Kids
with serious medical problems are normal kids in often very abnormal
situations.
Here's what they'd like you to know:
The Good
-
It's incredibly fun to shop for
'grown up clothes'.
-
It's so cool to practice flute and
know that
what comes out sounds like music...sort of.
-
Riding brand new bikes 'like the
wind' is amazing.
-
HAIR mascara, which is really
glitter on a wand,
makes anyone feel like royalty.
-
Decorating the Christmas tree is
like inviting
memories in for the day...wonderful!
-
HANSON posters on the ceiling give
a bedroom
a sort of comfortable feel.
-
Phone calls are like links to
everything important.
-
Being part of a club in the
neighborhood is
the best...basketball, beanie babies, music, chess, whatever.
-
Walking up the aisle in church
with classmates
during a special service...gives a real feeling of being part of the
group.
-
Celebrating makes the down times
seem less important:
passing another test, getting back a great report, knowing the right
answer,
being missed after a week long absence.
The
Bad
Kids
with medical problems feel like this some of the time...when they're
'having
a bad day':
-
Like they don't get to be
kids.
-
Like they have to be responsible
too much of
the time.
-
As if they're controlled by the
double 'P' words...peers...and
pressure: they sometimes go along with others just because they want so
much to 'belong'. And they don't like feeling "different because they
have...."
-
When their illnesses flare up,
they say that
they're less able to fend off teasing or taunts...and they wonder how
they
screwed up, figuring the flareups must be their fault..."I just thought
that I must have forgotten my meds..."
-
When they feel sick 'yet another
time', they
fear it will be BAD this time.
And so they wish that:
-
People "knew" what it's like to be
them, "we're
often afraid to tell others about our medical problems. What if they
got
scared and then left us out of things?"
-
They didn't have to miss
out...."other kids
get to play while we have to do medicine type things."
-
They could feel important for
something besides
illness.
-
They could, just sometimes....take
a break from
HAVING to do...."We get sick of having to take care of illness all the
time...it gets old!"
The
Ugly
It drives
them nuts when:
-
People make like it's a big deal,
as if illness
stops you from having a life.
-
Plans have to be cancelled at the
last minute
because of illness or treatments.
-
Parents nag..."take your
medicine....do your
treatments...brush your teeth.....do your homework....pick up your
room...get
to sleep..."
-
Play is interrupted for exams and
treatments.
-
Sleepovers are for others. "It's
often out of
the question that we go because of meds and treatments and things, but
everyone else gets to go. Later, when kids talk about the
sleepover
at school, imagine how we feel."
-
They miss fieldtrips..."we feel so
left out
when everybody talks about it, and when
we
have to do a DIFFERENT assignment as 'make-up work' while the rest of
the
class uses the trip as a lesson or worksheet."
-
They have to make up homework
while other kids
are playing. "It's just NOT FAIR...we've already missed school
and
now we can't play even though we feel better."
-
They miss out on organized sports
because coaches
don't understand the illness.
-
The whole class has to leave a
field trip early
because a teacher didn't think it was important to bring an inhaler for
one of them.
|