. (People who have it die in adolescence although a few hardier children live to be in their twenties, some even making it to their thirties, before finally succumbing to lung or heart failure.)
It was the worst news we could have ever imagined. One moment, we were a normal family: the next, we became a family with a child with significant special needs; as time went on, his disease would only grow worse and excepting for therapy, supportive medication, and adapting to his condtion, there wasn't really anything we could do.
We cried for days, no, weeks. We still cry now as we think back to the news we got, the news that would rock our world forever.
And with Christmas quickly approaching, we are left wondering just how many Christmases little Miles will have left once his disease starts taking over his body.
God, why?? Why did this happen to us?? What are we going to do?? We need Your help now, more than ever! The greatest Christmas present You can ever give us is healing our son of his muscular dystrophy!! He's only a little boy; little boys like him should be running around and playing, not spending time at doctor's offices or crying out in pain as therapists stretch his limbs!
~To be continued.~
