Sunday, March 23, 2014

Finally

When and how? How and when? Someone knew. And when that certain someone knows, things happen. I've said this many times before, and will say it again - she never said a word vocally after June 17th 2009, but the girl spoke. She made things happen. She used mostly her eyes to let us know what she was thinking and feeling. As time went on though, and the urgency of the situation was waxing, she resorted to other measures - more desperate ones. Some I had only seen a few other times.

In the beginning, we had been sheltering Aviana from very end of life conversations, especially as they pertained to feeding. But over time we realized, she needed to know (as if she didn't already). We became really open and honest about everything with her. We no longer hid any conversations. From then, I noticed a shift. She really began making her wishes known. If things weren't going her way, she became despondent. Once she got what she wanted, she was back to her normal self. It was unbelievable to watch her in action, but very sad at times because she was trying to set the wheels faster in motion to end her life. 

It was a Monday; she had completely refused her breakfast, which at that point, wasn't out of the ordinary. I sat down with Aviana for lunch. She stared straight into my eyes and completely refused her meal. Her jaw, locked. I started to cry. In my head I knew what she was doing, what this meant. But in my heart, I was still only halfway there. I suppose I wasn't yet fully ready to realize, or see it. Feedings were a double-edged sword. I felt both happy and sad, both proud and confused. She had never refused two meals in one day. 

Her focus was directly on me, her eyes penetrating. My 7-year-old girl was clearly pushing me. Pushing her 38-year-old mom to do something she didn't want to. She was taking me there. She was so small, yet always acting so big. Time and time again, I found everything I needed in her. She's what drove me, what always gave me that extra shove in life. Every time I thought I couldn't anymore, she proved I could and would. She's what kept me going. Because she always could, so could I. She was once again telling me, in her own way, that I could and would. And the time was now. I continuously fed off her - no pun intended. 

I sat for a long time, talking with her. Asking her? I gently tried a couple more times with the food, just to be sure. Don't laugh. It's only natural. She defiantly turned her head. I cried as I told her, "I know baby. I know. I will. I am." I put her down and called Dave. I asked him to come home right after work. I told him all of what happened with Aviana, and how it was time to go tell my mom and Gary. I then called my mom and although I don't remember exactly what I said about coming over, I'm sure I kept it casual so as not to worry them.

I was really nervous on the way. I remember like kids reviewing for a test, I was frantically flipping through our Hospice notes, and going over all the main things we were going to say. When we got there, I told them we needed to talk. We all sat down in the family room. I believe we started with Aviana's quality of life. We agreed about how it had been deteriorating over time. We talked about her time in therapy, her time the previous year in the hospital, her liver, and her upcoming surgeries. We spoke of how much we love her and love to hold her, but how the most important thing is how there's barely any enjoyment in this life for her. We agreed how agonizing it is for all of us to watch her life, which is devoid of light. 

I then reminded my mom of our Palliative meeting and all that meant. Gary doesn't read any of my blog, so I asked how much he knew, which wasn't much. We went over Palliative, but this time we included what they said to us about the feeding option. I started to cry. Gary was stoic. My mom was in shock. I told them how we were just as surprised when they first told us and how I had spent all this time researching and making sure it was something we would pursue before bringing it to them. I explained all the reasons why it made perfect sense for Aviana in particular. Furthermore, and most importantly, I explained why we felt it was the most proactive, pain-free approach in letting her go. 

We also told them how we didn't want to wreck their trip, but the urgency had gotten out of control. They said they were canceling their trip. All was lost when I told them how Aviana was straight up refusing her meals. Two that day, which prompted us to come talk to them. My mom asked for some food in order to feed her immediately. I had to fully explain how we can no longer force her and why it is so important to honor her wishes. We armed ourselves with all we had learned on our own and through the help of our amazing Hospice staff. Oh yes, I forgot one small detail. By this time, we carefully let them know Aviana had transitioned to Hospice. My mom is always so worried about our protection as a family, so as hard as it was to hear, she understood. But the words were awful. They just are, no matter how you slice them - when heard, usually people think Hospice = Death. And boy did they. Gary was really upset, and asking when she was going to die? We had a whole conversation surrounding this.

By this time, my mom had grabbed Aviana on her lap and was holding, rocking her and crying. Gary was again unmoved. He spoke softly, but direct, "So you're going to kill her." I knew he didn't mean it. He was just so sad about the whole situation and knew he was finally going to truly lose his granddaughter. Sure enough, and soon enough, he completely understood and was right there, united as we had always been as a family. He was completely in line on the subject of quality of life as it pertained to our girl.

I could tell both Gary and my mom had thought these thoughts before, and understood fully. They asked a lot of questions, but I could tell deep down they always knew the day would come for this conversation, and here it was, staring them squarely in the face. They even recounted. They stretched their minds back to the previous week. They remembered how no matter what they said, or did to get Aviana's attention, she ignored them - stared straight through them. Aviana was trying to tell them, to show them. I explained that once they left, like a switch, she flipped and was back to her normal self again. Now they had to come to terms with what to do, and how to handle everything.

My mom couldn't breathe. She looked like she might pass out. Dave scooped Aviana up and out my mom went to the backyard for some fresh air. I soon followed. I sat and talked with her. We actually had a really good talk. She knew it was best for Aviana. We all knew it was best for Aviana. But as she rocked back and forth - in the very same manner I originally found her in the hospital so many years ago just moments after the accident - she said, "letting her go will kill me. If Aviana is gone, there's no reason left for me to live. You will all survive and go on, I will not. She's my whole world." I tried my best to continue talking to her, but how? So I stopped. She was about to lose her baby. Words are words. They fall short sometimes.  

That was enough for one night.

12 comments:

  1. Oh the vision of your mom rocking back and forth killed me. I cried like a baby. I think of her trying to comfort herself like our moms comforted us when we where babies and rocked us. But just as when we where babies sometimes the rocking or the words of our mother didn't work. That must of been one of the most difficult days you had with your mom. I can't even imagine. God it makes me want to come through the screen and hug you and your mom. I hope if you do publish a book someday you will let us all know so we can buy it. Mindy

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    1. You are so right Mindy. This was how I discovered her right after the accident and she continued on that day. She had just seen Gary and Aviana get hit by the car. It was so awful. Awful, awful, awful. She kept repeating, "We took your baby away! we killed your baby. It took so long for you to get Aviana and now we took her away. I am so sorry. I am so sorry!" It was awful!!

      Thank you for all of your love, truly!

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  2. Avianas Nana, I had to look back to see what Avi called you :) I just think of what a one of a kind Nana you were to Avi, and what a blessing she was to you ! Your little sunshine , your love, your precious grand baby, to think that they are only lent to us to love and nurture till our maker calls them . It has got to be so hard for you that Avi left you so soon, a reason we may never understand. I know just from reading here and Jen really sharing ALL of you with me that you have an everlasting love for Aviana ,I believe many of us do . Be proud that you have touched so many, only because of that special little girl , Aviana. I pray that the pain for you will become less and the memories more. I have grown to love your family. You have a very special daughter ,that has helped me learn so much about true love and I'm sure you were the one to teach her that, and for that I'll always be grateful. Thank you for sharing her with us. If only the world was full of Nanas like you :)
    XOXO
    cindy in nc

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    1. Cindy...this comment meant so much to me, but moreover to my mom. Thank you so much for all the time and attention you put into your words. You really are someone so very special.

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  3. Oh Jen..I don't comment very often...but have been following since the accident....this was a hard one to read...can't imagine writing it, or living it.....hugs to all of you as your sweet Avi watches over all of you. Hugs.

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    1. Thank you so much. Thankfully, I do feel Aviana watching over us. I am so grateful for that. Aviana, Kama, God, or whomever is up above. I feel they are all there and it is so comforting to me. I didn't know this about life before they died. I was raised praying to God every night, but I didn't have such a deep understanding until I knew death.

      Thank you so much for your comment.

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  4. Wow, just wow. You had to be so strong, for you, for Avi, for your mom, Gary, everyone. Once you got through this night, it seems like maybe the load was a little lighter to bear. I can't even begin to imagine....
    Hugs to you.

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    1. Hi Emily...it was a wild ride, or sure. It was one of the most calm times in some respects and not in others ; ) Thank you so much for being here : )

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  5. You did it properly. Every single step. Never question that.
    I respect you endlessly.

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  6. Oh Jen. So much for your family to have to process & handle. Your forthought and gentleness with one another are beautiful examples of love.

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    1. You always find the perfect words Channe. You are amazing...you know that? You are.

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