Tuesday, October 15, 2013

Heart to Heart

I have always spent time talking to Aviana - talking her through everything she's about to experience - even though we think she clearly understands her world quite well. She has seizures all day long, so if we warn her about what's to come, it helps to minimize them. If we let her know we are about to turn the music on, about to cough, if we happen to see someone about to knock at the door - it helps her to avoid those ones.  But those are just a few and that's just one small example. I talk to her about everything: surgeries, life, changes such as school, fun things, hard things, everything. I know it helps her to transition, understand, accept, etc. Overall though, I want her to know we are taking her life, and especially, her feelings into consideration. I want her to understand we never making decisions all around, and about her without thought.

In regard to all things Palliative Care though, there was one main place you could find me when discussing things with friends, family and Dave - in my closet on the other side of the house. If not there, Aviana was at school, or asleep. I was trying to keep her, or me, away. Whichever, and as much as possible. You know kids though, and they are the eyes and ears of this institution ; ) 

There came a time though when I knew I needed to talk to her. She had already slowly begun refusing her food. She was already showing people in her life it was time. She had showed her school she wasn't loving her food. My mom and Gary came to visit and no matter how crazy Gary acted, or how loving my mom was...Aviana was staring straight through them. She was taking a stand. She was clearly making it known to those around her. I was both sad, and happy, at the very same time. Both proud of her, and wanted to crumble.

One night, I was holding her while Dave was out doing yard work. Quite suddenly and out of the blue...it just happened. I told her everything. I told her about life as I thought it to be. I told her of all our hopes and dreams for her. I told her although we love her so much, she no longer had to stay for us anymore. That we would take good care of her Nana and Papa. I promised her we would be alright. That her Uncle Roger would be okay too. I let her know the reason why was because we would all be able to think of her as whole and happy. I let her know not a day would ever go by that we wouldn't miss her. I told her she no longer had to stay in this broken body. As I ran my hand over each limb, I told her she would be able to use her arms, her hands, her fingers and legs. I asked if she remembered running over grass? I told her she would be able to once again! She would be whole again - to run, jump and play. She could laugh and smile anytime she wanted. She could talk just as much, if not more, than she used to! Wouldn't you know it, a little smile appeared as I told her about running. Remember, this is the same little girl who just about never smiles. I can believe it too. I continued to talk to her. I reminded her of who would be waiting for her...her best friend in the whole world, Kama. The one and only dog she is loyal to, and loves so unbelievably. Just as much as her Mommy does. I reminded her of all they used to do together before, and after the accident. I both smiled and cried, thinking of the two of them together again. I told her story after story. I was a complete mess, but it felt so good, I think for both of us.

You know, after our talk...Aviana began refusing many more meals. This girl, she has a mind of her own. She always has and proved...she always will.



  1. I love love love you.


  2. I just love you guys...all of you! You make every decision with so much thought and love. I have learned so much from you.

  3. What to say? thinking or you guys, crying reading the post. You guys are so strong and I'm proud of you for all you have done for your daughter, including, now, letting her make her decisions about her life. Love you Avianna!

  4. Jen, I haven't been on the blog in awhile....so I am getting caught up. I cannot help but sit with big tears and read your words. I will never know how you feel or what you have all endured, but you all are the strongest, most amazing family I have come across in my time as a PT. Please know there are so many people with you on their mind and in their hearts, sending you strength, a hug, an encouraging thought. Aviana has touched my life and I thank you for being able to continue to share in her story and life through the blog, xoxo. Erin

  5. Those pictures brought such tears to my eyes. So beautiful.