When your child is ill.

As parents we hold our babies for the first time looking into there eyes, checking to see if they have all there toes and all there fingers, waiting patiently as the doctor takes our baby away and makes sure they are healthy. Everything about you vanishes because you are now the person's responsible to walk the human you are holding and love so much through life. Willing to push them out of the way of a bus on the road to let the bus take you instead. The love that you have for your children is so big you stop and wounder if the world can hold it or if it will split into for the weight in your heart, spirit and soul is so big for your children. There is nothing you would not do for this perfect human that was given to you to hold, protect and keep safe.

When your child becomes ill and it does not matter what sickness they have your heart stops beating rite. Your first thought is how can I make it go away and how can this beautiful person be ill. There is no story better or worse when it comes to children and illness just the wanting to fix it. I have never thought I could love my children more but everyday I love them more and more and wounder why this is happening to them? I keep telling myself we are not alone and nether are they but the hollowness in my stomach  is not filled because my babies are ill.

I ask everyday for God to give me there pain there illness so they can enjoy life and I wait with my own faith for it to happen. This is how I am as a mother. Before my children were diagnosed with Chiari and other illness I cried for the children suffering wondering how these  strong parents did it. I know how to live with Chiari and other illness and my heart brakes thinking there are children out there in pain including mine.

So how do we do it? We just do, we have no other option, in our house our daily goal is to have the less amount of stress for them and the most amount of laughter. We feel the sand slipping through our hands that represent helpfulness and we hold on too even the smallest part of sand left. Even at doctor appointments we make silly videos as we wait for the NS or play crazy made up games that make no since and I'm sure the people in the next room can here us all laughing.

On the bad days we cry together in our family we have stopped trying to show we are not scared because we all are and we are all in this together. We have learned to drop everything if one of our children need something even if it seems small to others because our children need to know we are there for them for everything. We talk with each other and hang out in our back yard or in my bed together all snuggled up because none of us feel well but we need each other.

There is no one way to be there for your children or a family that is going through this but you need to be there for them. I wish none of you had to go through what my family is going through and I know it will not fill the ache you have to fix your child but we are here for you, we love you and we love all children. No child should feel alone or not supported. No child should should feel the pain of any illness, as a Chiarian, Zipperhead and mother of two Chiarians I am so sorry you are going through this but I am here for you.

Every child is a blessing and perfect in their own way EVERY child should laugh and feel the weight of love from the world. I send you all love and support. Wishing you joy and laughter to help fill that ache in your spirit and  hoping that all can send everyone the same so the world is filled with love, laughter and joy so even on a bad day it can touch the tears we shed.

With all my love I send too all the blessings in the would 
Founder of Ziperheads for Chiari
Heather Graves 

This site is a support group we do not have a doctor on here if you have a question or need help please call 911 or call your doctor. Everything I wright comes from my life experiences in no way I am trying to hurt or mislead anyone. I am all ways available to talk. please go to our information page on facebook for how to contact me. With love and support always.