I am 2 years out from surgery and my daughter is going to have surgery for her Chiari so I wright this as a Zipperhead, Chiarian and a mother. First it is the scariest thing to go through and when I say go though it does not stop after surgery. Because there is no cure so we are always waiting to see what will happen next. It is harder and more scary seeing your child go through it, cause you can't take it away. I can not even imagine not having Chiari and my child going through it. And this is why, because we are all different and it is so hard to understand if you do not have Chiari.
The other issue is the relief, guilt we have relief because we are not crazy, scared, sad, disappointed on how we are treated by the ones we are not expecting and the guilt of what we put all are loved ones through. The other one is when we have Chiari and so does our child we feel guilty because no matter what we feel responsible. And some where in all those emotions we are trying to hold on educate and stay strong all at once. Chiari is so hard to explain let alone trying to figure out what it is doing to our bodies as Chiarians.
So with that being said what can we do and learn? Well first, we need to learn about our body. Where is Chiari and what is it, where is it and what is around it. We need to educate our self's on our anatomy. What is a Brain Stem and Vegas Nerve??? What and why do we need Spine fluid. The more we learn the more you will know if you have the best care and you will know if your doctor knows what he is doing. Learn your Spin and brain learn your nerves system. It will help you to be a better advocate for you or the loved one who has Chiari. Also have a medical journal and wright in it every day.
I decided to make Zipperheads for Chiari a positive place because the more negative I am the more sick I am, the more stress I allow myself to go through the more I suffer not others, but me. I can't allow that, as a Mother, wife, sister, friend, Chiarian and a Zipperhead. It is hard and yes I do have bad days “but” the good days and SO good and so worth it.
I have learned with Chiari to be still, listen, have patents, forgive, let go, expect myself and I'm working on trying not to please everyone. I take out of Chiari what I get out of it and not what it has taken from my life. I am not perfect and I do still wish I was better and we all had a cure. I have the days when I want to scream and cry. We all do we are in pain and most of us our broke. But we are not alone. We are never alone and we can always send our love and share our story’s. As a mother I wish my baby did not have it and I want to take it away and I can't and that is the hardest part for me with Chiari. As a Chiarian I am a Chiarian but before that I am me.
For all of you, I send my love and support always.
You are never alone. <3
Heather
Founder of Zipperheads for Chiari.
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