The storm of Chiari

When the storm comes and hits you and your family the seasons become one, the days become one and so do the years. We are one out of many family’s that Chiari and Syringomyelia has come in and affected. With pain, confusion, hurt, and disappointment. It is hard to see a positive side to all of this and sometimes there may not be one. Except for how you live your life and help others. In our home it consist of my husband needing to get me dressed after a seizure and most of my day not feeling well and that he has been there for me like that for almost 3 years now but no one else see's that. For our children they seem well and healthy but they are not and most days are sick, fighting Chiari as we do or a seizure one of them have had.

On the same day I have to try and answer to my 15 year old on how and why she has to go through this and not have a normal teen life. With my daughter the surgery was worth it and she has expected that but other have not. It is never easy when she just wants the pain to go away. That's one of the hard parts about being a parent, making those decisions and hope it is the correct one.

Our son is 10 years old and will be having Chiari surgery soon, he has epilepsy and other health issues. Even though I have has the surgery and so has our daughter it is never a easy thing. Some days it seems harder and you want to have a screaming match with the “why's”. 

So where is the positive side that we always find and flip? Well I think the first thing we need to make sure people know and understand that this is not a rare disease and that it is also a serious one. Chiari ans Syringomyelia is mostly just misdiagnosed. It's time for our loved ones to step up that have not and be there for all of us. We did not make this choose and our family's and friends should be there. If they are not there it is not an excuse, there is no reason it is a choose they make and it is selfish and mean. I was talking to one of our Chiarians awhile ago who will had surgery and like me one of her sisters do not support her. Trying to understand there action or reason with them seems to only hurt us. I know this may not seem like my normal article but this is something I hear from every Chiarian I talk too and we go through this in our life and watch it in my daughters and son. This is what I say to them “ I love you but I don't respect you. I'm here and need you and may always need you but I know in my heart I would never do this to you. So I have to say good bye because it hurts me more physically and I have to make sure I am not making my self sicker. I love you .”

The positive side to this is that you have to put your self first, your children first, loved ones that are sick and everyday even the bad days should be treated like your favorite book that has a new chapter you have never read. The positive is we see the love and in brace it we see the good and hold onto it. We see the wrong and turn it to the good because we have a purpose. Once you walk into this storm you treasure ever blessed moment even if your sitting outside watching the wind blow the trees or sitting on the coach just watching your loved ones, “or that good day that you go out and in brace the world that is waiting for you. You never know who you will met”. My name is Heather I and both my children have Chiari I am a Zipperhead but please hear me when I say I'm NOT a number or just another face we hurt, we like to smile and laugh also just like you. We are humans and we want to be treated as humans.

I want to thank every person that holds our hand or lets us be us, our dear ones that look at us as us and not a sick person, I want to thank all of you that have stood by our side and not left, the love you give us makes us give more. We love you so much Thank you

I send love and support to all. 

Heather 

Founder of Zipperheads for Chiari.

This article is based on how I feel and what we have go through in our home. If you have medical questions please all your doctor there is no doctor on this site. We are here to send love, support all, Chiarian, Zipperhead, Syringomyelian, Family and loved one and anyone else that is sick. We are called Zipperheads because of our scare after surgery. We except all human life with love.