Monday, May 20, 2013


It seems the longer we've had Aviana like this, the more blurred the line has become. In a sense. At first it was cut and dry. If she won't be the little girl she was, if she won't enjoy the life she once knew, absolutely not! But UCD said we should give her a chance, so we did.

We gave our right, left and every limb, ligament and tissue we had toward her recovery. In the end, we had to step back and be honest with ourselves, and most of all - Aviana. We had to face the reality, even if it was the most painful of all. That truth holds a mirror to your face and what reflects back on you once again is quality.

I have to say, with time and routine, it's funny what we've gotten used to as a family. What's even trickier is what the mind will do when death, or the prospect of, is staring you in the face. We have sometimes doubted or had to re-evaluate our very own absolutes. Where's the dictionary? Because it seems I have sometimes forgotten and have once again needed to look up the word 'quality.' I have, at times, lost my compass in those chocolate brown eyes. I've had to ask Dave, my Uncle Roger, my Dad, and my Aunt Paula, "what is quality?" Maybe she is completely happy. Maybe she is fully content. Maybe she's where it's at, and we are all messed up. Is it selfish of me to let her go? Or are we keeping her here selfishly...for our purposes alone? At times, it can be very confusing and something you would rather rip your toenails out one by one with a pair of pliers than think about. Truly.

Like I said, so cut and dry in the beginning and now so muddled. There was a direct comparison in the beginning. There was a healthy, vivacious, full spirited, burst of AVIANA bouncing around and then, BAM - no more! Now, 4 years later - we are used to this, and we love her so very much.

I have talked about acceptance a lot lately, or maybe I haven't. It's on my mind...a lot, that's all I know. We truly are at a much more peaceful place, but you know what single thought almost gutted me from the inside out last week? I was minding my own business in the kitchen, cutting some artichokes and wouldn't you know it, my heart...sidelined.

Acceptance is all great, but I do believe it's mostly for us. As far as Aviana is concerned - acceptance in a way is nice for her too, but the realization I had is this - the little girl I knew before the accident would NEVER WANT US TO ACCEPT HER AS SHE IS NOW!!!!! That realization stung in a big way. It burned because acceptance felt so good, so soothing...for us! And, while this seemed like such a revelation, I quickly realized, it really wasn't at all. I honestly felt it all along. Things can all be so confusing at times. Because she can't speak for herself, it's sometimes hard to separate our needs from hers. At times it can be a guessing game!

So because I'm her mom and know her best of anyone, I must go with my gut. Thankfully, my gut is usually always right. For those of you who knew Aviana before, this will be nothing new to you. She was the most independent child you had ever met in your entire life! Hmmm...I wonder why it was hard for me to bond with her. She wouldn't let me do anything for her ; ) She was fiercely independent from the second we met her in Guatemala. She hit the ground running. She knew what she wanted and by God she was going to get it. She had to figure everything out herself, and didn't want any help...ever. If you've been here for any length of time, you knew her motto was Avi Do It! That post was my first one really about her and was from 2 days after the accident. I must never lose site of who she was.

The list goes on. She was fearless. She loved a challenge and faced every one, head on. When she was in diapers, she could change her own, and would insist on it! She sometimes became a sideshow act. We would laugh because she could do it all, she would run and grab her two pairs of pajamas (she didn't sleep with blankets or a pillow yet - we thought she would suffocate, imagine that), her overnight diaper (she knew the difference), and a wipe. We would all just sit and watch her. She would take all of her clothes and current diaper off and put all of the other gathered items on perfectly. She took pride in everything she did. She picked out her clothes for the next day. She did not like me helping her, or hovering around. She liked to shut the door and surprise me with the fact that she did it all by herself. She liked to put her own shoes on from a very young age. She potty trained almost immediately. She was so proud of how she could take herself to the bathroom, wash her hands, everything. She loved to figure all of her puzzles out, without help of course! If I tried to help her, I would get 'the look' and an Avi Do It would surely follow. Throughout the day, everything had to be done by her...all the way until she put herself into her very own bed.

She was from Guatemala, and heard Spanish for the first 11 months of her life. I thought her speech was delayed so I put her into therapy. Kathy came out every Monday and Aviana would grab her by the hand, pull her into her room and shut the door because she wanted to read books. Kathy called her, "Own Agenda Girl." Aviana caught up quick and was released just 2 days before her accident. She was the quickest learner and was on her own incredible path.

Maybe it's a coping mechanism to try and forget these things because there isn't much we can do to give her any of her independence back. I wanted her to ride the bus in order to give her something. It kills me something deep for this girl especially to be so reliant on us. I think we have all died inside everyday to know how independent she once was and to see how much she depends on us all now. We all have our own ways of dealing with it - avoidance, acceptance, whatever we do to get through. We of course do everything with love for her, but that doesn't mean it doesn't hurt.

If I let myself, and I need to for some decision making purposes -

Wearing and having a diaper changed at the age of almost 7 - would devastate this child.

Having her clothes picked out, each and everyday - would devastate this child.

Having her meals picked out, breakfast - lunch - and dinner - would devastate this child.

Carrying this child to and from, all day long - would devastate this child.

Sitting and laying in the position I place her, unable to move - would devastate this child.

Falling over and being unable to right herself - would devastate this child.

Being unable to accomplish one single thing by herself, for herself - would devastate this child!

Never mind - these things would devastate me too, and I suppose that is why my wishes are known.

So no. Deep down, at the heart of the matter - we know. We are sharp as a tack, and straight on when it really comes down to it.


  1. Your family is doing everything right. JUST KEEP LOVING HER LIKE YOU DO! I know she feels it.

    1. Thank you, thank you, thank you so much!

  2. As always, I am in awe of you two and your ability to cut through to the most important parts and find what matters.


    1. Oh Dixie, you are so sweet to us...always! Thank you : )

  3. More prayers from our home. We're in hospice with my much too young mother and yes, I've the same conversations. They are amazing people, they allow you to hand off a lot of the stress. Please, let them take care of all of you.


    1. Hi Terri ~

      I am so sorry to hear about your mother. These conversations are so difficult aren't they? Don't you often times just want to run because you can't believe you are having to have them? That you are grown up enough to have them? I talked to Palliative again for over an hour yesterday and I do believe these people are heaven on earth. Just as you wrote above of Hospice. I feel so unbelievably supported and surrounded in love and above all understanding.

      I know I don't know you, but you are so heavy on my mind. Love to you Terri.

  4. Jen... I rarely have access to comment but today, I do. Can I just say... you are the most wonderful mom! You always put Aviana first and make decisions in her best interest... ALWAYS! Keeping you and your sweet girl in my prayers, as I have since day 1!! Sending you hugs and love!

    1. Thank you so much Sarah. I really appreciate your support! It has been such a long and winding road, and to stay on course can be interesting at times - so thank you so very much : ) : )

  5. I love this post so much. I've read every blog entry you've written, but for some reason this one really made me feel like I got a real glimpse of Avi "before". You're so brave. Not only to admit to yourself what is truly right and just for her, but for sharing it with us. As always, I am in envy and ultimate awe. xoxoxoxox
    Fi's mama

    1. Thank you Sophie. As hard as it has been, I've forced myself to watch old video of her, and look at old pictures. I've had to really unlock the vault and dive on in to really remember who she was and what she would want. As painful as it is, I have to do it to make sure we are always doing what she would want.

      I love you.