a wake up call from my student..i feel ashamed of myself

After reading one of my GRC student's blog about this disease called Harlequin ichthyosis I honestly couldn't sleep very well. The description alone in the blog post says it all...

"...When they're born right, they have really tight and hard skin, almost like fish scales and its yellowish-greenish with red lines all over their body. They're eyes are really huge and red, and I mean REALLY red. Then they're nose is super small or sometimes it doesn't even jut out at all, more like just two nostrils. And that goes for the ears too.."

The thing is that this disease is rare and if you do get it...

"...Imagine this: you have the disease and you look around you and see the millions who don't. The other millions of people who actually look and act normal. The other millions of people who would think you looked like a total freak..."

I did a research on the Internet and found many things about this disease. It's a genetically inherited disease and when the babies are born their mouths are forever stretched open in a grimace because the skin on their bodies is drawn so tight that it pulls on every part of the body. In order to go to school, harlequin children have to bathe for 2 hours before going to school to "soften" their skin [when i mean soften it involves the parents scrubbing their whole body VIGOROUSLY until the old skin comes off, which means for anyone... it's gonna be extremely painful to have the skin ripped off your body] and then comes the lathering of moisturising cream to keep it soft. After school they need to bathe again in the afternoon.

It's painful to even see the pictures of the babies that are newly born and they have this disease. They have red eyes that bulge out of their sockets, their skin is so dry and tough that it cracks and there are rivets of cracks running all over their bodies. They already start bleeding the moment they are born.

Worst still was many people call these children "demon kids" or "alien kids". How can people even lift a finger and point at them like that? Sometimes I wish I could tell them that before they start comparing and making comments, how about that they try to put themselves into the shoes of these children and walk in those shoes for awhile?

Sometimes I wonder... whether in God's eyes we're like those harlequin children too? We're so wrapped up in our sins and our self-righteousness that perhaps they too have stretched our faces and bodies into a gruesome, alien-like appearance before our Father in Heaven. Maybe when God looks at us, we're so far from Him that we look grotesque and ugly.

But God sent Jesus to wash all that away. And now by the blood of Christ, we are made new. And we need to live our lives like its been made new. Sometimes we forget to live like we've been saved and redeemed for a life more than physical appearance, money and outward achievements. I for one am humbled and ashamed. I must confess, after reading my student's blog about this disease, I thought to myself, "how bad can it be?" It is THAT bad.

Nothing sums up how i feel than what Sophira blogged about last night...

"Tons of people look in the mirror and crap about their minor imperfections because to them, it's a pretty huge deal. Like my eyes are too big. My eyes are too small. I hate my hair cause its too curly. I hate my hair cause its too straight. My nose is enormous, my ears are long. My feet are too big, my fingers are fat. I'm not pretty. I'm not handsome. I'm too fat, I'm too thin. In fact, I look kinda ugly.

"And then everyone ends up at some hospital that does plastic surgery and everyone lives happily ever after."

We all think we're so smart on fixing or lives right?

"Well, guess what? Those who suffer from Harlequin disease (or any other kind of skin distortion, for that matter) CAN'T change how they look. They stick with who they are till they die. In fact, some of them don't even live for very long."

Fact is, sometimes we never open our hearts and our eyes big enough to realise that there's more to life than just ourselves. There are others out there who have it worse off than us and yet we complain.

"YOU are alive today and you don't have anything wrong with you. You live like a normal person. You wake up, go to school, hang out with friends, go catch a movie. You get to sleep tonight and face the very next day.Don't you find the reality of it just so amazing?I mean, you're ALIVE and BREATHING.

"Some people out there don't dare to look in the mirror to look at themselves. Some people out there don't get to see tomorrow's sky. Some people out there don't even get to see anything. And the list goes on.

"I'm not trying to discourage them or say they're cursed or anything but the fact that you're walking, talking, breathing, working, seeing is the greatest miracle already. A lot of people don't even realize that.

"So the question is, are you grateful for who and what you are today?Do you count every blessing you have?"

[I am starting to realise that my life is so much better off and I haven't been grateful enough for it, God. I'm so sorry, Jesus. I've been complaining and griping about life too much. Show me how to make a difference for others because You've already made me a different person.]

p.s. thanks Sophira; )