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.