We have been living in the land of limbo for quite some time now. We previously have always had a plan of attack and with every step ~ charged forward.
We have traveled back and forth to The Institute with the same group of families each time. With each new trip, it has become more than obvious, the gap has widened that much more between us. The families are passing us by and so is The Institute. With each trip, there are two days of lectures. This past time, the lectures were a complete waste of our time. They did not pertain to us in any way, shape or form. They not only didn't pertain, but they made us feel a deep, deep sadness.
Everyone else is progressing and we are at the bare minimum. With each trip, I've done my absolute best of making peace with this. I tell myself over and over, we are just on another path. That's not us. This is us. After two years and in light of
how hard we've worked, this line of thinking is proving to be too much. I surely don't expect them to hang back for us, but it just lets me know that something needs to change.
Going to The Institute is taxing in every way: financially, mentally, physically, emotionally, you name it. If Aviana was truly benefiting greatly from this program,
we would be back, every six months, for the rest of her life. At this point, she is not benefiting enough to continue traveling back and forth.
Lately, if the thought of how to proceed enters, we have a way of pushing it away just as fast as it arrived. It's as though we are living with the aftershocks of a monstrous earthquake. The earthquake being the program. We pretty much shut down towards the end of The Honeymoon. This period of time did not show us anything, either way. She did not slide back in a way in which we both exchanged that knowing glance and immediately had to jump back into the program with both feet. The Honeymoon also proved that not much harm was done by avoiding the frantic, often times ~ nauseating, incessant pace of the program.
Limbo is no place to be. It is unsettling. For us, when a concrete plan is lacking, it throws everything off. Every day feels wishy washy, and awful.
So where does that leave us? Well, I started a modified program at the beginning of September and have been working through. They ramp us up slowly, but we hadn't even started to pattern again. We start patterning today. The program we are going to incorporate for ourselves is one that is manageable and much less stressful. Dave and I poured every single ounce of our being into Aviana for two years. In that time I feel we did the work of approximately 5-6 years. With the amount of results we got, we proved to ourselves that we could back off some. So that is our plan, to back off. How much is yet to be seen, but we now have a good idea of where we are going.
We still think she will benefit greatly from the program, but just not at the pace they recommend. This has been a very sad realization, but it has been a long time coming. Now is the hard part, learning how to live this way. Learning to somewhat accept our reality, but still help her greatly.
This is our time to find some sort of balance within our family. This is our time to back some off from Aviana and concentrate on not just ourselves individually, but also Dave and I as a couple. We only get one run through this life and we are too young to completely forget about ourselves.
This has proven to be one of the most trying times of my life. All of the terrible things many of the doctors said channel through my mind. They attack me throughout the day, but especially at night. We now realize,
they were right! They were freakin' right! This realization is a bitter pill to swallow.
UC Davis makes us wonder. We trusted them most, much more than Kaiser. They make us downright angry now. They make us question why. This is just merely a snapshot of how it all went down, there was so much more than this. I asked them on a scale of 1-10 how bad the damage was to her brain? They told me it was a 3. I carried those words with me. Through every new doctor I encountered, and every new horrible prognosis, those words were my ace in the hole. They filled me with confidence and guided me through the roughest of times. This was UC Davis for God's sake. This was
the place. If anyone knew, they did, right? These were
the people, weren't they? Those words covered me with a thick exterior. An armor that protected me through the worst of the worst. While family and friends were falling apart all around me, I could stand there impenetrable. Unwavering, if you will.
These other doctors were also there to prepare us, to tell us the cold, hard truth. The grim reality. I clung to UCD's words and would not let them go or any others in. How was it that they could have seen a 3 when every one else saw a 'Game Over' flashing on the screen? Why didn't I listen to those
other words? Why didn't I flinch when they said, "look here, her entire brain is stroked. Can you see, all of the main areas are affected? Do you see this, she will never walk, or talk again? Can you see here, all of this is not supposed to look like that. Can you see, this is what your brain and my brain look like, can you see how much damage has been caused by the blunt trauma? Can you see? Can you understand? Can you compare? Can you? Can you? Can you? Do you understand what we are saying to you?"
In retrospect, I wonder about that stupid girl with her blinders on. The girl who shut down everyone else and believed in one. The girl who stood strong, and pulled everyone else onto her bandwagon. Why? It looks like I was the stupid one. I was the idiot who put all my eggs in the one UCD basket! It looks like they all had it right and I had it wrong. UCD had it very wrong. Oh well, right? Who was to know how this would turn out? Hindsight is always 20/20. I know we made the best decision we could at the time. I know I put my faith in who I thought would be right, only for them to be wrong. Wrong all along.
To this day, neurologists avert their eyes, because when they put her scan up, they have a hard time looking me in the eyes. Yes, it's that bad. And sure there are people who have horrific scans, but are standing there fully functioning. As you may know, this is not the case with us.
Oh well. It is what it is. We will make the best of what we've got. We will care for her and love her endlessly because in the end, she is obviously here for a reason. She deserves the best and most of us. All this bullshit is not her fault. She didn't/doesn't deserve this and she is just trying to love and be loved. She is just trying to enjoy the life she has. So that will be our goal ~ to help her recover, but to also let her have a life. We will no longer work her fingers to the bone either. What kind of life is that? From experience, it's not a very good one ;o)
Please keep us close in thought as we proceed. I have been so scared to let go. I am terrified to loosen my grip because to me, it feels, in a small way, like giving up or being defeated. I know it's neither and
we will never, but it just feels a little like it.
