{"id":2611,"date":"2017-09-21T12:05:01","date_gmt":"2017-09-21T19:05:01","guid":{"rendered":"http:\/\/blog.silviaskingdom.com\/?p=2611"},"modified":"2017-09-21T12:05:01","modified_gmt":"2017-09-21T19:05:01","slug":"nicky-life-part-56","status":"publish","type":"post","link":"https:\/\/blog.silviaskingdom.com\/?p=2611","title":{"rendered":"Nicky Life Part 56"},"content":{"rendered":"

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August 1997 – Nicky and I on our way to our anniversary dinner.<\/p>\n

~ Excerpt from the Book “Butterfly Child”
\n“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: \u2018Is this normal?\u2019
\nIt\u2019s 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 \u2018average\u2019 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.”<\/p>\n

More of Nicky’s story in the book… Thank you so much for your support!!<\/p>\n

https:\/\/www.goodreads.com\/book\/show\/25371388-butterfly-child<\/a><\/p>\n

Love & Light,<\/p>\n

\"Animation337_silvia\"<\/a><\/p>\n

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\"Vote<\/a><\/p>\n

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