Tuesday, April 2, 2013

The Newbie

For twelve years, I had crawled my way to the top of the ‘wellof special needs’ by myself, only now to reach the top to find out that Mighty Z has Hirschbrung’s Disease…and then tumble all the way to the bottom once again.


I was equipped this time to  climb out. I took my tumble and looked around, wiped my tears, stood up, and knew what I had to do. I had to learn another new language. I needed a different kind of compass. The map I have with CCHS (congenital central hypoventilation syndrome) was no use to me now and I needed to reach out to find other mothers that have been walking the Hirschbrungs’s road for years.


This time I was only in the well for a day or so. Why was it easier to deal with? It was because this time I had an outline to go by. I knew I had to dig deep and I had to read, read, read and Google. I needed to act like I was studying for the biggest test of my life, and in a way, I was. I needed to sit at the feet of the experts: the mothers that have walked this long, weary road. I had to ask a million questions and listen with rapt attention to who were the best surgeons, what pull through (what is a pull through?) I wanted, and how to “try” to avoid a colostomy bag.


Armed with this new language, my shiny new compass and my crisp new map, I embarked on this new quest. The surgeon was amazed I already knew the terms, the diagrams were old hat to me, and this time, the outcome was not met with tears and denial, but with my head held high.


I felt good as I left the surgeon’s office. I was not devastated but determined! I know I have said this countless times, but this is my soap box. It is so important for the mothers that have been walking this road to reach out to us newbies and hold our hand as we embark on a life altering journey…because, we never know when we are going to be the newbie again.

Edited By Linda Kruger
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