Monday, August 22, 2011

Demise

Why might you ask was my past week so horrible? Well, it is because it was Aviana's birthday. That sentence does not sound right. It hurts me deeply to string those particular words together. They hurt me so much so, that I could not function last week. I could not write last week. I could not speak last week. I could not stand to even be around myself this past week.

I have a hard time faking things, or acting as though something is not. I wear my emotions on my sleeve, and to conceal this truth, was just about impossible. There was only one person I was desperately trying to hide these feelings from, and that was Aviana. I don't mind telling all of you, my family, my friends', anyone, but keeping it from her was my greatest task at hand.

Tears are spilling over as I write these words. She doesn't deserve this. She doesn't deserve for me to feel this way. She doesn't deserve what has happened to her. She deserves for her birthday to be as it used to be. A day of love, laughter, friends, big smiles, and celebration.  A day that is all hers. A day she was born into this world by a loving mother, a world away. A day she had the honor of spending with her birth mother. This was a day her mother put her own feelings and emotions aside, and tried to do what was absolutely best for her sweet little Ana. Her mother knew once this precious day was over, she would be handing her very own little girl over....forever. August 16th is the day of Aviana, and nothing less.  For all of these reasons, I felt like the biggest piece of trash for letting any other reason but celebrating her, get in the way.

In taking care of Aviana, there is a switch that must be flipped into the 'off' position in order to see the things you must see, and do the things you must do. I am fully capable of flipping that switch when need be. I have become a master at knowing when it needs to be flipped in order to carry on, in order to accomplish the tasks at hand.

I try very hard to not put much emphasis on dates, and months, and so on. I feel it just makes it that much harder. For me, if I just keep on going and honor the day, but not stay too long, it just has a way of making it easier. I am then not just hopping from one unpleasantness to the next, to the next, and then to the next. I feel if I carried on in that way, before I knew it, I would look back and would have wasted my entire year.

Aviana's birthday is the exception to this rule. Her day is, by far, the most difficult day of the entire year for me. With Aviana's birthday, there was no way of escaping, no way to deflect anything, and that damn switch is stuck in the 'on' position, never to be turned off.  For that reason, I am forced to sit in a pretty awful space.

I am not only sad for the understandable reasons, but am mostly sad for feeling Aviana can see straight through me. I did really well on her actual birthday, but the day before and the day after were truly horrific. It was as though I couldn't even look at her. I spent the days walking over to her, seeing her beautiful little being, thinking of her birthday, and then quickly having to escape the room to go cry in the furthest corner from wherever she was. As hard as I tried, this action was sadly stuck on repeat.

You might be wondering why it is, that I can't be happy for the simple fact that she is here. That she survived. That she is with us. For our family, it is just not that simple. It all goes back to the decision we made to let her live, instead of die. For us, it is all about quality of life. And while we made the best decision possible, and while we know there is no turning back, and that she is here for a reason, to me, she doesn't have much quality.  I venture to think if you spent an entire day with us, you might agree.

We had no idea what to do with her on her birthday. We tried to ask her, multiple times, on the FC Board and she refused to answer. Dave knows how difficult this day is for me, and is so very sweet to always take the day off of work. We ended up taking her to the Jelly Belly Factory, and to be honest, it was more than obvious, she didn't seem to really care what we did.

I'm going to stop now, because this is way long, and heading off in all different directions. I am having a hard time explaining everything, and I feel what I am trying to explain, is not coming out to the best of my ability.




My Uncle always brings the most beautiful cakes. I think Aviana's cake was the best of all ;o)








Yum! It was so good!













Rainey is showing exactly how I feel.
























Pissed off!












She got a little bit better.

14 comments:

  1. You are so right in the fact that she DOES NOT/DID NOT deserve what happened. You couldn't be more right. My mind just keeps going back to: THANK GOD she has you and Dave as her parents. I cannot imagine a better silver lining for your girl.
    xoxo
    Fi's mama

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  2. Fi's mama said it pretty well. Aviana did NOT deserve any of this. None of you did. I won't pretend to know just what you are going through, but I can understand how those dates are so painful. Avi has a wonderful, caring, selfless mommy and daddy, along with the rest of your family. I know that it isn't much in the way of comfort, but you have been able to give her what she needs right now. She has grown and succeeded in ways that the doctors didn't think was possible. I wish that I could reach out and give you both a big hug.

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  3. I don't think that there is any possible way to get over the feeling that she doesn't deserve it. That will never change and never get better. I do believe that a lot will get better, just not this exact thought. It is so horribly hard to live it. I know that her quality of life is no where near okay. You just make the best of life no matter what. You have no choice because you only have one chance to live it.
    I am more than sorry that life has turned out this way. You do such an amazing job making the best of things and faking it when needed. You are doing all of the right things and looking at life the best way that you can. You are such an inspiration. Aviana is more than blessed to have you in her life.
    PS love the pictures!

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  4. Her cake, it's a princess cake, right? My fav! And it's beautiful!! Just perfect for her!

    Your third paragraph made me cry. As a mother, a fostermom, an adoptee, but most of all as an adoptive mother, I really think I get how you feel. It's hard to go through the highs and the lows of raising a child without thinking about their birthmoms and what we owe them, on some level. We all do the best we can everyday and sometimes things happen that are beyond our control, but that doesn't take away the awful pain and the feelings that we failed in some way. But those are feelings and the reality is that you did everything right and you continue to do so every single day. More than anything, I wish you peace.

    XOXO
    Dixie

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  5. I'm so sorry. I can't imagine how difficult that must be. You do NOT need to apologize or explain how or why you feel the way you do or that you feel angry or sad or pissed. You feel. You FEEL. YOU FEEL THE WAY YOU DO AND THERE'S NOTHING WRONG WITH IT. Nobody else can possibly imagine how hard this is for you. I'm so sorry.

    I love you.

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  6. So many virtual hugs! I'm so sorry you've had such a hard week. I can't even imagine. But the cake is beautiful. Aviana is beautiful. And your post is beautiful! :)

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  7. I don't know by what standards you are judging by, but I feel that Aviana's quality of life is pretty darn good. She is not 'just' alive, she can respond, can communicate with you, with her eyes and body language if not the FC board or other ways, etc. She is not in a long term health care facility. She gets to spend every day with her mommy and daddy. And pet. TRUE, it is BY FAR the quality of life she deserves, but it is BY FAR a greater quality of life than she could have. I know, easy for me to say, but please, dont knock her quality you work so hard for. It is filled with love, if 'nothing' else. I hope this came across right.

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  8. Oh Jen, I wish I could be there for you more and give you a hug in real life and not just in virtual! Lisa above could not have said it better. You have worked so hard and Avi has improved so much base on what I've read in your blog. There are a lot of things that AVi can't do but that doesn't mean she can't feel happiness and I'm sure she feels all the love you and your family have for her. Don't regret the choices you've made, never, ever regret. You guys made the best decision you could at the time and you are doing the best with that path. Please, please don't feel like Avi doesn't feel happiness in life, I've seen it in your pictures, read it in your blog, especially when you have told of choices she's made with FC board, like her choosing the Minnie Mouse shirt (I think it was Minnie).
    Love you Jen!

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  9. Oops! - That was me, Jess, on the above anonymous post at 6:46 am

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  10. I appreciate your honesty and ability to share and bare your soul. Keep it up. Your daughter is so beautiful. Happy Birthday Aviana! And the cake was impressive. I love bees so the hive was up my alley.
    Quality of Life is based on "being","belonging", and "becoming". From what I've read here, Avi has those nailed because of your incredible love, selfless care and undying thirst and quest to find the best therapies to heal her. Know that the choices and decisions you make and have made were not in vain. Every time she does something that surpass what doctors have suggested- thank God, yourselves, and Avi for having the ability to prove them wrong. Holding your family in the light.

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  11. kimber J and lisa are correct.........but i understand what you are getting at, avi deserves MORE.....but these things take time

    unfortunately as human beings we are an impatient lot. we want it and we want it NOW....we don't want to wait through the passage of time

    aviana WILL GET THERE in her own sweet time. just looking at the pictures over the past year i can see how much she has grown & changed and improved because of you and dave and the institute (and the countless other people who help)

    i'm still chuckling over her definite *not like* attitude about being at the jelly belly - and how she warmed up to it a bit in the last picture --- that is often how i feel when i am 'forced' to go there, but you can't help but liking it once you are there.

    last w/e i was at the HONKY TONKIN' Festival in Chico - it was a fundraiser for handi-riders and i couldn't help but think avi would enjoy visiting their facilities. i have some flyers & information i will send you .....maybe her NEXT BIRTHDAY? http://www.honkytonkinontheriver.net/

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  12. Maybe she didn't like the smell of the factory. I think if I went in there right now, I'd probably lose my lunch. Then again, I can blame it on the hormones.

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  13. I am so sorry that things are the way they are. I am so so sorry. Just know that that there is a family in Louisiana who cares, and who is praying for you and your family.

    Congratulations on getting the feeding tube out - that is a testimony to how good of care you are taking of her and how committed you have been to the program.

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  14. Jen - You & Dave made the right decision at the worst moment in your lives.

    Of that I have NO doubt. None. Not one bit.

    I love you Avianna... You've made me a better person.

    Andrea

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