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Here are some good questions and answers about the impact of parenting on this CF life and how my parents made CF treatment time fun!
The biggest thing that my parents did to positively influence my life and living with CF was to they themselves have the attitude that we were going to kick CF butt each and every day. Treatments were never negotiable growing up but after I “did what I had to do” I was free to do anything and everything that I wanted. I never ever saw my mom discouraged, scared, or angry because I had CF. I later found out that she spent many nights crying herself to sleep, but I never saw that. I think it was very important for me to see her confident about facing this CF life. The only negative thing I can think of was my mom's initial reaction to the CF diagnosis. As most moms do she went into hyper protect mode. She threw me into a bubble and had no intention of letting me out. This lasted for about 4 years or so until a Dr. finally said, “Chris, Ronnie is going to be somewhat physically disabled his entire life, but if you continue doing what you're doing he'll be mentally disabled as well.” That changed my mom's entire perspective on CF.
Question: What unique memories do you have of your parents and how they took care of you living with CF? {For example: my parents use to sing to me certain songs during percussion time, which I sing to my daughter now. My parents would purchase new PJ’s for each hospital stay. My mom would stop at a place for breakfast before a CF doctor’s appointment.}
I have fond memories of treatment time because I always got hand-pounded by either my mom or stepdad. I just remember it being such a time of bonding between us and frankly gave us time to catch up on each other's day. When I was a child my mom would put on a song and "beat" to the beat of the song. We would also play a game in which I would try to get away and she would grab my legs and pull me back I often laughed so hard it put me into a coughing attack. Treatment accomplished!
This is for all parents, fibros and cysters to chime in on! What about you guys, how would you answer the question?
Parents, how do you feel that you both positively and negatively impact your child's CF life? How do you make treatments fun?
