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chiari malformation

There is simply no words to describe the intense and most times overwhelming fear you have when you just stop and think about your child having surgery. Any surgery is scary… But this surgery to prevent his BRAIN from slipping further into his BRAIN STEM.. say that in your head. Its grabs me by the throat shakes me high into the sky and throws me back to earth again. And there is not a fucking thing i can do about it. I am no longer in control. Tonight i sit here after the surgery 10 days ago which threatened every ability my son has owned only to wait for him to recover a Spinal fluid leak, again say that in your head…

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These past few weeks have really hit hard both my mind and heart each being as badly crushed as each other. I have swallowed a creek full of frogs in my throat, put up steel barbed wire fenced and cemented every crack in the wall i shelter behind and still, just remain breathing in the air we take for granted.

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Spencer in the last few weeks has shown me true bravery and resilience, two of the many gifts god has given him to battle on through this journey he did not even choose, that is what ultimately bangs and scratches at the weak points of my wall, what growls and screeches loud within my head. Its painful.

Each and every day we face the “Unknown” the frustration and wonder, the crumbling worry of his future. The night hides nothing, our daily repetition and responsibility just turns the hands of time. Then you stop and you are reminded that you just made it thru that day take a breath in, head down and go again.

Yesterday i held my child down on a hospital bed so a doctor could stitch over a tender healing wound with but the smallest amount of gas only to prevent him rememberimg, he still felt everything, still heard strange, unfamiliar voices assuring him it was nearly finished, watched through tear glazed eyes as strangers hovered over him, holding him tight while they intruded his life. I talked calmy, reminded him of his life back home, feeding pigs, chasing chooks, playing with wee wee, drawing with madison, pulling a truck with rope with Joshy, chasing dayne, on the fourwheeler with dad, on his cart with pop, cooking with nan, calling out to bell the sheep, patting tammy, sitting with daddy boy, playing blocks… what colour? How many? Wheres the kids? Your so brave… your such a good boy… give mum a kiss…Doctor fixing your head… love mum? Why? Why does my child have to go through this? When will he catch a break and play again. No amount of gas would erase that episode from his head, or mine. It becomes part of you. You cant chuck that one to the depths of the ocean or hide it under a rock, it sticks and takes up half the space youve marked..”Shit to try forget…one day”. As he ages it will become a memory so distant for him but it will forever flash in my mind as possiblly one of the few most horrific traumatic times of my life. And even though that memory will last forever i hope and pray he knows that i didnt leave him, i held him through it and tried with all my soul to guide him. I will always be there. So tonight i pray as hard as i did the moment he was born, just for god to help my baby…Amen.2015-09-22 20.01.56

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