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

Here Lizard, Lizard, Lizard

There was a passel of lizards in my dream last night ~ clearly they were trying to deliver a message. I looked up their animal totem meaning to give me insight and here is what I found.

• Lizard totem tells me to listen to my own intuition above anyone else's.
• It can show me how to break from the past by letting go of old ideas or negative behaviors which endanger my growth.
• Lizards are experts a subtle perception.
• Lizards reveal hidden messages through the dream state.
• They prompt the energy of change.

Ufff ~ what an intense message ~ looks like I need to start writing down my dreams no matter how bizarre they might be! Also, interesting that a lizard can lose it's tail and grow another one in it's place ~ hopefully I won't grow a brain tail again. Speaking of sleep and dreaming I am finally beginning to dream again and it's getting a wee bit easier to fall asleep. I think I just need to be patient with the whole healing process. I wonder how long it's going to take before my brain has found a happy medium.

“Mommy, I think God might be coming for me!”

The other night my eldest daughter, Hannah, woke up and stumbled downstairs and sat down in the middle of the kitchen. She had been asleep for about an hour already ~ she was shaking and out of sorts. She complained of a sore throat and had a belly ache. I berated her with questions, trying to figure out what was wrong and what kind of medication would get her on her way back up to bed.

I dampened a washcloth, put it on her head and escorted her upstairs. I tried to tuck her into bed but she was so distraught ~ tossing and turning. Finally I managed to convince her to take some Tylenol. Hannah is a super healthy kid. She doesn't have many experiences with fevers and chills, so when she doesn't feel 100% she completely freaks out. She was delirious with fear as I was trying to explain to her that she probably picked up a virus and her body was killing it with the fever. I tried to quell her fears ~ told her to relax and go to sleep and then she would feel better when she woke up.

The things she said while her little mind was trying to grasp what was happening to her were cracking me up ~

“Mommy, I am not as brave as people think I am!”
“I just don’t know how much longer I can take this. I am just a CHILD, Mommy!”
“Mommy, I think God might be coming for me!”

The next morning, Hannah felt back to1 00% and we had a good laugh as I repeated to her what she had said the night before. I am so thankful that she hasn't learned how to be a good patient ~ to surrender to the pain. I was thinking back to the day after my spinal detethering ~ hooked up to a morphine pump ~ breathing through the incredible pain as I turned over in bed. Without a doubt the most painful experience in my lifetime, so far, but not one day did I shed a tear. I was focused, surrendering to the pain ~ letting it swallow me whole. Deep breath ~ hang in ~ persevere ~ get through it. I know that the sun always rises after a long, dark night of hopelessness. I have to believe it with every cell in my body ~ it's the only thing that keeps me alive. I pray that my children NEVER get comfortable with pain ~ ever.

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!

Absence of Fear

Life is always throwing me something totally unexpected. On Thursday we had a snow storm blow in around 11am. Needless to say I was not looking forward to the long drive home. It usually takes me about 25 minutes to drive to work so I knew it would take me at least an hour to get home.

My first real experience with driving in winter weather was my senior year in college in West Texas. The weather there can change rapidly from sunny and warm to cold and icy. I got into an accident on black ice one night as I came upon a couple of cars that had already crashed. My options were limited ~ I could put on my breaks and hope to God I didn't hit the car that was rapidly getting closer or I could swerve and head into oncoming traffic. The wreck wasn't all that bad, I barely tapped the bumper of the car in front of me, but the out of control, sliding on black ice feeling has always stayed with me.

That being said, when the roads are slippery and if I slide just a little bit I am instantly covered with an overwhelming blanket of fear. So, getting back to my point, I was completely taken by surprise as I took note of how I was feeling while driving home in snow covered streets last night. I was completely calm, relaxed, just another drive home ~ slow ~ but not a big deal. This really took me by surprise and then I realized that fear is relative. Compared to brain surgery, I drive in the snow and ice is not such a foreboding task anymore.