Tuesday, July 10, 2012

Sleeping Beauty

Email received the next day...

Subject Line: 
Sleeping Beauty

Too dark for me and your readers.  The lady is smothering the person on the bed.  What is that all about?

Usually I just write a brief explanation back and carry on with my day, but today she got me thinking. To us, the video was pretty self explanatory, but in light of her email...maybe not. 

Dave and I love the band, A Perfect Circle, but mainly the lead singer Maynard James Keenan. He brings light to things most people are too afraid to. Dave came home yesterday and said, "hon, you've got to see these lyrics!" This song really resonates with us, for many reasons.

There are absolute horror stories of people in the special needs community being taken advantage of, in too many ways. It sickens the soul.  These savages are satisfied by luring desperate parents through therapies claiming miracle cures, sometimes millions of already dead stem cells injected, etc. But in all ways - these families are, often times, drained financially. Now I'm not saying all of them act in this manner, I'm just saying there are many. 

I know we see this happen in every arena; when we were adopting Aviana, with the elderly, with all kinds, but since we now have a severely disabled child, we are especially attuned to these types of stories. 

On another note, we have always had nothing but good to say about The Institute, and don't get me wrong...I do still love them, but as I've said before, I literally had to drag the information out of them as far as how hurt they felt Aviana truly was. Through our time, she was also making almost zero physical progress, I couldn't help but wonder, had we decided not to return, how long were they going to continue to advice us to come back every six months? 

I hate to even point this out, as they did so much good for us physiologically, and we are adults and eventually made the right decisions for ourselves, but when is it within them to see the writing on the wall and admit it, too? There was a part of us that couldn't help but truly reflect on their inflated ego within those very lyrics. 

If they always knew Aviana was indeed, just too hurt, then why were they pushing us to an absolute breaking point? And, it's one thing to break our backs, but a completely different thing when it came to Aviana. She was not allowed to have one split second of a break? The guilt that was laid in association with Aviana having a breather, and her recovery, was unbelievable. According to them, she was a round the clock machine, much like a robot. In the end, this was where we ended up butting heads. If she was making progress, I could see their point - to a stronger degree, but she wasn't...so I could no longer agree?

We could also relate to the video by way of thinking we could really help Aviana. We thought we could make her better. We thought we could battle this brain injury and win. We believed we would come out on top, but we learned early on...it was much too much for us. The beast was strong, and defeated us by a landslide!

So if you happened to watch the video, please know that this process takes on all kinds of forms and feelings, and at different times. Dave and I watched the lyric video, and we chose that exact one with the skeleton suffocating the faceless person lying lifeless in the bed, because this is the reality of our situation. 

I know, it's not pretty, but our lives aren't always pretty. How can they be? There are many shades. I can't come on here and paint a beautiful picture every time, because that wouldn't be the truth. The reality is that Aviana doesn't move and for the most part, she lays lifeless. And that skeleton, the one holding its hand over the face, and suffocating...well that's the goddamn brain injury. It's holding our girl down, lifeless.

So that's the long and short of it. That's what the video was all about. Nothing morbid, or bad, just the true nature of our situation, and the reality of what is sometimes happening to the special needs community as a whole.

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