Friday, November 29, 2013

The Reason Why

Initially, I decided to share Aviana's story for a few reasons. Over the years, that reason has transcended my original purpose. At times, I've been gently nudged to downright advised by family or friends that it might not be a good idea to write about certain subjects. My thought process is always the same; these are important parts of our journey - they have to be included. Every detail of everything we did for Aviana was always well thought out. I figured if I explained to the best of my ability, then there was never a reason for these topics to be hidden.

If they happen to fall on the side where people may not agree, or might question - that was okay too. It's okay for people to disagree, or question. For me, that wasn't a good enough reason to withhold. While I understand and appreciate my loved one's desire to protect us - my need to include these subjects always prevailed. Each was a real, raw, story of what we were going through.

I understood that others may not live their lives in the same manner, but to me, that was part of it. That's a good thing. It's the very reason why I like looking into other people's lives and try and gain an understanding from them. Maybe the information makes me cringe, maybe it's just what I've been searching for, or better yet, may favorite of the bunch - maybe I thought, 'I couldn't imagine'…and then, somewhere down the road I've quite suddenly found myself in an oddly similar situation and had to riffle back and remember where I saw whatever it was that struck me sideways.

Information is so important to me. I have always felt sharing what we've learned is necessary, even if it dances on the dark side. It helps to create a healthy conversation. Speaking of a conversation, I have answers to a few questions I was more than happy to have received. I have a post all ready to publish later today.

The way I see it, life can be tough. At some point most everyone will be faced with difficult choices, ones we struggle to make. In my opinion, the more we sweep these subjects under the rug, or keep them all to ourselves, the smaller our world becomes. And the smaller our world becomes, the more alone we feel within it. I personally gravitate toward stories where I can find an open, honest, thread within them. I seek the ones which share multiple sides, and steer clear of the one dimensional variety.

I have always done my best to give the good, the not so good, and everything in between. In the end, I feel every moment makes one full incredibly beautiful story!

When I discovered Palliative Care, everything changed. It became crucially important for me to include this information on here. These words were different than any I'd ever held before. From the moment I knew these two single words and their meaning, our world evolved. They each took on an electric charge of their own. They spun wildly within, creating an undeniable magnetic field. Their force - pulling strongly. From these very pages.

These things take time though, and honestly, it took everything in me to hold them back. Initially I had to though. Everything is a process. I went into our first Palliative meeting thinking I knew all we were there for. I fully expected to walk out educated on all subjects we entered with, no more, no less. Oh no. Not at all. We were blindsided. We walked out in a haze. A complete daze. One which caused this tizzy of a post. I wanted to spill, but couldn't, as that would have been irresponsible of me. There was so much to think about, process, research. I didn't know which way was up, down, anything. I needed time. We needed time.

The only person's approval I seek for weighty posts is Dave. If he says no, it's no, and I fully respect his opinion. After talking it out, he said yes to the Palliative post at that point - and for the first time - no to the other. The other being feeding issues. He wasn't comfortable just yet, and I fully understood why. This information was so new, so unknown. We needed to simmer.

Writing about Palliative Care was one thing, but including all things feeding, or lack thereof, was of utmost importance to me! The reason is simple - if in our lifetime my words reach just one person who is in a situation similar to ours, and didn't know, but now does, my work in this area will be worth everything. We didn't know, and our hands were tied. We were helpless. We couldn't do anything for our daughter, except hold and love her, even though everything was plain to see. And see by all…my Mom, Gary, my Uncle Roger, Dave, everyone. Especially me, as I was Aviana's primary caregiver.

We saw a child who knew she wasn't going to get any better, who knew she could once do everything and now her quality of life was almost nothing. We saw a little girl who was doing her best to tell us, but as much as she did, there was nothing we as a family - the ones who loved her dearly - could do. And for that, it just created more sadness. We saw a little girl who as hard as we tried to include her in everything…still remained alone, and lonely. We saw a girl who had many medical problems and upcoming procedures we were not looking forward to putting her through. And all for what?

Our wishes were known for our daughter. We all knew who she was before the accident, and what she wanted for herself. So we were left to pass time, all the while making the best of our situation. We had no other choice…or so we thought.

Now, when I think about Palliative Care and Hospice, often times my eyes fill with tears. I am so grateful to them as I scroll back through and look at the past 4 years of the great majority of pictures of Aviana's face (especially since Kama died). I bawled when I looked at some pictures her school recently sent. The tears sometimes come when out of habit I look to the couch and she's not here. They are maybe not what you think though. We miss her dearly, but more than that…we are grateful they helped us to finally set her free, as free is all she wanted to be.

Multiple times a day I am grateful to them for being there, for doing what they do. I am thankful to them for being the brave and courageous in a sea of scared, and fearful. I see them as the ones who will talk about what no one wants to, especially when it comes to a child. The ones who respected us, and especially Aviana's wishes. They heard and understood our every concern, but especially our every hurt. They shared in our deepest desire to keep Aviana comfortable. They not only joined in, but also showed us exactly how to attain our every goal to ease any upcoming pain…and all at our own pace. All with a gentle smile and a loving heart. They untied our hands. But above all, they gave us permission to listen to our daughter's voice. I will forever be grateful.

I don't dwell in the had I known, because I do believe every moment with Aviana is as it was supposed to be. I do however want anyone and everyone in a similar situation to know these words, just in case. I want them to know so if they happen to have a child, or anyone of any age, who was like Aviana - there is someone who can help. And I don't mean the people along the way who by nature and position encourage you to continue on.

Everything in us knew otherwise for Aviana. We were her parents. We knew the exact needs of our child. What we didn't know was where to go, or who to talk to.


  1. Absolutely beautifully and perfectly put.

  2. Only you can know what is right for your child. Hospice was a Godsend for me and my family, and I am thankful for every day they helped us allow Don to gently leave this world and move onto the next part of his being. I know how you feel about Hospice. You were wonderful parents, Aviana was so lucky to know you, and you were blessed to have her in your life.