I had a great correspondence with a CF mom named Amanda last week. Having two daughters of her own with CF, she asked me some great questions and I think a lot of Moms would love to hear what we had to say. Raising children with CF is tough, but if you have the right attitude (like I can tell Amanda definitely does) it will all work out in the end. I told her (from a growing-up-cfer’s point of view) how I was raised, and she made some great points as a CF parent herself too!
Amanda: I try so hard to not think about our girls having CF. A lot of the time i forget. The treatments and meds are just a part of our life now. i think i would feel lost if i didn’t have to do all of it for our girls. People tell me all the time that they would have never known that anything was wrong with them and i LOVE hearing that!! lol
i think the thing i’m soo scared of is when they get old enough to take care of themselves. are they gonna keep up with their meds and treatments? How did you deal with that? i’ve heard such horror stories, that is something that i for sure CAN wait for LOL. That and school, makenna is gonna be 3 and we have been talking about putting her in preschool but i’m terrified! i guess i just need words of encouragement…
Me (Lauren): Amanda, it sounds like you are doing a great job of raising your girls! I get that “compliment” that people didn’t know anything was wrong a lot too. That is something to be proud of, that your girls are able to live normal lives without CF being an obvious feature about them.
To be honest, it took me until I was about 13 or 14 to realize that I had to start taking care of myself and stop fighting my mom about it. She was patient though, she allowed me to figure it out myself while being there to give me a little push when I needed it. She was persistent about getting me to do my treatments no matter WHAT. Your kids might scream and curse and cry, but as a mother, you have to make the decision to fight through that. I had some harsh things to say whenever my mom said “OKAYYY TIME FOR YOUR TREATMENTS!” or “Did you take your pills?” It was mainly annoyance that I had to take time out of my normal kid life to take care of myself. But honestly, looking back, I am so incredibly thankful that my mom kept nagging me. She would ALWAYS disclaim her “nagging” comments with “It’s only cause I love you! And I don’t want you to get sick” When I was younger, she used to pretend to call the doctor when I wouldn’t do my treatments (it sounds harsh, but again, I’m so thankful for it). A threat of a trip to the hospital was enough to get me to just commit to doing my treatments. She also had a chart with stars for each day I did my treatments and every time I did them for, say, a month in a row, I got a trip to the candy store (helps with the high calories too!) My parents would make “treatment time” part of the daily regimen, until it became as routine as brushing your teeth. I would do them while watching my favorite morning cartoons before school, and dad would play games with me. It wasn’t work, it was fun. Now that I’m older, I do the same thing. I do my vest while I watch TV or go on facebook, every day at the same time before work or class.
My parents were always very open about my CF. I’m pretty sure I understood the genealogy and reasons for my medicine by the time I was 10. It wasn’t something that was “hush, hush” Often, children who are raised that way aren’t as compliant because they would rather hide what they are doing (such as treatments) by not doing it at all. Now that I’m taking care of myself independently, I do my treatments in front of all my friends at school, most everyone knows what I’m doing and why, and CF doesn’t seem as big a deal to me when I have the support of everyone around me.
THE most important thing my mother did was not keep me in a bubble though. She never told me I couldn’t do something because I had CF. She let me play soccer and basketball, go to school (yes, even during cold season), play in the dirt, eat cookies and sweets, stay up late, and through all of this she allowed me to take responsibility for my actions. You have to see your kids as kids first, and kids with CF second. That’s not to say that you should ignore it, but you shouldn’t let it get in the way of anything. You make taking care of themselves a part of their normal life. That way, when they get older and have to start taking care of themselves (like me) they see CF as another minor bump in the road rather than a burden.
With all that said, the way your kids grow up with CF is for the most part, in your hands. If you trust that you can handle it, I know you will be able to. My mom was brave in the way that she raised me, she nagged me no matter how much I cried, she was persistent, and she gave me a memorable childhood because throughout everything our family went through with CF, she loved and cared for me like a mother should.
As hard as it may be sending makenna to school, I’m sure she will adjust just like any other kid. I’ll admit I had my fair share of crying days before pre-school, but I think it would have been like that regardless if I had CF or not. Be brave like my mom was, and persist!
Amanda: thank you so much for sharing all this with me. your so much like me its crazy!! I’m so with you on not keeping them in a bubble. we just went camping this last weekend, their first trip :), and they got so dirty and madison was eating dirt! LOL i didn’t even worry bout it.
It drives me NUTS when MaKenna says “i can’t do it!” i hate when she says that!! i tell her all the time that she can do anything she puts her mind too! i never want them to feel like they can’t do something cause of CF. i want them both to play all kinds of sports and be so active.
We are so open with all the meds and treatments. We always do madi’s bopping at 7pm and makennas at 730 no matter if there is people here or not. its hilarious to watch people that have never seen it. not really funny but its kind of cool to be able to inform people about it.
again thank you so much for talking to me. You have made me feel so much better. Its so cool to talk to people that know exactly how we feel and what we are going through. well the parents side anyhow. i know that i wont ever know exactly what the girls go through but i think its affected us alot also and i think that if anybody can understand its the parents of a CF child.