Great Lengths

My eldest daughter Hannah has been growing her hair out with the goal of donating her hair. I think she has been growing it out for at least a year now and she is only up to about ten inches. Cheerleading is only 4 months away and she wants to have enough hair for a ponytail. If we waited until she had the required 12 inches for Locks of Love it might be September and the hair might be completely chlorine damaged from a summer spent in the pool!

This past weekend we found out about Pantene beautiful Lengths ~ they only require a minimum of an 8 inch pony tail so we decided to finally get her hair cut. (I will post a picture soon.) "Pantene Beautiful Lengths was created to bring people together to share their strength and donate their beautiful, healthy hair to create free wigs for women who have lost their hair due to cancer treatment." It takes about 6 pony tails to make a complete wig.

Hannah says that new haircut is very fierce and stylish ~ we think she looks a bit like Katie Holmes! By donating her hair, she feels like she's made a difference in the world and she hopes to encourage her friends to donate their hair some time soon.

Extreme Makeover ~ The Carter Family

Mark your calendars ~ Extreme Makeover Home Edition is re-airing the episode about the Carter Family on April 6th. The day before my tethered cord surgery I met Julie Carter at the Variety House ~ she is an amazing woman! Her passion for helping people with Chiari is incredible. If you didn't catch this episode when it aired in October be sure to watch it on April 6th.

"Carter Family" -- The Carters of Billings, MT were surprised to receive the news that Ty and the gang will transform their current home of a chicken coop into the home of their dreams in just seven days on "Extreme Makeover: Home Edition," SUNDAY, APRIL 6 (8:00-9:00 p.m., ET) on ABC. (Rebroadcast. OAD 10/21/07)

Julie Carter suffers from a genetic disorder known as Chiari Malformation, as does her 21-year-old daughter, Jade. She fears her other two daughters may have it as well. Julie and Jade have had several brain surgeries costing over $500,000. This condition has over 85 symptoms -- which makes it very easy to misdiagnose -- and causes depression and chronic fatigue. Julie has made it her passion to spread awareness of the rare disorder and has become a hero to thousands. She writes a monthly newsletter to Chiari patients, providing them support, compassion and valuable information, which she assembles and distributes with her own money. She also started Chiari People of Montana, a support group. With her success, she was recently asked to run the first Chiari Malformation chapter in Billings. This is a bittersweet honor, since her makeshift office is hardly suitable for getting out her newsletters.

Julie is so consumed with helping others that she rarely thinks of her own living situation -- which is a refurbished chicken coup -- but the astronomical medical bills are a regular reminder that there's little chance their house will ever be fixed. From the outside their home looks like a long warehouse; the exterior walls are buckling and some of the windows are cracked, which makes it tough in the brutal Montana winter. They've made the best of the interior, but the cracks in the floor and the unusable space makes heating the place expensive. It's now up to the design team to get this family out of the chicken coop and into a healthy house, and to reward this selfless mother with a state of the art facility where she can run the Billings chapter of Chiari. While Ty and the designers, local builder Jeff Junkert Construction, Inc. and hundreds of volunteers and workers are rebuilding their home, the Carter family will go on vacation at the Hilton Times Square in New York City.

Source: ABC

Proper Introductions ~ Captain

As promised, here are some pics of Captain Kirk ~ he looks so sweet and innocent when he's sleeping. When he's awake he tears around the house like a freakazoid! Last night John and I were roasting marshmallows in the fireplace for smores and Captain decided to swat at the flaming marshmallows and got it all over his paws and whiskers! I will have to get some action shots of Captain and Belle playing chase and wrestling ~ they are best of friends now.

Today we are all home ~ planning on dying Easter eggs later today. A word to the wise, don't use a ginormous lobstah pot to boil eggs. The water has been on the stove for about 45 minutes now and it's still not boiling!

Illumination

The other day I was organizing some books in my bedroom and I re-discovered a journal entry that I had made after a breath work back in August of 2006. You can read more about what a breathwork is about in by clicking the underlined linked text ~ but basically it is a way of meditating deeply by taking in deep breaths which creates a dreamlike altered state. I have done several breathworks and each time I have breathed it has brought clarity and healing into my life. The last breathwork experience I had was full of profound messages that I stored away for another time. At the time I didn't know what the messages meant, but now, the messages bring illumination.

I won't go in great detail on my experience, but will share with you some of the profound messages I received. I am going to set up the scene ~ keep in mind that the breathwork is very dreamlike. My journey started out with me running across a desert somewhere in Africa. I was methodically running for a long time, across great distances all by myself. No fear ~ no pain ~ just a growing anticipation of where my journey would lead me.

Finally, I came to a circle of people holding hands ~ the circle opened and they let me inside. A pastor that I know who lives in Africa was there and he had a message for me. Words of wisdom followed ~ I was overwhelmed with tears as the words came to my ears ~

HEAL THE BROKEN HEARTED
LOVE WITHOUT CEASING
FOLLOW YOUR VISIONS
GIVE HOPE TO THE HOPELESS
GIVE FAITH TO THE FAITHLESS

The messages went on and on. I cried out,
"I am so small and only one person! How can I possibly help all of these souls?"
The answer was clear,
"You are strong, help one person at a time and don't ever give up!"
Such a daunting task, but I was fully aware that, yes, this was my calling.

These messages came to me probably in the first 15 minutes of my breathwork and 2 hours later I remembered everything I had heard word for word. Keep in mind that about a month later I found out about my Chiari Malformation. I was on the edge of a journey that would radically change the course of my life journey ~ what a journey it has been and it's far from over.

I have been incredibly illuminated by the messages I received two years ago ~ new life has been breathed into me and once again my mission is clear. I feel a profound calling to help those in need ~ to shed light into the dark corners in this big, bad Chiari journey. Clearly I am just one person in a sea of millions, but I want to help make the road a little less daunting for others that will find themselves on this journey. Thanks so much to you blog lurkers who have commented and sent me e-mails ~ you have given me validation that what I write is encouraging and helpful. Those of you who lurk and haven't reached out to me, know that I am just an e-mail away.

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

Fun With Friends

Last night I went our for dinner and a movie with friends. These friends of mine are part of the camping group that I camped with this past summer/fall. When two or three of us get together there is sure to be lots of laughing ~ good times.

We went to see Vantage Point ~ the movie was good but not what I was expecting. All I can say is that Dennis Quaid has fierce driving skills and he should definitely secure a part in the next Bourne movie!

Laughter has incredible healing powers ~ thanks, S & L for making me feel more human than I have felt since surgery. Can't wait for our next caper ~

The Captain

Last week we adopted a 6 month old kitten ~ this is my crack pot idea of a diet and exercise plan for our over weight Miss Kitten Britches (AKA Bellikins). The kitten was already named 'Kirk' for the famous Captain Kirk from Star Trek. He has a very bold personality and is always exploring wherever his kitten paws take him. We have decided to call him 'Captain', because it is more fitting than 'Kirk'. Also ~ Kirk is such a cuddly lil guy and he follows me around like a puppy dog when he's not engaged in a game of chase with Bellikins. I will post a picture of him soon.

Bellikins did not receive our new family member with open arms ~ she hissed, growled and snarled for about two days. He was so confused and couldn't understand why she didn't like him. Well, now, they are best buddies and are tearing around the house right now. Ahhhh ~ my exercise plan for Bellikins is coming to life ~ she's doing a lot of running around. But ~ here's the catch 22 ~ she's eating Captain's kitten food and he's eating her diet adult food!

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!

Psssst...I've Hijacked the blog again

Shhhhhhhh. It's Erica again. Lacie doesn't know I'm here so don't tell her.

March 6, 2008. Lacie was supposed to have her invasive surgical traction today. I am just so thrilled that she isn't under the knife right now I had to say it. :) And even if my little friend has survivor guilt, I'm pretty effin' glad she survived to be my friend and to be the inspiration she has been to so many.

Let her know.

Project Slimdown for Miss Kittenbritches

I found the LOLCats website last year and some of the pictures were priceless. The one on the left with the 'FAIL' caption had me laughing so hard that tears were streaming down my face and my co-workers seriously thought about committing me to the crazy farm!

So, being the curious creature that I am, I wanted to see if I could replicate the picture with my cat ~ seems easy enough ~ unwrap some cheese and drop it on the head of an innocent four legged bystander. To my surprise, Miss Kittenbritches just stat there and posed just long enough for the 'PASS' photo shoot!

Now that you have seen that my cat is up for new and exciting things ~ we have strict marching orders from the vet to trim THREE pounds off of her in six months time. The conundrum here is that unless there is fresh food in her bowl at all times she sulks around the house meowing and making all kinds of noises. This is particularly annoying since I am home all day with her. Anyone out there have any suggestions on how to make this dieting thing more of a game and less of a long drawn out starvation march????

I am hoping that once the snow melts that she will remember how fun it is to chase butterflies and chatter with the crunchable birds. Of course, a kitty tread mill would solve all of our problems ~ I will keep you posted on her progress ~ 16 pounds ~ looking for that 13 pound trimmer version of herself. Goodness ~ I think she weighs more than my 10 month old nephew!

Survivor

What does it mean to be a survivor?

noun ~ one who lives through affliction
verb ~ to remain alive; to carry on despite hardships or trauma; persevere; to live; persist; to cope with a trauma or setback; to outlive

Considering the definitions above it's safe to say that I am a survivor. I can add 'spinal detethering survivor' to my growing list. But wait ~ since I have avoided brain surgery does that make me a 'brain surgery survivor?' Those of you who have had brain decompression probably totally don't agree with me at all ~ and I totally understand where you are coming from. It's a right of passage!

The old survivor guilt feeling is creeping back again ~ I know ~ it sounds narcissistic ~ but I know this feeling. I felt it when my brother died when I was two years old. Why was I left here on earth to live and he died? Then again I felt cheated when my labor/delivery of my first child ended in an emergency c-section to save both of our lives ~ again ~ I survived a near death experience ~ but felt cheated out of going through the whole natural child birth experience. That's a HUGE right of passage ~ I was up for the challenge ~ but God had other plans for me.

This brings me to today ~ it's been exactly one month since my spinal detethering. They knocked me out ~ opened up my back ~ exposed my spinal cord ~ detethered me ~ then I woke up. Alive ~ survived ~ again. I spent 17 months preparing myself for the decompression brain surgery that was scheduled for March 7, 2008. I was ready to hunker down and just muster through it all. Then ~ all of the sudden ~ my surgery has been canceled and I don't have any more Chiari symptoms! Just because I don't feel the effects of my dear brain tail doesn't mean it's gone ~ it's still there, but now it's fully hydrated and happy. My brain tail has received a last minute stay of execution from a call from the governor ~ so the brain tail has survived a near cauterization! Survivor

You can dismiss my post as the rambings of a fully hydrated brain tail ~ me, I am pondering my responsibilities as a survivor and how I can give back others who are going through hardships and trials.