CF Happens

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

recent posts

  • Chapter 5 – Marriage

    “Playing the Cards Life has Dealt”

    The guy who I was dating throughout junior high and high school proposed to me the summer before my senior year and we set a date for the wedding after I graduated from high school.  January of my senior year I had the opportunity to go to Hawaii through the Dream Factory.  The Dream Factory is a wonderful organization that gives kids who are sick with incurable diseases their wish like the “Make a Wish Foundation” does.  My wish was to go back to Hawaii.  I have family that lives in Hawaii and it is my favorite place in the world.  I haven’t been anywhere outside of the US but still it is my favorite place to go/be.  The only weird thing was my fiancé went with me, not so much of a kid thing to do.  In July of 1998 we got married in a big catholic ceremony.  We moved to Pittsburg, KS two days after getting married.  My husband was going to start college at Pittsburg State University and wanted to walk on the football team.

    While I was living in Pittsburg I hung out with my aunt a lot since she lived there.  She invited me to a women’s bible study.  I was very interested because I had a lot of questions that I wanted answered.  One of my questions was, did God give me this disease and why?  I began to find comfort in knowing that God did not “give” me CF as some kind of punishment and that I won’t know why I have CF until I have a chance to ask him when I get to heaven.  I am sure that I will see all the people that I affected and encouraged because of CF so I decided to stop wasting my time worrying about that.  I know there is a reason I have CF I just cannot see the magnitude of why yet.  I have a major compassion for sick people, people who are in the hospital a lot, people who have no energy due to illness, and even the caretakers of the sick people.

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  • 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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