Beautiful Mess

Sure, who doesn't embrace smiles and that feeling you get when everything is going your way. Don't you wish everyday could feel that way? For those of us who have chosen the path as the encourager ~ the cheerleader ~ they tell you that you still have enough energy to get to the finish line ~ they pick you up when you can't stand on your own ~ What do we do when we aren't having a good day? Is it ok to sulk and cry? Absolutely!

It's ok to let the Lord know you are having a crummy day ~ of course He already knows how you feel, but I think He gets pleasure out of hearing us share with Him how we feel. When we are weak He give us strength. I heard this song today and these verses really resonated in my heart:

We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah.

A great reminder to me to be in the moment ~ feel what I am feeling ~ and be ok with it. Today, admist vertigo and headaches, I am trying to find a way to rejoice in the fact that I am alive ~ to feel this discomfort is to be human. :)

I Can Only Imagine

Blogging has been a way for me to express what I cannot vocalize and I am trying to get back in the swing of things by blogging more. As my one year post decompression date is beginning to appear just over the horizon I seem to be doing a lot of reflecting. There were a lot of blogs that I started and they ended up in my draft box. This one I actually started on 10/12/07 ~ I thought today would be a good day finally post it.

Facing fear ~ staring it in the face ~ thoughts of death and dying have come up for me, for obvious reasons. But you see, to die would be devastating for my family and friends, but for me, I can only imagine.

When I wrote my thoughts about staring death in the face, I hadn't even been detethered yet ~ but I was processing the imminent fear that comes when facing brain surgery. I look back and smile knowing that putting it all out there, expressing my fear, laying it all down for the Lord to take it from me ~ my fear was totally dissolved by the time I had surgery.



WE all face fear on a daily basis ~ rather it's a fear of spiders or death ~ we all deal with it in different ways. For me, fixing my eyes on eternity put everything in perspective and it's a good reminder for me today. I woke up with a brain tail headache ~ it's the 13th and a Friday today ~ not that I am superstitious, but I am not firing on all cylinders today. Note to self ~ no operating heavy machinery today!

Having One of Those Days

Today was a day when I wanted to cover my eyes and make the world just disappear ~ transporting me to another time and place. Where is that FRINGE elevator anyway? Mondays are hard for most people, but when you heap on an extra helping of stress first thing in the morning it makes getting through the day all the more challenging.

Even with heavy laden shoulders, there were bits and pieces of great news that I received ~ A month after I mailed a package off to a friend doing tribal mission work over seas, the package finally arrived. Must have gone via yak train ~ and the best part was that all the contents arrived with no pilfering. In an age of instant messaging, twittering (still haven't found a need to twitter my life away even though I have had a Twitter account for a year now), texting and emails it's reassuring to know that the postal system still works!  

Also ~ in a day and age when people with extensive medical issues (like me) face mountains of  medical bills to pay and frequent surly letters from insurance companies ~ I actually received a CHECK from my hospital ~ refunding money to me for paying too much ~ SERIOUSLY? So ~ a lil bit of good news has presently lifted my spirits enough to muster up enough strength in my completely drained body to get out there and coach cheerleading for 2 hours tonight.

Determination

Helloooo ~ any blog readers out there? I know I have been taking some time away from the world of blogging ~ I am still alive and thought I would start with a random post to try and jump start my muse again. Surely this picture would inspire at least one reader out there!

Let me introduce you to our latest outside resident ~ have you ever seen such acrobatic skills just for a bite to eat? I have yet to actually witness how this creature gets up to the feeder in the first place. This squirrel didn't get to be so full and fluffy by hanging out in a hole of a tree ~ he's spent some long hard hours thinking outside of the box ~ learning new skills. You should see Captain's reaction when the acrobat show begins. He jumps up on the window sil and stares intently at the squirrel ~ I think he's decided that it's another cat and not categorized as a second breakfast. Hey, he's brown and has a fuzzy tail like him, so it must be a cat, right????

Our Hope Endures

I have been absent in the blogger world and wanted to touch base and let your know what's going on in my little corner of the world. I celebrated my 1 year anniversary since my spinal de-tethering surgery yesterday. Hooray ~ today I went back to work ~ that 2 month 'spa' vacation really flew by fast! I am finding that getting back into the swing of things is like getting to know the characters on LOST again after they have been on a long sabbatical.

People keep asking me how I feel in comparison to before the surgery. It's a tough question to answer, because I felt so bad for at least three years prior to surgery. Now ~ I truly feel like I have been given a fresh start at life ~ I feel more alive than I have for a very long time. Yes, I have rock star neurosurgeons, they did an outstanding job restoring my brain and I owe them my life. However, I know that my faith in God's healing hands and my positive spirit have healed me from the inside out.

I wanted to share some beautiful lyrics I heard last week that continue to haunt my thoughts. I so identify with the lyrics I posted below and the emotions they bring up to the surface. There are so many Chiarians out there who can identify with the constant struggle with chronic pain ~ there seems to be no end to the struggling & the pain, but our hope endures. As for me and my journey, something I am getting more and more comfortable with is taking steps in faith. I know that no matter what comes my way I will have enough hope to endure.

"Our Hope Endures" ~ Natalie Grant

You would think only so much can go wrong

Calamity only strikes once

And you assume this one has suffered her share

Life will be kinder from here

Oh, but sometimes the sun stays hidden for years

Sometimes the sky rains night after night

When will it clear?

But our Hope endures the worst of conditions

It's more than our optimism

Let the earth quake

Our Hope is unchanged

How do we comprehend peace within pain?

Or joy at a good man's wake?

Walk a mile with the woman whose body is racked

With illness, oh how can she laugh?

Oh, 'cause sometimes the sun stays hidden for years

Sometimes the sky rains night after night

When will it clear?

Emmanuel, God is with us

El Shaddai, all sufficient

We never walk alone

Cause when I am weak your strength is complete

It's times like this where I can't find the words to express what I am feeling ~ it's been just all too overwhelming this week. But then I hear a song on the radio and the lyrics seem to speak for me to interpret what's going on in my heart. Something I am learning is that the more things seem to unravel in my life the message that God is sending me becomes clearer. HE continues to provide, continues to sustain me, holds me up, lifts my spirits. I am in awe ~ speechless.

Sufficient - Adie Camp

Hear my heart Lord as I cry out to you

Hear my prayer Lord and carry me through

In your mercy in the promise you made

Be my strength Lord when my strength fades away

Cause when I am weak your strength is complete

It's perfect

Completely all I need

Sufficient for me

Your grace and peace are perfect

Completely all I need

You're all that I need

In my weakness I'm finding your strength

In my sorrow a gentle embrace

Through the seasons of laughter or pain

You are listening When I call out your name

I'll find you when I seek I'll look for you with all of my heart

And I'll find you when I'm weak

Cause you are strong

Hear my heart Lord as I cry out to you

Hear my prayer Lord and carry my through

Carry me through

Say

I recently saw the movie ~ The Bucket List. John Mayer wrote a song for the movie, SAY. The song is catchy, but the lyrics have stuck with me ~ playing over and over in my mind. With the arrival of summertime and the unstable weather that has descended upon NY, the return of my headaches is a constant reminder that life is short and not a minute should be wasted.

I often find my mind wandering back in time ~ thinking about roads I wish I would have gone down ~ made different choices ~ wish I had taken more chances and said what was on my heart. I know that there are books ~ volumes of books stored up in my mind of things I wish I had said and didn't. But now ~ since the birth of this blog and the connections with people I have made through my ramblings here ~ I find myself sharing more and more of myself ~ speaking from my heart. I can't help it ~ life is too short not to connect on a heart level.

So, with that said, I encourage you to say what you need to say ~ heal broken relationships ~ muster up the courage and let your heart speak for you.

SAY ~ John Mayer

Take out of your wasted honor

Every little past frustration

Take all of your so called problems

Better put them in quotations

Say what you need to say (8x)

Walking like a one man army

Fighting with the shadows in your head

Living out the same old moment

Knowing you'd be better off instead

If you could only Say what you need to say (8x)

Have no fear for giving in

Have no fear for giving over

You better know that in the end its better to say too much

Than to never to say what you need to say again

Even if your hands are shaking

And your faith is broken

Even as the eyes are closing

Do it with a heart wide open Why?

Say what you need to say (25x)

The Great Outdoors

This past weekend we all went on a hike in Woodstock, NY ~ in the Catskills Mountains. When I picked our hike location I knew it would be a bit of a challenge for the girls (5 miles round trip), but there's no time like the present to get them accustomed to longer, more challenging hikes. We chose to hike Overlook Mountain ~ one of the big perks of the hike is that about halfway up the mountain you will encounter the Mountain House ruins.

The Mountain House opened in 1871 and could accommodate about 300 guests back in the day. The hotel ruins are located at 2,920' ~ here's a link of photos someone has snapped on a foggy day up on the mountain. Apparently the hotel burned down twice ~ rebuilt ~ then fell prey to the stock market crash. in the 1920's.

We couldn't have picked a more perfect day for a walk in the woods. The temps were in the mid 60's with sun peaking out from behind the clouds now and again. We all made it to the summit and enjoyed some amazing views ~ and a yummy lunch. After we were refueled, Skyler proceeded to skip down the mountain with her walking stick ~ leading us the whole way down to the trail head.

I know ~ some of you are probably rolling your eyes and yelling at me for going on a 5 mile hike not even four months after my detethering ~ but truthfully ~ the adrenaline is the best drug out there. I have been plagued with headaches and neck pain for a couple of weeks straight now ~ it's really breaking me down again. But ~ that said~ my focus in on getting stronger ~ living stronger. The sermon in church yesterday was speaking directly to me ~ again ~ wait on God and his direction for your life ~ oi! Why is that so hard to do?

Steve and Me

I just read Steve and Me by Terri Irwin. You can click on this link and read an excerpt. Reading about their love story and their life together was neat. Steve received all kinds of negative media and I believe that he was greatly misunderstood.

While I was reading about all the stories I could visually see them as I remembered episodes of the Crocodile Hunter. What an amazing, passionate man who did amazing things to educate people about wildlife preservation. When I got to the point in the book where Terri received news of his death I felt sad all over again like he had just passed away.

Now that Steve has passed along his family continues to be wildlife warriors. There is still so much going on at the Australia Zoo ~ Steve's exuberance lives on in those who loved him.

Number of Breaths

The calendar reads ~ April 1, 2008 ~ clearly mother nature is trying to fool me into thinking that springtime has officially arrived. The weather forecast today in the paper read ~ high of 63 degrees ~ so I gleefully put on some shorts and a short sleeve shirt, tied my sneakers, and threw on an anorak just for good measure. I headed down to the trail by the river and set out on a long walk.

The air was thick with humidity, there was a stiff breeze blowing off the river, my legs felt strong and my gait was quick. So this is what it feels like to feel 'alive'! It's been so long since I have felt this way ~ I finally feel like I am coming back to life. Chiari had really pulled me down to the deep dark pit and I didn't think I would ever be returning to the land of the living. But ~ here I am ~ living, breathing, pain free except for an occasional low pressure headache. Time heals all wounds ~ I am living proof. So for today ~ I am incredibly encouraged and hopeful.

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.

Clear Path

One of the great wonders of life is that things are never as they appear ~ always in motion ~ constantly morphing into something else. The oceans are the greatest example of the never ceasing thundering motion of the waves. I have drawn great strength and comfort from a handful of songs over the past year and a half. They have been there on the radio like a loyal friend, just when I needed them ~ audibly expressing what I am feeling. Through their steadfast consistency ~ the meaning of the songs have new meaning to me. "I will go through the valley if you want me to..." Maybe it's me that is maturing in my faith ~ in my understanding of WHY I am here on this path ~ this bumpy, dark, twisted and beautiful path through the valley ~ me and my Chiari brain tail.

Ever since I was a little girl ~ that awful day that shook me to the core ~ watching my brother get kicked in the head by a horse ~ watching his spirit leave his body ~ I knew then and there that life was precious and easily taken away. In the same breath, I knew that there was no way I could carry on without drawing strength from Jesus. I also knew that God had big plans for me ~ that He wasn't through with me yet. Throughout life ~ again and again ~ I have been through many hard times ~ struggles; however, there have been a lot of wonderful and happy moments, too! All my life I have wanted to go to Africa and do mission work ~ hopefully some day I will make it there ~ but for now ~ I am here ~ on this path.

As my surgery dates have drawn closer I have had some amazing re-connections with old friends and have made some new ones. If it weren't for my brain tail I would have never met such amazing people who have been blessed with a brain too big for their head. There is no doubt in my mind that God has been present through all of this journey thus far and will continue to walk with me. For those of you who have reached out to me, know that you are all near and dear to my heart ~ kindred souls ~ we will get through this ~ and my wish for you is that you will feel an overwhelming spiritual presence through this journey ~ a peace that passes all understanding ~ a feeling in your heart that you are not alone in this journey!

If You Want Me To ~ Ginny Owens

The pathway is broken
And the signs are unclear
And I don’t know the reason why you brought me here
But just because You love me the way that You do
I will go through the valley If You want me to

CHORUS: Now I'm not who I was When I took my first step
And I'm clinging to the promise You're not through with me yet
So if all of these trials bring me closer to You
I will go through the fire
If You want me to

It may not be the way I would have chosen
When you lead me through a world that's not my own
But You never said it would be easy
You only said I'll never go alone
So when the whole world turns against me
And I'm all by myself And I can't hear
You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the valley
If You want me to

Taking Things A Little Too Literal

My brain tail has caused me to take things too literally lately. True story!!!

Just keep swimming, just keep swimming, just keep swimming, swimming, swimming. What do we do? We swim, swim, swim.

Since it has become pretty much impossible for me to run anymore without my legs going numb I have taken the plunge and fully embraced swimming again. I was on the swim team as a child up until I was in eighth grade. I occasionally won ribbons at swim meets, but I wasn't an all-star swimmer by any means. Honestly, I never felt completely committed or passionate about swimming, ever, but since I can't do much of anything else now I am finding a new found love in swimming.

I have about 24 days left of brain tail training ~ how, you ask, do you train a brain tail??? It's all about strengthening the mind, endurance, push past the point where you want to throw in the towel and quit. I know that recovery is not going to be easy, but will feel encouraged, hopeful and strong if I have tested my mind and know that I have the power to push through when the going gets tough. Swimming has proven to be the perfect training tool available to me right now.

I swam a mile last Friday and the hardest task wasn't having enough energy in the water, but rather keeping track of how many laps I had completed. Since brain surgery has brought to the surface a profound need to do a mini 'life review', I found a neat way to keep track of the laps. With each lap number, I would think about what I was doing at age 10, 11, 12...16, 17, 18...23, 24, 25... I was lost in a swirl of memories and wasn't really thinking about how long I was swimming and the time just flew by.

So, what's a girl to do while she is counting down the days until brain surgery ~ just keep swimming.

PS ~ Thanks Mom and Dad for encouraging me to stay on the swim team even though I cried all the way across the pool at my first swim meet when I was six. It would have been so easy to quit back then, but with your love and encouragement I learned how to keep going. Who knew that moment result in many years of swim team, life guarding and me teaching others how to swim!

The Power of the Butterfly

Since I am having a hard time walking without falling over walking on the treadmill has been out of the question. So in an attempt to hold onto the smallest ounce of sanity in my life I have started swimming again. We are members of a family health club that has an awesome heated indoor pool and it's been a pleasant surprise that my brain tail allows me to swim.

Ever since I was a little girl I have loved the water. I have come a long way from swimming for the Briargrove Barracudas at age six. When I was a teenager I lifeguarded and taught swim lessons. There is something incredibly satisfying about working with a child who is terrified of the water and to watch them fall in love with swimming!

For most people, swimming translates to putting on your bathing suit and bobbing up and down in the water. Not me, I can't get into a body of water without breaking out in a full fledged racing butterfly stroke ~ I just can't help myself! Muscle memory is a powerful thing ~ I don't know if I will ever completely understand it ~ but I love swimming the butterfly stroke and it's permanently emblazoned in my memory. It is probably the most complicated and physically demanding stroke to swim.

My shoulders have always been semi double jointed and swimming butterfly

feels so good to me. Probably thanks to Ehlers Danlos I have a greater range of motion. So ~ for now ~ I am happy that I can workout and feel strong and healthy if for at least a little while.

Dream It Anyway

God is great but sometimes life ain't good ~

I am reading a book (The Climb of My Life ~ Kelly Perkins) right now about a woman who had a heart transplant at age 35! She went from being a vibrant, athletic young woman to a patient waiting for a new heart in a blink of an eye. At some point in time while she was waiting for a new heart she looked at herself in the mirror ~ really looked at herself and when she did, she had to grab the bathroom counter to steady herself.

She hardly recognized the reflection in the mirror! The most shocking thing that she noticed was that her smile had been broken and she knew in that moment that she desperately wanted it back! Her lost smile and dreams helped fuel her forward to recovery.

Dreams are powerful and not to be taken lightly. I have to constantly remind myself of this as I wait for my new "head space".

Anyway ~ Martina McBride

You Can Spend Your Whole Life Buildin'
Somethin' From Nothin'
One Storm Can Come And Blow It All Away
Build It Anyway

You Can Chase A Dream
That Seems So Out Of Reach
And You Know It Might Not Ever Come Your Way
Dream It Anyway

[chorus]
God Id Great, But Sometimes Life Ain't Good
When I Pray It Doesn't Always Turn Out Like I Think It Should
But I Do It Anyway
I Do It Anyway

This Worlds Gone Crazy And It's Hard To Believe
That Tomorrow Will Be Better Than Today
Believe It Anyway
You Can Love Someone With All Your Heart
For All The Right Reasons
An In A Moment They Can Choose To Walk Away
Love 'em Anyway

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

Baby Brain

My blog buddy Queli has finally had her surgery at TCI this week and she has begun the long road to recovery. My prayers go out to her ~ she has finally found resolution in having the surgery. Prayers have been answered ~ all it took was a ginormous leap of faith! Like others who have gone on ahead of me on this winding Chiari road ~ she is an inspiration to me and she continues to cheer me on in my journey.

Now it's time that she baby her noggin and get a month or two of some good old fashion rest and relaxation. Attawaytogo Queli ~

TEX ROBERTSON ~ May His Zeal For Life Live On

Tex Robertson 1909-2007 ~ passed away yesterday. I just got word of his passing late this afternoon. I am awestruck by the outpouring of love to Tex and his family that he has left behind. The man has touched millions of lives and made them smile. I am thankful that his passing happened after all of the camp terms were complete ~ what a blessing. There is a memorial service for Tex being held at Camp Longhorn this Saturday afternoon ~ if I didn't live so far away I would be there in a heartbeat. The gathering will be of thousands ~ I am sure ~ for just the population of campers, counselors and alumni alone could fill up Inks Lake Camp.

I posted earlier in the year a post about Camp Longhorn ~ without camp I would be a completely different person ~ seriously. Tex Robertson set the tone for camp more than 65 years ago (1939)~ celebrate life ~ today is a great day and I feel great! ~ life is punny ~ a positive attitude is contagious ~ friends made at camp are friends for life ~ make the best of every situation life throws you ~ Camp Longhorn is a timeless place ~ a place where everybody is somebody ~ a place I call home.

Tex has given so much of himself to the campers and counselors at CLH ~ he knew each and every one of us by name. I will remember him forever ~ especially the time he came to campfire as Dr. Schwartz ~ he drove the station wagon right into the campfire stage ~ then proceeded to get bitten several times by the snakes he was handling ~ he was bleeding all over the place but didn't even notice because he was having so much fun. Tex, may your joy and zeal for life carry on in those whose lives you touched. We will miss you ~

Here are some of the articles posted about Tex:
Tex
Former Texas Swim Coach Tex Robertson Dies At the Age of 98
Tex tribute on Camp Longhorn Site
Former Men's Swimming and Diving Coach passes way
Tex Robertson, camp founder and ex-swim coach, dies


Associated Press quoted Governor Rick Perry as saying: "Tex Robertson was a Texas original whose personal integrity and commitment to children touched countless lives. His legacy will live on in the hearts of thousands of campers and counsellors who were forever impacted by their time at Camp Longhorn."


"... making friends for the world to see...if your friends are there everything is all right.."

Brain In Training

I have been given pretty strict orders from my neuro surgeon to hang up my running shoes ~ but of course, anyone who knows me knows that it's not a good idea to tell me that I can't do something. So I have listened to my docs advice ~ OK ~ I hear you ~ put aside any dreams of competing in a marathon or triathlon any time soon ~ I can do that. But cease running altogether ~ seriously ~ not gonna happen.

I have felt pretty wrotten this week ~ most of the time I have felt much like a drunk sailor with a killer headache on rough seas ~ it's not a pretty picture! The turkeys have really getting me down ~ so when I had a small burst of energy tonight, I thought I would try out my sea legs on land and try to squeak out a run. I haven't been running in a couple of weeks and the last time I could only muster a mere mile at a snails pace.

Tonight, I set my iPod to my favorite running mix ~ cue the Training Montage from Rocky IV ~ and started out on my run. For the moment, I felt happy that my body wasn't completely failing me. Just a year ago I could occasionally run 6 miles ~ today, I would settle for a slow 5K. Having a positive attitude and pushing myself beyond my limits has always been an internal mantra for me. I'm no Wonderwoman ~ but pushing through the pain and fatigue gives me great strength. I need to give my brain more growth opportunities so that it remembers how to be a survivor. I will need those skills finely tuned so that my recovery from surgery is speedy.

Tomorrow ~ I will probably pay for shaking my brain up and down for half an hour ~ but the training exercise was necessary and a little bit of my sanity is once more restored.