To my loving family of Chiarians, friends, loved ones and the ones that are effected by any disease or illness in there life or a loved one, I want to right to you tonight and help you through the cloudiness of confusion. At first it is so important to try and understand why we are sick or why are loved on is sick we forget the person, the self, the life. Every moment we spend on why we are taking away from the now. There is time for the whys and hows - to the illness. It is important to have a self of positive release you must be able to not let it take hold of you like a ship in a storm with no way out. Yes, it is true we feel like this in many ways and we will have our ups and our downs but it is time to make the ups more impressionable in all of our lives. Some may be saying I don't understand, and I may not. I do not live in your life and everyone of us are different, that is the beauty of being human.
I would like to share with you that I am ill and so is my daughter who will be having surgery for her Chiari we think in January. I have also mourned my daughters fathers death and learned many lessons. The biggest one is to release the anger and receive the love. It is hard to be sick and it is hard to watch a love one go through it. Both ways it is hard. Some may hurt us and leave but at this point I have come to find they have done what they have needed to do or we have and we must move to the future. I have taken some time off Zipperheads for Chiari because of my daughter and my health, this was a very hard decision for me to make. It is often hard for me to be silenced and just be. I have always wanted to fix, share, love, help, work, find a answer or make a difference. Not in a way to get a gold star but in a way for me to find my purposes(I'm still trying to find my purposes) and share it with all. So stepping back and letting Zipperheads just be was hard. I know there are new Chiarians and loved ones that are scared I was one of you. What I have found out in my time away is that it does not stop with Chiari it is all illnesses and we all need to be loved and feel we are heard. That is what Zipperheads for Chiari is about. To be loved and supported.
I have watched the sun rise and the clouds move, the trees blow and the grass grow. I have been give a gift to stop and enjoy a gift I took for granted. I have time to sit with my children and read with them or snuggle up and watch a cartoon I can't stand. But I have the time. I hurt and It is never easy, every day it is hard for me, Emalee and most all Chiarians. One of the most important things I learned after my brain surgery was life is fragile our body’s can be weak but our heart, mind, soul and humanity can be so strong.
So as I look at my self in the mirror, as my daughter at 15 yrs old will be having brain surgery- what do I want to teach her now? What do I want to teach my 9 yr old son who watches his sister and mommy get in the ambulance at less once a month because we are sick. I want to teach him that love and a positive life will(and has for my family)help us make it to the next day. Chiari effects us all differently but the same. It is up to you on how you live your life, I will always support you with love and compassion. Zipperheads is for all we love you so much and are always here if you need us. If you need personal attention my phone # is on our info wall.
NOTE: This is just my opinion I have no intentions on hurting anyone, if you feel like you need medical help please call 911 or call your doctor.
With all my love-
Heather founder of Zipperheads for Chiari.
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