Because she hasn't had the sort of recovery we had hoped for, we have been forced to rifle the ends of our souls for the meaning of her existence. Through the years, I vacillate, but am happy to say - for the most part - I dwell with a grateful heart.
Others who don't know Aviana, or who've spent little time with her, forever doubt her worth here on earth. With, or without a word - her worth is completely etched and sketched. I have a front row seat on this journey, and while I understand completely, as I too had past doubts, the pain is no less dulled.
It doesn't matter if it is straight up, or as gentle as can be, it cuts both ways. The message is received. It's amplified and all the same... Aviana's worth here on earth helps to make the difficult decisions in others' lives. I understand the reality of this. It's a cold, hard, fact of life. She serves many purposes for many people. I understand. We too have had to face this 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, an instrument, a measuring device used 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 life are chosen for you. As you go through, you think you know, but when push comes to shove...you learn. We sure did. I always thought decisions 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 don't 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 are spared on this earth because maybe those parents were in need of betterment? I was one such parent. But who really knows? I certainly don't. I don't have any answers as 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 of my lifetime. This is no walk in the park for me. I sometimes struggle with what is. I struggle sometimes over missing her 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 my comfort zone it isn't funny!
She's someone who 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 who challenges every boundary of your being and makes you question all the way to your core. She's someone who shows you what you're truly made of, or not. She holds a mirror straight 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 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 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, but didn't. Things I never thought I could, but did! She's made me do things I never thought I was strong enough to do. She's shown me 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 believe were possible. She's the...
I have veered slightly off track, but what I want to say is, as long as I can remember, I've always wanted to give of myself physically, but for one reason or another 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.