Row of Ducks

Today DH & I took Skyler and Hannah to the doctor for a check-up so that I could get all of their medical papers for camp officially filled out and signed. Clearly they are both very healthy kids ~ they are rarely sick ~ I can't even remember the last time we went to the doctor for a sick visit. We are truly blessed to have such healthy kids. Anyway ~ my main reason for bringing them in was to bring their pediatrician up to speed on my health journey and inquire where to start with the kids.


A vision of a giant can of worms comes to mind ~ a huge tin can writhing with Jurassic worms! Seriously, am I ready to find out if my daughters also carry the mutated genes that create too much collagen, occult tethered cords and chiari malformations? Realistically, if we do find that they are going to need surgery, I at least want to get my brain decompression out of the way so that I will feel better and can focus on nursing them back to health. Deep breath ~ sigh ~

So while the unassuming pediatrician was filling out the paper work we had trucked in to the office I gave her a subtle warning ~ I told her I had some questions ~ she said she would love to multi-task but wanted to finish filling out the paper work first. I told her I had a 'Double Jeopardy' question ~ she later told me I should have called it 'triple whammy jeopardy'!
After all the paper work was completed, I started the conversation with, "Are you familiar with a brain malformation called Chiari? A collagen mutation called Ehlers Danlos? A spinal deformation called 'Occult Tethered Cord'? You could see the immediate concern on the doctor's face. I tried to sum up my health abnormalities in 3 minutes ~ then voiced my concerns that my daughters might also have the same conditions. After much dialog back and forth ~ we decided to go ahead and start with my youngest, Skyler. She's got a couple of external markers indicating TC and of course with the uber bendiness of her joints she oozes with EDS already ~ So I guess you could say that I am getting my ducks in a row.

Our pediatrician remarked about the calmness we all possessed while talking about spinal and brain malformations ~ heavy topics ~ HUGE ~ but you know what? I have had a long time to sit with the information ~ mulled it over in my brain many times. I guess you could say that we are all a little callused. I have done my homework. I know what is at stake ~ if left untreated, my kids will probably be facing brain surgery some time down the line. If there is anything in my power to prevent this from happeneing ~ I will do it. But seriously ~ how crazy is all of this?! My youngest child is healthy ~ no complaints ~ active, energetic, creative, loving ~ nothing is shouting 'occult tethered cord'~ but I have an intuition that something is not right.
I was so relieved when our pediatrician sat and listened to our story without missing a beat ~ no rolling of the eyes, no deep heavy sighs, no interrupting me in mid-sentence. We are blessed to have a doctor who is genuine and caring. She agrees with me and supports getting Skyler checked out first ~ see what we find and go from there. You know how I have talked many times about perspective ~ how God sees the whole picture and we see just a tiny view of what is happening. Well this afternoon my perspective came into focus just a little bit more. Maybe the reason why I am going through all of these Chiari pains is to prevent my children from suffering. Seriously ~ I am still amazed that one little MRI turned my world upside down and brought instant clarity at the same time.


Maybe there is something wrong with me, but this progression of events seems as it should be. I'm not freaking out about the possibility of going through all of this with my kids ~ All is happening for a reason ~ reasons I can't possibly fathom. But through it all I hear the sound of God's gentle and powerful voice (I hear Him as James Earl Jones sometimes in my head ~ think Mufassa from Lion King) telling me that He will not leave me or forsake me. There is nothing too big for Him to handle and I trust in the truth of that statement. Oi! It's been a while since I have done some heavy blogging ~ but there it is ~ more developments to follow ~

I'm Giving In To Something Heavenly

The lyrics to this song seem to sum up everything I am going through right now ~ giving in to something heavenly ~ something bigger than myself ~ something bigger than me.

Sanctus Real - Whatever You’re Doing

It’s time for healing, time to move on,

it’s time to fix what’s been broken too long

Time to make right what has been wrong;

it’s time to find my way to where I belong

Chorus:

There’s a wave that’s crashing over me, and all I can do is surrender

Whatever You’re doing inside of me

It feels like chaos, but somehow there’s peace

And it’s hard to surrender to what I can’t see,

but I’m giving in to something heavenly

Time for a milestone, time to begin again, re-evaluate who I really am

Am I doing everything to follow Your will or just climbing aimlessly over these hills?

So show me what it is You want from me I give everything – I surrender

Chorus:

Time to face up, clean this old house

Time to breathe in and let everything out that I’ve wanted to say for so many years

Time to release all my held back tears

Whatever You’re doing inside of me

It feels like chaos, but I believe …

You’re up to something bigger than me

Larger than life, something heavenly

Whatever You’re doing inside of me

It feels like chaos, but now I can see

This is something bigger than me

Larger than life Something heavenly, something heavenly

Time to face up, clean this old house

Time to breathe in and let everything out

Brain Tail Comparison

I am hoping that I will wake up one day and forget about my Chiari and just get on with the rest of my life. But then I look at these MRI pictures of my brain tail and can't help but see that I still have a significant herniation. The MRI pic on the left was taken on May 5, 2008 and the one on the right was taken in April of 2007. When I examined the pictures side by side I can see that my herniation has shrunk maybe a millimeter. You can click on the picture and see the zoomed version. The bottom of my cerebellum seems to be at the top of my C2 instead of at the bottom of C2.

So ~ here's to praying that my brain tail will leave me alone and just learn how to co-exhist with me. Random note ~ I have got to have the weirdest shaped head ~ I'll be I would be good at carrying things on my head!

The Ball Is In My Court

The past several days have been a whirlwind and I apologize for not blogging sooner. Last Saturday we drove down to Brooklyn to celebrate my nephew's first birthday. After a long day of fun we drove back home and then packed bags and headed back to Brooklyn on Sunday afternoon.

Monday morning began with an hour spent in a MRI machine to get a look at my brain tail. We had seven hours to kill until my neurologist appointment at TCI, so we looked on the map and found a state park nearby. The sun was shining and it was a good day to spend some time outside. We picked up some sandwiches for lunch and headed over to the park. After a little hike in the woods and a brief encounter with a ribbon snake we ate lunch and enjoyed the day for a while.

Then we headed over to TCI and waited and waited for our appointment. So the verdict on my health ~ I am healing up nicely from the tethered cord surgery. I can expect about a year until my back feels 100% again. As far as my MRI films go, my herniation now is about at 12mm ~ which according to my calculation is 2 mm more than it was last April. I am still shocked when I look at the MRI scans of my chiari ~ there is brain matter stuffed into my spinal column like a tightly fitting cork ~ it's just not right ~ it shouldn't be there! My brain stem measurements had decreased a bit which is great news and probably the reason why a lot of my symptoms, especially vertigo, have vanished.

So what's the prognosis for a decompression surgery? Well, basically the ball is in my court. I am definitely a candidate for surgery, but it's my decision when to have it done. (Is there ever a 'good' time to have brain surgery???) I should feel tremendous relief, but I don't. Why? I am still experiencing crushing Chiari headaches, blurred vision, my neck is still popping and cracking when I look from side to side. So I guess I have resolved myself to waiting ~ wait and see what happens. I don't understand why I have come this far with my struggle to have it fizzle out at the end. I am completely prepared for brain surgery but for reasons beyond my comprehension it's not in God's plans for my life right now. ~sigh~

Good Mail ~ Bad Mail

I got a couple of letters in the mail today ~ two from my insurance company and one from the records department from the hospital where I was detethered. I always get a sick feeling in my stomach when I see letters from the insurance company. They were my giant to slay for so long ~ it's hard for me to have a complete attitude change towards them now that they are supporting me 100%. Actually ~ the last conversation I had with my out of network coordinator was almost comical. I really had to keep myself from laughing out loud on the phone.

I had called to get pre-authorization for numerous MRI's, a CT scan and a neuro-followup appointment in May. Her reaction was comical ~

"Certainly ~ just let me know what you need and I will write up the auths for
you. You know, people who come to us with Chiari (she pronounced it like
'chair-y') ~ we always send them to TCI ~ they offer the
most excellent treatment there!"

For those of you who have been reading my blog since the beginning, you know that it took a year and a half to get approved to go to TCI. I clearly have educated the insurance company and have hopefully paved an easier road for others in their journey to get to TCI. Anyway ~ the letters I got from the insurance company were approved auths for my appointment in May ~ yeah. It's so nice to get pre-authed without the whole red tape drama!

About 3 weeks ago I had sent a letter to the hospital requesting copies of my medical chart so that I would have the medical terminology for the findings during the surgery. Today the letter I received told me that in order for them to release my files I would need to send them payment for $123.55! SERIOUSLY ~ these are MY records ~ do copies and shipping really cost that much! How big is my file?! Anyway ~ maybe I will save some $$$ and see if they will let me read my file while I am in town for my appointment. What a conspiracy!

When I woke up this morning I was rudely reminded that my brain tail is still alive and kicking ~ me in the head! Go figure ~ there's a low pressure front moving in bringing frozen precip and rain tomorrow! Wish I didn't have those friendly reminders ~ I would like to just forget about my Chiari all together! The prospect of brain surgery still weighs heavy on my mind, but truth be known, even if I do have surgery there's no guarantee that I will not have any more headaches. I will have some peace of mind after my follow-up visit at TCI in May. Sigh ~

Be Still and Know That He Is God

Truth ~ truth finds a way of making it's way up to the surface. Truth wants to be heard. So truth be told ~ I have felt the effects of the brain tail creeping back ~ slowly oozing like toothpaste being squeezed from it's tube. Back of the head headaches, sounds are less and less tolerable ~ the brain tail barometer seems to be in tune with the low pressure fronts again. These are things I can live with ~ at least I don't have vertigo, numbness/tingling in my legs and arms ~ but nevertheless ~ I am feeling unsettled!

These symptoms do not make me a happy camper ~ I want to be focusing on recovery ~ getting stronger ~ moving forward. A part of me is kicking myself for allowing myself to believe in the unbelievable ~ to totally dismiss the inevitability of brain surgery. More than anything I am disgruntled with God for not making my path clear!

This morning at church I was reminded that God's timing is always perfect. Although I may never be able to understand why ~ time and time again I look back and see that His timing is perfect. Why didn't I go ahead and get the decompression over with on March 7th? The Surgeons wanted me to wait and see what effect the detethering has on my brain tail. Fair enough ~ they are the experts! Why have I been given this time to rest up and heal only to have brain surgery scheduled later this year? I don't have any answers right now ~ at least until I have new MRI's done of the brain tail in early May.

I have had some conversations with God today ~ I let Him know that I am impatient ~ I want to know some answers today ~ right now. I have been humbled once again by the fact that I can't possibly know what's up ahead when I have placed my life in God's hands. I trust His timing ~ my job is to be still and patiently wait..

Be Still & Know ~ Steven Curtis Chapman

Be still and know that he is God

Be still and know that he is holy

Be still oh restless soul of mine

Bow before the prince of peace

Let the noise and clamor cease

Be still and know that he is God

Be still and know that he is faithful

Consider all that he has done

Stand in awe and be amazed

And know that he will never change

Be still Be still and know that he is God

Be still and know that he is God

Be still and know that he is God

Be still. Be speechless.

Be still and know that he is God

Be still and know he is our father

Come rest your head upon his breast

Listen to the rhythm of His unfailing heart of love

Beating for his little ones

Calling each of us to come

Be still Be still

Shadow and Light ~ Side By Side

The last couple of days have really been challenging for my brain to figure out where I am. According to the calendar, I was scheduled for my brain decompression yesterday and yet I wasn't there, I was home. I am thankful for answered prayers ~ for evading brain surgery for now, but still feel like I am waiting for that second shoe to fall. The facts are that I still have my brain tail and I just have to be aware of my symptoms.

For the most part, I am pretty symptom free, but this week I have had an occasional Chiari headache ~ not unbearable ones ~ but back of the head headaches. This past week I was probably the most active I have been since my detethering. I walked at least 4 times this week for an hour at a time and have been working out on pully machines at the gym to gain strength in my back.

On my walk on Thursday morning, the sun was shining brightly. As I was walking, with my back towards the sun, I noticed my shadow ahead of me. She was keeping time with my pace, but always ahead of me. Reminded me that shadows are evidence of sun. When I turned around to walk back towards the car my face was illuminated by sun rays ~ no more shadows ~ amazing how the sun can be just an one-hundred-eighty degree turn away!

One and Two Weeks Post Op

I have had many a request for pictures of my surgery site ~ so here they are! I have posted the photo towards the bottom of the post for those of you who are squeamish ~ I promise ~ all things considered the pics aren't bad at all! My question is how long is it going to take to wash off the pen mark they made on my back???

Just in case you are not quite sure what you are looking at, the photos are of my mid and lower back. Even after all the links and lengthy info regarding the surgery many of you still thought that the surgery site was in my neck ~ true story! I am amazed how the detethering has alleviated almost all of my symptoms ~ and I am still in awe of the brilliance of the TCI docs. My next step is figuring out how to tactfully write a letter to my four local neuro-surgeons to let them know the outcome of my surgery. Mostly I want to educate them on the correlation between the tethered spine and the brain so that other Chiarians like me might avoid brain surgery!

I am still trying to ease into the whole 'recovery ' mode of resting and relaxing. I am off all pain/muscle relaxant meds and yet every night I am having these uber intense dreams with intricate and complex plots. I wake up exhausted from my dream journeys. At first I attributed the dreams to the Morphine ~ but now that I am not taking it anymore I am perplexed. Maybe since my brain tail has plenty of CSF it's going into overdrive ~ anyone out there have similar experiences?

Walk By Faith

I was under the impression that after surgery the path would be clear ~ I was so wrong. Just a little reminder to me that Christ is in charge of my life and not me. I couldn't be more confused ~ it may be because of the haze of morphine ~ but still ~ what am I supposed to be doing right now?

TCI told me yesterday that I should expect to be out of work for a total of THREE MONTHS! Are you kidding me? I am already frustrated to be trapped inside of a weak body ~ my mind getting more clear every day and I have delusions of grandour of me running again ~ just going to have to hold onto that dream for a while. Meanwhile ~ I have to keep reminding myself that I have to continue to walk by faith and my path will be revealed.

Walk By Faith ~ Jeremy Camp

Will I believe you when you say
Your hand will guide my every way
Will I receive the words You say
Every moment of every day

Well I will walk by faith
Even when I cannot see
because this broken road
Prepares Your will for me

Help me to RID my endless fears
You've been so faithful for all my years
With the one breath You make me new
Your grace covers all I do

yeah, yeah , yeah, yeah, ya

well i will walk by faith
even when i cannot see
because this broken road
prepares your will for me

Well I'm broken- but I still see Your face
Well You've spoken- pouring Your words of grace

Well I will walk by faith
Even when I cannot see
Well because this broken road
Prepares Your will for me
(Repeat)
Well I will walk by faith
Even when I cannot see
Well because this broken road
Prepares Your will for me

Hallelujah, hallelu


I will walk by faith, I will walk by faith,
I will walk by faith
I will walk by faith, I will walk by faith,
I will walk by faith
I will walk by faith, I will walk by faith,
I will walk by faith
I will walk by faith
I will walk,I will walk
Faith
I will walk, I will walk by faith

This broken road bears your will for me ~

Disbelief

I am finding myself shaking my head from time to time during the day ~ where am I? Did I really just have spinal detethering surgery a little over a week ago? Did the Giants really win the Super Bowl? Maybe it's the effect of Morphine and muscle relaxants that are warping my mind.

The first couple of days after surgery were really tough ~ but sage advice from fellow Chiarians who have been detethering ~ the more you move the better you will feel ~ proved to be absolutely true. I am really looking forward to getting my stitches removed tomorrow morning ~ I am giddy with the idea of taking a shower on Wednesday, February 13th ~ maybe that will help me feel more human and grounded.

I may be pushing my luck ~ and I am known to do that from time to time ~ but today is my first day without morphine. I am hoping I can substitute Tylenol or Advil and get the same relative pain relief.

I feel like I am in this weird time warp vortex right now. I still have brain decompression surgery for March 7th on the calendar. I am supposed to be in Long Island a couple of days before surgery for MRI's, doc appointments and invasive cervical traction ~ sounds like an awesome vacation ~ right?!? But, wait, Dr. M told me to wait three or four months and let's see what happens. What do I do with that information? Can I have that in writing!! I fear that I will be forced to go ahead with the next surgery even though I might not need it.

My plan is to wait another week and then call TCI and see what my next step should be. So far, I haven't had one Chiari symptom since my surgery ~ I believe in miracles ~ If my brain tail decides to crawl back up into it's cranial compartment this could be the biggest miracle of my lifetime!

All Things Work Together For Good

So ~ last night I got to sleep in my own house ~ albeit on the Futon and not my bed ~ still slept like a baby all night long! It feels great being home and almost a week post-op. John washed my super dirty hair last night ~ feel so much more human! Still can't take a real shower until Feb 13th. Getting my stitches out on Feb 11th.

The drive home was pretty uneventful and relatively quick. I was pretty drugged up with pain killers and muscle relaxants which made the ride bearable. I don't really know what to do with myself now. I don't do the whole rest and relaxation thing very well. I am exhausted tonight ~ missed my afternoon nap ~ hoping for an early bedtime.

I don't want to get my hopes up too much, but seriously, I haven't had any headaches since surgery ~ my neck and shoulders don't feel as tense ~ my neck looks longer ~ could I be cured just by one surgery??? I will give it a couple of weeks and hope to get off the pain meds before completely weighing in on how different I feel.

Pain Management and Hoping to be Discharged Today

Well ~ the word around here is that I am going to be discharged today! We will probably bunk at the Variety House tonight and head on home on Wednesday so that I am sure I can manage my pain.

They took the pain pump away yesterday ~ what a difference it had made. Nice not to be hooked up to anything anymore, but I am missing the constant flow of pain medication.  So ~ I am using the breathing techniques I learned in lamaze classes ~ taking baby steps in the hospital halls ~ drinking lots of fluids.  

I am looking forward to going home soon ~ will be nice to have all the creature comforts of home.  I feel so relieved that the girls have been well taken care of by my Mom ~ she has kept them busy with activities and has been helping them to understand that I will not be up to full mommy strength for a while.  (Holy heat ~ the hospital zamboni went by my room a second time!)

Back to Mom ~ as an adult, it's hard to admit that I still need my Mom there for support ~ need her to hold my hand when I am nervous in the pre-op holding room ~ you get the picture. Just having Mom around makes me feel better.  The problem with that this time is that I didn't realize my need until it was too late for her to drove down to Long Island. So Mom ~ I definately want you to be here with me for the next surgery.

So ~ here we sit ~ John and I ~ waiting for the surgeons to make their rounds ~ the ticker tape parade will be in full swing by 11 am this morning in Manhattan.  Thanks again to everyone for your prayers and support ~ they have really meant a lot to me and have helped me to push forward and through the pain.  Especially thanks to John ~ you are my Knight in shining armor ~ true story ~ Thanks for keeping me hydrated and waiting on me hand and foot. Love you 

Eye of the Tiger

Time to put on my game face ~ take a deep breath ~ one foot in front of the other. There's nothing like an unexpected obstacle right here at the home stretch. I am fighting a cold ~ not willing to let it take me down and delay my surgery. Taking Vitamin C by the handful ~ tomorrow is another day ~ I am convinced I will feel like a healthy person when the sun comes up.

Headed south tomorrow morning ~ taking a day to relax and prepare for pre-op stuff ~ Prayers are already being answered ~ we got word this morning that we got into the Variety House ~ one less thing to worry about. Hard to believe that I am officially on medical leave now. Check back in for updates on Friday. Worshiping Him in the waiting ~ Operation Covertly Invisible Tethered Cord commencing in 2 days ~

Let's Call This One A Speed Bump

Call me crazy ~ but I really don't see what the big deal is! This first surgery is just like a kinda big speed bump compared to the big bad brain surgery. A "warm up" to the big dance ~

This weekend was filled with time spent with friends. Walks ~ meals ~ movies ~ prayers ~ and lots of phone calls. I am profoundly amazed at the outpouring over Lil ole me ~ Seriously ~ thanks to all of you who have reached out to me ~ feels good to be facing surgery knowing that there are a lot of prayers being lifted up for me.

My last day at work is tomorrow before my extended leave for the Chiari Spa! Feels so weird tying up loose ends ~ passing the baton. I am so blessed to work with some amazing people ~ they were there when the now infamous phone call came in ~ breaking the news to me that I had something in my brain called a Chiari Malformation. They have seen me at my worst and yet they can still joke around with me about blaming everything on the brain tail. Seriously ~ I love all of you guys (and girl) ~ your support has meant the world to me and has really eased this journey for me. Even though I'll be out of the office I will be lurking on-line ~ I expect a good flow of IM's from the 'green room' team ~ or I will threaten to send you guys left over brain tail bits and pieces ~ TRUE STORY!

Gotta finish up packing tonight ~ how do I pack for a stay at the hospital ~ kinda silly if you ask me. I am sure I will be wearing the uber luxurious hospital gowns the entire time I am there!

B.C. ~ Before Chiari ~

Yesterday I was reading a blog update from another Chiarian and they referred to their life before chiari as "B.C." ~ so I guess that makes my life after decompression as "A.D"! Because truth be known, I was born with my brain tail ~ it's been there all along it just took me almost 36 years to discover the troublemaker.

I was trying to remember the most recent time I felt at peace with myself ~ when I was sure that my smile was not lost in the depths of my soul. Cape Cod ~ Summer of 2005 ~ It was our first of many annual summer vacations ~ I was overwhelmed with the beauty of the ocean on the East Coast. I distinctly remember the next year when we returned ~ I had a headache that was present the whole time we were there ~ something was just not right ~ I would discover my Chiari only a month later.

I know in my heart that "A.D." I will be back on the road to finding my smile again ~ finding peace and wholeness within myself ~ strength ~ renewed hope ~ a zest for life. You see ~ right now I am just holding on ~ taking one step at a time ~ or the enormity of what is just around the corner will consume me.

More Ducks in a Row

Things seem to be coming together and I checked some items off my 'To Do Before Surgery' list this weekend.

Get all short term disability paperwork in ~ check

Throw second successful slumber party ~ check

Watch the greatly anticipated movie, Cloverfield, ~ check (BTW ~ I don't recommend Cloverfield for anyone who has Chiari ~ I knew going into the movie that it was going to make me really dizzy and the possibility or barfing halfway the movie was imminent ~ but I closed my eyes a bunch and looked away from the screen and managed to make it through to the end. Thanks to DC and SC for providing the essential Jujyfruits that kept the nausea at bay!)

Watch the NY Giants secure a spot in the SUPER BOWL ~ check!!! Who wants to watch the Super Bowl from the comfort of a hospital bed?? Me ME me!! This will definately be a super bowl I will never forget.

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

Deep Inside This Armor ~ The Warrior Is A Child

The last couple of days have been really rough on me ~ nausea /vertigo/ headaches / trouble breathing / insomnia ~ good to be able to see the first surgery on the very near horizon. I got FOUR letters from my insurance company today. My heart instantly started to race as I was filled with anxiety ~ will they pull the rug out from under me just when I thought I was actually going to have my surgeries done?

My fears were instantly quelled as I read them one by one ~ approved, 3D CT Scan, approved inpatient surgery 2/1/08, approved outpatient procedure 3/6/08, approved inpatient surgery on 3/7/08 ~ all signed by the same medical director. If I could, I would drive over there right now and give Mr. Medical Director a huge hug!!!

So ~ getting my ducks in a row ~ results from the echo cardiogram were normal. Taking it day by day ~ drawing strength from my faith ~ daily fighting battles against the doubt and fear in my head.

The Warrior is a Child by Twila Paris

Lately I've been winning battles left and right
But even winners can get wounded in the fight
People say that I'm amazing, strong beyond my years
But they don't see inside of me, I'm hiding all the tears

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and cry for just a while
Deep inside this armor - the warrior is a child.

Unafraid because His armor is the best
But even soldiers need a quiet place to rest.
People say that I'm amazing - never face retreat
But they don't see the enemies that lay me at His feet.

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and look up for a smile
'Cause deep inside this armor

Deep inside this armor
Deep inside this armor
The warrior is a child.

Reflecting

A few months ago I had the pleasure of meeting a fellow chiarian for breakfast. We had exchanged e-mails ~ shared our chiari journeys ~ actually meeting her face to face was like being reunited with an old friend. Even though she has already had her surgeries and is way ahead of me in her chiari journey, we share a kinship ~ bonded by the brain tail.


One of the things that she said to me that has stayed with me is the fact that in the months prior to her surgery ~ she can't remember anything in that time period. I am finding the same is true for me. I seem to be on auto pilot ~ plodding through each day ~ and yet time seems to be flying by at warp speeds at the same time!

I am trying to stay focused on the present so that I am here in the now and not in the past or the future. Searching for that inescapable peace and serenity that comes from knowing that everything is going to turn out fine ~ fighting the urge to grab my passport and get the heck out of dodge! But truth be known, the brain tail goes wherever I go ~ serenity now!

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!