Zipperheads for Chiari

This is my story I'm writing as a person not the founder of Zipperheads for Chiari but as a person that has a whole family that is sick and the story needs to be told. Today as you read this there is no cure we are still ill and we are still fighting to hold on to each other so we feel like we still are apart of the population. Today I write from my heart because I can not hold back or be silent anymore. Please open your heart if you are not ill and just think for a moment what if this was my family what if it happened to me? What would you do?

I use to be a person that would walk and look up in a window and wounder what there life was like in that house, now I am that person looking outside my window wondering what there life is outside. This is my reality. I speak from my own heart and life it is not so for all but it is for me. Some will take this and think I'm depressed but I'm not this is my life my reality my world now.

I can remember the girl I was the one that went with the air, walk on the line to find out how far I could go. The wild girl, carefree, loving, fun, able to do anything with out my body telling me I can not. Some would say I was out of control, I would say I was unable to take someones word I needed to find out for my self. I always knew I was sick most would not listen so I stop talking. I always knew I was different but most thought I wanted more attention. They never wanted to know who I was or maybe they were afraid. I am me. My reality now is so far from before my surgery that I almost don't remember that girl so unafraid of life, how much I wish I had her still.

As the seizures take me I can not take control of my body I am removed as I lay and am engulfed by the pain in my spine and head nothing else is there no sound outside, no time nothing but pain that only I can feel. As I try to yell or scream I am told nothing comes out. I am removed. My husband waits as the seizure passes hoping this is not the one, the one that will put me in a stroke or my brain aneurism will finally give out. He watches helpless and hopes I am not lost forever. This is our reality our life.

Three years ago when my brain surgery was done for my Arnold Chiari Malformation we had hope that even though my body was so compromised I might get better that hope is slowly slipping away as I see it in my childrens eyes. All we can do is pray. This is our life not over exaggerated to be honest probably under. We live in a bubble of fear of illness. Little by little it takes more and more from us and we wounder when it will stop so we can breath.

Every time I go to one of my doctors witch is at less every 2 weeks it seems a new diagnoses is born in my list of things they can not fix but have no issue putting me though test after test that stress my body out that makes me suffer and makes me closer more radiation that I'm already over the level for. Now we see this happening to our 16 year old. The doctors I appreciate are the ones that tell me they will try and make me as comfortable as possible but this is what I am.

Many of us don't look sick and we have learned to enjoy moment to moment day to day. We smile and laugh. I have found the beauty in things I never did before and dedicate my life to try and help any who are sick or need support. As I have shared a part of our life with you I don't ask for anything but Please don't assume or make judgment on how are life is. Please don't say hurtful things, we do and can understand things and we do have feelings and PLEASE don't make my children or any children suffer because you may not be able to handle what we are given. The children do not deserve that.

Thank you for your time I am righting this from my heart too share a part of our life. You have a choice to be in our lives or not we don't. With love I give too u all of mine. Heather

This is not a medical site if you have medical questions please call your doctor.