By Silvia Corradin
From the Book ‘Special Mommy Chronicles‘ (only $2.99 for the Kindle!)
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 ‘normal’ thing to do. I don’t have any other children, so I don’t have anybody to compare him to on a daily basis, and that might very well be a blessing. I don’t 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.
That all changes, however, once we go out in public. The stares, the questions, seeing other kids my son’s age do things Nicky will never be able to do, can truly be heartbreaking. I often worry about Nicky’s 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.
The questions and reactions I get from people are varied.
There are those who just ask ‘What happened’, 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… 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’t, who comment or try to explain to their children what is ‘wrong’ with Nicky… and they always without fail get it wrong. They will say ‘he got burned in a fire’, or ‘he was in an accident’ 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’s never the case. Any skin disorder pales compared to EB, so I know they don’t 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