Whenever I write, I am ready for every walk of comment. I understand we all arrive where we do at any given moment from our accumulated life experiences, which I imagine can be vastly different from each other - even if our situations appear to be the same. We all come from the ground up and from a multitude of backgrounds and beliefs. I feel an open dialog is important. It's not my interest for everyone to agree with the choices we've made for our family. That's impossible. I wouldn't ever expect it, as no one has ever been in exactly our position. The same goes for us. I would never assume I know about anyone else's situation, even if theirs looks undeniably similar to ours. I would just hope that if I explain well, people could try to understand where we are coming from.
I have to say, your love and support was such a blessing to us. I have gone back and read and re-read so many of your comments. When I have the time, I plan to comment back on some of them. Thank you so much for taking the time to find the perfect words. All of them were so well written because they were from the heart, and that's all that matters.
I try hard to explain our thought process to the best of my ability, but sometimes I fall short. An example of this was brought to my attention through a comment I received. I thought I was going to be able to refer this person back to a blog post, but after searching for some time and really only coming up with this all encompassing post including many important links - I realized there wasn't one to be found. Somewhere between Dave and I coming to an agreement about posting, this most important information was lost. I honestly couldn't believe it. The information from our very first Palliative meeting was missing, which just so happens to be the very same information which I lead with in explaining all things feeding to each and every family member and and friend!
I appreciated this person for bringing it to my attention, but beyond that, I also appreciated their comment because they were respectful and wanted a better understanding. I think that's what it's all about.
This was the comment I received. My response follows -
I have to say, your love and support was such a blessing to us. I have gone back and read and re-read so many of your comments. When I have the time, I plan to comment back on some of them. Thank you so much for taking the time to find the perfect words. All of them were so well written because they were from the heart, and that's all that matters.
I try hard to explain our thought process to the best of my ability, but sometimes I fall short. An example of this was brought to my attention through a comment I received. I thought I was going to be able to refer this person back to a blog post, but after searching for some time and really only coming up with this all encompassing post including many important links - I realized there wasn't one to be found. Somewhere between Dave and I coming to an agreement about posting, this most important information was lost. I honestly couldn't believe it. The information from our very first Palliative meeting was missing, which just so happens to be the very same information which I lead with in explaining all things feeding to each and every family member and and friend!
I appreciated this person for bringing it to my attention, but beyond that, I also appreciated their comment because they were respectful and wanted a better understanding. I think that's what it's all about.
This was the comment I received. My response follows -
AnonymousOctober 23, 2013 at 7:00 PM
Hi,
I'm just now catching up on your blog and love reading about your family. From what I'm reading it sounds as if Avi is starving herself. I appreciate all you have been through and the love that you have shown, and I hope this isn't the case. I can't believe that a child like Avi understands not eating....and that any doctor would support not feeding a child intentionally to allow them to die. Just trying to understand based on what I have read. I'm not passing judgement just trying to understand. I can't imagine that this is god's wish for anyone especially a child. Good luck to you all and my thoughts are with Avi hoping that the right decisions are made by all.
I'm just now catching up on your blog and love reading about your family. From what I'm reading it sounds as if Avi is starving herself. I appreciate all you have been through and the love that you have shown, and I hope this isn't the case. I can't believe that a child like Avi understands not eating....and that any doctor would support not feeding a child intentionally to allow them to die. Just trying to understand based on what I have read. I'm not passing judgement just trying to understand. I can't imagine that this is god's wish for anyone especially a child. Good luck to you all and my thoughts are with Avi hoping that the right decisions are made by all.
Hi ~
I want to thank you so much for how respectful you were in your comment. I truly appreciate you for trying to gain an understanding without passing judgment. You seem like a really good person. I completely understand where you are coming from. Our first reaction in regard to the feeding issue was similar to what you are expressing. After first meeting with Palliative, I don't think I slept for 3 months straight, as it was so unexpected. I had a record number of headaches at that time too. I was up researching and plain wondering and thinking what was best for Aviana.
It's funny how I think I've explained things on my blog and then receive a comment such as yours and realize how I really haven't. I'm so glad you brought this up. We have talked to all of our family and friends about the details, and like I said...I actually had to go back as I thought I definitely had on here too. But I now know, I have another (very important) blog post to write.
Everything now is so raw and pressing with what is currently happening. I have so many swirling in my head, but will definitely have that one in the mix...in time.
Thank you so much for being so thoughtful and kind. I really appreciate it.
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AnonymousOctober 25, 2013 at 7:15 PM
Are you letting her starve herself?
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We also explained how she had a big surgery coming up on her head and how we did not want to put her through it. I also spoke of blood draws, and all other things that cause her discomfort. I expressed how I want only calm for her. Then, I spoke of our main problem. Dave and I never wanted to get her a feeding tube again as it felt as though we were moving back towards a form of life support. We only got one in the first place because it allowed her a chance at a recovery, but we had spoken the weeks before the meeting and decided on it again as we didn't know what to do and felt it was the only option! Eating had been causing her too much suffering over the years, as we, and everyone else who fed her had been forcing her!!!
I told the doctor of how we fed her and that no one could, not us, not her school, not anyone. I explained how she would maybe start off okay, but then would quickly start clenching her mouth, and would not open for her food. I further explained how she would either hold the food in her mouth or blows it all over the place - the couch, us, the floor, our dog, everywhere. I explained how this had been going on for years and how we had been working with our GI doctor trying to figure out a solution, as we both knew it didn't have to do with her brain injury and had everything to do with Aviana, and her behavior. I explained how we were at the end of our rope and we were about to set the appointment for a feeding tube, as we absolutely did not want her to suffer anymore. We only wanted comfort.
This is when he stopped me. He understood everything I had said. He reiterated all of our requests for Aviana's comfort and then posed a question. He asked something along the lines of, "I heard you say you don't want her to suffer. And that you don't want to put her through anymore surgeries, but you want to put the feeding tube back in?" My head felt like it was on a tilt-a-whirl. I looked directly at Dave, because I didn't think I had clearly explained. I thought for sure there was a breakdown in communication. I repeated myself, "no, we don't want her to suffer - that is why we want the feeding tube. She is choking and gagging on her food. She is coughing it all up. We don't want that."
Both he and the social worker nodded in agreement. Then he too tried again, "we are here to give you all of your options. You said you didn't want to put her through another surgery, so you can either put the feeding tube in, or not?" At that point, I felt I was either in the Twilight Zone or speaking straight Chinese. I looked at Dave, and then suddenly it hit me. I knew exactly what he was saying. I was the clueless one. I was the odd man out amongst all the others in the group. He was saying to stop feeding her when she wanted! Wha?!?!?! I'm a mom!!! I can't do thattttt! Apparently, I was the only one who didn't get it that day, and every time I've re-told the story! Slow as a snail sometimes...
I must have gone white like Casper. I felt sick to my stomach as her sweet little Miki face crossed my mind. I wanted to run, escape, throw up, be a kid again, anything but be where I was talking about what I was so not prepared to talk about. All I could think was - this wasn't on my list of things! I wasn't ready for this!! I looked at him. And after I picked my jaw up off the ground, I said, "is that legal?" And right as the words rolled off, my next thought was - yes, Terri Schiavo. Yes, it's legal. I looked at Dave, he was in as much shock as I was. We looked at him and both said, "we could never do that."
We moved on. We began talking about things on my list. Vaccines. I wanted to talk to him about vaccines, which should I have her get? Which, if any, would be a good peaceful way for her to go? Our sick, sad, but necessary conversation rolled on, but there was one single reel playing in my head and it was the feeding one.
Cue the tears, I can't write this without them. I'm her momma, and as much as I didn't want to, I had to remind myself why we were within those four walls. We were there to discuss the best way to keep our girl comfortable and ultimately the most peaceful way to let her go. Just because the content of vaccines, bronchitis, pneumonia, a collapsing skull, and a failing liver made me more comfortable…that wasn't the point. The question was, what made most sense for Aviana? We knew since the accident Aviana hasn't cared one single bit about food. She could take it or leave it. I knew if I left that meeting without asking, I would have to give myself one swift kick in the ass!
So I had to interrupt. I took a deep breath, found every ounce of power I could, and actually forced the words from my mouth, "the feeding, can you tell me about it…is it peaceful?" He explained, "it is very peaceful. Especially since it sounds like she isn't interested in food." He walked us through the process, of how we would feed her what she wanted and then stop when she refused. We would continue to do this until. He said she would get weak and then just go to sleep. We asked about medication. He said Hospice would be involved and would provide what was needed.
The weight of the world was upon our shoulders. I believe we both knew in our hearts that letting Aviana choose her path in regard to feeding was the exact right answer, but it would all come down to if we could actually reconcile it all within ourselves.
I didn't sleep for about 3 months; my headaches were at a record high. You could find me up all night researching and often during the day too. Here are just a few examples of articles such as this, this, this, this, or this. I had an outrageous amount of them in my favorites, including Power Point presentations, blogs of people who had stopped and their experiences, article upon article beyond the ones I linked, everything. I became obsessive. For months, I watched Aviana's every move - making sure what we had thought and were seeing was true and real.
Most days Dave and I were silently wading through the enormity of what was at the forefront of each of our minds. It was too much to bear if we gave it a voice just yet. Every once in a while we allowed it some air just to see where we each fell, and then silenced ourselves once again. I was moving faster than he was purely because of my position with Aviana. I was up close with her all day and night long, so I saw more of her reality than anyone.
In the meantime, Dave had discovered the sippy cup idea, which worked for a while…but really did nothing for her quality of life. As with all things, she tired of it and was back to refusing her food on a regular basis. By that time though, together we had already made our decision. We had decided that every possible reason for keeping Aviana here was selfish.
Our choice felt most right for Aviana. It's an awful thing to be a parent in a scenario like ours. Sometimes it felt like playing a warped version of The Price is Right. We had to determine if we wanted Door #1 Bronchitis, Door #2 Pneumonia, Door # 3 Failed Liver, Door # 4 Food Refusal. We chose the latter, and for many good reasons. Aviana was non-verbal, but was definitely choosing her path loudly in this area. If we waited for the others, they may come on fast and furious. She could end up in a lot of pain and also in the emergency room and with extended hospital stays. This would surely involve needles, tubes, etc…and be in the place we didn't want for her ever again. We felt by listening to her, we could also control any pain before it happened and keep her comfortable at home, surrounded in all she loved, and who loved her. What more can anyone ask for?
So, we tried a few times to stop feeding at her request. To really feel what it would feel like. It was hard, but it also felt good to listen to her, to respect her.
I, especially, had felt so much guilt for too long for force-feeding her. For always keeping her perfect weight. For making her eat. Dave used to think the dishwasher bent her spoons in the drawer, but it happened because of me. I fed her the most, and sadly I was guilty of that sometimes being the result of her not opening her mouth. I feel sick thinking of all of us feeding her.
I don't think people should be forced to eat, and the more people I've talked to about this, the more I understand to have gone through this natural progression. In fact, the person I was most terrified to tell was my mom. Her whole world revolves around feeding people, as it is the way she shows her love the most. I thought it would surely break her and she would never understand, as Aviana is her entire world. I was so scared, I kept it from her the longest. But my mom has a way of surprising me when I least expect it, and she sure did with this. She understood this concept and even said my grandma (who I was unbelievably close to) did this towards the end too. I had no idea.
So yes, it felt good to stop when Aviana said stop. From the day of Aviana's accident, she always let her wants and needs be known, that never changed. Just because she was severely brain injured doesn't mean she couldn't throw a stink eye like the best of them. No longer was there a power struggle, she became much more at ease. Her whole demeanor changed. Just because she was a child, doesn't mean she shouldn't have a say. It doesn't mean she shouldn't be given some control over her life, and the power to say when enough is enough. I would put myself in her body all the time, and I wouldn't blame her for a second.
We would put her to bed and she wouldn't be able to move from that position. I would try to imagine that for myself some nights. I never lasted long and would end up in tears. I would go in her room in the morning and she would be covered in mosquito or spider bites because she couldn't fend for herself. Even though we have Clark Pest Control and put a Bug Band and dryer sheets in her bed. Sometimes, her hair would be across her face, as she was unable to swipe it away. Just a million tiny deaths for all of us. I don't blame her for one second for refusing her food, and I don't blame us for one either in choosing our path. I actually have called Dave at work a few times crying. I will have been looking at pictures and through tears, I can barely speak, but the words that finally come out are how proud I am of us for being brave enough to do what we did for our love. As much as I miss her at times, and boy do I, I'm more happy for her.
As her parents, we knew exactly what she wanted…and she wanted out. We believe you should let someone go when they want, and in their own time. We believe in our case we needed to let nature take its course and not sustain life at all costs and through artificial means. I speak for our family, and have no judgment about what other families believe, as I know it's such a personal, intricate choice that hinges on much. We are fully at peace with God, and his will for us, and especially Aviana. We are thankful to Palliative and Hospice because everything was just as they said. Aviana's journey came to the most peaceful end I have ever witnessed. Well, just as peaceful as when we let Kama go. What more could we ask for? We have been blessed. Our family has been blessed.
So we personally don't look at it as starving her, or her starving herself. I can see how it might seem that way to the outside world though, and I understand. My hope is that I have shed some light on the subject. In the end, we respected Aviana's wishes. We gave her back control of her life. We honored her. We loved her the best we could, and will love her for the rest of our lives.