Turns and flips

Life has many turns and sometimes for people flips and slopes that go down to fast that you can't get your heart from your feet as fast as you wish too. Sometimes as you sit and watch the sky you can't help but see the only cloud is over your home and you can't stop but ask when it will stop raining. I and my family can understand that, we seem to be going through a long down poor and can't get to the top to get some air. As we hold each other tight and the panic becomes reality and you stop and look around you start to see the love you have for the ones your holding on too and for. 

If it wasn't like this for me I would not be able to wright about this and tell you your not alone, your not alone. Sometimes the simplest words seem to help. I don't know why and I don't know how to make the sunshine for all of us but we can see the light within the ones we love. Simple words like “I understand”, “I'm hear for you”, “your not alone” or even “it just sucks”. They seem to hold something real with no pity or fake meaning but it hold a piece of you where you know they mean it. A simple word or action can change a day for the good or bad. I wounder sometimes if it's all a lesson and if I've had enough and then a new lesson comes to my eyes so clear that it seems worth it all. 

Through all my illness's, money issues, family problems finding out who's there for you and who's not seems almost to hard to bare. It seems to undress you as you stand naked for the world to see you at your lowest. That's where I've been my dear friends and I am embarrassed to say I was down in a low point that I couldn't breath. When I thought we were done with one thing something else came-a-swing-in. It's still coming and I'm breathing in the air I'm off the roller coaster ready to walk or fight, run if I have to what ever it takes to stay up. 

What happened? Well what hasn't? I'm not sure the action matters its the root that is the problem and that's what I'm going to share with you because as always my thought is “if it's happening to us it has to be happening to others”. When I was diagnosed with Chiari I was scarred and went through all the emotions we go through. When our daughter was diagnosed with Chiari I tried to tell myself its better because I know what she has so I can help her better. Then when our son was diagnosed as our daughter is healing from her surgery it hit me. I know how they feel. I'm on both sides, I understand the parents who don't understand and want, need to fix them and I'm on the side of the parents that do understand how it feels and there is nothing to stop the pain. I've never once asked to be cured because I want to continue to help all of you in all the ways I can but no child should have Chiari no child should ever have to feel this pain, no child should ever have to have brain surgery. It's to much for all of us the parents, the loved ones, the person reading this for the first time trying to understand it. It's to much. 

BUT this is what I've learned, as my children go through this our family we are closer, we spend more time enjoying time together. We have stopped judging others cause you never know what someone else is going though “we don't look sick”. We love more, we care more, we want to help all more. I'm not saying I want my children to be sick I ask every day every night for them to be healed. I want them to enjoy life but we enjoy what we have today now this second. 

I'm not in your shoes and your not in mine but we are not alone in a lot of things and sometimes when it rains over your house you should find a way to play in the water! 

I send you all my love every day I send you my support everyday I love you all so much. This is a paper I am righting from my life if you have medical questions please ask your doctor we do not have a doctor on our support group. We are here to love and support all.

With all my love and support always

Heather

Founder of Zipperheads for Chiari