Friday, November 29, 2013

In Answer

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 -
      
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.
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.

***

This was another I received, which I actually thought was valid as well.

Are you letting her starve herself?

***

As I said in the last post, Dave and I walked into our meeting with one agenda and out dazed and confused. Upon walking in, we met with a doctor and social worker. The doctor explained they had reviewed Aviana's file, but asked if we could tell them about her. I explained all about her background and then emphatically said, "we do not want to see her suffer in any way. She has suffered enough in her short life. I explained all the surgeries she had been through, and exactly what had happened the previous year with her failed liver biopsy. I made it very clear that I never want anything like it to happen to her again. I talked about her liver numbers and how we want the remainder of her life to be comfortable. 

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. 

41 comments:

  1. You are wonderful parents. If I were ever unable to speak for myself I would want someone like you & Dave taking care of me. I would want someone to make sure my wishes were being respected and that I didn't suffer needlessly. Until the day you mentioned it, I had never heard of palliative care. I'm glad you are able to raise awareness of its existence. People need to know about this!

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    1. Thank you Channe. I hear you, until Aviana's accident we didn't put much into it. We know have every wish laid out in writing so there is no question, at all. I too would never, ever want that for myself and neither would Dave...

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  2. You are the strongest most courageous people I know. Beautifully written Jen.

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  3. Aviana continues to "speak" through you to teach us all so much. Her life most definitely had a purpose and she was truly blessed to have the most inspiring and courageous parents to voice her words.

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    1. Thank you so much Nancy. I truly appreciate hearing you say those words : )

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  4. As a parent, I read all this and it hurts my heart for you. Then I put myself in Avi's mind and I revel in the fact that she finally had a choice after 4 years of no choices at all. Not in what she wears or what toy she can hold, but the most important choice she could make, the choice to stop her non-living. Imagine her joy, even though she could not speak out loud! You are brave to posting all this, as surely some will shake their heads, but you have shown the greatest gift of all...the gift of letting go, the gift of being UNselfish. You truly have been so blessed..... Now to heal your hearts with the absence of her physical being....

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    1. Each time I read your comment, it's just as beautiful…my goodness. Thank you. Yes, you sum everything up so perfectly. Our hearts hurt in an indescribable way during the shift for all you know is taking care of and sustaining life. We were feeding her the most unbelievable diet as well. So nutritious and well balanced. To go from one extreme to the next was the most outrageous shift of the mind and took time. We had to really focus fully on what HER needs were and separate them from ours.

      The easiest part was giving her control back over her life. Control she didn't have one bit of in the 4.5 years since her accident. But that control, that one bit of control, that huge chunk of control…we knew meant the ending of her life. The range of emotions surrounding feedings was vast. So happy because she was using her voice! So happy for her! So sad at the same time for us. It was unreal. You summed it all up in one paragraph. And yes, ultimately letting go…of all we had tried, of all we knew, of all, of her. But with all the peace we feel since - we definitely know it was the perfect decision. Thank you so much for your comment. ❤

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  5. Bless you how loving you are and how agonizing it has been.
    Hugs
    Lydia

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  6. You are so brave, Jen, and so gracious. I admire your ability to be so authentic, even here with strangers- to live it is one thing but to be able to explain it through writing is another, and you've mastered it.
    Thank you.
    I can't imagine the feedings. I cannot imagine. I have a hard enough time feeding my healthy two year old. She skips meals and I offer her this and that and she still refuses. When she finally eats something, I feel a weight lift from my shoulders. Watching her eat is one of my favorite things to do and often I get teary when she sits and just stuffs her tiny belly. To not have that with Aviana, ever, to struggle every meal. I'll say it again, I cannot imagine. The bent spoons is bringing tears to my eyes. I'm so sorry you and Aviana had to go through that, and I'm so thankful she is free.

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    1. Hi Chelsy ~

      Thank you so very much. I appreciate your compliment : )

      Oh the years of feedings. They almost put me over the edge. Honestly. The sadness, the frustration, the guilt. You name it - I felt it. Trying and trying to make it better. Talking to her doctors. Trying to give her a better quality of life by eating, but her not wanting to. Trying to avoid her going through another surgery for the g-tube again. Trying to avoid it as well because it felt WRONG for her life, or lack thereof. I wrote this above for another comment as well…

      "Our hearts hurt in an indescribable way during the shift for all you know is taking care of and sustaining life. We were feeding her the most unbelievable diet as well. So nutritious and well balanced. To go from one extreme to the next was the most outrageous shift of the mind and took time. We had to really focus fully on what HER needs were and separate them from ours.

      The easiest part was giving her control back over her life. Control she didn't have one bit of in the 4.5 years since her accident. But that control, that one bit of control, that huge chunk of control…we knew meant the ending of her life. The range of emotions surrounding feedings was vast. So happy because she was using her voice! So happy for her! So sad at the same time for us. It was unreal. But yes, ultimately letting go…of all we had tried, of all we knew, of all, of her. But with all the peace we feel since - we definitely know it was the perfect decision."

      So yes, I too am so happy she is free. Isn't that wild Chelsy …our biggest struggle with Aviana became our saving grace. Isn't that amazing how all the steps were meticulously put in place year after year and pushed to a point for Aviana to make her grand exit? In her own time. It's all fascinating to me.

      Thank you so much for your love. I am working on the Rainey post in answer to your question. Thank you for asking : ) She has taken it hard : (



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  7. I, too, am so proud of you two!!!! I'm so proud of you for so many different things but this one is the biggest. You did what was best for AVIANA and you let her have HER say. She was able to talk and what's more, is that you allowed her to have her way. I can't begin to imagine how hard it was to let go and let her do what she wanted to do. That is impossibly difficult and you and Dave DID IT and not just did it but DID IT PERFECTLY!!!!

    I love you so much, my cookie crumbling friend. I have so much to learn from you. I have learned so much from Aviana. She taught not only you but she taught us too. YOU have taught us. Your whole family has taught us. You and your love and your kindness, it's just a beautiful thing to see.

    From our family to yours. Or your's? ;)

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    1. Yours? Your's? Yourses? Hmmm.

      Thank you my sweet. Thank you so very much.











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  8. You are such a brave parent. You allowed your child to make choices and guide you. It is very possible others reading your blog may have missed previous posts regarding Aviana's failed liver biopsy. Loss of appetite is something that goes along with issues related to a liver that does not function properly. You followed the lead of your child and alleviated the pain and suffering that would increase as more issues related to her liver would progress. You gave everything over to God and realized life extends beyond our bodies here on this earth. You followed her lead and because of that you greatly reduced the amount of suffering she would have physically endured as issues with her liver progressed. She is free of all pain now. You are a mom who undoubtedly worked very closely with experienced health care professionals and social workers. You took into consideration their opinions and you also considered your own feelings. You put Aviana 's feelings and needs above all else. You followed her lead and for that reason she went to Heaven peacefully. Her passing the day that her favorite pet did is no coincidence. A favorite pastor of mine once said "When you follow God everything is the way it is supposed to be." Putting Aviana's needs before your own and surrendering it to God was the most loving selfless thing a parent can do for a child. Her passing the same date Kama did was not a coincidence. You surrendered it to God and everything is the way it is supposed to be.

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    1. I so love your comment. So very much. Thank you for taking the time. I appreciate everything you wrote, and agree with my whole heart. If it all had to happen, I couldn't be more at peace with how it all happened. As it was unfolding, I was in awe and wonderment (but at the very same time not) at how it continued to keep getting better. It was truly amazing and I am eternally grateful. There were of course difficult moments, but the good outweighed the bad.

      It's funny because as I retell the story of Aviana's last days, Dave always says I make it sound so good and like there wasn't any hard times. As you know from reading my blog - I am not that way. I tell it all like it is. We were provided for like I have never been before. I prayed we would be given strength to get through and we were given ample. I prayed for the same which I was given for those 16 days to be given the day of her service and I was given it as well. The whole day through.

      I have never believed there are any coincidences, but what I believe has been pushed beyond now. I have been shown the most unbelievable and it has all been through Aviana. I am so thankful for that little girl!

      Thank YOU for being here…truly!

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  9. I said this to you, privately, the day Avi died, but I want to say it here because it's something I strongly believe.

    I don't like the saying, "She (or he) is in a better place" because it suggests that being where she is loved the most on Earth isn't the best place for her. I believe Avi is in a place now that makes her better because she is now whole again.

    I think this is tough for people who don't believe in Heaven, but I do because I believe in God and I believe there is more for us than the few years we have here. Personally, I intend to see Avi again and meet her in her whole state.

    Love you,
    Dixie

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    1. I so love the way you put that. I loved it then and I love it now again : )

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  10. OMG you are Mother F*N Theresa!! :) And I mean that in the nicest, most positive, flattering way. Even when people question your decisions about your daughter, you respond with such kindness and grace. I have SO much to learn from you!!!

    I understand so very much of what you are saying. About knowing what is best for her, and having to overcome your own selfish desires (to keep her here at any cost) , and yet choosing for her and not yourself . "We had decided that every possible reason for keeping Aviana here was selfish." No truer words....

    And yet there is even more that I don't understand. That I hope I never experience or understand. But I do understand this " 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" Oh how I know that desire to escape the cold hard reality of what life is throwing at us. We are never prepared. We are never ready.

    My story is different , yet the same. Close, but somehow not even on the same page.

    Life is so hard. I am so thankful for people like yourself who welcome everyone single one of us. Wherever we are. However we got here. Different. Same. Always equal. Always accepted. Always loved.

    Many Blessings,
    Melissa

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    1. I laughed out loud when I read your comment! You are too funny! And I'm not!! I hear you though! I was expecting way more than THAT, and I was ready. The feeding thing is a little off putting. If you could see the way our jaws hit the ground…you know what I mean? I think it takes some understanding, so I wouldn't take offense and honestly just wanted people to understand more than anything if ever they found themselves in the same position or if they were going through it now. I am tired of things being hidden or swept under the rug. I feel it's so important to talk about these types of topics rather than say…"she died," end of story. I know how hard it was for us, so it has to be agonizing for others too...

      Thank you so much for everything you wrote. You are so sweet and I know you understand. I am wondering how on earth you are doing???

      Love to you!!!

      Jen

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  11. Aviana was such a free, independent spirit and in your post today it brought smiles to my face. Why, because of all “the things” she did with her food when she didn’t want it. With EVERYONE trying to come up with new ways to get food down her but she wanted it/did it her way. I can’t imagine how difficult it was then but look at the memory she has left you with. When I see a kid “spraying” food, I will now think it is Aviana saying “I didn’t want it and they don’t either!”

    God only gives special children to special people and y’all are the best!

    Jules n Texas

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    1. I love your comment. I love all of your comments. Yep…she sure stood her ground, like she always did. Fiercely independent, before and after. And she had us all dancing about…trying this and that, consulting this doctor and that…until WE found her way. She's a patient one, waiting for us to 'get it'
      : )

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  12. I love and respect you and Dave so much. I am blessed to know you and am learning so much from you. Love, Beya

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  13. Jen, that was, as ever, so beautifully written. I have been thinking of your family through this holiday. I just love your description of how you and Aviana came to this choice. I am *SURE* it will help other families.

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    1. Thank you Stephanie! I am so happy she showed us the way and we finally were able to find the right people. I am eternally grateful everything finally aligned : )

      I hope you are having a happy holiday season ❤

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  14. I can totally understand what you did what you did. To put Aviana through more surgeries and fear and pain and suffering when she had been through so much and for these surgeries to not improve her quality of life well that is no life at all. I guess this is where it becomes a sensitive subject for some who argue the value of life but what is a life lived in fear and pain with no choice? Thinking of you at such a difficult time thank you for sharing your story with us x

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    1. I completely agree with everything you wrote. There was nothing we could do to improve her quality, we had tried everything. Our backs were up against the wall and all we could do was watch this little girl with no quality day in and day out. It was making the best of an agonizing situation.

      Thank you so much for being here. Thank you for your comment ❤

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  15. We never know do we? Our future, what it holds, sometimes bright and sometimes seemingly not! Decisions are made every single moment. Some big, some small. Some take lots of thought and some not at all. How can it be that some are called on to live with unimaginable pain, while others seemingly sail on without a wave in sight. It's true I think, given the chance to live some one else's trials, we'd stick with the ones we had. I do believe we are uniquely qualified to handle the adversity that comes our way. I believe one of the greatest gifts from God is free agency. I love all that it stands for. The ability to choose, often times it's not between right and wrong but between good, better and best. What is best for one person and family may be very different than what is best for another. Respecting others choices brings dignity to our lives. Jen and Dave are a perfect example of respect and dignity, spending the last four years loving and respecting Aviana. Always trying to find a way to help her live an interactive pain free life. Providing comfort and safety. None could have done it better. They did their homework, they searched, they pondered, they agonized! They gave Aviana a voice! That voice spoke loud and clear. They understood what she was saying. They respected her decision to move to Heaven. She was ready, she had prepared, her family was going to be safe and taken care of. The Heavens aligned, a sign I think, Kama came and got her baby. Showed her the way, welcomed her home. Grace, dignity, respect, always there, always lived. A love building journey. A ball of love rolling along, bowling people over with the magnitude of it. I am forever changed. We found each other later in the game, but the love I feel for your family is not new. It is warm and familiar. There was a before for us, I know it deep in my soul. Peace out my dearest of friends!

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    1. Oh I cried when I read this, "I think, Kama came and got her baby. Showed her the way, welcomed her home." because the whole time I was waiting after midnight the 26th (while trying not to run in there a thousand times and let things happen) I was envisioning this with tears running down my face. I kept thinking, Kama - my love…is actually coming back tonight…to our house. I couldn't believe it. Coming back to get her girl, and make her whole again. I am crying now at the thought once again.

      Thank you so much for all the love. I so need to write you back, so desperately. Please know you are on my mind constantly! I love you!! ❤

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    2. I love you too! Wish we could be together and share some love, tears and joy! Loving the acts of kindness. What a gift it has been for us. We get so much more than we give. Tomorrow I'm making my husband and boys go to Different places and gather up all the carts and return them to the store. It's hard to push those dang heavy carts! I think it will be fun. Ummmm, my men, not so much. My dear dear friend, I wish for you PEACE this season. Know that you and yours are so loved! Thank you for allowing me into your beautiful life.

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  16. The strength that Dave and you have shown is amazing. You are truly an inspiration to me. What yall decided shows the incredible amount of love you had for her. I could only hope that I would be so brave. You are in my thoughts daily and continue to amaze me. Much love!

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    1. Thank you Melissa. I truly appreciate everything you said : )

      Thank you!

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  17. Jen,
    When Audriana's accident happened, and she lay all hooked up to the machines that were keeping her alive while her brain continued to swell, I asked our attending nurse if she sees a lot of children with brain injuries, and she said "Sadly, yes, I do." then she looked over at Audriana and quietly added, "You know, you might not want her to survive this" and although that hurt for me to hear, and while that might have infuriated someone else to be told that, I remember really thinking about her words. And I understood what she was saying. And I prayed to God to not let my daughter survive if she were not going to have a quality life. I remember at her bedside I told this to my mother's best friend, and she said, "Oh...I would want my daughter here on earth with me, no matter what. I would take care of her for the rest of her life if I had to." and I just looked over at her and thought, yea well it's so easy for you to SAY...you are not living in that reality. Anyway, as you know our story...Audriana did recover quite well and went on to walk and talk again. I am so thankful for that. I said to myself at her bedside 15 years ago, while she was hooked up to all those machines, that I would rather live out the rest of my life with the memory of four wonderfully happy years with a happy and healthy child and know that she's in Heaven, than to live out the rest of my life being sad for my child who lives in a semi-vegetative state year after year. I don't know, people can say what they say but until they are faced in a similar situation they really do not know what they would do. I think you did the best thing - the BEST thing - for your little girl. Thank God you had the strength to do that for her. She was not happy living like that. And she was not going to get any better, and was only going to get worse. You did the right thing, Jen, both you and Dave did the right thing and I know you already know that, but it can't hurt to tell you again and again. I'm so happy that Avi is FREE. And I'm so happy that you and Dave are free as well -- free of the day to day sadness of watching your daughter suffer.

    xoxo
    Trina :)

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    1. Hi Trina ~

      Right when we went into that family meeting, which we thought was to let her go, but they flipped the script in the 11th hour and said we should give her a chance…I said your very same prayer "And I prayed to God to not let my daughter survive if she were not going to have a quality life." I vividly remember the moments slipping away, seeing the writing on the wall, knowing the ship had sailed and this was to be her life, or lack thereof! I have written posts about shaking my fists at God and screaming, "Why did you leave her here if this was to be her life? Why didn't you just take her that day on the street? Why would you leave her just a couple notches above death? Why?" I was so mad for a little bit. But I knew He knew better, and I just had to trust and find a way.

      When all is said and done, He did know and we are better for it. I used to think it was better if she just died on the street that day. I thought it for at least a year, if not more. I'm not good with time anymore, I don't remember how long, but in retrospect, our family is so much better for how it all happened, every last minute of it. I am so grateful and thankful. I have learned to not doubt the process and go with it - to surrender to what is. I always believed everything happens for a reason, but I used to doubt it all along, so I guess I really didn't believe, right? Ha!

      I wouldn't trade one minute with Aviana. It was HARD AS HELL, but worth all of it in the end. She was WORTH every minute she was here. I wouldn't have wanted her to die on the street that day like I thought I did. I think every family gets what THEY need and this was what our family needed. I needed what I got. If I needed to walk through heaven and hell with her, for my own reasons, for our own reasons, then I did…we did. Gosh, I've been meaning to put this in a post and look…I wrote this all out because you wrote such perfect comment too : ) So true though. This has happened a few times with yous and mes, huh?!?

      Life is funny, isn't it? Live and learn always, aren't we?

      I hope your Christmas was beautiful. I hope Aiden had a wonderful 1st Christmas!

      Love you,

      Jen

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  18. Thank you so much for explaining, You certainly didn't need to, but I did wonder some of the same things as the others. Actually I have always wondered why is it horrible to let a dog suffer and not put them to sleep and yet people have to suffer until the end and it's illegal to do otherwise. Again, thank you for taking the time to write this post. YOu guys are amazing. take care.

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    1. You're welcome. I completely agree with you. I actually brought that up in our meeting…your dog reference. I thought it was the most humane thing to be ale to put Kama to sleep and couldn't stop thinking about it in comparison to Aviana. I am just grateful in the end it was as peaceful as they said it would be for Aviana. In my research I had read other accounts of it not being as peaceful, but thankfully she was one where it was : )

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  19. I've never commented on your blog, Jen - in FOUR years, but I feel the need to chime in. I particularly like your friend's comment calling you Mother F*N Theresa ;) You know how protective I am of you, and I know how much opening yourself up in this public way can draw inappropriate criticism from "armchair quarterbacks" (I obviously am *not* Mother Theresa.) But, as always, I admire your grace and kindness. In response to those two comments (which both had the slight hint of accusation) I would like to add that aside from the torture Jen and Dave put themselves through arriving at the decision to let it happen, they had an army of doctors, nurses, palliative workers and hospice care on board. They had approval from ALL of Aviana's doctors. And Palliative care and Hospice...this is what they do and they absolutely felt like it was the right thing for Aviana. So for every person who makes a statement like "you're letting her starve herself?" - there are two *healthcare professionals* giving their blessing for just that. The easy thing would have been to put the tube back in, but, as with everything else they've done, they took the more difficult road because it was what was best for Aviana.

    There. Aren't you glad I don't comment on your blog more often? ;)

    <3 Erin

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    1. Hi Erin!

      Thank you so much for your comment. You had me laughing ; ) Thank you for everything you said and being so protective of me.

      Of course I agree with my whole heart, soul, and with conviction in everything you said. I am happy you said it! Here's the reason none of it bothers me…the whole reason I decided it had to all be on the blog was for people in our shoes. That's it! If the whole time this blog is in existence and it's one, so be it…my job is done : ) Dave was leery at first, he didn't want the criticism and I understood, but I knew he would come around. I explained that it didn't matter if we got one million people questioning our decision because it's our family, and our daughter and we are 1000% confident in what we are doing so we can explain ourselves to the best of our ability, but beyond that I don't care because this is our life. He agreed.

      It had to be out there for people like us…who were STUCK!! Aviana was STUCK and we had to watch her every moment of the day…STUCK in a body that wouldn't move. Our hands were tied, or so I thought. Once I found Palliative… and once we picked our jaws up off the ground and knew we could do it…our hands were tied no more and we had the ability to FREE her and ourselves from this sad life.

      I am so fed up with things being swept under the rug and hearing, she died…end of story. HOW???? What happened?!? I had to seek and find. We were robbed of a chance to let her go a year and a half before due to the FEAR of our best doctors. At that time, in that HELL WEEK in the hospital, I vowed to Aviana to NEVER let that happen again. She went through unnecessary pain because of these professionals fear and also I believe CYA. I do believe all is as it should be, but still. I had to have people know about the feeding thing, as uncomfortable as it may be, so I was happy people questioned us. I was all too happy to answer. I actually thought I would get WAY more resistance. But YES!! I LOVE your comment with all my heart and I SO appreciate YOU for being here in protection of us. Thank you!! Thank you!! Thank you!!

      LOVE YOU!!

      Jen

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  20. Jenn, you and Dave truly are amazing parents. The way you just explained that put me at more ease than I can explain to you. I just watched my grandmother pass away at a beautiful Hospice House and it's so hard for us to grasp how the lack of nutrition works. It was actually the cause of quite a few family arguements but this post of yours has explained so much to me and I intend to read up on the links you've provided. I'd like to mention another thing, you talk about how you wish you would have been introduced to Palliative Care sooner but having followed your story from the beginning, I feel that everything you, Dave and Avianna went through were all necessary stepping blocks for you to feel at peace with your final decision. Everything you have done has been the right thing for your family. You are a beautiful person! I still marvel at the strength you and Dave have shown. You two are a perfect match and as lucky as you were to have had Avi, she was sure a lucky girl to have you both! <3 <3 <3 And you should be proud!

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  21. I've thought of Aviana often over the last 10 years and I've always wondered this. Thank you for writing this post. I wish I'd looked years ago and not waited so many years to come back. Hope you are all well. Your Aviana was beautiful and I'm certain she is remembered and loved just as much today.

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