CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • Chapter 4 – School Years

    “Playing the Cards Life has Dealt”

    When school started it was fun for me but terrifying for my parents.  I was the normal kid running, playing, and joking around.  Every year my mom would have a conference with the teachers and the school nurse to inform them about CF and what to expect with me.  I would also get up in front of my class and talk about CF and during that time then the kids were able to ask me questions.  My hope was that they would ask all the silly questions then so that I would not be talked about later.

    School was fun for me.  I liked to learn and be around all the other kids.  I was a social butterfly.  I was unable to do some of the things that other children were able to do like going outside and playing if it was cold.  I had to stay inside during recess if the temperature was below fifty-five degrees.  I know my mom was doing this to protect me from getting sick but it was no fun to be the only kid sitting inside during recess.  I did manage to go outside when the temperature was above fifty-five degrees but then I did not want to come inside.

    I did have special academic testing at school due to the fact that I was absent a lot because of being sick.  The testing was to make sure I was learning on the correct level and also so that I could have tutors when I was out of school for a long period of time.  We also had to set up an IEP (Independent Education Plan) so that when I was sick and missed school I could still stay right in line with my class.

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  • Chapter 3 – Denial & Guilt

    “Playing the Cards Life has Dealt” 

    Denial is a common feeling when dealing with a genetic incurable disease.  The first people to deal with the denial and guilt are the parents when they get the news that their child has Cystic Fibrosis, a progressive incurable disease.  Most all parents leave the doctor’s office after receiving the diagnosis in a fog of “this can’t be real.”

    Now a days most all parents/family members go to “Dr. Google” to find out what the World Wide Web has to say about CF and what it entails.  By “Dr. Google” I mean they go to google.com and enter Cystic Fibrosis and start reading everything that their little brain can retain, all the good and bad.  The bad being what sticks with them.  As time goes on the parents should educate themselves from reputable sites like www.cff.org.  Also speaking with other parents of CFers and people with CF will help them know they are not alone and they can do this.  Your CF clinic should be able to help you get in contact with others.

    Some family members never get over the denial and/or guilt that their child/sibling/grandchild/niece/nephew/cousin/etc. has CF or whatever disease they are dealing with.  Thus the reason that CFers can feel like they are a burden on those in their life.

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