Look Beyond The Defect

I have been reading a book called "Living With Bladder Exstrophy" and I wanted to share something with you out of the book! The first part is a story from a mother (who is also a nurse) of a little boy named Geoffery that has Bladder Exstrophy..

I have spoken to many parents of children with exstrophy and the following is just one example of the initial reactions to their child by others. "After she was born and we knew that her condition was treatable, no one ever said to me or to my wife, 'Congratulations! You had a baby girl!'." As a mother of a child with exstrophy I have had similar experiences. Four months after Geoffery was born, my pediatrician said, "Geoffery is really cute, but I guess you hear that all the time." I was shocked by her statment. No one, not even my friends or family, had ever said Geoffery was cute. I began to realize we were guilty of viewing Geoffery in terms of his defect rather than as a cute, normal, healthy baby.

"How others view a child with exstrophy often colors the view of the parents. Feeling shocked, angry, sad, and powerless is common. The family further gets stressed by demands of the child's specialized medical needs. As a result, it is easy to understand how the family's views and actions impact the child with exstrophy. In a non-supportive environment, the psychosocial and medical aspects of a child with exstrophy will be exacerbated. However, the impact will be lessened in the supportive surroundings."


When I was reading this my jaw literally dropped! I am so very thankful to my family and friends for their wonderful support and for seeing BrynLee for more than her defect! You are all so amazing and caring! BrynLee is a beautiful, wonderful, happy baby and I'm told this by many people every single day!