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!
Krista T · 704 weeks ago
I think that I postively affect her treatment time by not making it a choice-it's something that get's done and there is no question about it. She is 4 now and really likes playing games (on the computer) and coloring..she gets to do whatever she wants while doing treatments. I also like to make sure myself or her dad are always in the room with her. I don't want her to feel like she is facing CF alone-ever! The first couple years of her life I pounded her with my hand...and that was really a special time as well for us. She won't remember it but I will always remember. I try not to let her see me upset about CF. There have been times that I slip up and get upset about a situation and she sees me that way...but I never tell her that it has to do with CF.
Negatively....I think that my attitude could improve when dealing with treatments and all that goes along with trying to keep her healthy. She know's her treatments keep her healthy and strong...and so do I-and whenever I get a scare...I am reminded how lucky I am to be able to have therapies available for my daughter. But in the midst of all the washing, and sterilizing, and filling and ordering meds, and forgoing sleepovers with Nana b/c I don't want to pack everything up....my attitude can get into a bad place. I don't think I show it to her it's mostly behind closed doors...but that is something I wish I didn't do...or feel...I feel guilty if I say: "These treatments are driving me crazy" b/c my frustration is going to be something she has to live with...and I feel it is my duty and should be my pleasure to do this while I am in charge of her care...
I will check back to see what other readers have to say about this...very interesting topic!
RunSickboyRun 96p · 704 weeks ago
Sherry · 704 weeks ago
Sherry · 704 weeks ago
That's all I've got. Hope I haven't painted a terrible picture of myself!
RunSickboyRun 96p · 704 weeks ago
bankrgrl · 704 weeks ago
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Katie · 704 weeks ago
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Jodi · 704 weeks ago
Cathy · 704 weeks ago
We also encouraged vegetable eating (not a favourite) with peas (bombs to hit those germs) carrot sticks (swords to fight those bugs).
Even though he could read from a early age, hospital time always had lots of reading aloud story time - Storm Boy by Colin Thiele (an Australian story about a pelican and a boy) was always read.
And faithful companion 'Chocolate Ted' still goes to hospital (son is 23)
RunSickboyRun 96p · 704 weeks ago
Heather · 704 weeks ago
Negative: I don't remember them being strict about treatments as a teenager. I wish they would have been. I had a rough college years. I had a home RT from pretty much birth to 15 then I was in charge of them....the switch-over didn't go smoothly. I had great lungs until HS, then they went down from their. I have so much scar tissue in my lungs now, its sad.
RunSickboyRun 96p · 704 weeks ago
Kellie Davenport · 704 weeks ago
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Jane · 704 weeks ago
RunSickboyRun 96p · 704 weeks ago