Hi Anon.,
It will certainly be a challenge, and while there are no real answers, there are somethings that I think you can start doing now that will make your life easier later.
My parents never made me feel any different from any other kid growing up without CF. I was signed up for lots of sports (ice skating, swimming lessons, soccer, basketball, etc.) and was bundled up and sent out side when it snowed, etc. I played outside, etc. I was not put in a bubble. This high level of activity was critical later on in my teen years.
Beginning in fourth grade took my enzymes with me at school, and took them myself - no school nurses, and later, carried my own inhaler. I think I would have felt awkward if I had to go to the nurse everyday and count out my meds - I even think at one point the school nurse wanted me to do this... my parents advocated strongly for me, and won - (it helped that my mom was PTA president)
I never felt different doing my chest PT and nebulized drugs... back in the day before pulmozyme and tobi, I remember nebbing gentamycin and a tobra -- all you young people complaining about how bad tobi tastes don't know how good you've got it ;-) It wasn't until I was 10 or 11 that it dawned on me that other kids didn't have to do this stuff. (Including my siblings, both of whom do not have CF)
A word about chest pt... I know a lot of you like the vest, but the father-son bond that developed between me and my dad doing chest pt twice a day every single day from 2nd grade - 12th grade was/is amazing, and one of, if not the only, truely beneficial thing that I can point to about cf. Also, in my "professional opinion" Chest PT is WAY more effective than the vest. Anyway, I digress...
When high school began, the number one thing that kept me on the "straight and narrow" in terms of adhereing to my treatments was my participation in my schools cross-country and track teams. Don't get me wrong, when I joined, I was terrible... second to last out of 30+ guys. But I liked running for runnings sake, and eventually I got significantly faster. All this time, I knew that if I didn't do all my meds and therapy, that I would be slower... so the prime motivation really was getting my personal bests as low as I could, and it just so happened that doing all my meds helped this cause. This carried into college, where I also ran competitively.
Its not easy. They will be challenged by other kids, they will have to decide how open they want to be about their disease. But my personal experience has been that if they stick to their guns, that they will earn far more respect from their peers by putting their health first than they ever would for smoking up.
Your challenge as parents will be developing a sense of ownership in your children. CF is their's to beat - you are there to help, but they are the ones who have to make the commitment. Make it clear to your kids that you have high expectations for them. College is realistic. Careers are realistic. Life with CF is possible. Never let CF be an excuse for treating them any different than other kids. If you have other children, make sure you pay attention to all of them, punish them equally etc. All your children will have talents and gifts... hold them up high for those, not for CF.
CF is an agressive, relentless disease. To beat it, your children must become relentless and agressive. My girlfriend shakes her head at the size of my ego. Yes, its huge, and I'm competitive, and I have to be. I'm the first to say that I've been very lucky... I'm quite mild, and have been hospitalized very few times, but I work damn hard to keep it that way. You can't do it for them... you have to guide them, and make them understand how big the stakes are... some kids can get away with smoking, and all the dumb stuff kids do. Your kids can't. It will shorten their life, and take away everything they could ever want - as will skipping treatments, and otherwise compromising their health. Don't hide it from them... push it early, and convince them that they have some say in the course of their CF.
Anyway, these are just a few of my "gut reactions" to your post, and your challenges... sorry for the rambling. I will say, I don't know who has the bigger challenge... CFers or their parents.... I think they are very different, but pretty much equal in size.
Chris
25 w/cf
