August 1997 – Nicky and I on our way to my anniversary dinner…. Nicky looks so spiffy, but despite the smiles, behind the scenes, I was a mess. At this point I was taking Nicky to the Physical Therapist twice a week and she became sort of a confidant; 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,