Subject Line:
Sleeping Beauty
Body:
Too dark for me and your readers. The lady is smothering the person on the bed. What is that all about?
Usually I just write a brief explanation back and carry on with my day, but today she got me thinking. To us, the video was pretty self explanatory, but in light of her email...maybe not.
Dave and I love the band, A Perfect Circle, but mainly the lead singer Maynard James Keenan. He brings light to things most people are too afraid to. Dave came home yesterday and said, "hon, you've got to see these lyrics!" This song really resonates with us, for many reasons.
There are absolute horror stories of people in the special needs community being taken advantage of, in too many ways. It sickens the soul. These savages are satisfied by luring desperate parents through therapies claiming miracle cures, sometimes millions of already dead stem cells injected, etc. But in all ways - these families are, often times, drained financially. Now I'm not saying all of them act in this manner, I'm just saying there are many.
I know we see corruption and greed in every arena; when we were adopting Aviana, with the elderly, with all kinds, but since we now have a severely disabled child, we are especially attuned to these types of stories.
On another note, we have always had nothing but good to say about The Institute, and don't get me wrong...I do still love them, but as I've said before, I literally had to drag the information out of them as far as how hurt they felt Aviana truly was. Through our time, she was also making almost zero physical progress, I couldn't help but wonder, had we decided not to return, how long were they going to continue to advise us to come back every six months?
I hate to even point this out, as they did so much good for us physiologically, and we are adults and eventually made the right decisions for ourselves, but when is it within them to see the writing on the wall and admit it, too? There was a part of us that couldn't help but truly reflect on their inflated ego within those very lyrics.
If they always knew Aviana was indeed, just too hurt, then why were they pushing us to an absolute breaking point? And, it's one thing to break our backs, but a completely different thing when it came to Aviana. She was not allowed to have one split second of a break? The guilt that was laid in association with Aviana having a breather, and her recovery, was unbelievable. According to them, she was a round the clock machine, much like a robot. In the end, this was where we ended up butting heads. If she was making progress, I could see their point - to a stronger degree, but she wasn't...so I could no longer agree?
We could also relate to the video by way of thinking we could really help Aviana. We thought we could make her better. We thought we could battle this brain injury and win. We believed we would come out on top, but we learned early on...it was much too much for us. The beast was strong, and defeated us by a landslide!
So if you happened to watch the video, please know that this process takes on all kinds of forms and feelings, and at different times. Dave and I watched the lyric video, and we chose that exact one with the skeleton suffocating the faceless person lying lifeless in the bed, because this is the reality of our situation.
I know, it's not pretty, but our lives aren't always pretty. How can they be? There are many shades. I can't come on here and paint a beautiful picture every time, because that wouldn't be the truth. The reality is that Aviana doesn't move and for the most part, she lays lifeless. And that skeleton, the one holding its hand over the face, and suffocating...well that's the goddamn brain injury. It's holding our girl down, lifeless.
So that's the long and short of it. That's what the video was all about. Nothing morbid, or bad, just the true nature of our situation, and the reality of what is sometimes happening to the special needs community as a whole.
Wednesday, July 11, 2012
Tuesday, July 10, 2012
Sleeping Beauty
Email received the next day...
Subject Line:
Sleeping Beauty
Body:
Too dark for me and your readers. The lady is smothering the person on the bed. What is that all about?
Usually I just write a brief explanation back and carry on with my day, but today she got me thinking. To us, the video was pretty self explanatory, but in light of her email...maybe not.
Dave and I love the band, A Perfect Circle, but mainly the lead singer Maynard James Keenan. He brings light to things most people are too afraid to. Dave came home yesterday and said, "hon, you've got to see these lyrics!" This song really resonates with us, for many reasons.
There are absolute horror stories of people in the special needs community being taken advantage of, in too many ways. It sickens the soul. These savages are satisfied by luring desperate parents through therapies claiming miracle cures, sometimes millions of already dead stem cells injected, etc. But in all ways - these families are, often times, drained financially. Now I'm not saying all of them act in this manner, I'm just saying there are many.
I know we see this happen in every arena; when we were adopting Aviana, with the elderly, with all kinds, but since we now have a severely disabled child, we are especially attuned to these types of stories.
On another note, we have always had nothing but good to say about The Institute, and don't get me wrong...I do still love them, but as I've said before, I literally had to drag the information out of them as far as how hurt they felt Aviana truly was. Through our time, she was also making almost zero physical progress, I couldn't help but wonder, had we decided not to return, how long were they going to continue to advice us to come back every six months?
I hate to even point this out, as they did so much good for us physiologically, and we are adults and eventually made the right decisions for ourselves, but when is it within them to see the writing on the wall and admit it, too? There was a part of us that couldn't help but truly reflect on their inflated ego within those very lyrics.
If they always knew Aviana was indeed, just too hurt, then why were they pushing us to an absolute breaking point? And, it's one thing to break our backs, but a completely different thing when it came to Aviana. She was not allowed to have one split second of a break? The guilt that was laid in association with Aviana having a breather, and her recovery, was unbelievable. According to them, she was a round the clock machine, much like a robot. In the end, this was where we ended up butting heads. If she was making progress, I could see their point - to a stronger degree, but she wasn't...so I could no longer agree?
We could also relate to the video by way of thinking we could really help Aviana. We thought we could make her better. We thought we could battle this brain injury and win. We believed we would come out on top, but we learned early on...it was much too much for us. The beast was strong, and defeated us by a landslide!
So if you happened to watch the video, please know that this process takes on all kinds of forms and feelings, and at different times. Dave and I watched the lyric video, and we chose that exact one with the skeleton suffocating the faceless person lying lifeless in the bed, because this is the reality of our situation.
I know, it's not pretty, but our lives aren't always pretty. How can they be? There are many shades. I can't come on here and paint a beautiful picture every time, because that wouldn't be the truth. The reality is that Aviana doesn't move and for the most part, she lays lifeless. And that skeleton, the one holding its hand over the face, and suffocating...well that's the goddamn brain injury. It's holding our girl down, lifeless.
So that's the long and short of it. That's what the video was all about. Nothing morbid, or bad, just the true nature of our situation, and the reality of what is sometimes happening to the special needs community as a whole.
Sunday, July 8, 2012
Etch A Sketch
I will never forget. It's a moment etched for eternity. No amount of sand and vigorous shaking will ever dislodge the image. I was doing the dishes, and rambling on about our next potential plan of attack in the world of brain injury. With the gentlest of eyes, Dave looked at me and said, "you know, Aviana probably won't be living a very long life. Are we really going to want to look back on these years and realize we put her through one therapy after the next? Maybe we should focus more on her happiness, and the time we have left with her."
No dam could have stopped the amount of tears that spilled forth at that moment. I'm not sure if I was in some sort of denial, or what. I have always felt Aviana wasn't going to live a long life, but actually hearing those words aloud hurt my heart in an indescribable way.
I think it was a culmination of so many things at once; the loss of the old Aviana, the realization that the program didn't work, not knowing which way to turn with her at the time, feeling we were way too young to be having these all too adult conversations, watching this slow, yet apparent demise of the new Aviana, knowing that we were going to lose this new little girl as well, and now talking about making the best life we could for her under these circumstances. It was all too much at one time, and in one moment. The levee had but no choice to bust wide open. Poor Dave...
But he was absolutely right. The months leading up to that moment were absolute mayhem for me, as I was swirling in the sea of brain injury and recovery. I am the queen of, "go with your gut," yet, I was doing anything, but. You see, as we were heading off to The Institute for the first time, I told Dave, "This is it! If this doesn't work, that's it. Mark my words. I'm not going to be one of those parents who run off into every single type of therapy, and cure. We are doing the most extreme program, and we will do it 100%. If she doesn't respond, then that's it, we will have to come to terms with it." We agreed. We figured, if she didn't have enough brain to work with, then she didn't have enough brain to work with.
But then, when it really happens, and it really comes down to it, and your child doesn't respond, something funny happens - you have to sit and wallow in the sad and restless unease of it all. And then, as if that's not bad enough, the worst comes knocking... the what if? What if there's something else out there? Something else that she will respond to.
What if her brain didn't like The Institute program? What if her brain is screaming, "Stem Cells, you idiot! I want stem cells!" What if it prefers a trip to Costa Rica...or Tijuana for them? Maybe her brain will respond if she is amongst people who look more like her. Maybe we can ask some Guatemalans to meet us there. Then your mind really goes off the deep end, and you think maybe you can find her foster family again and they can join you and she will respond to them. Maybe they can speak Spanish to her just like when she was a baby. Oooh I know, simultaneously while she's being injected with those cells....that's it, it just has to work! Or maybe, they should put me in a straight jacket...in a heavily padded room? I don't know, just a fleeting thought. Or, what if Avi's temperamental, little brain is an animal lover like me, and wants to do horse therapy? Or what if it wants Anat Baniel? Yes, Anat. Maybe it would respond to a gentle touch, rather than the rigorous throws of The Institute exercises? No wait, what if her brain wants to go really international for therapy? Russia. Really brain? Geez. You really are high maintenance, aren't you?!? Or what if Avi's brain is superficial and shallow and is trying to use us for a free trip to the Napa Center in L.A. Maybe it's trying to escape to spy on the celebs?
Who really knows? I can't figure it out. Your guess is as good as mine. If all these super smart scientists can't unravel the mystery, how the heck am I to?
And just like that, you quite suddenly identify with all those other parents you saw. You find yourself on the computer, night after night, at 3 am doing late night...into the wee hours of morning searches, and understand the chase of therapy after therapy. You quickly become one of them.
But the truth of the matter is...you always go back, back to your gut, and you know...her brain is just too hurt? And we know the truth, it is. It's just the cold.hard.fact. After a year on the program, I dragged it out of our advocate. Do you remember? The bottom 5%. The worst 5% they have worked with. The bottom of the barrel. Our kid...just too hurt. We heard it from the doctors, and that is to be expected, but once I heard it from them...I knew for sure. I mean, I felt it in my heart after six months on the program, but to actually hear it...that's a different story. I'm seeing a pattern here, are you? So if that's the case, and as always, we are just banging our heads against a wall, just running up hill and in circles, what do we do?
We contemplated it all and almost acted on much, but after what Dave said that night over the suds in a bucket, okay we don't wash our dishes quite like that...but after that, we might ride the horse, but only because Aviana might like it.
From here on out, we are being guided solely in the direction of what makes her happy, and what keeps her body in good, working order. That doesn't mean in good recovering order, this means in our best efforts of avoiding deterioration. And this was what lead us to our decision on starting her in school, and other things I am still trying to tell you : )
Dave is my brain. He keeps me grounded and logical. I had kind of a false sense of her exact longevity. I never thought it was going to be truly long, but definitely longer. As you know, we both learned otherwise with her recent unexpected trip in the hospital.
I definitely needed to hear, out loud, what Dave had to say that one night. As hard as it was, he knew I needed to hear it. Those words have actually put our family on the perfect path. I couldn't have realized it at the time, but they have set us free, and I thank him for that!
No dam could have stopped the amount of tears that spilled forth at that moment. I'm not sure if I was in some sort of denial, or what. I have always felt Aviana wasn't going to live a long life, but actually hearing those words aloud hurt my heart in an indescribable way.
I think it was a culmination of so many things at once; the loss of the old Aviana, the realization that the program didn't work, not knowing which way to turn with her at the time, feeling we were way too young to be having these all too adult conversations, watching this slow, yet apparent demise of the new Aviana, knowing that we were going to lose this new little girl as well, and now talking about making the best life we could for her under these circumstances. It was all too much at one time, and in one moment. The levee had but no choice to bust wide open. Poor Dave...
But he was absolutely right. The months leading up to that moment were absolute mayhem for me, as I was swirling in the sea of brain injury and recovery. I am the queen of, "go with your gut," yet, I was doing anything, but. You see, as we were heading off to The Institute for the first time, I told Dave, "This is it! If this doesn't work, that's it. Mark my words. I'm not going to be one of those parents who run off into every single type of therapy, and cure. We are doing the most extreme program, and we will do it 100%. If she doesn't respond, then that's it, we will have to come to terms with it." We agreed. We figured, if she didn't have enough brain to work with, then she didn't have enough brain to work with.
But then, when it really happens, and it really comes down to it, and your child doesn't respond, something funny happens - you have to sit and wallow in the sad and restless unease of it all. And then, as if that's not bad enough, the worst comes knocking... the what if? What if there's something else out there? Something else that she will respond to.
What if her brain didn't like The Institute program? What if her brain is screaming, "Stem Cells, you idiot! I want stem cells!" What if it prefers a trip to Costa Rica...or Tijuana for them? Maybe her brain will respond if she is amongst people who look more like her. Maybe we can ask some Guatemalans to meet us there. Then your mind really goes off the deep end, and you think maybe you can find her foster family again and they can join you and she will respond to them. Maybe they can speak Spanish to her just like when she was a baby. Oooh I know, simultaneously while she's being injected with those cells....that's it, it just has to work! Or maybe, they should put me in a straight jacket...in a heavily padded room? I don't know, just a fleeting thought. Or, what if Avi's temperamental, little brain is an animal lover like me, and wants to do horse therapy? Or what if it wants Anat Baniel? Yes, Anat. Maybe it would respond to a gentle touch, rather than the rigorous throws of The Institute exercises? No wait, what if her brain wants to go really international for therapy? Russia. Really brain? Geez. You really are high maintenance, aren't you?!? Or what if Avi's brain is superficial and shallow and is trying to use us for a free trip to the Napa Center in L.A. Maybe it's trying to escape to spy on the celebs?
Who really knows? I can't figure it out. Your guess is as good as mine. If all these super smart scientists can't unravel the mystery, how the heck am I to?
And just like that, you quite suddenly identify with all those other parents you saw. You find yourself on the computer, night after night, at 3 am doing late night...into the wee hours of morning searches, and understand the chase of therapy after therapy. You quickly become one of them.
But the truth of the matter is...you always go back, back to your gut, and you know...her brain is just too hurt? And we know the truth, it is. It's just the cold.hard.fact. After a year on the program, I dragged it out of our advocate. Do you remember? The bottom 5%. The worst 5% they have worked with. The bottom of the barrel. Our kid...just too hurt. We heard it from the doctors, and that is to be expected, but once I heard it from them...I knew for sure. I mean, I felt it in my heart after six months on the program, but to actually hear it...that's a different story. I'm seeing a pattern here, are you? So if that's the case, and as always, we are just banging our heads against a wall, just running up hill and in circles, what do we do?
We contemplated it all and almost acted on much, but after what Dave said that night over the suds in a bucket, okay we don't wash our dishes quite like that...but after that, we might ride the horse, but only because Aviana might like it.
From here on out, we are being guided solely in the direction of what makes her happy, and what keeps her body in good, working order. That doesn't mean in good recovering order, this means in our best efforts of avoiding deterioration. And this was what lead us to our decision on starting her in school, and other things I am still trying to tell you : )
Dave is my brain. He keeps me grounded and logical. I had kind of a false sense of her exact longevity. I never thought it was going to be truly long, but definitely longer. As you know, we both learned otherwise with her recent unexpected trip in the hospital.
I definitely needed to hear, out loud, what Dave had to say that one night. As hard as it was, he knew I needed to hear it. Those words have actually put our family on the perfect path. I couldn't have realized it at the time, but they have set us free, and I thank him for that!
Thursday, July 5, 2012
Eleven
Dave and I celebrated 11 years last weekend. We had the best day. We decided to take a drive to Point Reyes for the day.
But first we started of asking Natalie to take this picture of us first.
This was on our drive down, at very high speeds on the freeway!
Right when we got there, we stopped at a bakery to see if they had pie. It was on the menu, but they didn't have any that particular day. There was this really neat shop next door though.
We had lunch down here at Drake's Beach. As you can see it was beautiful.
More beach please : )
I was in heaven as I had no idea we were going to the Dairy Cow Capital of the World! They were everywhere and I was in cow heaven!
I screamed so loud right about here, because as we got close to the Lighthouse, these cows were actually free roaming. You heard me, FREE! Roaming free! As in, no fences.
This was the highlight of my entire trip!
Oh my!
Ok, as if free roaming cows didn't make me lose my mind. We were walking to the Lighthouse and we looked up and this little sweetheart was gazing out. She was one of the most beautiful sights I had ever laid eyes on in my entire life. I thought I had died and gone to heaven.
I found it very difficult to peel myself away from her, but we were pressed for time as the Lighthouse was soon to close. On our way out, she was laying down in the very same place.
My heart was happy.
Cows, deer, it doesn't get any better for me...nothing could top these moments.
It was foggy and overcast, just the way we like it : )
Hi Hodder!
Hi Horn!
There were so many old barns on our drive. We drove home through Petaluma and Napa. I was snapping pictures at very high speeds, hence the chopped off top ; )
Once we got to Petaluma, there was a Farmers Market that was closing down for the day. We decided to stop anyway. Thank goodness we did, as fate would step in and introduce us to a farmer who has a ranch really close to us. We have been looking for a farmer to purchase fruit directly from in order to cut out the middle man for all of our fruit pies : )
We drove back, and went out for a nice dinner. We then went and saw Ted, a nice romantic (wink, wink) movie to close out our 11th anniversary.
We had an amazing day and night.
Thanks for joining us in storybook form!
And...
Thanks for joining us in storybook form!
And...
Thank you Natalie for watching our girls for 14+ hours!!
❤
Fourth...Outtakes
We ended up going out to dinner on the Fourth. We were a very patriotic looking family. I actually was wearing an outfit almost identical to Aviana's (sans glittery butterfly), but changed my shirt to white for fear she would give me stinky eyes all throughout dinner for dressing like her again!
After dinner, I wanted to get some pictures of her and Dave. They both weren't too wild about the idea.
Dave imitating Aviana.
By this picture. I finally told Dave about his plastic smile, and asked him if he could give me a real one.
This was what I got, the middle finger ; ) And apparently Aviana was on the very same page, because suddenly she got really into the photo shoot too!
Ha, Ha, Ha
Wait...should I be laughing at Mommy? She takes care of me, and feeds me all day long...
Oh hell yeah I should be laughing at Mommy, she's crazy! And sometimes, she shoves that food in my mouth....
Don't they just look thrilled with themselves?
Wednesday, July 4, 2012
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:
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 : )
Monday, July 2, 2012
Backwoods
Initially, I sat down to tell you the most simplistic thing, but what I found is this basic thing has unexpectedly taken me backtracking into the very backwoods forest of my mind.
Sometimes, as I'm running through the woods, it's a fun, reflective adventure. The path is smooth, and I can run straight through ~ the words flow like nothing. But sometimes, the trees are downed, the brush is overwhelmingly thick and the branches are scattered about. What I have found is - they created an obstacle course too great for me to overcome.
Each time I've sat down to write since that smoother terrain, I tend to follow the very same course. I begin to think, to type, and then smack I hit a rock and tumble head over heels.
As I stand back up, dust myself off, and keep going - I begin to feel as though my head's between two giant boulders. With each new paragraph, I can no longer deny the pain; there are definitely some wild animals, pushing against in opposition, with all their might. As the tears flow down my face, and the headache stretches across my forehead, it becomes all too much to bear, and I am forced to stop.
As I stand back up, dust myself off, and keep going - I begin to feel as though my head's between two giant boulders. With each new paragraph, I can no longer deny the pain; there are definitely some wild animals, pushing against in opposition, with all their might. As the tears flow down my face, and the headache stretches across my forehead, it becomes all too much to bear, and I am forced to stop.
I happen to be one of these all too persistent people though, so I pace my way across the ground floor and try again. With my head throbbing, I look around and try to find my way once more. I am clearly lost though. By now it's dark, and I have no idea where I am. I haven't a clue, but I can smell blood, so I know bad things have happened here. I find myself searching through, trying to find some sort of semblance, rifling through the debris, but it's useless, futile. I can't make any sense of it. I then grow too tired; tired of battling the brush, so I stop.
I will be back, I return everyday. I know I will get there. I'm not sure how many trips it will take, or pieces I will pull, or how much will be left, but I'll get there. For now, I know I must leave.
I then step outside of myself and laugh. All I wanted to tell was some simple, realization I had. A good, overall appreciative realization. One that hit me up side the head like a ton of bricks, but yet it suddenly, and quite seemingly out of the blue required all this backstory...how very strange?
I didn't realize I had to dig through the depths of the forest to talk about it. I suppose I didn't, but I guess in thinking about it, I realized I wouldn't be explaining in its entirety.
So instead, I posted pie pictures, puppy pics, and Aviana, everyone wants to see Aviana, right?
I didn't realize I had to dig through the depths of the forest to talk about it. I suppose I didn't, but I guess in thinking about it, I realized I wouldn't be explaining in its entirety.
So instead, I posted pie pictures, puppy pics, and Aviana, everyone wants to see Aviana, right?
There you have it, the life of a looney tune : )
Saturday, June 30, 2012
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