Saturday, March 29, 2014

In Response

I received this comment on my most recent post called, "For the Best." I really appreciate the love and support for our family from those who commented afterwards, but really, it's okay. Dave and I both feel the very same way we felt upon receiving a few similar comments a few months ago. It's just another reminder of why we choose to share the feeding aspect, along with the truth of how Aviana died.


Comment


Hi,

Although I enjoy reading your post, I just can't understand how anyone can justify allowing a young child to starve. I know it was tough and heartbreaking for all of you, but to think that a brain injured child can make a life changing decision to stop eating is something I just don't agree with. I'm wondering if this was agreed to by doctors as the way you write about it to me is something close to assisted suicide. Not sure how anyone could consciously watch their child starve over the course of weeks. It must be very difficult to live with the decision you made on a daily basis.





My Response



Hi Anonymous ~


I previously had a few people comment that felt similar to you. I responded to their comments with a few posts, not in hopes of changing their thought process, just in explaining further. I understand we have completely different views on the matter, and that's okay. I have no reason to justify ours as a family, as we feel completely at peace with the decisions we made for Aviana. The sole reason we choose to share our journey in its entirety is for one main reason. We share for any family who's found themselves in a situation like ours, and with a child who is refusing like Aviana. 

I understand and actually do respect your opinion, but it's definitely not, nor ever will be mine - for my family and most certainly not my sweet, loving daughter.

Of all the things I've accomplished in my life, or ever will in the future, I'll die knowing I did absolutely right by, and for, Aviana. It's the one thing I'm most proud of. I say it to Dave often, "I'm so proud of how we handled everything from the accident forward, but especially in the end." And guess what? I'm not one to pat myself on the back. But we did it! We worked like never before, were ridiculously proactive, saw everything for what it really was, tried to have a good attitude throughout, did what was needed, and in the end - it was as beautiful an experience as could be. Best of all, Aviana was pain free and peaceful. Furthermore, we learned everything from her and carry every bit, in every step we take. Who can ask for anything more? If life has to be this way... and I've learned it sometimes does, who can ask for more? 

I am most grateful everyday and every moment for our Palliative and Hospice staff - for without people like them - people like Aviana would continue to needlessly and endlessly suffer. And in turn, so would we...my whole family.

If you so choose...


25 comments:

  1. Thank you for sharing your life and this journey with all of us. Most especially, thank you for sharing Avi with all of us. Many blessings to you and your family. Melissa

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    1. You are so very welcome. Thank you for being here.

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  2. I'm sorry some people are so cruel. I can't even imagine what you've been through. I feel some sense of guilt that I "use" your story to remind myself daily of how precious (and possibly short) life can be.

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    1. Thank you Rebecca. Please - never, ever feel an ounce of guilt. A long time ago I wrote a post called "Use Me." I want people to. If this had to happen to us, to Aviana, then I also want our story to help others! Always.

      I tried to pull the post, but couldn't fast enough. I used it in a chapter for a book I contributed to.

      ***

      So, based on our situation, all I ask is that you please use me. If you need me, I'm here for you to use! Trust me when I say, being used will never have felt so good!

      Use me when your child is talking excessively, and it has been a long day.

      Use me when the thought briefly crosses your mind in not taking the extra steps to the crosswalk.

      Use me when you are so busy, and your little one just can't stop asking questions.

      Use me when your kids are making a disastrous mess and you are a complete neat freak.

      Use me when your child won't stay put and continues to run away.

      Use me when you're telling your child to do something for the third time, and they are STILL playing with their toy.

      Use me when you are feeling stressed out, and don't think you can continue on.

      Use me when you are distracted, and not "in the actual moment" with your kids.

      Use me in moments of not enforcing the use of a helmet.

      Use me to really feel your child's arms wrapped tightly around you.

      Use me to listen carefully to the sweet, sweet voice that's coming out of that little mouth.

      Use me to appreciate the fact that your child can run to you while screaming, "Mommy!"

      Use me to not get too upset when they are being loud and obnoxious.

      Use me when they object to their bedtime.

      Use me when you are distracted or not paying attention while driving.

      Use me when your kid is driving you bonkers at the park or mall.

      Use me when they won't eat exactly what they are told, but are still eating nonetheless.

      Use me to appreciate every single "I love you" that tumbles from their precious little lips.

      Use me when you are feeling like you are at the end of your rope.

      Use me when you have to chase after them.

      Use me when they are exercising their independent, rebellious nature.

      Use me for all the things I cannot even think to come up with.

      Use me,

      Use me,

      Use me,

      Use me,

      Use me,

      And then use me some more.

      And when you don't feel you are doing a good job of using me,

      Go easy on yourself....

      I know it's difficult to stay in the moment. I used to try to use other people's horror stories to make myself more appreciative too! The full-blown patience and gratitude never lasted as long as I hoped it would....

      ***

      I "use" people too. I too understand the exact feeling you described. I think it's only natural, and anything that reminds us to appreciate life is a WIN : ) We all need anything and everything we can get our hands, eyes and ears on, right? : )

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  3. I am also sorry that you have to receive comments from someone that obviously does not know all that you and Dave (and your family) have done for Aviana over the past 4.5 years. I am sorry that they are unaware of the extraordinary effort you all put out despite her continual deterioration until her passing. I am sorry that they also are not aware of how Aviana suffered and will continue to suffer with her continual seizures and additional operations due to her collapsing skull. I am so sorry that they cannot understand that Aviana’s refusal to eat also means that another feeding tube will have to be inserted. That her physical deterioration (e.g., her liver results) means that she will inevitably not survive much longer and that artificially keeping her alive serves Aviana and all concerned no value and, in fact, does harm. I am not a believer (and this applies to my own life) in extraordinary steps taken to maintain a life when that life is not “living.” I am also not a believer in taking extraordinary steps when that “not living” life forces other lives to “not live.” I am so glad that there are programs like Palliative Care and Hospice around that permit “death with dignity.”

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    1. Perfect and beautiful - as always. Death with dignity. That's what I hope for...for all of us.

      Thank you so much.

      I love you.

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  4. Love what Roger said. It is all so true. Unfortunately there is always going to be someone out there that does not agree with the situation. As hard as it is you have to not let what they say get to you. They did not live with Aviana so they will never know what she and you as a family went through on a daily basis. I understand why it ended the way it ended. Aviana suffered enough in her short life on this earth and you didn't want her to suffer at the end. Because no matter what you did there was going to be an end for her. You wanted Aviana to go as peacefully as possible and this was the best way for that to happen. Mindy

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    1. Thank you Mindy. You're right, not everyone will agree. I'm okay with that. I just want to share Aviana and her story in hopes of helping anyone who might find themselves in a situation like ours.

      You're also right in saying she suffered enough. Thank goodness for those who helped us give her peace. Because of that peace, we are able to grieve better : )

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  5. Thank you for being you and taking such good care of such an amazing little angel. You made the greatest decision and sacrifice imaginable. Some people just don't have the capacity to understand.
    Sending love,
    Tracy

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    1. Awww, Tracy. Thank you for saying so. What a truly beautiful comment.

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  6. That's really nice of you to respond to the anonymous person who thinks they should weigh in on the most important thing in your life, but won't even tell you who they are. You are a better person than I because I have my own response for that anonymous whoever.

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    1. Don't mess. Gina wants a name!

      Nah, it's really fine. I don't care that he/she's anonymous. The thing is, we don't ever have to agree. I look at these kinds of comments as one more opportunity to bring light to the issue. And when it comes down to it, I'm just happy we could free Aviana and can hopefully help those who maybe want or need help in this area?

      Thank you girl!!

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    2. There was a CNN story a week or two ago about a little girl who had a horrible accident, of a different kind. She was left blind, deaf, and paralyzed. The family was from Texas, and the only thing they were legally allowed to do was stop her feedings. Such a complete opposite from Avi, who decided herself that she was done. It brought back your "fight" to do what is best for your baby, even if it seems wrong to others. This family(not anonymous) is now trying to get their story out that the ONLY option they had to end her pain was to stop feeding her, when it was clear that she had zero quality of life for the remainder of her life. Sigh…"cyber hugs"...

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  7. I just read an interview with Katy Butler and an excerpt of her book, "Knocking on Heaven's Door," about how modern medicine decreases our chance of a good death. You, and anonymous, might find it interesting. Having witnessed the death of both my grandparents, I fully understand the feeling that by not intervening you are somehow complicit in a death, or suicide--even though it was only through dozens or hundreds of interventions that you still had a living body, and that without those interventions death would have occurred naturally so long ago. So kudos to you for having the grace and the grit to give Aviana the good death she deserved.

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    1. Hi Adrienne ~

      Everything about your last sentence made me smile... in a big way. Thank you for not only those words, but everything else you wrote, I so agree. I looked Katy's book up right away. It seems like a great one.

      I find it interesting that she (Katy) commented to me the very next day? I'm wondering how she heard about this post? She referenced another book about a brain injured child and his family called, "Holding Silvan." I'm sure that's an interesting read as well.

      Thank you again Adrienne!

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  8. Jen, once again you amaze and inspire me. I think death is so taboo in our society, and many of us shun away from it and resist it. I find it helpful, and perhaps Anonymous might also, to realize that we were each designed by our Creator...to die. It is our destiny, and is beautiful. I strive for just a sliver of your wisdom and confidence, which allowed you to honor and best care for your beautiful daughter, in life and death.

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    1. Thank you Chelsy ❤ You are honestly always way too kind. This has all been an unexpected learning process and curve, and trust me, there have been tons of stumbling blocks and question marks along the way ; ) I'm sure you've seen plenty through the posts! I'm grateful though that Aviana provided a clear cut guide for me to follow. She's the one who steered me in the right direction. She's the one who always kept me on the right path. I have her to thank : )

      I so agree with you, death is taboo in our society. Before all this happened you could find me, feet planted, in the category of "shun away and resist." I felt if I didn't have to think about, or talk about it... it wouldn't happen. Guilty as charged. Then it happened and I had to face it all head on. Now is a different time and I can talk all day long, still of course hard at times, but not NEARLY as hard as before. Now it's a natural and - what Kama and Aviana taught me - beautiful part of life for me ; ) Before, no way, no how, oh... and screw that ; ) So...I get both sides completely : ) : ) I always think, I can see both sides now. I was one person before, one after, and then there are shades of grey. I've been working on that post for years, or...maybe I wrote it? I can't remember, but it's been rolling around for a long time!

      Now I'm rambling.

      Thank you. Thank you. Thank you! You are one of my favorite people here!

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  9. Jen I am so proud of how you handled this Anonymous responder. Nobody asks to be in a situation as yours or mine but we can both say we did 110% to give our daughters the best chances for a meaningful recovery. We loved them, encouraged them, comforted them and they did the same for us in the ways the could. I also don't' expect others to understand why we kept her alive in the beginning or why we decided to let her go when her little body could no longer weather the storm. Much love xoxo Laura

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    1. Thank you Laura. You are exactly right. We sure didn't, and we sure did ❤

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  10. As always, handled with such grace! You are a beautiful person Jen! No one can take away from you how lovingly you respected your baby's wishes. :) xoxo

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    1. Oh Jenn...thank you so much. I really appreciate everything you said!

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  11. You're the mama. The mama knows. Period.

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    1. We laughed!! Of course we laughed! And...you are RIGHT!

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  12. No one has the right to question your choices as to what is right for you and your family unless they have walked your journey. My prayers for all of you. Aviana was blessed with a beautiful family full of love.

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    1. I had just pulled into the garage from the gym last night. I sat in my car and finished listening to one of my very favorite songs, and then read your comment. Your words are perfect, every one. I couldn't agree more, no one has the right unless they have walked your journey. Thank you for being here. Thank you for your love ❤

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