Wednesday, January 20, 2010

From Deep Within

I don’t know if you know this, but Aviana was as close to deaths door as one could possibly be. Let me clarify, she was not just on deaths doorstep, but she was inching her way over the threshold. When the doctor finally came in to talk to us, we actually heard these words, "She is not going to make it.” Up until that point, I had never once been in complete and total shock.

Strangely, I was kind of calm, but in disbelief. I thought this was some sort of sick joke. I actually didn’t believe him. I had just seen her. I had just hugged and kissed her goodbye. I had just talked to her. We had just said we loved each other. How could this be? How was this possible? The whole time prior to the doctors’ arrival, I thought she was going to be fine.

As I had made my way to the hospital, I can honestly say, there was never a moment that I thought to myself, “Maybe she is going to die.” “Maybe she won’t make it.”

We are seven months and three days out and these are the thoughts that echo throughout my head. Your body has a funny way of shutting things out or filtering information while in shock and beyond. I am more than thankful for this defense mechanism, but over the course of the last few months, things are slowly, but surely making their way back in. For example, my mom's initial phone call was the worst thing I have ever heard in my life. I used to be able to shut that down completely, actually put it out of my mind just as quickly as it had entered.

Now, my brain plays it over and over and I am not capable of flipping the switch to the off position. I continuously think back to that dreaded day, to the days directly after, and to all of the remaining days that have followed.

Do you know that we had to make life or death decisions for Aviana? Do you know there was no black and white and every which way we turned we found ourselves surrounded in varying shades of gray? As Dave and I stayed up many nights installing our hardwood floors, there were countless moments of silence between the words. Whether silent or spoken, these moments were all filled with the same thoughts. How are we to make a life and death decision for someone else? How can it be that we are supposed to play God? Isn’t that frowned upon? We should not be allowed to make these decisions.

I also cannot forget the question that was visited and revisited one million times, the question that was asked to doctors, nurses and anyone who would listen, “What is your definition of vegetative?” I always envisioned these scenarios as being black and white, not what we experienced. I can honestly say, I do not wish this decision making process on my worst enemy. That phrase is often thrown around lightly and loosely, but I really mean it.

Our decisions have all been made and here we are. As the days turn into weeks and the weeks turn into months, the fact remains, she is unable to crawl, creep, walk, talk, eat and most importantly smile or laugh (you know, all of the simple things that make life worth living.) These are the questions that shine brightly in my face...did we make the right decision? Would Aviana have made the same decision? Is she happy? Does she and will she have a quality life?

What spurred on this blog note? Well, at one point or another, these are all thoughts that cloud my brain on a daily basis. What finally made me put it in blog form was a recent episode on Oprah. The topic was the dangers of cell phone use (mostly texting) and driving. Her guests chronicled the heart wrenching moment that changed their lives forever. I saw myself in every single one of them. I hung on their every word. With each passing sentence, my heart ached just a little bit more.

I now see everything through different lenses. Ones in which I am begrudgingly required to wear. In every situation, I can’t help but wonder, “Were you forced to make that horrific decision for your loved one?” “Is it tearing you up inside?” “Do you wonder if you made the right decision?” As we spent hours discussing what decision should be made for Aviana, I would question Dave, “How do you just decide to kill your child?” “How is that possible?”

After gathering all the information available to us, and going with our gut feeling, we decided to move forward. What if we didn't though? What if that were me up on Oprah's stage? Telling a slightly different story. I can't help but wonder what is best for Aviana? As I often watch her struggle, I can't help but revisit a morbid thought that no mother should ever have to think, "would it have been better if she died on the street that day?"

The thoughts cannot escape me. Like a shadow they follow me around throughout the day. Sometimes I catch a glimpse of that deep, dark creature, but luckily, one or two steps beyond that, lives a built in saving grace. The thought, which is two steps back, never lets me down. It's the one that always persists and remains, in our particular situation, we had to give Aviana a chance. The chance she earned and most importantly deserved.


  1. *no words just sitting here with you in this moment*

  2. I too am with you here in this moment. Thank you for sharing such a brave post.

  3. Thinking of you. Youare brave and strong and loving (and normal) to post those feelings!!

  4. Wow, that was a powerful note. I too have these moments when I am transported back (is this Post Traumatic Stress Disorder) in time to when my Son was at deaths door. (born premature) My husband and I had hard decisions to make, that no one should ever have to make for their child, and we often wonder if they were the right ones. Be strong, it's going to be a slow process, but I'm sure that Aviana is going to prove every doctor wrong!


  5. Jen, You are always so eloquent, your words are very powerful. How could you not have given her a chance. I am amazed at your strength and the teamwork between you and Dave. You two are an amazing team. I watched that Oprah too and bawled mostly because it reminded me of you three. No one deserves the stack of cards you three were dealt. What I am amazed at each time I come visit you three is the love that pours out of your home. The love for eachother the love for Aviana. Avi feels that love of that I am sure. I know the road ahead is so vast and sometimes the clouds are thick. We are only a few miles away anytime you need us. Peter did pretty good helping with therapy :) Sarah and Peter

  6. With Audriana's accident at one point the doctors asked me if I wanted them to do everything to save her. I said, "Yes, of course! What kind of question is that?" and then a nurse told me that I might not want her to survive this. I was in shock that someone would say that to me. But I look back now, and I know what they were implying, and I know why they felt they should ask me that. I had to sign so many papers. One inparticular stands out. I had to sign a permission for them to perform a "partical left temporal lobectomy". That was such a hard paper to sign. Such a hard decision for me to make. It could possibly save her life, I was being was her best chance at surviving this, I was told. But still. I couldn't help but to think: I'm signing a paper giving them permission to remove a portion of my child's brain, which was perfect and unhurt just 20 hours ago....this can't be happening, when just hours ago we were in the snow together, sledding, and enjoying the day. No! Can't we just press "rewind" and start the day over? Can't I just blink really hard and wake up? I was expected to make so many important life or death decisions for Audriana, and with each one I doubted myself to some point. I felt she should be making these decisions, as silly as that sounds. It was her brain, afterall. Her life. What if I make the wrong decision? Ugh. It was such a hard time. No, you're so don't even wish this on your worst enemy, do you? You just can't. It's awful, being in that situation.

    Aviana is giving kisses! She is "in" there, Jen. It's just going to take a whole lot of work and a lot of time to get her to wake up a bit more. Keep on keeping guys are doing a great job with her. I have no doubt that you made the right decisions for her.

  7. Jen, i have no words to say, my friend...just know that we keep you, your little one, and your whole family in our prayers.

    Much, much love...

  8. amazing post. really not much for us to say. From looking at it on this side although I see she is certainly not what she was, she has changed with leaps and bounds compared to last summer. I worked with a head injury young man and you wouldn't know it from seeing him, but he was actually in there, once he was able to use a computer to communicate he was there just stuck in his body, so you just never know,she is so young which really is a great time for the brain to try and rewire itself.

  9. Was there ever a sweeter kiss brushed on your cheek? She IS alive and, with all due respect, I believe you are more alive, too.

    "If our vocabulary did not contain the words trouble, adversity, calamity and grief it could not contain the words bravery, patience and self-sacrafice. Those who face no calamity will need no courage. Mysterious though it is, the human characteristics we admire most grow in a soil with a strong mixture of trouble."
    ~Dale Turner