Living with Children with Chiari

I sit quite in the dark, it's late and everyone in the house is asleep. I've tried to sleep but sleep has not come to my front door for me. As I stand in front of the door jam as the light hits his face just right I can see he is breathing and does not seem like he is in pain “that I know of”. This is my time not to be so strong and hold it in. My time to weep in the halls before the sun rises. He's just a child a beautiful loving boy that cry's when I raise my voice or laughs at a knock knock jokes a little boy that can still touch his dreams and nothing has stopped him. He can be anything at this moment. As I watch him sleep I know he will wake up smile, try his best to do all the things that are demanded of him to do at school and I know it is getting harder and harder for him. I can't help but to want to pick him up and rock him but he is almost as tall as I am and I would not dear to wake him. My baby, I walk over and touch his head very soft and whisper “I love you my beautiful boy” and walk to the next door and open it just a little. 

She knows, my teenager girl that has grown into an adult with in a year because she has already had her brain surgery. My weep becomes a sob and it's caught in my throat. My daughter did not get a childhood and now she is left with out enjoying high school. The guilt of all the years I complained about my life is so heavy that it wont wash away with reason. She is so beautiful and strong I admire her so much for who she is and how she has worked through all her illnesses not once stopping or quitting school or her goal for a 4.0 . My daughter is the one that pushes me to move through each day and become a better person. I don't want to wake her up or she won't fall back asleep, she is always up and down in the night but I have to make sure she is sleeping well and not in a seizure. That is a blessing tonight. I close the door and am lost to the world not knowing what is next for them. I stand alone with out any control on how to help my children get better but know exactly what they are going through. 

Chiari is a cruel disease.

I was always so good at what is , is when it came to me being ill. I was not mad. I was sad and scared but I fight with why my children? The only place for me is outside with my thoughts. As I sit and try to come up with what to do and how to hang on to this hell we live in. My mind will not stop replaying what a person said to me. “Well It looks like you got all the bad luck in the family”. Yep sure does but my children should not pay for it. Words hurts, like a knife stabbing your heart over and over and not because I'm sick because my children are.

I grab the cushion and sit in the middle of the grass and pray, “please take it away from them give it too me not my babies let me have it. I'm their mother I should hold the burden please let me have there illness’s. After my hands are numb and I ache I go to bed and stare at this wonderful man who has stood by our side not once wanting to leave. Hell I've wanted to run for a day but don't and he is always there holding us loving us working two jobs to try and pay the bills even though I know it will kill him not seeing our children everyday. Sickness works in a strange way it can tare and family apart or pull it closer, I know we are one of the lucky ones. We are closer.

I'm writing this because I have too, because this is our life because our children are sick and there is no where else to put it. I want other mothers or fathers to know they are not alone. Most of all I want the world to know what we go though living with Chiari. We wait and dream of the day Chiari is not in our every day life. We dream of it. I thought I have gone through hard times, there is nothing worse then your child or children being sick and there is not a damn thing you can do but enjoy a good day or even a bad one.

Note: This is written from my life and our family not all Chiarian families go though this. I know most of my post have a happy ending or a way to deal with this illness. Sometimes you need to just wright the truth and not sugar coat it. If you have medical questions please call your doctor or 911 we do not have medical staff on site. I send you all love and support and I am always hear for each one of you.

With all my love and support

Heather founder of Zipperheads for Chiari