Because she hasn't had the sort of recovery we had hoped for, we have been forced to rifle through every last end of our soul for the meaning of her existence. Over the years, I have vacillated from here to there, and am finally happy to say - I dwell with a grateful heart, for the most part, in the there.
Some others, who don't know her, or spend little time with her, forever doubt her worth here on earth. With, or without a word - it's completely etched and sketched. I have a front row seat on this journey, and while I understand completely, as I too have doubted, the pain is dulled no less.
It doesn't matter if it is straight up, or as gentle as gentle can be, it cuts both ways. The message is received. It's amplified and in the same manner...Aviana's worth here on earth helps to make the difficult decisions in others' lives. I understand the reality of this. It's just a cold, hard, fact of life. She serves many purposes, for many people. I understand. We too, have had to face it in our own lives. It's just one of those things that hurts more when heard out of the mouths of others. It stings the ears to know that your own loving child is used as a tool, or instrument, used to measure in the lives of others' mortality.
Had we known then, what we know now, we wouldn't have chosen this life for her either, but some choices in this life are chosen for you. As you go through, you think you know, but when push comes to shove...you learn this, we sure did. I always thought things would be black and white, but my gosh, as grim and dim as Aviana's situation was, how the heck could there have been so many shades of gray? I do not know, to this very day...
In fact as many long time readers know...we went into the family meeting to let her go, only for the game to change, in the 11th hour? But like I said, Aviana has had over 9 lives - for some reason her life continues to speak in whispers and so I will continue to listen. I will continue to look to the fact that she is here for a reason. And I will use that reason!
If Aviana died on the street that day, I would be no better than I was that day. And I suppose maybe some may be spared on this earth because some parents were in need of betterment, I was one such parent. But who really knows, I certainly don't. I have no answers to what this is all about. I'm only guessing.
Anyway, I've always liked a challenge, but I'll be the first to admit - since the day I met Aviana, she has been the biggest challenge of my lifetime. This is no walk in the park for me. I sometimes struggle with what is. I struggle sometimes over missing her so dearly. I struggle sometimes over little things - like the fact that I can't go to children's birthday parties and seeing all their healthy, operating brains, and moving parts at once. But at the same time, I also think I do exceptionally well considering. You all know exactly what this is like for me though, as I slather it all over these pages. It's up, it's down, it's all around. For me, it's so many things to have a child like this. But overall, there isn't a day that goes by that Aviana hasn't pushed me further, made me stronger, or made me reach so far outside of my comfort zone it isn't even funny!
She is someone that has a way of forcing everyone around her to take a deep look within. Whether you like it or not she makes you face the parts that are pretty scary to look at. She is someone that challenges every boundary of your being and makes you question yourself at your core. She is someone that shows you what you're truly made of, or not. She holds a mirror straight up to your face, even when you don't want to look! She's hard-core...because sometimes, you see things you don't want to see! Sometimes you see things that need some fixing! Ohhhh...that guuurl!
Sometimes she shows me impatience when I'm feeding her and she won't open her mouth for the 57th time. Sometimes she shows me that she's in severe need of a dunk in the tub, even when our backs our breaking from carrying all 36 pounds of her around all day long. Sometimes she shows me much deeper and darker things I wish not to have ever seen. These are the reasons it just might be a little exhausting, at times, spending all day staring at her over Christmas break : ) She points out all of your good, but doesn't hesitate on your flaws too!
Seriously though, over the years she has pushed me to do things I always wanted to, but didn't. Things I never thought I could, and did! She has made me do things I never thought I was strong enough to do. She has shown me I have strength I never in my life thought possible. I have been through things in the hospital with her (can't stop crying) that I can't even believe were possible. She is the...
I have veered slightly off track, but what I want to say is, as long as I can remember, I have always wanted to give of myself physically. But for one reason or another I have always found an excuse throughout the year to write another check, to another cause. Which wasn't bad, I felt good in doing so...it's just that in the back of my mind...I always knew I was internally coping out on myself - yet again.
Many over the years have doubted Aviana's worth, myself included. I want to take the time today to talk about her worth.
Without one single word, she puts words in my mouth and all over these pages for Aviana's Elves.
Without one single movement of her body, she puts ours in full motion for Aviana's Elves.
Her little heart has expanded mine 1000 fold.
I take zero credit for Aviana's Elves, and give her full credit for everything you have seen over the past two years, as we are truly working through her.
I just know that without her, I would never have physically done any of this, as she motivates me to do better. To be better.
Aviana's Elves. How appropriately named, as we truly are her elves : )
Her worth...it's immeasurable. Lives? I don't know how many she has left here on earth, but what I do know is this - I will continue to physically give for not only all of her days, but all of mine too. Through Aviana I have learned that there are many that can't...
but I can, so I will.
but I can, so I will.
As for Aviana, I know she will continue to inspire those around her. She will continue to challenge people. To teach people. To show everyone to take the time to look beneath. She will continue to be an example of what life is all about...and it's simple -
A giving spirit. A beautiful soul. And above all...a loving heart.