The Storm of being sick.

When the storm comes and hits you and your family the seasons become one, the days become one and so do the years. I am just 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. 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 will come see that but it never makes it easy or the pain go away. That's one of the hard parts about being a parent, making those decisions and hope it is the correct one. 

So where is the positive side that I always find and flip? Well I think the first thing we need to make sure people know and understand is 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 chose they make and it is selfish and mean. I was talking to one of our Chiarians today who will have surgery at the end of this month 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 I go through this in my life and watch it in my daughters. 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 but good bye.” 

The positive side to this is that you have to put your self first, your child first, loved ones that are sick and everyday even the bad ones 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 have Chiari I am a Zipperhead but please hear me when I say I'm NOT a number or just another face I hurt, I like to smile and laugh also just like you. My daughter Emalee is 15 yrs old she likes all the same things too she is not a number she a person first who likes to be silly. We are humans and we want to be treated as humans.

I send love and support to all. My name is Heather and I am the founder of Zipperheads for Chiari. This article is based on how I feel and what we have gone 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.

With all my love and support 

Heather