Welcome to my blog about my journey through cranio with my youngest Denver. I write this blog to benefit myself by getting my feeling out and hope that someone may read this and get an understanding about what we go through as mums dealing with cranio. Some people thimk the journey of cranio ends after the 1st cranio surgery but that is far from the truth, this is a life changing journey that goes on for the life of the child and their family. I often write things I would never have the courage to say out loud to anyone, often the feelings are very raw and honest. So join me on my roller coaster ride through cranio and lets get through this together.

Wednesday, July 18, 2012

Fuck you Cranio

We are taking a pounding from cranio at the moment, when I say we I mean Denver and I. Since his first headache last month, headaches have now become more regular not quite as bad but still there at least a couple of times a week. We have done the trip to our chiro in the hope that he had just put his neck or back out but no they are still there. Ange before you start shouting at me take him to the Dr's its not as easy as just ringing your GP up and going up the road to see them it's trying to get an appointment with his cranio specialist and then an appointment with his neurosurgeon, and if I ring up and say he needs an appointment that makes it too fucking real that i think some things not right. I am watching for other signs of things not being quite right, he his back in our bed, which means he needs the security of being near us, he is restless in the night which last time meant bad headaches were happening and he is suddenly really tired which relate to the headaches at night. So tomorrow I will pick up the phone and start making the phone calls and then tomorrow it will hit and then tomorrow I will have to tell others that i am taking him back i think there is something wrong. Tomorrow I will tell people and I will still feel as alone as I do today. It wont change anything, I will hear peoples uncertain response and then the change of subject will come or the comment 'well I'm sure there's nothing wrong'. Then they get to walk away and get on with their life.
Denver also got his report like every kid did at the end of last term and it is the first time I have ever wanted to cry at the sight of one. Just to have it in print that there are issues and that he is not where he should be. There is nothing like reading with your child and going through their alphabet with them to have them forget letters or sounds that they knew yesterday, you know and he knows that yesterday he knew it but today his brain wont allow him to access the information. In this world today how does a person get along in life if their memory doesn't work one day as it did the next. Do i get him a tutor? Do i pretend its fine and rosy? Do i do what exactly? It is the first time I haven't shared my kids reports with my family, I am not ashamed of Denver I am trying to save myself.Denver has a cousin his best friend Josef they are the same age and I don't want everyone to see his and then see Denver's and know that Denver is struggling. You may wonder how do that not know already? I am private about this, I don't want to share, I don't want to feel any ones pity or hear any ones it will be fine comment. I don't want anyone to see how deep my pain goes. I am used to doing this on my own, my husband coping mechanism is to pretend that it doesn't exist and that everything is fine, so I am used to feeling it on my own, making the decisions on my own, I cant share deeply with people who don't live it with me, but then no one will ever live it the way I will and do.  So tomorrow is the day, it will start with the phone calls and then the one sided conversation with my husband where i talk and he nods.


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