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, beanie babies,  music, chess, whatever.
  • Walking up the aisle in church with classmates during a special 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 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 your treatments...brush your 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. 
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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: March 27, 2009