Wednesday, July 11, 2012

Long Story, Longer

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 corruption and greed 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 advise 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' 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 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.


  1. I honestly believe that the Institutes will keep a family on the program forever. Although I have much respect for that place and all the wonderful doctors there, it's true that our children are part of their ongoing experiment; to see what works and what doesn't, so that they can better help the kids in the future. That is one of the reasons why they request that you do no other therapy while on theirs; they need to know if what's working is actually their program.

    While we were there we saw many kids that appeared to have no injury at all and then we saw those like Aviana who could only lay there and not move their body on their own. Audriana was in the middle of those two extremes. The Institutes did tell us that the hardest brain injuries to treat were those who had a loss of oxygen, like near-drowning victims, because their brain injury was "global" -- not just in one place of the brain, but everywhere, leaving little healthy brain to work with. I think they can make this assessment as soon as they see a child for the first time. Of course they can. But because they are always striving to find a "way" to bring these kids back from brain injury, they do not turn anyone away saying that they are hopeless, nor do they ever tell them to quit. To them, even getting them off seizure meds is worth being on the program, and they will always try and try and try on the chance that this one time they will find a breakthrough. I think it's a bit selfish on their part to do that to a family...but then again, if they are doing it so that they can better help kids in the future, maybe it's not all that selfish. I don't know, I guess I have mixed feelings about it. I do know this, though: they never would have told us to quit the program. Audriana would still be on the program today if we had never quit. And as great as that program might be as far as helping kids, it's no way to live out your childhood.

    Anyway, I totally get that video and all that it signifies to you and Dave. Avi is being smothered by this brain injury, and the unfairness in that hurts my heart. I wish it weren't so. I wish there was more we could do to get her better. I wish I had an answer for you. When I first "met" you through this blog, I thought the Institutes was that answer and that is why I recommended it to you. But it wasn't the answer :( I pray that the answer is still out there. But even if it isn't and this is as good as it gets for her, I think you guys are doing the right thing by making sure she has experiences such as school to keep her busy. Sometimes the best that can be done is to make each day as joyful as you can, giving her places to go and things to see.

  2. I have several thoughts, only kind of connected. I think every parent should do whatever they think will help their child, but I think it only makes sense to stop when their child no longer shows progress.

    What bothers me about The Institute is that their program was part of my studies in an Educational Psychology class at college in the 1960's and it was pretty much debunked then. I know several kids (locally) who were patterned with no changes. What I wonder is this: do their kids get better because of what they do or do they get better because they are at a point to benefit from various therapies that are applied. It's such a huge financial and time commitment, that I wish there was more hard evidence.

    And, finally, Jen, I am always amazed at your wisdom!


  3. I understand both ways of thinking but I believe it would be better to give parents a little hope and to continue with therapies to see if they benefit these children versus taking away a parents only hope and advising them to stop. I think they should warn parents in the beginning with what the usual outcome in their curcumstance is. These doctors can't always predict the outcome and certainly aren't God and I think a parents instinct is best knowing when nothing is working and when its time to stop.I believe this strongly because my child's doctor was extremely negative and told me he would never get better and recover. He gave us no hope. I didn't believe his doctor and kept pushing through traditional therapies and could see improvement which at the time his doctor denied seeing. My son eventually recovered fully.
    If you didn't go through this difficult therapy with Aviana you may have had thoughts that maybe you didn't try enough and if you had done more maybe the outcome would be different. As hard as the program was you will never have to wonder and you know that you did everything possible. I admire you and Dave so much as parents and Aviana is so lucky to have you both.