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 Being
Different
by Sylvia Lawniczak, The Special Mommy Chronicles
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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 info.
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, it's 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 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...
Silvia Lawniczak
Special Mommy Chronicles
http://www.sleepingangel.com/smc.htm
Never be afraid to try something new.
Remember, amateurs built the ark. Professionals built the
titanic
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