Friday, June 22, 2012


After being on The Institute program for a full year, it was more than clear to us that Aviana was barely making any physical gains. We pressed on at full speed though. What else were we supposed to do? We felt this was her absolute fighting chance, so we were not about to stop. At the time, the mere thought of slowing caused instant nausea anyway.

Once we went on our Honeymoon from the program, we were downright exhausted. At first, it was extremely difficult to switch gears. We quickly found other important ways to keep busy though. At the end of our time off the program, we found ourselves standing squarely at a fork in the road. 

To our sad surprise, Aviana had not slid backwards as we had hoped, as we had secretly wished her to. We figured with all those hours and hours of therapy a day, she would surely digress. We definitely thought we would see the ramifications of backing off from that sort of intensity for three whole months. We expected an immediate "kick it back into high gear" plan would be set in motion, but no, there was no such thing.

That in itself was a devastating blow, and one of my lowest points. For that was the moment I feared most as we initially embarked on the program in December 2009.  I remember saying a silent prayer before we started...please don't ever let us arrive at a realization void of progression. Always keep us in some sort of forward motion. Please don't ever let this be all there ever is. Please, I beg of you. Please don't ever leave us, and let this be. Please. Always provide us with something, anything to keep us going. Please give her some sort of quality life. Please let her be able to do something, anything. Please.

So after pouring our blood, sweat and tears into the program, there it was, that stark realization, that unimaginable reality was indeed staring us right back in the face. All that we had hoped, and prayed for wasn't going to materialize...those were some difficult days.

We weren't sure what to do, so as you saw, what started out as a tightly clenched fist around that program, slowly loosened over time, until we finally released our grip, and let it go. It's awfully hard to see something work for others, but to at the same time carry the truth deep in your heart, and know it's not working for your own child. In the dark of the night, in the deepest corners of my mind, the voices would play, the damage is just too great, too global, too severe. They were right.

Albert Einstein said, "Insanity is doing the same thing over and over, and expecting different results." Throughout my life, I have a habit of taking a few steps back and assessing my life for this pattern, the pattern of insanity. Am I acting in an insane way? In that regard, we definitely were, and were for way too long. It had to stop. 

The pain at that time was like a heavy weight, bearing down deeply upon my chest. I'd repeatedly try to stand straight, but it would lie itself right back over the top of me. Bastard. 

Changing gears on the heavy machinery of the mind takes time. The massive piece of equipment must first slow itself. This took a great deal of time, energy and anxiety. After all, the gears were as far apart as they could possibly be. We were switching from that of a take no prisoners, forward moving one of recovery, to that of a well balanced, life sustaining one of acceptance.   

Acceptance was, by far, the hardest part, but once we finally recognized Aviana for exactly who she was, the heavy burden finally freed from our shoulders. We just wanted her to be happy, and to enjoy what life she has left, no more, no less.

I had the hardest time, and still to this day stumble over my words, at times, in explaining something though. We had so much hope when we were in the hospital, and all the way through the program, but a strange thing happened along the way. In realizing the true reality of our lives with Aviana, we lost all of our hope, in a sense. I don't mean this in a negative way, but in the way we all seem to perceive the word hope. In our world, the word hope seems synonymous with recovery, but for us, recovery is no longer the way in which we view Aviana.

Out of curiosity, I just looked up the word hope and here is the definition -

1. to cherish a desire with anticipation
2. to desire with expectation of obtainment
3. to expect with confidence

Ok, so yes, we all hoped she would get better. We all hoped for some sort of recovery. We all hoped she would walk, or talk, or smile. We all hoped she would laugh. For God's sake, we all hoped she would be able to show some sort of happy emotion. Hoped, hoped, hoped. No wonder it all dissipated with the program, and over the past three years, right? It makes perfect sense. 

However, I couldn't figure out my exact feelings on the loss of hope and acceptance. I would try to explain it to people, that it wasn't a bad thing, it was a good thing. That the loss of hope, and acceptance go hand in hand. I promise. It always seemed to come out wrong, but it was because I couldn't accurately explain my heart.  

In past posts I've touched on the fact that the book, The Power of Now has become my bible. As I was reading, it all became crystal clear. There it was, in black and white, laid out so eloquently, my exact feelings. 

"What you refer to as your "life" should more accurately be called your "life situation." It is psychological time: past and future. Certain things in the past didn't go the way you wanted them to go. You are still resisting what happened in the past, and now you are resisting what is. 

Hope is what keeps you going, but hope keeps you focused on the future, and this continued focus perpetuates your denial of the Now, and therefore your unhappiness."

Yes, it all makes perfect sense. In our new found acceptance of Aviana, hope had lost its place. We now appreciate Aviana for exactly who she is and no longer for what she can or cannot do, or what she might or might not do in the future. There was no more room in our hearts for hope. We no longer hope  for her future. We do not hold out hope for anything else for her. Sure things like happy emotions would be nice, but if they happen they happen, if they don't, they don't. It's completely different than it used to be. It has been a paradigm shift for us, completely life changing.

I was so thankful for this explanation, as it put actual words to my mixed emotions! 

If you can believe it, this was not at all what I had planned on talking about today. I suppose this was all kind of a necessary prologue to what I have yet to say : )


  1. I am in awe of your ability to put into words this very complex progression.

    I have known so many people that have been stuck in hope or denial and were unable to "enjoy" their child as they were. It hurts my heart to watch some people in your situation live with so much anger. I have handed out many copies of "A Trip to Holland". If I was still working, I'd give them your post (with your permission, of course).

    In some ways, Avi reminds me of some children with autism. It's impossible to know what's in their heads and what brings them joy that we may be totally unaware of. From my POV, I think she may feel she has a very happy life, just not the life you wanted for her. She's loved, cherished, cared for beautifully, is surrounded by people and a dog who think she's the best, and many adoring fans.

    Jen, I hope you write a book. It would help so many other people.

    Love you,

  2. Very thought provoking post. I recently read a quote that said "The secret to having it all, is knowing you already do" and I thought hmmmph, that's interesting. I have never read The Power of Now, but that quote seems a similar sentiment. If we are always looking for something better in the future, we are not fully enjoying the now. I think I get it.

  3. How very, very accurate.

    Hope is a very powerful thing. It is almost like a drug in that it can turn your head into not only thinking one thing, it believes it with everything you have. Hope is tunnel vision. Hope can make you see things that aren't there, or go blind to what there is.

    I relate to the phrase "this continued focus perpetuates your denial of the NOW" as that is what I'm running from. NOW. I can't do NOW right now.

    You can.

    This is just one of the many, many things that makes you so amazing. So admirable. So wonderful. So lovable. So quirky. So funny. So silly. So unbreakable.

    So YOU!

    I love you and am so grateful to have you in my life as you teach me to stop denying the NOW.

    Even if I don't listen to you :)

  4. Jen, what a powerful piece of writing. So much to digest. Been thinking about you guys and also about time and how we perceive it in relation to what we are feeling. ((HUGS))

  5. I love this with my whole heart. I literally felt every word of this in my chest. Especially the part about watching other children go through xyz and getting results, why not ours? I remember trying to convince myself..."Am I seeing something? Yes? Maybe. I don't know." And it was always the same answer: No change. Actually, that's not correct. There was change but it had nothing to do with "doing" and everything to do with just "being." Oh, I think you've inspired my next blog entry, Jen!

  6. I'm with Shauna on this one - I love and can identify with MUCH of this - and this journey. I definitely feel in a similar place.

  7. I do love this post. I think of you often! Give Avi a hug and kiss from me!