On most days, the furthest thing from my mind is my child being different from any other. We laugh and play together, and 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 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, questions, seeing other kids Nicky’s age doing things that he 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 time with other 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’ve even met some wonderful souls who started crying.
Then there are those people who think they 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 that 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 information.
The stares sometimes are the cruelest things. 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 “yuk” stare (my personal peeve), the “poor baby” stare, but my favorite is the stare with a smile … but my child rarely gets those, unfortunately.
I realize that people are curious and notice things that are different than what our society feels is “normal.” Picking out what’s different is a skill children learn at a young age. Perhaps it’s 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’s only difference, though, is on the outside. His skin may be damaged, and he might have tons of wounds and limitations, but inside, he’s 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’s so happy it’s over that he comes over for a hug and starts singing, and that smile … boy, that just melts my heart.
My child’s 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.