I saw a movie preview for the upcoming release of Extraordinary Measures.  Its a new movie with Brendan Frasier and Harrison Ford about a father who raises money for a researcher to finish his research in an effort to help cure his two dying children of an incurable disease.  On the trailer was the phrase:

“Don’t hope for a miracle… make one”

I think this is how I live my life.  Some might find it “un=biblical”.  For me, its what I believe in more than anything in the world.  I believe that sometimes, instead of HANDING us the product (miracle), God hands us the TOOLS to make it happen.  Look at it this way.  Say God has hosted Thanksgiving dinner every single year and finally he says… I am going to buy the turkey, the stuffing, the cranberry sauce, the green beans and onion straws but YOU have to cook your own.  He still PROVIDED for us … did He not?  But what He provided were the TOOLS to make it happen.

I believe in divine intervention.  I believe that God has a purpose for EVERY person and that their lives will NOT end before their purpose is fulfilled.  For some, their purpose is to live a long life.  For some their purpose is to become someone great who changes the world.  Some will become famous to many and some to a very few.  For some, it is to become someone great as parents of extraordinary children.  For some, their purpose is FULFILLED in their death and for some in their life.  At any rate this life is simply a means to an end.  A GLORIOUS, amazing, happy ending.  I know that people cry at funerals but I truly hope that instead of even HAVING a funeral for me, that my kids will take all that money and go to the beach and sink their toes in the sand that I so very much love.  I hope that they will sit hand in hand on that Alabama coast line and watch the sun come up and feel the way I felt this summer as I watched my husband, father and son fish in the surf as the sun rose over the horizon.  I hope that my kids will donate any money I have left to a children’s hospital because I think there is something so cruel and wrong about a child’s death no matter their purpose.  Most of all, I hope that I die, old and gray, wrinkled and well loved by my family and by the years that have aged me so entirely.  I hope that I die long after I meet my grandchildren and THEIR grandchildren.  That is HOW I intend to die.  Happy, healthy and in a LONG time from now.

So… I have made peace… with life… with death… with God… and with my diagnoses.

I know, that my body is getting tired.  I know that my brain is overworked and is being literally “fried” by pressures being put on it.  I know now, after this trip, that my brain is deteriorating and it is doing so, quickly.  I know that I will likely need to make a decision soon.  I will never be ready to decide to have someone hack into my skull but I will go at this surgery with everything I have.  Just as I always did for Kyleigh, I will not go down without a fight (or under I guess is a better way to state it… get it?  Under anesthesia?   LOL Get it?  Okay… maybe I am the only one who thinks its funny… but I have to laugh or I would cry).  After this week I realized that its not okay to be in pain everyday and merely exist.  Its not okay to go for days on end without sleep.  Its not okay to NEED pain meds to be functional.  More than any of those things, there is HELP and there is HOPE.  I had heard from a few in the Chiari community that they were not fans of Dr. Benzel but for me, I think he is just right.  We had a good honest talk with him and he gave us a good level headed opinion.  His opinion was, he needed more answers.  We were 100% with him.  It totally blew me away that here in Kentucky the doctors basically told me, either take your meds and shut up or have the surgery and shut up.   I just think that there are always MANY ways to skin a cat.  You have to FIND the right one for you.  I firmly believe that I could care less what the person’s “ranking” is or which hospital they are at.  If they believe in me, are motivated to find help for me and are able in their skills to carry out their plan… that person is just perfect.

For me this past week was sobering.  I like to fight the good fight and “never let em see ya cry”.  I hurt more than I allow people to believe.  I am tired to the point of exhaustion most days.  Some days I wonder if this is all life has to offer.  Some days I know that I don’t want to live “this way”… not in pain and with no energy.  I feel like a shell of “me” most days.  Its sometimes an “out of body” experience.  I used to be the person who could see “the wall” coming and push on through.  Sleep, motivation, brute strength, endurance.  No matter how much I felt like I “couldn’t” go a step further I KNEW I always could… I had that ability to push myself beyond my own limits.  Now….. it pains me to admit it…. but I just can’t.  Not because I don’t want to or don’t TRY but mostly because my body has given up on me.  It has put in its two week notice and raised the white flag of surrender.  And that sucks.  To be trapped in a body that cannot keep up with your mind.  Heaven forbid to have a brain that cannot keep up with its own functions.  Sigh……………..

I realized, after this trip, that I am worse off than I allow myself to believe.  I get up every morning (although late sometimes).  I take my 6+ medications and I function.  I smile.  I laugh.  I am still a mom.  I am still a wife.  I am still a photographer, a sister, a daughter, a friend.  I am still in love.  I am still happy.  I am still strong willed and opinionated.  And now I am also in pain.  constantly.

It started with a level 1-2… just that annoying pain that you think “oh man I need some Tylenol before this turns into some BAD”.   So… I took some Tylenol.  Then the 1-2 turned into a 3-4.  So I took some more Tylenol to the tune of thousands of milligrams… watching the clock every 4 hours to take more.  Then I started forgetting things, and dropping things, and blacking out.  I stopped driving and working and sleeping.  The pain slowly creeped up to a 5-6 and I sought medical help.  I went looking for anyone who could tell me WHAT was wrong and how to fix it.  I continued to smile and rare a few person knew how badly I was hurting daily.  I started to slow down.  I couldn’t move at my normal pace or push through “the wall” anymore.  I couldn’t push myself at all.  My body had had enough.  It turned in its two week notice sometime in the Spring of 2009.

By summer, my pain approached 7-8.  Nights brought lots of tears, puking, phenergran, heating pads, TONS of neck rubs and utter confusion.  Some people would call it “hopeLESS” I call it “hopeLOST”.  Because hope LOST can be FOUND again.  That is the beauty of it.  Hope LESS means that the hope has been subtracted or taken away from the situation and THAT will never happen in my life.  But these THREE remain, faith, hope and love.

Summer also brought confirmation that my fears were not unfounded. A diagnosis.  It was not any easier than any one that had ever been laid in front of me for Kyleigh.  But somehow, the tears that came for her, did not surface for myself.  I can’t.  I am THE MOM, THE WIFE… I don’t cry.  Not for myself.  The thing is, that I knew too much.  In searching for answers for Kyleigh I had collected lots of information on this “headcase” of mine.  For Kyleigh, we were able to stop the progression and maybe even REVERSE some side effects.  One of the top Chiari / Tethered Cord surgeons in America gave the opinion (for Kyleigh) that her Chiari malformation (hers is 5mm = ACM1) maybe have been exacerbated by the fact that her spinal cord was SO tight, it was literally pulling her brain down from her skull.  He was MORE than sure that if we stripped her filum (de-tethered her cord) that she would not only see and improvement in her TC symptoms but in her Chiari ones also.  He was right.  Kyleigh shows little to NO progression in the realm of ANYTHING neurological.  I am thankful for that.

For me… my issue has gone undetected long enough that I have sustained damage.  It is not guaranteed that even AFTER my surgery that any of these issues will disappear or even get better.  Its a 50/50 shot for me.  BUT… 50/50 is better than zero.  Why is my Chiari significant?  That is a question that Dr. Benzel set out to answer.  Here is the answer:

My chiari is likely causing brain stem compression.  Chiari is a congenital malformation that can be totally benign throughout your life.  It becomes dangerous when it starts to compress the brain stem.  This can lead to many things or ultimately death.  This is why, for me, there is a bit of urgency in our fight.

At this point we are 98% sure that this “road” will lead me to become a zipperhead. (not sure what the other 2% is… not sure I want to know!  LOL)

So… what IS a zipperhead?  Its the term affectionately coined by the Chiari community for the people who have undergone and conquered their Posterior Fossa Decompression surgeries.  The scar is a large lengthy scar that runs down the back of your head from the mid cranium to the base of your neck between your shoulders.  It very much resembles a “zipper” on the back of your head.  Thus the term “zipperhead”.  It is a badge of honor really.  I will be proud to wear that scar and hopefully when Kyleigh is old enough to understand, she and I will be proud of our scars together.

I realize that this will not be easy.  For me.  For my family.  For my kids.  But most of all for my husband.  He is scared and I know it.  Though neither of us will say it I know…  I know because…. I am too.  This will also mean some major life changes.  Our finances are skirting the edges of danger as it is with me being self employed in a horrendous market and having piles of bills from Kyleigh already.  We are getting ready to make some big decisions that will make both our childcare and financial situations easier.  Emotionally it will be easy and hard at the same time but we are ready.  We know that when this surgery comes I will need help 24-7.  Troy still has to work and do all the things he does to keep our household running but with the added strain of me being disabled for a bit.  It brings tears to my eyes thinking of all the ways in which I will watch the life Troy and I have made go away, but it will morph into a brand new one.

I have dubbed the year 2009 the year of Making Peace and the year 2010 will be the year of New Beginnings.  I am very much looking forward to January

So… that’s where I stand.  I still didn’t get around to telling you about our crazy week in Cleveland did I?  Well there’s always tomorrow… tonight I just needed to get all of this off my chest.

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