Each day I was away felt like its own unique eternity. So much has happened over the course of such a short period of time. Other things too, but the foundation is always and forever Aviana. It all comes back to Aviana. It all comes back to the greatest, longest, ever flowing story I will have ever lived. Everything a true story is full of: triumph, tragedy, beauty, bliss, sadness, and demise. The pages are ever turning, but as they turn...they fall away. Where and when it will end - who really knows? All I know for sure is - this story will be the most beautiful I will have ever told in my entire lifetime.
I guess I should back a little bit. As you may remember, for us as a family, the quality of Aviana's life is most important. As her primary caregiver, I happen to spend the most time with her. Throughout her days since the accident, I've really had to be honest with myself. I've always looked to see how many times her eyes light up. Truly light up. In normal everyday life, I'm great at rolling with the punches. Here, and in regard to Aviana specifically, you might've often read and wondered why these entries tend to dance on the dark side. I'll tell you the truth, that is, if you haven't already noticed for yourself. The reason is because our girl's eyes, face, and body rarely ever truly light up. In any way. It's a fact that cannot be denied. Aviana dances on the dark side, on the sad side. That's not to say she's not cuddly and cute, sweet and loving, and just a downright doll! I'm sure we can all see that for ourselves. But there's a definite difference when you are up close and personally living this life with her. It's just that as a family, to the ones who knew and know her deepest, we just happen to know what's best for her.
Even though Aviana hasn't been able to use her body, we have felt beyond blessed that she has always seemed content. We are grateful she never experienced pain. The only time she ever did was during the failed liver biopsy. Those moments are forever etched in my mind. I never wanted her to experience pain like she did during that week in hospital again. Honestly, it was in those moments that everything came full circle for me. Seeing her in the hospital, in pain, lit a fire within.
It was also at that time, we found out about a much more involved head surgery we would have to look forward to in the future. After recovering from all that, her and I both ; ) The research began.
It was time to find someone, somewhere, who was more in line with our goals and our way of thinking. We wanted comfort for Aviana, above all else. We didn't want her to have this big upcoming surgery on her head. Yes, yet another surgery to add to the long list on such a young girl's life. We didn't want for her to live this life she clearly doesn't enjoy. We didn't want for her to have a potentially bad liver attack at any given moment. We didn't want to force her to eat when she clearly isn't ever hungry. We didn't want the numerous pieces of hardware to continue pushing their way through her head. We didn't want her skull to continue sinking in on her. We didn't want her body to continue to twist up and contort on her. We didn't want to push her through therapies which she wants nothing to do with. We don't want a life for her that she doesn't want for herself. We have gone down this road for over four years and it is plain to see...we must listen to our child. One thing has always been clear, without one single word...she speaks volumes. Everyday. We must honor her and LISTEN. She deserves to be listened to. She needs to be listened to. She wants to be listened to. She will be listened to.
Palliative allows us to listen to Aviana. And as sad as it sometimes can be, it is the most beautiful experience of our lifetime. The beauty lies in giving our girl what we have always wanted since the accident happened - and that's the control and independence she once had. After all this time of her following our lead, we have now been able to follow hers. She calls the shots. She tells us what she wants and doesn't want, and we listen. If her boots are bothering her, no more boots. This stage of her life is all about comfort. We are here to keep her as comfortable as possible.
But guess what? She has recently developed a new/not so new level of comfort. I'm sure if you've been here for any length of time, you are familiar with our feeding challenges. She started off strong with the food by mouth and so we started chopping it up for her. As with all things Aviana, as the novelty wears of, so does her interest. Dave's brilliant idea worked for a little while, and now the newness has worn its welcome. Aviana has slowly began showing everyone, enough is enough. She slowly started refusing meals here and there. Lately, she has begun picking up momentum. We will of course, continue to offer all of her meals, but won't force her to eat them. We are working closely with all of her doctors. As you can imagine, this has been a very difficult, yet at the same time, peaceful process. It is so strange to switch gears when all you have known as parents is a one-way street. It's an unknown path to have a child wish for something else, but we are willing to learn, and are. Above all, we have to respect her wishes. To be honest, it feels so good to respect her wishes. It makes you cry...like a lot.
I have to say, Kama honestly paved the way from me. She showed me how. She prepared me for what was to come. It was the most hurt my heart has ever felt, but the most peace I ever felt too. To love someone so much that you would sacrifice yourself for them. Every time Aviana refuses to eat, and we honor her by not making her...a peace comes over us. Aviana is choosing her path. There's an indescribable beauty in letting someone you love go their own way. Even when it breaks your heart, it has a way of healing at the very same time.