In Better Hands

I had heard this song a month ago and had stored it away with high hopes of posting it after I got a surgery date. But you see ~ I have come to realize, in light of the fact that my last appointment didn't go as I had planned, that I have been in better hands all along. I keep looking for someone to swoop in and take care of my brain and maybe I should change my focus ~ No matter how little I may understand the path that I am on ~ it's just where I need to be ~ nothing more, nothing less.

The Carter Family was on Extreme Makeover tonight ~ I was very pleased with how they told their story. They even snuck a picture of the brilliant surgeons at the Chiari Institute. If you missed it, you can go to the full episode player on the ABC website and watch it. I loved that the design team focused on the dreams of the family members and honored their love for music. Something I have realized in battling with Chiari on a daily basis is that I have to keep focusing on my dreams or the waves that my brain tail creates will overwhelm me.

Something that Julie Carter has been able to do is to is to help people find answers about Chiari and offer emotional support. She claims that she is somewhat obsessed with Chiari ~ in this case ~ he obsession has been turned into passion. Here is her testimonial and that of her daughter, Jade . I know that ever since I found out about my brain tail I have been obsessed with finding out all the info that I can about my condition. I love research and there is so much to learn about Chiari ~ the possibilities are endless. With that being said, I have a site meter on my blog ~ I installed it in July of this year ~ and I have been floored by the number of people reading my blog ~ Seriously ~ I probably only actually know a handful of you. I never imagined that people on the other side of the world would read about my life.

So ~ to my readers out there in the universe ~ I pray that you are finding some answers by reading about my Chiari journey and hopefully finding some inspiration ~ some thread of hope. Only a few of you have left comments on my blog ~ please don't be shy ~ I would love to hear from some more of you.

In Better Hands - Natalie Grant

It's hard to stand on shifting sand
It's hard to shine in the shadows of the night
You can't be free if you don't reach for help
You cant love if you don't love yourself

There is hope when my faith runs out
Cause I'm in better hands now

It's like the sun is shining when the rain is pouring down
It's like my soul is flying though my feet are on the ground
So take this heart of mine there's no doubt
I'm in better hands now

I am strong all because of you
I stand in awe of every mountain that you move
Oh I am changed, yesterday is gone
I am safe from this moment on

There's no fear when the night comes 'round
I'm in better hands now

It's like the sun is shining when the rain is pouring down
It's like my soul is flying though my feet are on the ground
So take this heart of mine there's no doubt
I'm in better hands now

It's like the sun is shining when the rain is pouring down
It's like my soul is flying though my feet are on the ground
Its like the world is silent though I know it isnt true
Its like the breath of Jesus is right here in this room

So take this heart of mine there's no doubt
I'm in better hands now
I'm in better hands now

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!

One Step Closer

I don't even know where to begin ~ The picture above says it all ~ My visit with surgeon #5 didn't go as I planned in my mind ~ but then again ~ who am I trying to kid ~ this is me we are talking about. If the shortest distance between two lines is a straight line ~ my route has been the polar opposite of short and straight!

I don't want to bore you with all the details ~ so I will try to sum up what happened yesterday. With my mom and husband in tow ~ after waiting for over an hour past my appointment time ~ I met surgeon #5. Mine was the last appointment before his lunch break ~ he looked tired and weary. I tried to sum up what has been going on with me since my Chiari discovery ~ he was tough ~ I stood my ground ~ basically he agreed that I have a significant Chiari malformation and I would definitely benefit from surgery ~ however ~ the other diagnosis that TCI gave me ~ he wants to debunk all of them.

As he was talking and it was clear that we weren't on the same page ~ he even lauded surgeon #4 (the Godfather)! I felt a sinking feeling in the pit of my stomach. I fought the waves of emotion coming over me ~ I felt as if I was stuck in a revolving door ~ going around and around with no exit in sight! Then ~ I heard a small, still voice voice within myself ~

"This is all as it is supposed to be ~ stay strong ~ hold your ground ~ I will carry you."

So ~ is summation ~ the next step is to get medical ~ concrete evidence that I do in fact have ehlers danlos. I am trying to schedule an appointment with a rheumatologist ~ apparently they should be able to do some kind of skin test confirming EDS. I am 99.9% certain that I do have EDS ~ I have all the signs. If there is a silver lining in here somewhere ~ when I test positive for EDS ~ then surgeon #5 will write a letter recommending that I absolutely go to TCI for surgery ~ they are best equipped to deal with stability issues. This all takes me one step closer ~

One Step Closer ~ U2

I'm 'round the corner from anything that's real
I'm across the road from hope
I'm under the bridge in a rip tide
That's taken everything I call my own

One step closer to knowing
One step closer to knowing

I'm on an island in a busy intersection
I can't go forward now I can't turn back
Can't see the future
It's getting away from me
I just watch the tail lights glowing

One step closer to knowing
One step closer to knowing
One step closer to knowing
Knowing, knowing

I'm hanging out to dry
With my old clothes
Finger still red with the prick of an old rose
Well the heart that hurts
Is a heart that beats
Can you hear the drummer slowing?

One step closer to knowing
One step closer to knowing
One step closer to knowing
To knowing

One step closer to knowing
One step closer to knowing
One step closer to knowing
To knowing, to knowing

Up To The Mountain

Today is the day ~ driving into work this morning the streets were shrouded by an early morning fog. The imagery mirrors my path ~ veiled in fog with street lamps along the way to keep me on the path. At this point, I don't know quite what to expect as I prepare to meet surgeon #5 ~ I just want him to take action ~ hear me out ~ schedule surgery ~ let's get the show on the road already!

My sister made me a birthday CD mix last week ~ this song instantly brought tears to my eyes ~ it echoes my journey ~ plodding up the mountain ~ the journey is hard ~ but with perseverance I will reap the benefits of the breathtaking view on the summit. It reminds me that I am not alone ~ some days are harder than others ~ but my friends and family give me the strength and courage to keep going. I first heard this song when Kelly Clarkson sang it ~ both versions are beautiful ~

Up To The Mountain ~ Patty Griffin

I went up to the mountain
Because you asked me to
Up over the clouds
Where the sky was blue
I could see all around me
Every, Everywhere
I could see all around me
Everywhere

Sometimes I feel like
I've never been nothing but tired
And I'll be working
Till the day I expire
Sometimes I lay down
No more can I do
But then I go on again
Because you asked me to

Some days I look down
Afraid, afraid I will fall
And though the sun shines
I see nothing at all
Then I hear your sweet voice
Come and then go
Telling me softly
You love me so

I've Been Invited to Believe the Unbelievable

I was blindsided by the lyrics of this song last night as I drove home from my meeting at church. This song came out around the time we made the pilgrimage across the country to put roots down in New York. How easy it is for me to forget how awesome my God is ~ He does the unbelievable ~ the inconceivable!! I am deeply humbled and grasp at finding a better perspective on my situation. A lot is riding on my appointment with surgeon #5 tomorrow!

A blanket of peace has covered me ~ I have already been spoken for ~ my mission here on earth is in it's infancy ~ there is much more to be done. So, whatever may come, I have peace that all is as it is supposed to be.

Great Expectations ~ Steven Curtis Chapman

The morning finds me here at heaven's door
A place I've been so many times before
Familiar thoughts and phrases start to flow
And carry me to places that I know so well
But dare I go where I don't understand
And do I dare remember where I am
I stand before the great eternal throne
The one that God Himself is seated on
And I, I've been invited as a son
Oh I, I've been invited to come and...

Believe the unbelievable
Receive the inconceivable
And see beyond my wildest imagination
Lord, I come with great expectations

So wake the hope that slumbers in my soul
Stir the fire inside and make it glow
I'm trusting in a love that has no end
The Savior of this world has called me friend
And I, I've been invited with the Son
Oh I, I've been invited to come and...

We've been invited with the Son
And we've been invited to come and...

Believe the unbelievable
Receive the inconceivable
And see beyond our wildest imagination
Lord, we come with great expectations

Time That Is Given To You

Frodo: "I wish the ring had never come to me. I wish none of this had happened."
Gandalf: "So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us. There are other forces at work in this world Frodo, besides the will of evil. Bilbo was meant to find the Ring. In which case, you were also meant to have it. And that is an encouraging thought." ~ LOTR

"The world is changed. I feel it in the water. I feel it in the earth. I smell it in the air." Galadriel ~ LOTR

Take out the word 'ring' and replace it with 'brain tail' ~ I wish I malformation was ~ I wish I wasn't burdened with filling out wills and signing health care didn't even know what a chiari malformation was! Wish I wasn't dealing with filling out my will and health proxy's ~ but it's my life ~ like it or not. Somehow ~ the quote above is encouraging ~ I was meant to have it ~ I have enough strength to bear the load ~ to be able to stand up underneath the weight of the burden.


In the same breath ~ I know in my heart that a time of healing is just on the horizon.

He Will Carry Me

Hold tight ~ when all hope is gone ~ he is all the strength that I will ever need ~ He will carry me ~

I call, You hear me
I've lost it all
And it's more then I can bear
I feel so empty

You're strong, I'm weary
I'm holding on
But I feel like giving in
But still You're with me

(Pre-chorus and Chorus)
And even though I'm walking
Through the valley of the shadow
I will hold tight to the hand of Him
Whose love will comfort me
And when all hope is gone
And I've been wounded in the battle
He is all the strength that I will ever need
He will carry me

I know I'm broken
But You alone
Can mend this heart of mine
You're always with me

And even though I'm walking
Through the valley of the shadow
I will hold tight to the hand of Him
Whose love will comfort me
And when all hope is gone
And I've been wounded in the battle
He is all the strength that I will ever need
He will carry me
He will carry me

(Bridge)
And even though I feel so lonely
Like I have never been before
You never said it would be easy
But You said You'd see me through the storm

And even though I'm walking
Through the valley of the shadow
I will hold tight to the hand of Him
Whose love will comfort me
And when all hope is gone
And I've been wounded in the battle
He is all the strength that I will ever need
He will carry me
He will carry me
He will carry me

I'm Trying To Find It

My youngest daughter's birthday was yesterday. Since things have been super busy around our house, I had waited until the last possible moment to purchase her gift. So ~ I had a two hour window between dropping her off at cheer practice and picking her up. Time was of the essence.

Apparently these little fur balls are the latest craze ~ on E-Bay there were 91 items listed! I went to three stores ~ no Fur Berries in site. I was quickly running out of time ~ I was going to have to break down and actually talk with someone at the Customer Service desk as Toys R Us. I was desperate ~ they heard my plea for help ~ One of the employees scoured the store and came back with the one, lone fur berry left in the store. I was saved ~ I had found what I was looking for and the look on my child's face when she opened the gift was priceless! BTW ~ since the guy that found the toy was Phil ~ we named the Fur Berry 'Phil', too. Awe ~

Not only was this a successful mission, I discovered that even though my brain is falling out of my head, I can still drive at night and find where I am going. All it takes is some time and a lot of turning around. You see, I can't see that well at night ~ I am hoping that after my decompression my vision will improve. So driving at night, looking for a store with a vague address can be a total setup for a stressful event.

But ~ I had a mission and tried to stay focused. The more I drove around ~ looking for the toy store, the more turned around I became. I would pass the street I should have turned on, so I would take a left, turn around and then turn left again instead of right ~ talk about short term memory! I just had to laugh at myself and pat myself on the back for being out there to begin with.

So ~ note to self ~ next time ~ let someone else drive!

Stuck

In a world where there is a lot of bad things in the news, I frequently read the Wonderful News headlines. This one in particular ticked my funny bone and reminded me of my brain tail. Pepe Le Pew has stuck his head in a mayonnaise jar and can't get it out (this isn't the first time that containers have been deemed as not 'skunk friendly') ~ same story with my brain tail dawdling too long in my spinal cord.

Here is some random trivia that I have learned about this week ~ proof that even though my brain is falling out of my head, I am still learning stuff! Do you know which side of the car that your gas tank is on? Save yourself some embarrassment next time you borrow someones Jeep or drive a rental car. You see that little arrow next to the gas tank picture? That's which side your gas tank is on. True Story!

OK ~ I am a Native Texan ~ I know a lot about Texas history ~ but when it comes to NY ~ I am no so savvy. So ~ Columbus Day was on Monday ~ schools were closed, as was the Italian Bakery across the street from my office. Why, you ask? I'll tell ya ~ it was Columbus Day! If you are a Texan, you are probably shaking your head, WHAT? I don't get it! That was me ~ until my co-workers (sorry ~ I just couldn't resist sticking that awesome link in there ~ my co-workers are brilliant and we all have a really sick sense of humor ~ that image just makes me laugh!) got me up to speed on my NY history. Chris Columbus was Italian ~ of course ~ now I understand!

Who knew that a bear (click the link for the whole story) could sleep under a bridge? This not so little fella was scared by the oncoming cars on the bridge and fell ~ only to catch himself and crawl to the safety of the ledge underneath the bridge. After all was said and done, he was lowered down to safety in a net.

In the Mountains Again

Last week I had the chance to steal away with my husband and celebrate our anniversary early. We had most of the day to wander around the Adirondack wilderness. I don't know what it is about being up in the high peaks region, but I can't help myself ~ my feet want to wander into the mountains.

So ~ keeping in mind that I had vertigo, I tested myself to see if I could still climb. I took my time ~ enjoyed the beauty of the fall foliage ~ hugged a tree every now and then ~ talked to the brother rocks and sister trees. The view from the top was incredible and so peaceful. My experience that afternoon confirmed what I had already decided in my mind ~ I simply can't live life without being able to climb again ~ surgery will put me on the path again to climbing all 46 high peaks. I have a goal.

We took some neat pictures while on the hike and I will post some soon, but in the meanwhile, I found this link of someone who climbed the same mountain later that week ~ enjoy.