Breathing Deeply: My Life With Cystic Fibrosis

The following are some questions that were posted in an online forum about CF. My answers and some additional thoughts are included here.



1. At what age did your parents hand over all treatments to you. When did they make your meds and treatments your full responsibility?


By the time I was 10, I was in charge of bringing my enzymes and vitamins with me to the table at mealtimes. It's hard for me to remember my mom or dad ever setting up my meds or anything and then handing them to me. Most often I was just told to "go do your breather." It was like being told "Go clean your room."


2. At what age did they stop going into the doctors office with you?


When I was old enough to drive, Mom went with me to the doc less and less. Most of the time I invited her along, so I'd have someone to talk to while I waited! Also, doctor appointments were sort of a mom/daughter bonding thing. After the appointment (usually late in the afternoon) we'd stop for dinner somewhere.

3. When do you feel your parents made all aspects of CF (meds, calorie intake, setting up doc appointments, etc) your full responsibility?

Like I said before, it was my responsibility from as young as 10. As far as calories go, I've always been a foody, so I took charge of preparing healthy snacks and big school lunches around 5th grade. Basically I learned to cook so that mom would be able to get out of the kitchen now and then! Making appointments was, for the most part, pretty easy to do. The clinic would say when they wanted to see me next (1 mo, 3 mo, 6 mo, etc.) so I'd just make the next appt on my way out the clinic door. In college I started having more problems with my health, so it was up to me to call the doc. Usually after I made an appointment, I'd call mom and dad to fill them in on what was going on,


I'm extremely compliant now, but I was a total butt-head about my meds for awhile in high school--especially the enzymes and vitamins. I'd stash them in the houseplants or throw them away at school. My parents knew this. They weren't dumb. (But as a teen I thought they were!) Most teens rebel in some way. I was too much of a goody two-shoes to be promiscuous or have a smart mouth to my folks, so I rebelled quietly. By the time I graduated from high school, I had my act together and stopped the bad behavior. There was no cathartic moment that made this happen. I just grew up.

If some of you are parents who are having a tough time getting teens to take responsibility is this: choose your battles, and remember that no matter how "adult" your kid thinks s/he is, your job and responsibility is to be a PARENT--not a friend, not a buddy, not a confidant--a PARENT.

My mom and dad let me learn from my own mistakes, but stepped in at the exact moment when my stupidity would have gotten me in more trouble than I could handle. I was given the go-ahead to walk a tightrope of my own life, but when I was under their care (up to age 18) their way of instructing me and helping me learn my limitations served as a great safety net. Had they not been such awesome, attentive parents, I wouldn't be the responsible, well-adjust adult I am today. And I don't just mean in terms of CF.