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The other day I received a comment on this blog that was directed towards my momma. I forwarded it on to her because I thought it was so nice and then she sent me her response :) I thought you guys would enjoy reading it:
Reader's comment:
Dear "Ronnie's mom,"
Thank you for letting Ronnie post this! I would not only like to hear from you more often, I would thrive on it!!! My 18-month-old son has CF. My husband and I want to raise him to be a strong, confident, happy, faithful man of God... pretty much just like your son! Reading Ronnie (and Mandi's) blogs, watching the YouTube posts, and being a part of Cystic Life gives our family so much hope and so much joy. Thank you for blazing a trail for CF moms that follow in your footsteps. The openness with which your family shares their hearts is an incredible ministry! God bless you!
Sincerely,
Name Withheld
"Ronnie's mom"'s response:
Dear Name Withheld:
Thank you for your kind words! Ronnie is an amazing son and I couldn't be more proud. And then, he married an incredible young lady giving me an amazing daughter. My first one! They make a dynamic duo!
I have heard that CF parents would like to hear about how I parented Ronnie, but I truly struggle with that. Really, I'm no expert! I raised Ronnie, much like I was raised, but with a twist. CF was never the center piece. It was worked into our lives as routine. Absolutely, when Ronnie was sick it became top priority to get him better, but then we moved on. I remember a Mom saying to me (who had lost her two young daughters to CF) "You live everyday like it's your last, don't you?" Out of respect, I said nothing, because I had not felt her grief. But I thought to myself, "No, I live everyday looking forward to the next." I must tell you, Ronnie was at times a very difficult child, but not because of the CF. Because he was Ronnie! A resourceful, quick-witted, gregarious young man who never took "no" for an answer. It was contagious! If Ronnie thought he could do it...who were we to stop him?
My parenting style was very "matter of fact!" I didn't beat around the bush. Aerosols and treatments...in those days...hand pounds (P&D), were part of the daily routine. P&D was like brushing your teeth. It's just what we did! When he was young I'd play games with him during P&D. I pounded rhythms like "Three Blind Mice" or "Old McDonald" and he would guess. "I Spy" was another game. As he got older, that time together was used to talk about family, current events, school, etc. Certainly there were many times we talked about CF and I was straight up honest (age appropriate). Were there times when we fought about treatments? Absolutely! Especially the teenage years. I tried reverse psychology, but Ronnie saw right through it! I made deals...want to go out with friends (squeeze in an early treatment), want to miss a treatment (extra treatment the next day). And sometimes...I just got mad at him! I remember asking the doctor when he was in his late teens and it was such a struggle. "When do they wake up?"
There is one area of CF I feel is the most important. Give your child their voice! As soon as Ronnie was able, I encouraged him to communicate with his doctors. Ronnie knew exactly how he was feeling about his breathing, mucus, coughing medicines, poops, etc. Why should I put words in his mouth? Now, that said, knowing Ronnie and some of the crazy things he could come up with...there were times...I must admit...that I'd communicate to the doctor with a brief little headshake, a stare, or a wink, but Ronnie didn't know that. I think that's part of the reason why Ronnie is so outspoken today, not hesitating to give his opinions, likes and dislikes, needs, etc. Empower them and they will take ownership.
I wish you the very, very best. Enjoy! 18months old...such a wonderful age.
Thanks for letting me ramble.
Ronnie's Mom
I couldn't agree more. If you have any questions for my mom I could certainly pass them along. Maybe she would try to tackle a few of them. Did you hear that momma?? :)
