{"id":2280,"date":"2016-10-20T12:51:09","date_gmt":"2016-10-20T19:51:09","guid":{"rendered":"http:\/\/blog.silviaskingdom.com\/?p=2280"},"modified":"2017-01-20T06:52:49","modified_gmt":"2017-01-20T14:52:49","slug":"nickys-life-part-47","status":"publish","type":"post","link":"https:\/\/blog.silviaskingdom.com\/?p=2280","title":{"rendered":"Nicky&#8217;s Life Part 47"},"content":{"rendered":"<p><a class=\"boxer\" href=\"http:\/\/blog.silviaskingdom.com\/?attachment_id=2281\" rel=\"attachment wp-att-2281\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-full wp-image-2281\" src=\"http:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2016\/10\/13125029_464794353718478_8712847322084769110_n.jpg\" alt=\"13125029_464794353718478_8712847322084769110_n\" width=\"600\" height=\"395\" \/><\/a><\/p>\n<p>August 1997 &#8211; Nicky and I on our way to my anniversary dinner&#8230;. 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: \u2018Is this normal?\u2019<br \/>\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&#8217;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<p>More of Nicky&#8217;s story in the book&#8230; Thank you so much for your support!!<br \/>\n<a href=\"http:\/\/www.butterflychildamothersjourney.com\/?page_id=19\" target=\"_blank\" rel=\"nofollow nofollow\">http:\/\/<wbr \/>www.butterflychildamothersj<wbr \/>ourney.com\/?page_id=19<\/a><\/p>\n<p>Love &amp; Light,<\/p>\n<p><a href=\"http:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2014\/02\/Animation337_silvia.gif\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-833\" src=\"http:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2014\/02\/Animation337_silvia.gif\" alt=\"Animation337_silvia\" width=\"218\" height=\"190\" \/><\/a><\/p>\n<p>&nbsp;<\/p>\n<p><a href=\"http:\/\/www.topmommyblogs.com\/\" target=\"_blank\"><img loading=\"lazy\" decoding=\"async\" src=\"http:\/\/www.topmommyblogs.com\/directory\/images\/banners\/tmb-728x90-an.gif\" alt=\"Vote for me @ Top Mommy Blogs - Mom Blog Directory\" width=\"728\" height=\"90\" border=\"0\" \/><\/a><\/p>\n<div class=\"fb-background-color\">\n\t\t\t  <div \n\t\t\t  \tclass = \"fb-comments\" \n\t\t\t  \tdata-href = \"https:\/\/blog.silviaskingdom.com\/?p=2280\"\n\t\t\t  \tdata-numposts = \"20\"\n\t\t\t  \tdata-lazy = \"true\"\n\t\t\t\tdata-colorscheme = \"light\"\n\t\t\t\tdata-order-by = \"reverse_time\"\n\t\t\t\tdata-mobile=true>\n\t\t\t  <\/div><\/div>\n\t\t  <style>\n\t\t    .fb-background-color {\n\t\t\t\tbackground: #ffffff !important;\n\t\t\t}\n\t\t\t.fb_iframe_widget_fluid_desktop iframe {\n\t\t\t    width: 100% !important;\n\t\t\t}\n\t\t  <\/style>\n\t\t  ","protected":false},"excerpt":{"rendered":"<p>August 1997 &ndash; Nicky and I on our way to my anniversary dinner&hellip;. 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&#46;&#46;&#46;<\/p>\n","protected":false},"author":1,"featured_media":2406,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4,410],"tags":[229],"class_list":["post-2280","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","category-nickyslife","tag-nickys-life"],"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/posts\/2280","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=2280"}],"version-history":[{"count":1,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/posts\/2280\/revisions"}],"predecessor-version":[{"id":2282,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/posts\/2280\/revisions\/2282"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/media\/2406"}],"wp:attachment":[{"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=2280"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=2280"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=2280"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}