Every day I wake up is a gift from God. I wasn't expected to live past the age of five; however, God had other plans, huge plans, for me, my life.
I've outlived doctors' predictions by 11 years. That I am still alive now, at the age of fifteen and a half, is nothing short of a miracle.
I live with a progressive neuromuscular disorder, Duchenne's muscular dystrophy, which is why I use this electric wheelchair in order to get around. I also breathe with a trache; eventually, I'll have to breathe with the assistance of a respirator, but for now, I can breathe just fine without it; might as well enjoy it while I can. I can talk, even sing, with my trache tube; I've found a way to get around it.
It was a lot of work to learn how to talk, sing again, but I did it. :)
It's so nice to have a voice again after weeks of being silent. That nearly drove me crazy!
Having a neuromuscular disease like mine has changed me in ways that you will never understand. I went from a very active, happy little boy to one in need of help in my walking, getting by, and it was a very big adjustment for me. I was in a wheelchair by the age of six; I lost all ability to walk last year. Before that, I could get around for shorter trips on a pair of crutches; now I will never use them again, and it makes me sad.
I miss not being able to walk on my own.
I have pain in my limbs; pain like you wouldn't believe. It feels like Muhammed Ali is using me as a punching bag; sometimes the pain is so bad it nearly takes my breath away. I have intense muscle spasms; it only adds to the pain.
I have to be turned every few hours, so I don't get bedsores. I am too weak to be able to turn over on my own; I have to have others (usually my brothers, or my folks if they are nearby) do this. If I don't have this done, I'll develop bedsores, which will only complicate things.
I need help with a lot of things: eating (someone has to feed me; I try to do it on my own, and all I succeed in doing is making one heck of a huge mess!), dressing (someone has to dress me), bathing (again, someone has to do it for me; just washing my face is enough to wear me out; doesn't take much to get me tired), brushing my hair or teeth, and you can forget doing my socks or shoes on my own.
The only things I can do is move my hands enough to where I can play video games or type on the computer, write my name, maneuver my power wheelchair, or shake someone's hand. I can also move my hands enough to where I can still do my sign language. I can also blink my eyes, smile, laugh, cry, talk. I'm not totally helpless--close, yes, but I am not there yet, and I refuse to be.
Call me stubborn. :)
In addition to all of this muscular dystrophy mess, I have seizures; thank GOD they've finally found a medication that has controlled them. For a while, I was having frequent seizures; some were so bad I ended up in the hospital, fighting for my life. I have epilepsy; it's a result of brain damage I had when I was really small after a bout of meningitis. I'm a medical mess.
Somehow, through all of this, God's gotten me through. Ever since I became saved at the age of seven, He's been blessing my socks off. He's allowed me to live longer than what doctors thought I would, He's given me the gift for singing or witnessing to others about Christ's love, and He's given me the gift for words (have a book out; it came out last year). I've had the opportunity to talk to others about my experiences with MD and have met many famous people as a result.
It's been one wild ride, and I pray it doesn't stop for a very long time to come. God is not done with me yet, and I don't think He wants to take me yet until He sees otherwise. No, I don't know how much time I have left, but as long as I am alive, I might as well take all the opportunities He puts in my path!
If God can use a small crippled boy like yours truly as a beacon of hope, then He can use you too, no matter what problems you may be facing in life! No problem is insurmountable to Father God!!
I'm living proof of that.