Survivor

What does it mean to be a survivor?

noun ~ one who lives through affliction
verb ~ to remain alive; to carry on despite hardships or trauma; persevere; to live; persist; to cope with a trauma or setback; to outlive

Considering the definitions above it's safe to say that I am a survivor. I can add 'spinal detethering survivor' to my growing list. But wait ~ since I have avoided brain surgery does that make me a 'brain surgery survivor?' Those of you who have had brain decompression probably totally don't agree with me at all ~ and I totally understand where you are coming from. It's a right of passage!

The old survivor guilt feeling is creeping back again ~ I know ~ it sounds narcissistic ~ but I know this feeling. I felt it when my brother died when I was two years old. Why was I left here on earth to live and he died? Then again I felt cheated when my labor/delivery of my first child ended in an emergency c-section to save both of our lives ~ again ~ I survived a near death experience ~ but felt cheated out of going through the whole natural child birth experience. That's a HUGE right of passage ~ I was up for the challenge ~ but God had other plans for me.

This brings me to today ~ it's been exactly one month since my spinal detethering. They knocked me out ~ opened up my back ~ exposed my spinal cord ~ detethered me ~ then I woke up. Alive ~ survived ~ again. I spent 17 months preparing myself for the decompression brain surgery that was scheduled for March 7, 2008. I was ready to hunker down and just muster through it all. Then ~ all of the sudden ~ my surgery has been canceled and I don't have any more Chiari symptoms! Just because I don't feel the effects of my dear brain tail doesn't mean it's gone ~ it's still there, but now it's fully hydrated and happy. My brain tail has received a last minute stay of execution from a call from the governor ~ so the brain tail has survived a near cauterization! Survivor

You can dismiss my post as the rambings of a fully hydrated brain tail ~ me, I am pondering my responsibilities as a survivor and how I can give back others who are going through hardships and trials.

Miracle of the Moment

I woke up this morning to the all familiar stupor of greeting a new day after a night filled with restless sleep. As soon as I rolled out of bed and my feet hit the floor I could tell that my legs were betraying me already. The floor felt like it was moving beneath me and I struggled with my legs as my brain was commanding them to walk. Despite these symptoms, I was in a fairly good mood and was looking forward to my appointment with the genealogist this afternoon.

At about 8:30 this morning I got a call at work from a representative in the appeals department at the insurance company. She was speaking in hushed tones ~ she told me that they had received my appeals information and have thoroughly reviewed it before passing it along to the medical director. Then what she told me just blew me away ~ she told me that the medical director had approved BOTH surgeries at TCI!!!! BOTH ~ both the tethered cord and the brain decompression. I couldn't believe what I was hearing ~ then I started to cry ~ tears of joy, relief, thankfulness! God hear our prayers ~ and answered them ~ The funny thing is that the medical director's decision was probably already made by close of business on Friday.

When the woman on the other end of the phone heard me crying she told me to hold off, because she wanted to get through what she needed to tell me and wanted to get off the phone before she too started to cry. Obviously, I am very humbled by the news and I think the shock of it all hasn't worn off, either. To solidify my good news ~ I got clinical confirmation from the geneticist that I do indeed have Ehlers Danlos and I had blood work done to see if we can pinpoint which type I have. God is awesome!

Miracles still happen today ~

It's time for letting go
All of our "if onlies"
Cause we don't have a time machine

And even if we did
Would we really want to use it
Would we really want to go change everything

Cause we are who and where and what we are for now
And this is the only moment we can do anything about

So breathe it in and breathe it out
And listen to your heartbeat
There's a wonder in the here and now
It's right there in front of you
And I don't want you to miss the miracle of the moment

There's only One who knows
What's really out there waiting
And all the moments yet to be
And all we need to know
Is He's out there waiting
To Him the future's history

And He has given us a treasure called right now
And this is the only moment we can do anything about

So breathe it in and breathe it out
And listen to your heartbeat
There's a wonder in the here and now
It's right there in front of you
And I don't want you to miss the miracle of the moment

And if it brings you tears
Then taste them as they fall
Let them soften your heart

And if it brings you laughter
Then throw your head back
And let it go
Let it go, yeah
You gotta let it go

And listen to your heartbeat

And breathe it in and breathe it out
And listen to your heartbeat
There's a wonder in the here and now
It's right there in front of you
And I don't want you to miss the miracle of the moment

And breathe it in and breathe it out
And listen to your heartbeat
There's a wonder in the here and now
It's right there in front of you
And I don't want you to miss the miracle of the moment

Proud

Last weekend, both of my daughters competed in a cheerleading competition. In fact, my oldest daughter's team was awarded Grand Champions in their division and they are moving onto the next level ~ Regional Qualifiers in a couple of weeks. With all of drama of my brain tail going on, it has been a blessing and such a breath of fresh air to see the joy in my daughter's eyes as they are triumphing ~ winning!

Go Bison!