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Sunday, July 02, 2006

Faulty Elevator...

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There are times in my life when the trials and complications brought about by having a child with a disability seem almost normal and mundane. Times when we have become so entrenched in our daily routines that we fail notice how different things truly are for us. During those times I can see nothing except my beautiful daughter Samantha.

And then there are the other times. They are rare, but they do happen.

The times when, just for a moment, I can see her as the world does.

It breaks my heart.

I struggle with the acceptance process during these times. You would think that the diagnosis of a disability would be shattering and then get better or easier over time. The reality of living with that diagnosis for the rest of your life, day in and day out, is often like riding a faulty elevator. Things seem to be easier for months at a time, but in reality you have simply grown used to what ever it was that caused the initial shock. You develop emotional calluses that protect you from that particular pain. And then the elevator shudders to a stop and suddenly begins to plummet towards the bottom floor again. You gasp for air as your stomach suddenly jumps into your throat making it impossible for your scream of terror to squeak past your lips. You cling to anything familiar praying for time to freeze before you crash to the bottom yet again.

Samantha is having such increased drop seizures that she is in danger of breaking bones in her face or head. I KNOW that she needs a helmet to protect her, but this is a callus I have not developed yet.

I knew for six months before she got her first wheelchair that she actually NEEDED one, but even that took an adjustment period.

It isn’t that an extra accessory or two changes who she is or how I see and love her. But I know that the more equipment she needs will change how others see her. I don’t know why ignorant people bother me so much after six and a half years of dealing with them on an almost daily basis, but they do. I want so badly for people to see her through my eyes instead of seeing “that kid in the wheelchair and helmet that doesn’t talk”. It is hard for most people to look past those THINGS and see my daughter for WHO she is. They see the equipment and the diagnosis while totally missing the phenomenal little girl they are attached to.

And I hate them for that.

My daughter is a fighter. She has survived TWELVE operations in SIX years. She has fought through more seizures daily than most people even OBSERVE in a lifetime. Her smile can light up a whole room and take your breath away at the same time. She has the ability to look into your eyes and see straight into your soul. She makes you notice the little joys in life all around you. She is a miracle.

I only wish I could make the world know that like I do.


oldfartswife said...

God Bless Sam. I see her and she is a beautiful child.
You just have to get out there, do what you want, wheelchair, helmet and all, most people will see her beautiful smile and remember that, not the chair or the helmet. When I was younger it hurt me when people would stare. Now i just smile and expalin to the kids that "they are so lucky to be able to walk and talk.
My neices and nephews tell everyone that stares that "Larrys brain did not grow right and he will be be a baby forever", they smile sadly and hug or hold his hand.
Unfortunately, it does not get easier, you just have to keep the faith and hang in there.

Laurie said...

Sending you big (((hugs))). I found the link to your blog from the AS list, and you've put so eloquently how I feel some days.

Melissa said...

oldfartswife - Thank you. It is always nice to hear from others who truely "get it". I hope the old fart will let you post pictures of "the kid" again soon!

laurie - Thank you for stopping by! Big hugs to you too! Come by anytime!

Sol said...

theres this kid @ a Centre i sometimes volunteer at.

one day, he caught my arm and pressed it *liek he usually does* while saying

"____ is the saviour of the world!!!"

i smiled @ him, trying desperately to hide that feeling of inadequacy welling up inside, knowing full well i could never, ever live up to this kid's expectations of what such a character is supposed to be.

hell, i cant even manage my own life properly...

sometimes i hide from their eyes, these kids..afraid their gaze will bore into mine soul's depth and lay bare the pitiful excuse for a human within.

yes, these kids are fighters.
i only wish i had their strength.

Douglas Cootey said...

I only wish I could make the world know that like I do.

You just did.

Beautifully expressed, Melissa. What a wonderful mother you are. I wish you all the best with your little fighter.

Douglas Cootey
The Splintered Mind

Melissa said...

sol - The fact that you see the beauty within a child who is trapped in a less than perfect body already makes you a hero to them and those who love them. You are far from a pitiful excuse for a human being... you are more of an example of what more humans should be. Thank you.

douglas - Thank you for stopping by again! Your encouragement means so much to me. Thank you.