with serious medical problems are normal kids in often very abnormal
Here's what they'd like you to know:
It's incredibly fun to shop for
'grown up clothes'.
It's so cool to practice flute and
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
memories in for the day...wonderful!
HANSON posters on the ceiling give
a sort of comfortable feel.
Phone calls are like links to
Being part of a club in the
the best...basketball, beanie babies, music, chess, whatever.
Walking up the aisle in church
during a special service...gives a real feeling of being part of the
Celebrating makes the down times
seem less important:
passing another test, getting back a great report, knowing the right
being missed after a week long absence.
with medical problems feel like this some of the time...when they're
a bad day':
And so they wish that:
Like they don't get to be
Like they have to be responsible
too much of
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
When their illnesses flare up,
they say that
they're less able to fend off teasing or taunts...and they wonder how
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
fear it will be BAD this time.
People "knew" what it's like to be
often afraid to tell others about our medical problems. What if they
scared and then left us out of things?"
They didn't have to miss
get to play while we have to do medicine type things."
They could feel important for
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!"
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
because of illness or treatments.
Parents nag..."take your
treatments...brush your teeth.....do your homework....pick up your
Play is interrupted for exams and
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
at school, imagine how we feel."
They miss fieldtrips..."we feel so
when everybody talks about it, and when
have to do a DIFFERENT assignment as 'make-up work' while the rest of
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
now we can't play even though we feel better."
They miss out on organized sports
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.
Joan Fleitas, Ed.D., R.N.
Associate Professor of
Lehman College, CUNY
Bronx, New York 10468
Last updated: March 27,