Wednesday, October 5, 2011

How Did Your Parents Positively Impact Your CF Life?

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!

Question: How did your parents positively influence your life and living with CF? How did they negatively influence your life as a CF’er?

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?

Comments (18)

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Love this post Ronnie! It really makes me think about how I would answer these questions.
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!
1 reply · active 704 weeks ago
Sounds to me like you are doing a great job momma!!! CF is tough, no doubt about it, but you seem to be approaching this CF life with the right attitude. It's all about putting our kids in the best position to succeed :)
Great topic! I think I positively impact Rachel's CF life in many ways. Treatments are how we kick CF butt. I let her make some of her own decisions regarding her CF health....(5 year old level). She's involved in some group activities - gymnastics, AWANA, playdates, parties. We will do just about anything, but only after treatments are done. We exercise in fun ways... jog with the dogs, beautiful hikes, kickball, etc. While getting exercise, I tell her, "Girl, you have CF/mucus so scared right now!" I educate her on her body and what CF can do/does to her body ( 5 year old level). While she's doing treatments, I'll whisper sweet words in her ear.
2 replies · active 704 weeks ago
Negatively, when she's seen me get upset over the news of someone in the CF community not doing well or worse. Sometimes may go overboard with the hand sanitizer!.....when were out and about and there is no bathroom to wash hands(she's 5...the hands still go in her mouth sometimes). She's had one sleepover at a friends house. I had her do chest therapy here, only took her pills, and picked her up by noon so she could do her morning treatment at home. I did it this way b/c I was being lazy and didn't want to go into how to do the chest therapy/breathing treatments with my friend. When really all she would have had to do was set it up and Rachel could have started it. I don't know....maybe next time. I'm very protective over her treatments and CF care...somebody else might not do it right! Right? lol I have a lot of anxiety just thinking about somebody else doing her treatments and handling her equipment. What if it's not washed right? What if they forget to wash their hands?
That's all I've got. Hope I haven't painted a terrible picture of myself!
I think you've painted a good picture Sherry! I like the "Girl, you have CF/mucus so scared right now!". And for what it's worth, I think you played her staying at a friends house just right. For her age and health, it's not important when the treatments get done, just that they get done. My mom would handle it the exact same way and I think that it's perfect. I never felt like CF was ruining my fun, because treatment was flexible.
My favorite memory is with my father and our nightly PT sessions ... he would always pound me to the beat of Hill Street Blues. I still remember the song to this day because of all those years of PT. Now, on the rare occasion that he feels the need to beat me, he'll come up with some funny drum rhythm. I also love that he is not afraid to give advice to new RTs in the hospital about the best way to do PT. He's even been known to give a demonstration or two!
1 reply · active 704 weeks ago
Sounds like my mom!!!!
For me it was always RT during Jeopardy. Surprisingly I still love the show, and it totally contributed to my vast knowledge that helps me out during pub trivia these days.
1 reply · active 704 weeks ago
You must be pro level at pub trivia :)
I remember hanging out at my friend's house when she got her chest PT. Her Mom would let her (and me) pick the show, or the muisc or the location where it was done. Sometimes I got to help, but mostly I was there to keep her company. We would get the 5 minute warning to finish up what we were doing before we had to report for therapy. If she stayed at my house her medication would come with and her therapy would be done before she came and as soon as she came home. She also got to pick what they mixed her medication in; before she could swallow pills. I remember her practicing with Tart N Tiny candies. Her parents were the perfect combination of what was right for their daughter.
I used to do a lot of chest pounding on my son to the poems of AA Milne (Winnie the Pooh).
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)
1 reply · active 704 weeks ago
I LOVE what you called the veggies! Very clever momma :)
Positives: Whatever the craze was, I got rewarded with it. Like when I was in 3 or 4th grade and on home IV's (by then I was doing them pretty much myself) my parents would reward me for each IV Med I did with a pog of choice, and when I did like 10 tube feeds I got to go get a slammer....It worked for me. Each Dr visit we ate lunch at Cowboy Grub, and every hospital stay my grandma got me PJ's.

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.
1 reply · active 704 weeks ago
I think that is such a powerful messages to share with parents - a lot of us actually WISH that our parents were more strict about treatments. Maybe a guest blog from you is needed?!?!?
I learned a ton from this post! Thanks for posting and for those who shared! I'm always trying to find ways to be a better mama to our little man and how to effect him positively for his future! Thanks again!!
1 reply · active 704 weeks ago
Anytime that you learn a lot, I know we're doing something right :)
My son, who turns five tomorrow, will have to add to this post in a few years. One thing I feel really good about is giving him the language to talk about his cf. We were visitting friends this summer who he had never met. As I unpacked our suitcase and our medical junk, he turned to his new six year old friend and said, "My body works differently than yours." It was a simple easy explanation. I'm really proud to hear him describe what cf is to other kids in his own words.
1 reply · active 704 weeks ago
That's awesome!!!

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