Monday, August 8, 2011

Somewhere Between

Having Aviana the way she is has a way of making me feel like she is not quite alive, and not quite dead. I know this sounds awful to someone who has never been in our shoes, or maybe even to people that are, but this is how I feel. These thoughts are very real, and are never far.

I feel we are living in the land of limbo, without end. It is a very unsettling feeling. I try to stay as positive about our situation as I can, but there are so many things that happen in one day's time that cause the thoughts to swirl. I just wonder what it must be like for the people who come visit us, or spend any length of time with us? I try and put myself in their position, and for me, I think it would be hard to be around us. Too much reality dwells within us, and around us.

I so admire all of you who reach out to us, and spend time with us, and send your love to us. The reason I have the utmost respect for all of you is because I was a former tragedy dodger. Not because I didn't care, but because I was scared. I felt saying almost nothing was better than saying something wrong. I respect people who puts themselves into our space. With every comment, card, or call, I know you have what many do not. I certainly didn't. And to those that never say a word to us, I completely understand, for that was me. I cared immensely, but just couldn't show my face very often.

It is extremely hard to live without end. I don't feel our sentence was ever ended and it just keeps running on and on and on. In every situation throughout my life, I have wanted some sort of closure. I have felt a sense of unrest in the areas where there was none.

I am happy with the progress Aviana has made, but today I am convinced that it is not enough. When I am in my own little bubble, I feel much better, but when I venture out and see how others live, laugh, love, joke, run, smile, eat normal food, enjoy, just are, my destructive thoughts rope me back in and chant, "this is not enough, not near enough, nor will it ever be!!"

I don't know how to wrap my head around this life. I try my damnedest, but I struggle with how to be okay with,

I think she's happy.

I think she thinks this.

I think she is crying because of that.

I think she is feeling this.

Maybe she's that.

She has her own way of enjoying.

She smiles with her eyes.

She is taking everything in in her own way.

She can't do anything, but she is enjoying watching everyone else.

Let me move her around the house a few more times so she can see different things.

And so many more.

Don't feel bad if you have said any of these things to us. We say them all out loud and to ourselves a million times a day. That's all we can do. That's all we can think. How else are we supposed to get through this horrific situation?

Days like today make me wonder what it's all about. Why were we chosen to live somewhere between life and death. I should more appropriately rephrase that, why were we chosen to live a few notches above death?

At the end of my days, I want answers! Does that sound too demanding? Well, I want them. I will live this life to the best of my ability, but in the end....I better be shaking my head in agreement as I look at the entire motion picture of my life!!

Hopefully I will be feeling better in the next few hours, but truthfully, these thoughts are the undertones of every step I take, and every move I make...


  1. I think you've put it so well. YOu are stuck in this land of limbo, what kind of living is she doing other then just living. What can make living better for her. Thats why I asked if when she's older or at some point will she be able to try one of the computer thingys (I know very technical) where she can just use her eye's to look at each letter, so that it woudln't be as hard or tiersome for her to communicate. I think the lack of communication other then what you can pick up from her would be so difficult, plus if she could really communicate when she wanted to she might enjoy living alot more, and other people would be able to also interact with her, like a person rather then a brain injured girl. I know you want her to move and use herself, I just kept thinking that something like this might help everyone feel like she was more then just a spectator in life.

  2. I always wish I knew the right thing to say, the helpful thing, but tonight I do not. I do hear you though, really hear you. I'm sure if I were in your shoes, I would wonder the same things. If I were in your shoes, I'd be wanting a Do Over, every single day.

  3. That was me, Dixie, who wrote without signing.

  4. for avi all you can do you are doing. it's a long road with no end in sight.....but she is taking you on her journey.

    i often wonder - how does she see life, what are her thoughts about this or that, can i put myself into her little shoes. ....i am reminded of the movie TOMMY - from theWho......granted the situation in the story was not the same - but he had been normal and suddenly he was deaf dumb AND blind.....and he's singing out inside hisself to see him, hear him, feel him.......and then the movie twists and everyhone is putting masks on their eyes and plugs in their ears and tape on their mouths because they WANTED to be just like him.......what would i do, how would i view the world if i were to look through avi's eyes? ....i can see that she still loves living she has laughter in her eyes. she is fiesty, she has spunk & determination in her eyes. she is smart....just look at how well she does on her board (when SHE WANTS TO :) ....)

    as for you my friend. you WILL get your answers. you are not going through this vast limbo without finding out the reason why.......but never ever feel that you have to go through it alone.....we are hear. and when you are so overburdend that you feel you can't possibly take one more step. and you look down and see that you seem to be walking all alone for there is only one pair of feet making prints .....know that that He is with you...He is carrying you through the hardest spots. God never abandons His children.
    (and yes i was paraphrasing one of my favorite a favorite movie & a favorite poem....all in one post! ....geez must be the irish in me. i am full of the gab tonight!)

    <3 <3 TONS!!!!! ~j