Thursday, April 20, 2017

You'll get used to it

"You'll get used to it"

The words I heard at 3am a little over 2 years and a month ago when I first brought Sonzee into the ER.  I remember how angry that phrase made me and how badly I wanted to punch the nurse who said them.  While it wasn't the most ideal time for her to say those words aloud, it turned out she was right.

Sonzee is back in surgery.  They called about 5 minutes ago to say that her doctor began the procedure.  It should be approximately 90 minutes until she is done and we get to see her.  I am sitting in my comfort spot with my "usual" PCH breakfast, a salted caramel oatmeal and a coffee, and I am blogging. This is my normal and I am used to it.  There shouldn't be anything routine about your child going under anesthesia but then again a life with CDKL5 shouldn't be either, yet this is life.

I am not even phased anymore about these types of procedures, they carry risks I don't even listen to because if I entertained them I wouldn't be able to breathe.  I don't even ask to hear statistics and if they are mentioned I honestly don't listen, because let's face it, when you become a statistic, what does it matter anymore?  I prefer to just ride out this journey without being fogged by the "chances are" because Sonzee's odds are completely her own, and I have learned if there is a small chance of nothing, with her it can become something; and if there is a small chance of something it can become nothing.

So here I am 2 years later and I want to go back to that nurse and tell her that her delivery was a smidgen off, but she was right, I will get used to it.



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