Embrace

How do I make peace with someone who is constantly betraying me? Just when I think we can be friends and work together in harmony ~ SHARK FARTS ~ there she goes and does it again!!! I continue to be disappointed, over and over again. How long am I willing to put up with trying to rely on someone who isn't dependable anymore?

I am sure by now you are wondering ~ who is she talking about and why is she still friends with this person ~ right? This has to be the most challenging relationship I have been in and it's a lifelong bond. Believe me, if I could take a vacation from my brain, even for an hour or two, I totally would!

I haven't blogged in a while and don't want this post to seem completely a downer ~ so let me go over the facts first:

1. I have a Chiari Malformation of which there is no cure (not yet...)
   
2. I had two surgeries in 2008 to put a halt to the progress of irreversible neurological damage caused by a kinked brain stem and my brain hanging out in my spinal column
3. I have cranial settling and need fusion surgery, but am battling osteopenia to strengthen my bones enough so that I can eventually get the fusion surgery
4. When I was released from the hospital after my brain surgery, my brain surgeon gave me this piece of advice. What ever you do ~ don't get in a car accident!
5. My car was rear-ended about a month ago when I was sitting at a red light.
6. Headaches and vertigo have moved in again

So you'll find me somewhere in the middle ~ again. I don't know how this keeps happening, but just when I think I have moved out of the middle, I find myself caught here again. I am certain that I don't want to go back and it's unclear where the next path is. This might explain why my blog has been quiet for quite a while sometime. If you look at the big picture, I am a poster child for successful tethered cord and decompression surgeries. I healed beautifully and gleefully went back to work within 2 months. My quality of life has greatly improved ~ some days I almost feel 'normal'.

Then I have a day like today when it's all I can do to keep from retreating to the bedroom, close the blinds and climb under the covers ~ praying that sleep will wash away the headaches. But I press on ~ I have a physical therapy session for upper body strength and balance in an hour. Maybe after that I can take my heavy duty pain meds...But this is only a temporary fix. What does this mean long term? Do I wait until December ~ see if my bone density increased ~ then what? Do I schedule a fusion surgery for the spring? If I get the fusion done will it actually help my headaches or make them worse?

So at this point ~ I am going in the direction of welcomed distractions ~ send them my way ~ please! One day at a time ~ I keep setting mini goals and keep putting things in my calendar so that I have many things to look forward to. Honestly, the best medicine for me right now is time with friends ~ laughter is a wonderful cure. Now, can we bottle that up and cure chiari with it????

***What's up with the zebra you ask? Well if u look at a zebra it's pretty much a horse ~ except for the stripes. Chiarians are kinda like Medical Zebras .

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

Brain Tail Comparison ~ One Year Post Decompression

Sorry I have been remiss in posting about my one year post decompression doc appt that I had back on 1/29/10. I have attached MRI photos of my brain ~ the one on top is the current one and the one on the bottom was taken when I had a herniation of 17mm back in September of 2006. There's a tiny bit of cerebellar herniation but not enough to write home about ~ I love the proof that they actually removed my top vertebrae and a big chunk of my skull and you can clearly see it in the image.

This past visit with my neurosurgeon was not very highly anticipated ~ in fact it was quite the bitter pill to swallow. So here's the positives first:

• I am doing well enough to hold down a full time job


• I am functioning at a pretty high level


• I can care for myself without needing any assistance

And here's the rest of the story:

• My neurological functioning has actually deteriorated a bit since May of 2009 ~ I flat out failed a couple of my neuro tests that day. You know the one where you stand with your feet together ~ hold your arms straight out in front of you and close you eyes ~ well I immediately fell backwards.


• Failed to walk heal to toe without falling off the invisible tight rope


• Confirmed that I have stenosis


• Confirmed that I have degenerative disk disease and will probably need disk replacement in my back at some time in the future


• Chiari headaches are more frequent again


• Vertigo is back with a vengeance


• Don't forget the brain fog from hell

With that said ~ I have finally surrendered to modern medicine and am committed to taking Diamox to see if it will get my chiari headaches under control. ~ SIGH~

I have mixed feelings about my condition ~ yes, I have Chiari and even with two major surgeries ~ to prevent any further neurological damage I still have symptoms. I am learning to be at peace with this ~ enjoying the days that I feel good and to not be so hard on myself when I feel like I've been run over by a really big honkin truck!

Fingerprints of God

My oldest daughter, Hannah, turns TWELVE today ~ it seems like only yesterday when she came into this world. Just the fact that I have been chosen to be a mother is a miracle! You see, my doctors had told me for years prior to my pregnancy that getting pregnant would be close to impossible. I had a miscarriage prior to Hannah, John and I were completely devastated! How could I possibly bear to hope again. Then it happened...

I was driving home from work on an ordinary day ~ the radio was on and I was going over a list of things to do in my mind ~ then I heard a voice. The voice said in a firm but loving voice ~

"You are pregnant ~ do you believe?"

Thinking I was hearing things, I turned off the radio and listened..again, I heard the same question,

"You are pregnant ~ do you believe?"

Steadying my voice, I said out loud ~

"I BELIEVE!"

Then I laughed out loud ~ What an awesome God ~ knowing that I was brokenhearted He had sent one of his messengers to deliver the good news to me. To test my faith even more, a couple of weeks later when it came time to take a pregnancy test ~ it was NEGATIVE. I smiled and replayed the voice in my head ~ Do you believe? Of course I do! The next month, when I had a positive test and a visit from my doc I found out that I was indeed NINE weeks pregnant already.

The song below is dedicated to Hannah ~ from the very second I learned that I would be her mom, I knew that she would be covered with the fingerprints of God.

Fingerprints of God ~ Steven Curtis Chapman

I can see the tears filling your eyes
And I know where they're coming from
They're coming from a heart that's broken in two
By what you don't see
The person in the mirror
Doesn't look like a magazine
Oh but when I look at you
It's clear to me

That I can see the fingerprints of God
When I look at you
I can see the fingerprints of God
And I know it's true
You're a masterpiece that all creation
Quietly applauds
And you're covered with
The fingerprints of God

Never has there been and never again
Will there be another you
Fashioned by God's hand and perfectly planned
To be just who you are
And what He's been creating
Since the first beat of your heart
Is a living, breathing
Priceless work of art

And I can see the fingerprints of God
When I look at you
I can see the fingerprints of God
And I know it's true
You're a masterpiece that all creation
Quietly applauds
And you're covered with
The fingerprints of God

Just look at you
You're a wonder in the making
And God's not through
In fact, He's just getting started!

Learn Something New Each Day

Just when you thought you knew everything ~

Life Is So Much More Than What Your Eyes Are Seeing

I believe Christmas is a time for miracles, love and unexplainable happiness. If this is true, how come I hear stories of hearts breaking, hopes dashed, fears realized? Pain and despair are all around us ~ if not directly going on in our lives, chances are that we have a friend or family member who is in the fight of their life.

I know that I alone can't take away any of these trials, as much as I would love to wash it all away. But there's always hope ~ I encourage anyone reading this post to share the message of hope ~ of faith ~ What can faith do in your life?

WHAT FAITH CAN DO ~ KUTLESS
Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think it’s more than you can take
But you are stronger, stronger than you know
Don’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

Overcome the odds
You don't have a chance
(That’s what faith can do)
When the world says you can’t
It’ll tell you that you can!

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise

Christmas Is All in the Heart

Less than two weeks until Christmas and my brain is buzzing with anxiety ~ all those lists compiling in my head and certainly not enough post it notes to contain them all. I have done well with putting on my cyber hat and have done most of my shopping on-line this year, but there's always an item or two that requires actual shopping!

Being a brain surgery survivor, I feel grateful for how much better I feel this Christmas than last. Hey, I might even be able to store memories this year, too. Last year's Christmas is a blur ~ honestly, I can't remember on thing from last year. Maybe it's for the best ~ a defense mechanism to work through the pain of recovery.

If you are reading this and you have a brain tail, you just might know what I am talking about when I share with you that my brain short circuits, still, from time to time when I can't organize my thoughts or when I get a big dose of sensory overload. The holiday shopping frenzies = SENSORY OVERLOAD. ~sigh ~ 10 ~ 9 ~ 8 ~ 7 ~ 6 ~ 5 ~ 4 ~ 3 ~ 2 ~ 1 ~ This is me taking a couple of seconds to breathe ~ collect my thoughts and move forward.

The shopping will get time ~ I just need to focus on one thing at a time ~ and remember to breathe from time to time ~ oi! More importantly ~ Christmas isn't about the presents ~ Christmas is all in the heart...

Hidden Treasures ~ What's In Your Coat Pocket?

Hidden treasures ~ those little unexpected surprises we discover ~ look around the floorboard of your car (you might even find a two day old burrito with a lil bit o carpet lint on it) ~ all kind of treasures between the sofa cushions, too. What about your winter coat pocket? When was the last time your looked in there?

Snow fell this weekend and I decided it was OK to go ahead and put on my wool coat ~ the thermometer read 27 degrees this morning. As I was putting on my coat I noticed there was something in my pocket ~ I reached in and pulled out the contents ~ ear plugs ~ lovely. Wow ~ it's been over a year since I wore my grey coat ~ I can tell just by pulling out those little bits of yellow foam. These must have been left over from my last MRI right before my decompression last December.

Funny how an object can cause a wave of emotions to wash over me in an instant. I would have preferred to find a stick of gum, maybe some loose change/dollar bills, a grocery list. Like a sage friend of mine told me today ~

'Maybe God wants you to remember that time in your life and He doesn't want you
to EVER forget.'

Message received ~ What will you find in the deep pockets of your winter coat? Maybe someone is trying to get a message across to you, too.

NCB ~ Simply ~ The BEST

Our North Colonie Pee Wee Large cheer team competed at the Eastern Regional competition last weekend in Trenton, NY. Our cars were covered in shoe polish with NORTH COLONIE BISON. The top two teams go on to compete at the National level in Florida, Walt Disney World. Last year we missed going to Nationals by TWO points.

After the NY competitions were done we had three weeks to totally re-choreographed our routine to kick it up a notch so that we would have a shot at placing in the top two.. We threw in one legged stunts ~ liberties, arabesques and a heal stretch. Practices were long and tiring, but the girls rose above all the sicknesses that plagued our squad and made it work.

When it came time for us to take the floor and practice one last time before performing ~ confidence was shaken to the core for Hannah. The noise level in the arena was high ~ the girls couldn't even hear us shouting out the eight counts to walk through their routine. For whatever reason Hannah's stunt group didn't get her up and there wasn't a second chance to practice again. Our team was ushered off the practice mats and we got in line to perform. Emotions were running high ~ there was electricity in the air with anticipation of performing our 2:30 minute cheer/dance.

Us coaches were getting the girls pumped up ~ wishing them good luck and getting ready to say goodbye to them before their performance. I glanced over at Hannah and saw her tear streaked face ~ she was totally devastated ~ she was shaken and I had to find a way to get her past defeat and focused on the huge task at hand. She is a flyer this year and goes up in the air a couple of times during the routine. If her confidence didn't come back and quickly it would have spelled disaster for the routine.

I rushed over to embrace her ~ looked in her red eyes and told her she was going to nail her performance ~ shake off the feeling of inadequacy and make it work. I stepped away from her to let the other coaches swoop in to boost her up, too. She got the water works flowing for me and I had to turn away to hide my tears from the rest of the team. We said goodbye and took our places in the tunnel where the coaches wait until our team takes the floor. What a nerve wracking 30+ minutes we waited!

When our NC Bison took the floor we were ushered to the coaches box to watch them perform. We all held hands tightly ~ my heart was beating a million beats a second ~ I said another prayer ~ took a deep breath and waited for them to begin. When our girls spirited onto the floor I could see their smiles and their energy was bubbly ~ they had taken the floor to give it their all and they were happy! Their performance was flawless ~ not one bobble ~ all the stunts went up ~ what an answer to prayer. When they were done we all leaped to our feet ~ screaming ~ jumping up and down. Our girls had given it their all ~ and now we waited for the results.

Truthfully, I didn't even want to watch the other teams compete. We had done our best and our fate was in the hands of the judges. When all the teams took the floor for the awards ceremony I had high hopes that we would place,but had no idea if we had done well enough to go to Nationals. When they announced our team as the THIRD PLACE winners it was bittersweet ~ yeah we missed the coveted second and first place, but we had competed with a tough competition. There were tears of disappointment, but by the time we left the arena our girls filed out with smiles on their faces and heads held high.

Not until a couple of days later did we find out what the other team's scores were ~ that's when our third place win became even more bittersweet ~ we missed Disney by one third of a point!! That's 0.333333333 ~ Last year we came in FOURTH ~ this year THIRD ~ next year ~ DISNEY.

It's the Climb

Often, I get swept away in the flurry of activity in my life ~ it helps me to not focus so much on the tireless climbing. Chiari never takes a vacation ~ the brain tail might sleep in late after a full day of inflicting pain, but awakes soon enough. In light of our cheer competition last weekend (that's another post) it's hit home more than ever that life is all about the climb.

Living with Chiari is a climb, but along the way lives have been touched ~ healing is going on all around us. I am trying to re-focus and stop looking behind at the past and ahead at the future and stay in the moment ~ the now ~ the ground beneath me. Won't you join me?

THE CLIMB ~ Miley Cyrus

I can almost see it, that dream I'm dreamin but,

there's a voice inside my head saying, you'll never reach it.

every step I'm taking every move I make feels lost with no direction, my faith is shaking,

but I, I gotta keep trying I gotta keep my head held high

There's always gonna be another mountain I'm always gonna wanna make it move

always gonna be an uphill battle and sometimes I'm gonna have to lose it

ain't about how fast I get there ain't about what's waiting on the other side

its the climb

The struggles I'm facing

the chances I'm taking

sometimes might knock me down but

no I'm not breaking

I may not know it but these are the moments that

I'm gonna remember most yeah just gotta keep going and I

got be strong gotta keep on pushing on cuz

There's always gonna be another mountain

I'm always gonna wanna make it move

always gonna be an uphill battle sometimes

I'm gonna have to lose ain't about how fast I get there

ain't about whats waiting on the other side

its the climb

keep on moving keep climbing

keep the faith babe

its all about its all about the climb

keep the faith keep your faith