Please feel free to share Sissys ribbon and story: I remember the first time I heard the word....hydrocephalus. It seemed harmless enough, just a word. Nothing to be scared of....right? The dr told us she developed excess fluid within hours of her stroke. She was so tiny and required surgery right away. We had a plan....a very specific plan. This thing, this shunt was just what you do...you just do it and it works. People can go 10, 15, 20 years sometimes without a revision. She was certainly not like the rest. She had to fight harder to survive, to think, eat, breathe..some people took it for granted....we did not. We knew her strength. Her ability to look you right in the eye and she was concerned about you...not the pressure building up in her head. Some days I just knew by her smell or the look in her eye that she was struggling. We topped out at 48....48 shunts, 15 years...that was our limit. Her headache was dismissed as a typical teen being manipulative.....she didnt know the meaning of the word. The last thing they told me when we brought her home as a baby from the Nicu was if she acts like her head hurts take her to the hospital, over 1,000 journeys we took based on that sentence....if she hurts... Her last words to me, looking me in the eye....Mommy my head it hurts, it hurts so bad!. Those piercing green eyes rolled into the back of her head, No more tears she shed, no more movement, she became still and within hours passed from this life to the next. She was never hydrocephalus victim. She fought and she kicked its ass Til the very end. Sissy we will never stop fighting for parents to be heard.....you changed so many lives, changed physicians practices, changed your world...we are so glad you came. I miss you and I miss the battle, but Im thankful for your peace. I would never be so selfish as to wish you back in that little body. Your job was done...no regrets. Please join us during the month of September in remembering her in honor of hydrocephalus awareness month
Posted on: Mon, 01 Sep 2014 05:34:24 +0000
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