Wednesday, March 31, 2004

I just don't get it.

There are so many people out there who simply want to downplay my son's condition that is rather sickening.

First is my son's pediatrician. She always thinks my son can just be cared for 'anywhere' by 'anybody', even tricky and downright dangerous surgeries. Yes, why make sure Nicky gets approved to see the EB experts at Stanford where he can be treated with respect and care by a staff that knows everything about EB when there are so many people down at LA's Children's Hospital that can operate on him that have never touched, let alone seen an EB child? RIGHT!!! Thank you so much Nicky's pediatrician for never having the best interest of my child at heart. You have no idea how much I appreciate it... NOT@!!

Then there are those that feel that I am 'overwrapping' my child. Oh really? This is based on what? Is it possibly based on the fact that your child is less severe and can handle not being wrapped? Maybe your child is severe too, but you just like to see your child completely covered in scars? Who are you to tell me what to do? My Nicky could not handle being unwrapped. The Debra Nurse told me I am doing a great job, and supports wrapping. If I was to keep Nicky unwrapped, I would not be surprised if Child Protective Services would come to my door after I sent Nicky to school to take Nicky away from me. Yes, that is because that would be child abuse, plain and simple.

CAN I SCREAM??? AAAGGGHHHHHHHH!!!!!!!
Silvia


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