Tacking

The shortest distance between two points is a straight line ~ but that's not always the path I've chosen. Tonight I've been reflecting and looking back at the path I've blazed over the past two years that's brought me to the here and now. I glance back ~ and OMG ~ what a zig zaggy path from hell I've taken. To the untrained eye it might look like complete random chaos. More like the path a rabid squirrel on crack would take ~ but I digress.

I love the water and there's no better way to spend time on the water than on a sailboat. Since learning how to sail a Sunfish at Camp Longhorn  (Heaven on Earth) ~ the art of tacking has always made me ponder. The task of going back and forth across the lake so that you catch the wind at just the right angle is fun and challenging. Sailing takes time, you are at the mercy of the wind and your tacking skills. Spending a day on the lake is a journey not a sprint.

Stay with me, I'm getting to my point...

I guess what I am trying to say is that all the detours and the seemingly unnecessary pit stops along the way in the my life are making sense now. Of course I had to zig-zag my way through the rough waters. There was no other way.

Each destination had a profound purpose, even if I couldn't see it or understand why at the time. Now the picture is becoming more clear and I can see how the parts fit together to make me more complete.

My words of encouragement to you are to hang in there when you feel frustration with how slow your journey is going. There's a whole lot of LIFE between knowing where you want to go and the journey that takes you there.

A Light Shines in the Dark

I recently took some time out of my busy work week to spend the night at a quiet, remote retreat center. After the sun set and darkness enveloped me I was greeted by a host of busy fireflies. Never in my life have I seen such brilliantly lit creatures. Perhaps they have upgraded their bulbs to LED lights?

Fireflies have always captivated and fascinated me. They have always reminded me of fairies and heavenly spirits. Amazing to me how much light they create and yet they are so small. Since nature speaks to my heart, this is what I found about fireflies showing up in my life ~ May you have some firefly visitors this summer, too.

Firefly

*Ted Andrews/Animal-Wise ~ Keynote: Spiritual inspirationsand hope.

For those to whom the firefly appears, it is time to trust in your own rhythms--physical and spiritual. Our hopes will begin to manifest, and our ability o inspire will grow. Fireflies remind us that there are others who will respond to us and who are like us. They flash with similar creative rhythms. They will make their presence known soon, and they will make our life more creative and healthier.

Fireflies generate light without heat, a process of chemistry and physics that is still baffling to science. Whereas most electric bulbs waste 97% of their energy in heat, a firefly concentrates 90% of it's effort into light. The glow emerging from so tiny an animal is sufficient to read a printed page, reflecting wonderful opportunities to make the seemingly impossible a reality, inspiring wonders that will be flickering and manifesting around us.

When the firefly appears is a wonderful time to jot down all of those creative ideas that are flickering in our mind through this time. We needn't worry about what to do with them now, for just by taking them out of the mental realm, their creative force is released into our life and they will provide inspiration that will affect us for a long time in the future.

The firefly looks ordinary during the day, but by night they sparkle, flickering like a star. They hold the promise of accomplishing our goals. Spiritual gifts are awakening. We are on the right path, and there are strong spiritual forces around us. When fireflies appear, people begin to reassess their former opinions and perspectives. We begin to shine and sparkle. Opportunities to fulfill dreams, to inspire wonder, and to awaken greater hope will begin to flicker strongly within our life.

Outside the Box

A picture says a thousand words, right? I've made the photo above my screen saver at work. It's a constant reminder to think outside the box and to look up every once in a while. So many times a day I find myself a victim of brain farts ~ ooo shiny! What was I just thinking about? I had a thought and just like that, poof! It's completely evaporated.

So, like I was saying, I've been thinking way outside the box ~ looking for a unicorn or a zebra in a herd of horses. I saw my most favorite endocrinologist in the world last week and after listening to me rattle off my numerous growing neurological chiari/cranial settling related symptoms, he emphatically told me that I was skating on thin ice. That's always a wake up call when you hear that from someone that you trust in the medical community. ~ sigh ~

After digesting my doctors concerns for my health, I took a deep breath and shared this bizarre, outside of the box idea with him to help validate that my idea wasn't completely off the reservation. I've been thinking lately, most of my symptoms lately: migraines, vertigo, trouble breathing, insomnia... are all related to cranial settling. After seeing my Chiari friends go through fusion surgery only to have the fusion rods re-done just a few years later, I really want no part of that routine. With that said, I vividly remember my Invasive Cervical Traction procedure that I had the day before my brain surgery.

At one point during the procedure, even through the twilight haze, I remember Dr. M discovering that when they lifted my head up and over and then down there was a remarkable change in symptoms and CSF flow. He was very intrigued since he had not seen a positive result before with that set of motions. So, I was thinking, if this procedure helped me to feel pretty good for a few years, why can't I go in for this type of surgical procedure again? Sure, I would miss a few days of work, but it's an outpatient procedure with no recovery time. How crazy would it be to at least start a dialogue with my doctors to see if this is a possibility.

Shockingly enough, my doctor totally was on board with my idea and didn't think it was crazy at all.

I feel like I keep buying time ~ waiting for technology to advance, looking for a less invasive more long lasting solution. I know there's no cure for Chiari ~ but this girl is still searching for a silver lining ~ a sliver of hope....

Stand in the Rain

This song speaks to me on so many levels ~ and I identify with Olivia from FRINGE on so many levels, too. How perfect that someone put these two together. Why is it that I keep finding myself standing in the pouring rain ~ figuratively of course ~ I can't seem to get to my happy place. Toss and turn ~ kick and scream  ~ wrestling within. Is there inner peace anywhere in my near future?

What's lost will be found...I'm placing a lot of hope on this...

"Stand In The Rain" ~ Super Chic(k)

She never slows down.
She doesn't know why but she knows that when she's all alone, feels like its all coming down
She won't turn around
The shadows are long and she fears if she cries that first tear, the tears will not stop raining down

[CHORUS]
So stand in the rain
Stand your ground
Stand up when it's all crashing down
You stand through the pain
You won't drown
And one day, whats lost can be found
You stand in the rain

She won't make a sound
Alone in this fight with herself and the fears whispering if she stands she'll fall down
She wants to be found
The only way out is through everything she's running from wants to give up and lie down.

[CHORUS]
So stand in the rain
Stand your ground
Stand up when it's all crashing down
You stand through the pain
You won't drown
And one day, whats lost can be found
You stand in the rain

So stand in the rain
Stand your ground
Stand up when it's all crashing down
Stand through the pain
You won't drown
And one day, whats lost can be found

[CHORUS]
So stand in the rain
Stand your ground
Stand up when it's all crashing down
You stand through the pain
You won't drown
And one day, whats lost can be found
You stand in the rain

Keep Looking Up

If you've been following my blog over the past 4 years, you know that I am a firm believer in signs. They can lead me in an unexpected direction, present clarity, be uplifting or just make me laugh until I cry.  I've been confiding lately in a wise friend of mine who has given me great counsel. Most recently, at the end of an encouraging email, a very simple yet profound message was conveyed ~

KEEP LOOKING UP

This wasn't a suggestion, but more of a wake up call ~ I've been looking down way too much lately and really can't remember the last time I lifted my head to the heavens and looked up. As a Chiarian, looking up isn't something we do much, because it physically hurts to look up and can cause a wicked case of vertigo. But I digress ~ God commands us to put our trust in HIM, search for that guiding light that shows us the way to go when we have lost our way.

Three times in two days I lifted my head to the skies after a torrential downpour and saw double rainbows. I was even able to capture them on my iPhone. The photo above was taken last night at the football field before the game. The rainbow is a promise that God will never flood the earth again ~ and HE always keeps his promises. But seriously, three times in two days? How many double rainbows have you seen in your lifetime. I've seen a couple but never been able to capture them on film to share with others.

The rainbow sightings have been humbling ~ giving me new perspective and hope. May you been blessed with the sighting of a double rainbow, too.

Hold On To HOPE!

Healing Hands of God

My eyes have been opened again by the lyrics of another song. Healing is an organic process ~ it ebbs and flows; but I haven't thought about this question in a while: Do you want to be healed? YES YES YES a thousand times ~ YES! I have to reach out and receive the healing hands of God.

Next comes the tricky part ~ what parts of my life need healing? Well the obvious in the physical ~ next comes the emotional piece. As the healing process moves forward, more layers are peeled back and more brokenness is revealed.

Just the other day I was chatting with a chiari friend of mine. We have never met in person, but I felt an instant sisterhood with a woman who has decided to take a leap of faith and schedule her decompression surgery this month. I am so blessed to have two surgeries behind me and have gained immense perspective on the big picture of living as a Chiarian. I love being able to share my chiari journey and encourage those along the way. I don't have all the answers, but I do know that putting everything in God's hands ~ deep breath ~ makes it a little bit easier to survive each day. I am greatly encouraged by the faith of those around me who continue to let the Lord guide their life!

How are you encouraged? We all have our responsibilities ~ we have jobs to go to, bills to pay, meetings to attend, relationships take time and energy. In a perfect world I would make a living helping other Chiarians get through life, especially the difficult days. Life can seem utterly impossible some days ~ I know, I have those days, still. although they are fewer and farther between now. I encourage you to keep in touch with your friends and let them know that they are not alone. Together, we can make this Chiari journey an adventure ~ may you be renewed today with the hope that one day, there will be a cure for Chiari

Healing Hand Of God ~ Jeremy Camp

I have seen the many faces,

I fear in the pain.

I have watched the tears fall plenty,

From heart ache and strength.

So if life's journey,

Has you weary and afraid.

There's rest in the shadow of his wings.

I have walked through the valleys,

The mountains and plains.

I have held the hand of freedom,

It washes all my stains.

If you feel the weight of many trials,

And burdens from this world.

There's freedom in the shelter of the Lord.

Chorus:

I have seen,

The healing hand of God,

Reaching out and mending broken hearts.

Taste and see the fullness of His peace,

And hold on to what's being held out.

The healing hand of God.

I have touched the scars upon His hands,

To see if they were real.

He has walked the road before me,

He knows just how I feel.

When you feel there is not anyone,

Who understands your pain,

Just remember all of Jesus' suffering.

(Chorus)

Cast all your cares on Him,

For He cares for you.

He's near to the broken and confused.

By His stripes,

Our spirit is renewed.

So enter in the joy prepared for you.

(Chorus)

The healing hand of God (x2)

And hold on to what's being held out (x2)

The healing hand of God

Oh Oh Oh Oh

Sisterhood/Brotherhood of the Traveling Brain Tails

Next week on September 26th, I will be walking alongside other brain tails, friends and family in the second annual Conquer Chiari Walk Across America walk here in the Albany area. Participation is free but you can make a donation on the day of the walk or online. Here's the link for the online donations ~ https://www.conquerchiari.org/ccwaa09/ccwaa_donate.asp?user=LacieHeiser ~ If you would like to sponsor me, select the Walk Location: New York, Albany ~ Then you can select my name. Even if you don't have much to give, even a little can add up.

September 26th is an emotional and significant day for me. My chiari brain tail was discovered on 9/26/06 ~ three years ago. As I pause to glance over my shoulder and reflect on my three year that has brought me here today, I am overwhelmed with every emotion ~ fear, denial, disappointment, hopelessness, hope, pain, elation, frustration, sadness, joy. How did I make it through those incredibly tough times? All of the neurologist appointments, hours of phone calls with the insurance company, volumes of paper work, countless MRI and CT scans, tethered cord surgery, invasive cervical traction, brain decompression, morphine pumps, hours of physical therapy ~ all these things and more have consumed my life for the past three years. Every baby step I took was taken in faith ~ a blanket of reassurance to keep me moving forward.

As I briefly glanced at the list of walkers signed up for Albany walk ~ I recognize and know a large number of people. These amazing individuals were strangers to me and now have become instant friends all because of our brain tail bond. I am so thankful for all the friends I have made through my chiari journey ~ they have made the road a lil bit easier to tread upon.

We all walk to raise money for chiari awareness and research to one day find a cure. There IS NO CURE FOR CHIARI. Painful surgeries will help prevent some irreversible nerve damage and perhaps paralysis. But if I would dare to speak for many other brain tails ~ we all live with some degree of pain on a daily basis ~ We deal with it and keep moving forward. But wouldn't it be awesome to find the gene that goes crazy during gestation to put a stop to chiari once and for all. Life is for the living. I'm looking for the brighter days, won't you join me?

CONQUER CHIARI WALK ACROSS AMERICA

WHAT? A series of coordinated Chiari walks held at the same time across the country.

WHERE? This year, the walk will take place at more than 30 locations. Check the List of Sites to see if there is a walk near you.

WHEN? Saturday September 26th, 2009. September has been named Chiari Awareness Month in many states. In conjunction with the Walk Across America we hope to get more states to recognize September as Chiari Awareness Month.

WHY? To raise awareness of Chiari and to raise money for vital research. In 2008, the Walk Across America raised $170,000 for research, with 90% of the money going directly to fund exciting research projects at major universities and treatment centers.

First Encounter Sunset

For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.

Jeremiah 29:11-13

I took this picture a couple of years ago while on the First Encounter beach at sunset ~ I am in awe of the sunsets that our creator paints for us! What a gentle reminder to keep making plans for the future ~ as long as I am breathing and still on this planet I know that He has plans for me ~

Keeping the Faith

I am reading Dan Brown's Angels and Demons and I just came across a brilliantly written paragraph about terror. In light of the TCI ongoing investigation this really hit home and explains the ripple effect of terror.

"'Terrorism', the professor had lectured, 'has a singular goal. What is it?' ...'To cause terror?'
'Concisely put. Quite simply, the goal of terrorism is to create terror and fear. Fear undermines faith in the establishment. It weakens the enemy from within...causing unrest in the masses. Write this down. Terrorism is not an expression of rage. Terrorism is a political weapon. Remove a government's facade of infallibility, and you remove it's people's faith.' Loss of faith..."

Life continues to teach me many hard lessons ~ some numerous times ~ life is hard ~ the good guys don't always win ~ nothing is fair ~ pain comes from living a full life ~ there is good and evil in all situations. I thought that maybe after surviving brain surgery that I would be exempt from anymore hardships ~ clearly I had a delusional moment ~ but it's OK ~ I still have a lot of living to do and a lot to learn.

This post might seem a little cryptic, but I am sorting out something in my head. I have really had to sit and simmer for a while ~ remove myself from an emotional tornado ~ the mama bear in me wants to spring forth and play the protector. Faith has been completely shattered for many and getting that trust back is a slow and long process. I am so thankful that I am where I am in my chiari journey so that I have a clarity that comes from stepping out in faith and entrusting my life to brilliant neurosurgeons.

~Sigh~ How do I find the strength to continue to do my part to infuse the chiari community with a renewed hope and faith in surgeons who heal? One breath at a time ~ one baby step at a time. Living with Chiari is a moment by moment struggle ~ a lifelong battle ~ but there is so much more to life than living and dying. As long as I am breathing I will continue to encourage those of you who need someone to cheer you along in your journey ~ you are never alone! Finding joy and a peace that passes all understanding ~

If You Want Me To - Ginny Owens

What A Package Deal: Faith, Hope, Wisdom and Courage ~

A month ago, I had a bucket full of iris bulbs in my garage that have traveled all the way from Texas to New York. The story behind the traveling bulbs is that they were originally dug up out of the ground at a family property in the Texas Hill Country back in the early 1970s. Since then they have been planted ~ dug up ~ stored ~ transplanted ~ and so the cycle repeats over and over again with each move. So here we are in 2009 and I just put the bulbs in the ground. They have been sitting in our garage for almost THREE years ~ since we moved I just haven't gotten around to transplanting them ~ and finally I can check them off my list.

I always thought that the spring time wasn't the greatest time to put bulbs in the ground, but I knew if I waited much longer, I would blink and another year would have flown by. I also was not expecting any blooms this year as I thought the blooms had to sit in the ground a year before producing blooms ~ guess I was wrong! You can imagine my surprise when I noticed just the other day that we have a couple of deep purple blooms peeking out ~ just waiting to burst forth with breathtaking blooms.

Since nature always seems to be speaking to me I looked up the meaning of the Iris flower and was reassured that certainly their symbolism speaks louder than words. The iris is associated with faith, hope, wisdom and courage. I'll take two helpings of that!

Brain Tail Whisperer

I was so sad and sick to my stomach today as the scathing accusations ripped the headlines. I won't dignify the press here, you can find the articles on the Internet ~ but I feel as a loyal patient of Dr. B and Dr. M, I must say something.

The facts are that my incredible neurosurgeons (Brain Tail Whisperers) were recently suspended for two weeks due to a scheduling mishap with the hospital. I am still hoping that the real story will eventually come out, but my brain tail tells me that there was a family emergency and the powers that be didn't get the message to cancel a surgery. Let's face it ~ communication breakdowns happen ~ it's part of life. Recently there was a HUGE miscommunication that resulted in panic in NYC when Air Force One flew over Manhattan for a photo op and forgot to tell the Mayor of NY! It's unfortunate that this happened, but seriously, I have been a patient at North Shore Hospital three times and it's a zoo over there. My docs perform two surgeries a day ~ five days a week. I know they are way over worked and must be completely exhausted! The bright side of this is that they got a well deserved vacation!

I seriously doubt that any of the reporters or the lawyer who is filing lawsuits has ever met Dr. B in person. My Chiari journey has involved 4 local neurosurgeons. Two of which I adore and they referred me to TCI as I was a complicated case and way out of their league. The other two told me to my face that the good docs at TCI were making diagnosis up! When it comes down to it, I have leaned on faith and what my heart has told me where I should be treated.

When I had my initial consult at TCI in May of 2007 a surgery plan was proposed that involved a spinal detethering followed by a posterior fossa decompression and fusion. I was told by Dr. B that the decompression surgery was brutal and would be a long and painful recovery. He said that when surgery looked better than living with my symptoms, then I would know when to have the procedure done.

On 2/1/08 I had my spinal detethering surgery ~ remember this was only diagnosed by TCI. They had explained that my spinal cord was tethered and responsible for causing my chiari malformation. The constant downward pulling of my brainstem had caused all kinds of horrible side effects. I was willing to believe in the unseen and put my faith in my surgeons. When I came to after my detethering Dr. M stopped by the recovery room ~ held my hand ~ looked me in the eye and told me that I was incredibly tethered. He wanted me to cancel my brain surgery that was scheduled for the next month as he was certain that the detethering would reduce my brain herniation.

After the detethering, my symptoms were greatly improved, no more gait problems, my constant nausea was gone ~ but truth be known, my brain tail measured at 17mm ~ it was going to take an act of God to make me feel up to 100% again. I scheduled my decompression for 12/3/08 as it seemed evident that my brain definitely needed more room. I wasn't disappointed that the detethering didn't 'fix' me ~ I understood the complexity of my case. I couldn't continue to live with the constant swirling vertigo, brain fog, trouble swallowing, trouble breathing. I know that my docs at TCI are not super heroes ~ although they come pretty close in my book. The day before my decompression I found out that between Feb and Dec 2008 my brain tail had shrunk from 17mm to 10mm due to my detethering! The surgery absolutely improved my condition.

I know I have rambled on, but I am almost finished ~ So I had my brain tail decompression done on 12/3/08 and I am so thankful that I was decompressed. Sure, I have Chiari pressure headaches on a rainy day, but compared to how I felt prior to surgery I would say I am close to 95% now! TCI takes patients who have no where to turn ~ patients turned away from other surgeons who claim they need to be locked in a padded room as all their symptoms can't possibly be related to Chiari! Their bedside manner is incredible ~ how many neurosurgeons do you know that will hold your hand, look you in the eye and put your fears to rest?

I could go on for another hour, but the point I am trying to make is ~ please don't lose faith in TCI. Please don't be quick to judge before all the facts are in. These are good, hard working, caring surgeons who have saved thousands of people! They need our support now more than ever. This too will pass ~ take the higher road with me ~ I still believe.

Always Looking Up

Last week I DVR'd an Oprah episode when Michael J Fox was the guest. Today I finally got around to watching it and wasn't prepared for the profound effect the show had on me. It's been a rough couple of days. The sky has been dense with grey clouds and the rain and some snow flakes have been falling. As a chiarian these weather conditions can cause those lovely barometric pressure headaches from hell, not to mention the feeling that an elephant has camped out on my chest making it difficult to breathe. On top of it all I have been hunkered down in my study bunker trying to cram for my SQL 2005 test that I took yesterday. I passed the multiple choice ~ 35 question section that I have been studying for, but I totally failed the application part of the test that I had no idea existed! Needless to say I was feeling defeated and disappointed yesterday. All that studying and I have to take the whole thing all over again ~ sigh
Anyway, while I was sulking around last night I was thinking about the aftermath of my brain surgery. I do survival mode really well ~ I know my path and I slog through it. But what now? After brain surgery there isn't anything anything harder in life ~ right? Wrong ~ I am learning that my perspective on things have totally changed post surgery. I can't even begin to explain it yet ~ maybe it's a feeling I have deep down in my heart ~ like I need to be doing something profound ~ making a difference. But honestly, I just don't have the energy yet ~ I am getting there, but slower than I would like. That brings me to the point I was trying to make all along.

I have always been a big Michael J Fox fan ~ ever since Family Ties. How could you not love the guy?! Remember Back to the Future (the flux capacitor is fluxxing) and Secret of My Success? Classic movies of the 80's. Fox was diagnosed with Parkinson's Disease about 18 years ago. I have kept up with his condition and I am amazed at how he has continued to live his life despite all of the odds stacked against him. Oprah's interview with Fox was inspiring to say the least.

When my Chiari symptoms were at their worst I thought I just couldn't continue to live with the constant tilt-a-whirl effect of vertigo and the crushing headaches. Then I hear Michael talk about feeling like he's got a four year old constantly tugging on him ~ pulling his body in every direction. I can't even to begin to imagine how difficult his struggle must be ~ but he does it and is making a difference in this world by raising awareness and helping to find a cure.

I saw a quick one minute promo for the special and was intrigued by the fact that Michael's symptoms were lessened when he was in the high altitude of the Himalayas. Sounds like my intuition about going to Everest just might be more than a passionate desire! Again, I am inspired by Fox's great positive attitude, proof that even when you can't change your circumstance, you can choose to be positive. Adventures of an Incurable Optimist is on May 7th, 10pm on ABC. ~ put it on your calendar and watch with hopes that you just might find a glimmer of hope and renewed faith. too. Thanks to Michael for awakening my blogging muse who has been slumbering for way too long!

I Believe In The Sun Even When It's Not Shining

It's easy to get lost in the dreariness of winter. It seems like the wintry mix and clouds will never part. That's what I was thinking on my drive in to work this morning ~ then as quickly as the depressing thoughts came into my head, they were gone with the sound of lyrics on the radio that transported me once again to a place of hope and warmth.

I Believe In Love ~ Barlow Girl

How long will my prayers seem unanswered?

Is there still faith in me to reach the end?

I'm feeling doubt I'm losing faith

But giving up would cost me everything

So I'll stand in the pain and silence

And I'll speak to the dark night

I believe in the sun even when it's not shining

I believe in love even when I don't feel it

And I believe in God even when He is silent

And I, I believe

Though I can't see my stories ending

That doesn't mean the dark night has no end

It's only here that I find faith

And learn to trust the one who writes my days

So I'll stand in the pain and silence

And I'll speak to the dark night

I believe in the sun even when it's not shining

I believe in love even when I don't feel it

And I believe in God even when He is silent

And I, I believe No dark can consume Light

No death greater than this life

We are not forgotten

Hope is found when we say

Even when He is silent

I believe in the sun even when it's not shining

I believe in love even when I don't feel it

And I believe in God even when He is silent

And I, I believe.

Kilimanjaro

A very wise chiari friend of mine told me that when she was getting ready to have her brain decompressed she planned her dream vacation. That way, when she was feeling miserable she would have something to look forward to. She suggested that I do the same. The task at hand is harder than it might sound. All of the 'road blocks' immediately come to mind trying to squash my dream like an unwelcome bug before it's come to life! Where will I come up with the money for a trip? How will I take the time off? Will I ever be healed enough to do what I want to do?

One of my dreams is to summit Mt Kilimanjaro. I was intrigued when I read Seven Summits a couple of years ago. I am fascinated that you start out in the rain forest and end up in Arctic like conditions on the summit. The book I am reading, Learning to Breathe, Alison Wright, the author's dream when she is recovering is to summit Mt Kilimanjaro on her 40's birthday. Just the other day I saw the story about Ann Curry climbing Kilimanjaro, too ~ coincidence? So ~ yeah ~ Kilimanjaro's on the list. I guess the biggest question is who can I wrangle to go with me on the journey? Any volunteers?

Steep Climb Up Ahead

I am all for mental preparation ~ If there's something I have committed to I want to know what to expect. My experiences in the past have gone well when I have faced a dark situation with this attitude,
Hope for the best, but expect the worse.
I know, it sounds a little pessimistic, even for me, but it's the truth. With that said, my sister gave me a book (Learning to Breathe, by Alison Wright) for my birthday that has been a great inspiration to me and I am only half way through the book. It's a story about a photojournalist who found herself in a almost fatal bus accident in a foreign country. I won't give away the whole plot, but she was a breath away from death and chose to live and fight through her injuries to live.

Last night I read a sentence that really resonated with me ~

"Even in the darkness all we can do is keep moving forward."

This reminds me that all I have to do is just keep putting one foot in front of the other and eventually I will find myself no longer in the inky darkness of pain. How's this for perfect imagery, yesterday was cold, windy, rainy, overcast, the sun never came out all day. A super dreary New England day. This morning I awoke to a brilliantly shining sun, crisp, cool air. Even after the darkest night the sun will rise in the East.

So, I am off to church this morning, then Skyler's b-day party followed by the Giant game ~ Hey, anyone out there following college football? How about my Texas Tech Red Raiders!!!

Hope Now ~

Time has been speeding up for me. My chiari friends have told me on numerous occasions that as my surgery date draws nearer time will speed up. So true and the last couple of months have been a blur. It's like I am on some kind of souped up auto pilot. Sure, I am pretty functional ~ I get my work done at work, keep up with house chores; but I feel as though i am walking around in someone elses body. True Story!

I am trying to stay focused with the tasks at hand for each day ~ it keeps my mind occupied. Although many thoughts take me away from focusing on the Lord, I am quietly reminded with words of encouragement that I am His ~ He is in control. It's a daily struggle ~ surrendering over and over again my fears and anxiety over brain surgery. oi!

I wanted to share the lyrics below of a song that has lifted me up.

Hope Now ~ Addison Road

If everything comes down to love
Then just what am I afraid of
When I call out Your name
Something inside awakes in my soul
How quickly I forget I'm Yours

(PRE-CHORUS)
I'm not my own
I've been carried by You
All my life(

CHORUS)
Everything rides on hope now
Everything rides on faith somehow
When the world has broken me down
Your love sets me free

When my life is like a storm
Rising waters when all I want is the shore
You say I'll be ok and
Make it through the rain
You are my shelter from the storm

(PRE-CHORUS)

I'm not my ownI've been carried by You
All my life

(CHORUS)
Everything rides on hope now
Everything rides on faith somehow
When the world has broken me down
Your love sets me free

(CHORUS 2)
Everything rides on hope now
Everything rides on faith somehow
When the world has broken me down
Your love sets me free

You've become my hearts desire
I will sing Your praises higher
Cause Your love sets me free
Your love sets me free
Your love sets me free

New Discoveries Awaken the Muse

There's nothing like the shock and awe factor to awaken the Muse from her slumber. ~Sigh~ Thanks for all the happy birthday wishes ~ they really made my day. The picture above was the only thing I could think about today. The shock has worn off ~ WARNING ~ if you put your daughter into an MRI machine to capture pictures of her brain, prepare yourself for what might be revealed.

That's Skyler's brain ~ recognize the all too familiar brain tail in there? Hers is minimal ~ 5-6mm herniation. Actually, we haven't even received the official phone call from the doctor yet. I was finally able to open the MRI disk that the hospital gave to me. I immediately e-mailed my pediatrician to see if she had heard anything from the neurosurgeon yet and she confirmed my suspicions.

More later ~ I just wanted to let you all know what's going on on my lil speck on this planet. I keep reminding myself that God doesn't give us more than we can handle. More will be revealed. I just thank God that I know what Chiari is and will make it my mission in life to prevent Skyler from having any kind of brain surgery.

A Gathering of Traveling Brain Tails

Just a quick note to let you know that I haven't fallen of the face of the earth, although, there have been moments when I thought that might actually happen! Seriously ~ having vertigo for 4 days straight can get old pretty fast. Think Jack Sparrow sauntering around ~ searching for more rum and wondering why all the rum is gone!

For the past year I have been in conversation with the local newspaper to try and get an article out about chiari to boost awareness. Finally, my contact there has printed a small story about the upcoming Conquer Chiari Walk Across America taking place in Albany, Washington Park at 10am this Saturday. You can read the article if you click on this link ~
http://timesunion.com/AspStories/story.asp?storyID=721409.

More later ~ I know ~ I am sooo behind on blogging ~ I will make up for it soon.

The World Is Changing

I woke up this morning with a palpable feeling of sorrow. The heaviness has completely enveloped me ~ I feel as if I am wading through warm quicksand. 9/11/01 brought catastrophic loss to many families ~ their profound grief is felt around the world as we all remember those who lost their lives 7 years ago tomorrow. I pray that as time passes the grief is replaced with a renewed hope in those who were left behind. Love heals all.

Galadriel: The world is changed. I feel it in the water. I feel it in the earth. I smell it in the air. Much that once was is lost, for none now live who remember it.

http://www.stobiepiel.com/midis/world.wav