Blog / Nicky's Life · September 21, 2017

Nicky Life Part 56

August 1997 – Nicky and I on our way to our anniversary dinner.

~ Excerpt from the Book “Butterfly Child”
“The Physical Therapist became sort of a confidant; after all, I saw her twice a week and I felt she was one of the few people that might have answers to a question I was constantly asking myself: ‘Is this normal?’
It’s just the nature of having a child with a disability and not having another child to compare him to. Sometime it was normal, but most often it wasn’t. I was determined to give my son a quality of life that was as high as I could make it, and I knew that was dependent upon the care, education and advocacy he received as a result of my efforts. Of course, that would be true for any child, disabled or not, but in my case, I felt I was not only a parent, but a referee, constantly explaining, describing, defining, demanding, apologizing and trying to adapt, alter or rearrange a system intended to meet the needs of the ‘average’ child and family. It was strenuous work, one that I became entirely absorbed into. I grew to be so totally focused on researching EB I made myself an authority on it, working through the grieving process once again, even as at times I felt lost and psychologically abandoned by everyone.”

More of Nicky’s story in the book… Thank you so much for your support!!

Love & Light,



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