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Growing up With CF – Normal or Not

My usual eloquence is gone today, so pardon the skitterish path my thoughts take as I write this abnormal mess. It’s more for others – the younger generation coming along behind those of us already decidedly in what is known as “adulthood.” I fully intend on this to be more questions than statements to promote discussion and give hope to our young friends who may be struggling with their health, fitting in, and wondering if they will make it to our stage of life.

Remember when you had to sit inside on a sunny day doing treatments whilst your friends or siblings were outside playing? Remember missing school and falling behind your classmates and your teachers giving you extra work to catch back up to advance to the next grade? Remember feeling different because you had to go see the nurse every day to get your enzymes for lunch?

How did you feel when you weren’t as big as your classmates. How often were you picked last for teams in gym class? Did you have to give up playing your favorite sport(s) at some point because you couldn’t keep up (at best) or because it would be too dangerous, or because you didn’t make the team due to something CF-related (at worst)? Did you get turned down for prom or homecoming or not ask your crush because you were a bit of an outcast?

How often did you think you wouldn’t make it to high school/college/marriage? Do you still have fears of not making it to your next goal? What do you do to overcome those fears and keep on going? Were your fears unreasonable because things were not often as bad as they seemed at the time? Have you had to give up dreams of having a certain profession because there’s no way you can do it with CF? Have you lost friends or relatives to CF? When all is “normal,” do you even think about having CF?

What is the longest time you’ve gone without IVs/hospital stays? What’s the shortest time between IVs/hospital stays?

What is your greatest accomplishment – most especially despite having CF?

Let’s all contribute a little story about growing up to encourage our young fibros and cysters.

Life goes on, and so will yours. Don’t dwell on the worst case. Plan for them, but don’t dwell.


  1. Jesse,

    Thank you for posting this. You inspired me to write about how my childhood was different and post it to my blog. I think it’s great to pass on this information to our younger cysters and fibros. I also love your ending remarks for this post! There’s too much info to post a comment on here but the best advice I can pass on is this:

    Live each day to its fullest and never let this disease stop you from loving life. You are allowed to be frustrated and even angry at times, but don’t let it consume you. Enjoy the time you have and share your love and beauty for life, because none of us are given any guarantees.

  2. mildred.petersen says

    Please post a link to the previously mentioned blog by mmurray0702.