{"id":1324,"date":"2012-12-03T02:35:46","date_gmt":"2012-12-02T17:35:46","guid":{"rendered":"http:\/\/blog.ebinfoworld.com\/?p=1324"},"modified":"2014-05-10T03:30:57","modified_gmt":"2014-05-09T18:30:57","slug":"being-different","status":"publish","type":"post","link":"https:\/\/blog.ebinfoworld.com\/?p=1324","title":{"rendered":"Being Different"},"content":{"rendered":"

By Silvia Corradin<\/em><\/p>\n

From the Book ‘Special Mommy Chronicles<\/a>‘ (only $2.99 for the Kindle!)<\/p>\n

Being Different <\/strong><\/p>\n

\u00a0\u00a0\u00a0\u00a0 On most days the furthest thing from my mind is my child being different from any other. We laugh, play together, even bandage changes are so routine it feels like a \u2018normal\u2019 thing to do. I don\u2019t have any other children, so I don\u2019t have anybody to compare him to on a daily basis, and that might very well be a blessing. I don\u2019t sit there feeling sorry for myself, or feel sorry for Nicky that much, if at all. We just live and take care of what needs to be done.<\/p>\n

\"\"<\/a>That all changes, however, once we go out in public. The stares, the questions, seeing other kids my son\u2019s age do things Nicky will never be able to do, can truly be heartbreaking. I often worry about Nicky\u2019s mental state seeing other kids do things he cannot do, and that is why I try my best to get him to spend some time with children like him. I also try to help him do the things he cannot do and do them in a creative way, like holding him in my lap to go on a swing, or down the slide.<\/p>\n

The questions and reactions I get from people are varied. <\/em><\/p>\n

There are those who just ask \u2018What happened\u2019, and after I offer my initial brief explanation they walk away (yes, they walk away!). Then there are those people who truly seem concerned and ask a million questions\u2026 I like these people, but there are only a few of them out there. I even had some wonderful souls who start crying, WOW. Then there are those people who think are out of earshot but aren\u2019t, who comment or try to explain to their children what is \u2018wrong\u2019 with Nicky\u2026 and they always without fail get it wrong. They will say \u2018he got burned in a fire\u2019, or \u2018he was in an accident\u2019 or things of sort. Others tell me about their cousin or aunt with a skin disorder (usually eczema or similar) or think they know what it is, but it\u2019s never the case. Any skin disorder pales compared to EB, so I know they don\u2019t understand how badly Nicky is affected. To most others I hand out a card that explains what Nicky has in simple terms, and that has worked best because it has links to websites to get more info.<\/p>\n

The stares sometimes are the cruelest things. <\/em><\/p>\n

Admittedly, I have gotten used to having my child stared at, and I know that is true because when there are other people with us they comment constantly on this person or that person staring that I did not even notice. There are also different kinds of staring. There is the staring out of curiosity that ends just as quickly as it started. Then there is the persistent stare-the one that follows you for a whole minute or five! Then there is the \u2018yuk\u2019 stare (my personal peeve), the \u2018poor baby\u2019 stare, but my favorite is the stare with a smile\u2026 but my child rarely gets those, unfortunately.
\nI realize that people are curious and notice things that are different than what our society feels is \u2018normal\u2019. Picking out what\u2019s different is a skill children learn at a young age, perhaps it\u2019s a skill that is part of being human, and that enables us to pick the freshest fruit to eat or avoid illness or an accident. Nicky\u2019s only difference though, it\u2019s on the outside. His skin may be damaged, and he might have tons of wounds and limitations, but inside, he\u2019s as whole as any of us; perhaps more. He has a keen sense of love and his ability to love and even forgive me, or anyone, for anything, is beyond measure. He is without a doubt the happiest child anyone has ever seen. Even after an excruciating bandage change full of blood and needles he\u2019s so happy it\u2019s over he comes over for a hug and starts singing, and that smile\u2026 boy, that just melts my heart.<\/p>\n

My child\u2019s disability is only part of who he is, but because his disability is so incredibly visible, I feel too many people tend to concentrate on that alone, and that is very sad. What a world this would be if people would only be judged by their insides\u2026<\/p>\n

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Silvia Corradin<\/a><\/div>\n

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.<\/p>\n

\"Facebook\"<\/a> \"Twitter\"<\/a> \"Google+\"<\/a> \"Flickr\"<\/a> \"YouTube\"<\/a> <\/p>\n<\/p><\/div>\n

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<\/p>\n","protected":false},"excerpt":{"rendered":"

By Silvia Corradin From the Book ‘Special Mommy Chronicles‘ (only $2.99 for the Kindle!) Being Different \u00a0\u00a0\u00a0\u00a0 On most days the furthest thing from my mind is my child being different from any other. We laugh, play together, even bandage changes are so routine it feels like a \u2018normal\u2019 thing to do. I don\u2019t have…<\/p>\n

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