Tuesday, July 3, 2012

Let's Go For A Ride

It was never my intent to jump all over the place, to skip forward and back, but it seems that's the way this story is meant to be told, in the form of a roller coaster. Hmmm...reminiscent of our lives. How about that?

Our family, and I mean us as a whole, are not the type of people to sustain a life which has no quality. When Aviana was initially in the hospital, the damage was vast, and I mean global. The CT scans were horrific, and hard for everyone to look at. She was much to unstable at the time to get an MRI until the morning of the family meeting.

Everyone believed the MRI would just confirm what the CT scans already showed all along. So, we made our way into that dreaded room of which no one wants to go. We were going to discuss ways of letting Aviana go. But a strange and unexpected thing happened, coincidentally - three years ago today, the doctors had a change of heart when they saw her MRI and decided we should give her a chance.

We decided to keep going based on their recommendation. But then a couple days later, we were transferred to Kaiser and their doctors took one look at Aviana's MRI and immediately pulled me over and questioned why it was that we continued, as her entire brain was fully stroked? I said, "you can't possibly be looking at the MRI, you must still be looking at the CT scans - wait until you see the other scan." But no, they were looking at the correct one.

Two sets of doctors, two different hospitals, looking at the same MRI with two completely differing opinions. Typical.

Well, we trusted UCD much more than Kaiser and pressed on. It turns out Kaiser was right.

The brain is a complete mystery though, so no one really, truly knows. They do the best they can, and call it a day. They are dealing with a human life and human, feeling families, so I'm sure difficult can't even begin to describe what these doctors go through.

We knew once we chose life, we would be in it for good. So what we did, is as you well know. But as nothing was gained, we all couldn't help but feel that her little life should have ended on the street that day. Those are some tough feelings to sit and wrestle with. After all, the most brightly lit light went out that day. Her life, lost. Her pages, all torn out.

So as I said before, a realization void of progress invited some awfully dark thoughts. If she couldn't do much beyond breathe, for the rest of her life, then what else was there?

In those days, I shook my fists up above plenty of times and screamed, "what the hell is this, you leave her just a couple of notches above death...and that's it?!? We worked our fingers to the absolute nubs, for nothing?? You can't even allow her to show happiness? What kind of sick shit is this? You couldn't even have thrown us a freakin' bone? Either take her, or leave her! But leaving her a couple notches above death is just a sick, twisted joke, now isn't it? Thanks for nothing!" Whoever is there, if anyone, didn't listen, because she's still the same : / But our attitude is different now, so who really knows : )

As you can tell it hasn't been easy, and it's been a very long road of making peace of why it was she was spared that day on the street, and so many times thereafter, but yet no recovery.

Like I said before, we are not the life sustaining family, just merely to maintain breath. We never have been, but this is not our choice. There is someone else making these choices for us, something greater than us. When it is our choice, sadly...we will have to make it, but until then, we are here to care for this beautiful child, to the best of our ability. But more than that, we are here to learn from her.

We were always learning from Aviana, but the truth is, at first we were snowed by her extensive recovery program. In all honesty, there wasn't much of a moment to learn from her, we were in constant motion, continually putting a bag over her face, or something of the sort!

Over time though, the storm has been lifting little by little. Once we stopped the program, everything became clear. We could see, we could learn. Now, I'm not saying this is for everyone. I am speaking solely for us.  Aviana still has therapy at school. And as you well know, if that program was working for us, we would still be busting our tails, but unfortunately it wasn't : (

Now I'm not going to sit here and tell you that I still don't, often times, look at Aviana and wonder why she's still here, because I do, but what I'm saying is, that more often than not, I know why people such as her sweet, little soul still remain.

I can say this though with 100% certainty, it seriously sucks to be the one that the so called "miracle" didn't happen for.

It weighs heavily on the heart to repeatedly read these types of stories time and again and have the words sear into your eyes, brain and especially heart, like the hottest coals possible:

The boy who would never talk or walk!
Written Jun 5, 2012 2:15am
When the kids were all in the PICU in Tennessee and Owen's first cervical spine MRI results had been read by the radiologist, Susie and I were escorted to a room to be "briefed". In addition to the attending intensivist, there was also a social worker, pastor, and at least two other people that I can't remember. Not exactly the cast of characters you assemble to tell you that everyone will be feeling well in a week or so. The one-way conversation pretty much went like this..."He will never talk, walk, blah, blah, blah"...or at least that's my recollection.

11 months later...

The last two weeks in church I've had to stop my self from laughing. Last week Owen just wouldn't shut up! He just kept talking to his cousins, making sounds, and carrying on. This week, he tried to sing every song! He's actually started to get mad when the choir stops. Since he doesn't read and hasn't memorized all the songs, he's considerably better at singing along with Justin Beiber or something on the radio (maybe even a little Ludacris). Both weeks I've just thought back to that day and smiled.

I've reached the conclusion that it's the ICU doctors' job to scare you and give you the harsh news; uncut, uncensored, and worst-case. They can be kind people (I actually loved the PICU physicians at Erlanger), but it's their job.

6 months later- He's walking, talking & working!!
Written May 16, 2012 6:13am
So it's been awhile since I've updated on my brother, Tim! What more perfect time than 6months today! 6 months ago, my family's world was turned upside down! After a horrific car accident, we were told by doctors that IF Tim survived, he would basically be lifeless. We were giving no hope for him... His Two beautiful daughters & wife stood loss in a desperate plea for a miracle! As Heather said earlier this week to me, we've gone from us walking in his room where he seemed so helpless, asleep and couldn't move. The nurses telling us he's in a completely black room because his ICP is too high and the meds wont keep it down or if u wanna look at him just look, but don't talk or touch him, to Constant prayers from ALL over the WORLD later, he is now a walking & talking true MIRACLE! Our God is so awesome! He's back at work with 40 hrs!! With a little therapy on the side... He's more happy & outgoing now than ever! He still has trouble with his right eye, speech & balance so please still be in prayer for these things. I know it takes time. Again, from our family, THANK YOU to everyone who has been there for us & most importantly for your continued prayers. *Team Tim*


And, for the most part, and to much of the same degree, the stories just repeat themselves like a broken record. So, we must move on, and know that these just aren't our story. That's just not the way the cookie crumbled for us! We must count the life, and blessings we do have. We must learn to live this life. 

Re-reading The Power of Now and A New Earth helped me greatly with this, but beyond that - together Dave and I came to a new realization. It truly brought me to my knees.

This realization was just beginning to set in as Aviana's program was finally winding down, but it was recently almost losing her that really catapulted us into a whole new stratosphere.

I am spent for today, and once again have said way too much : )


  1. I'm so sorry.

    Miracle stories.

    Miracle stories sometimes suck ass and it's hard to listen to them without saying something smart ass. Well, that's just me. It's hard not to say "good for you, what about US?? We were supposed to have a miracle too!" or "great, what good does that do US?"

    Again, that's just me and I know you're way more kind than me but that's why we get along, yin and yang, nice and mean, open minded and bitter, country music and rock. Well, you're trying to convert me :) We'll see on that one.

    I love you.

  2. Girl, once again,you've spoken my words. I didn't come to true appreciation of Christian's life until I stopped looking for a "cure."

    I often wonder how and why these miracle stories find me. I certainly don't go looking for them. I don't want to know because it's not for us. Glad some people can be happy for those families but I can't.

    Love your honesty, as always.

  3. (another long comment from me!)

    I find that more often than not those "miracle" stories aren't such miracles after all. I don't mean to be cynical, but I think the term "miracle" is over used. Some of those people were not as hurt as people claim them to be. For example, back when Audriana was first hurt, my mom heard a story on the news of a 22 year old young man who was graduating from college, and the news reported that he was a "miracle" because at the age of 5 he sustained a severe head injury and overcame the odds, etc. And because I was so desperate to help my own severely brain injured child, I contacted the mother of that boy to find out just what they did to help him. (because graduating from college sounded pretty darn good to me, when at the time my 4 year old could not walk or talk) Once I explained our daughter's injury to this mother, she basically said to me that her son was never as hurt as our daughter, and that he was out of the hospital just one week after the accident (as opposed to my daughter's 3 month stay) and that he never lost his speech, he never had trouble using his arms and legs, and that his brain injury was mainly cognitive in that he had a hard time with comprehension and concentration. So for them, that he graduated from college was a "miracle" -- because he had to work so hard to compensate for his learning disabilities. Okay, so while I'm happy this kid did so well in his "recovery", couldn't the same thing be said for a child with dyslexia? That a child with that kind of a learning disability would have to work very hard to do well in school, graduate from college, etc?

    I don't know, and maybe it's just me....but in my opinion, a miracle would be someone like Aviana, a child with an MRI that shows not much brain quality, to get up and walk and talk one day. To do that without much healthy brain, now THAT would be a miracle. Even with Audriana, I don't consider her recovery a "miracle" because only half of her brain was damaged. The left side was pretty much destroyed in the car accident, yet the right side still had healthy brain. So then because she was so young, her left side functions (such as speech) just transferred over to the right side of her brain. Is this a miracle? Well, I think the human body is pretty neat that way, but with hard work and years of therapy, this is possible for a child of that age. I've heard cases where a child almost drowned, was without oxygen for 5 minutes or so...and then was in a coma....then woke up and made a full recovery. Is that a miracle? Well, I don't know. Let me see the MRI of that child's brain. If there is NOTHING there (complete or near brain death) and that child woke up and made a full recovery? Heck YES that's a miracle! But if the MRI shows not much damage to the brain, with just spots here and there of brain death...and then that child wakes up from the coma and makes a complete recovery...well, I'm sorry but to me that's no miracle. That's LUCK. Lucky for that kid that he didn't have much damage to his brain.

    Do I sound awful? I know I probably do. But I really think these "miracle" stories have more to them, things that are not being explained. I just think that for most of them (not all, but most) the damage to the brain wasn't as severe as they claim it to be, or as they think it is. Doctors always paint a bleak picture. They of course told us Audriana would never talk again. So because she's talking today, it is a miracle? No. She's talking because she was LUCKY in that the right side of her brain wasn't hurt all that much, and her speech from the left side of her brain transferred over to the right side, AFTER MUCH THERAPY and HARD WORK. So because of the amazing body's capabilities to heal itself, and because of all her hard work, she can talk today. But some would say it's a miracle.

  4. I'm not saying I don't believe in miracles. I do. They happen, I'm sure. But it's just so darned frustrating to read about these "miracle" stories when more than half the time people exaggerate it to make it sound as if it was more bleak than it actually was.

    You worked just as hard as we did with The Program, yet the results you got with Avi were not the same that we got with Audriana. And that SUCKS ROCKS big time. But it wasn't because we got a "miracle" with Audriana's recovery. It was simply because her brain isn't as hurt as Aviana's. She has more healthy brain matter to work with. I don't know why some get more hurt than others. I guess it's because like you say, Aviana has her own story. And Audriana has hers. And everyone has a purpose in life, even if it is to teach others lessons. Every life is precious. Period.

    I just want you to know that I'm still praying for a true miracle for your sweet girl. I will always pray for one for her. Always, always.


  5. I've read and reread your last few posts and just can't think of a helpful response. I think you're amazing in your ability to take it all in and make sense of what you've been through....and retain your sense of humor.

    I agree with Trina. "Miracles" mean different things to different people. To me, a miracle would be if Avi regained all that she lost. I believe in the concept of miracles, but I haven't seen many that qualify in my mind, but then I'm a bit cynical. However, that doesn't mean I don't hope and pray for anything that feels like a miracle to the people who need them because I do.

    Wishing you miracles, unicorns, and rainbows! And many really good days!