Friday, June 4, 2010

Wisdom from Ronnie's Mom

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?? :)



Comments (6)

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Your Mom's reply back made me smile ... my Dad used to do my CPT to Hill Street Blues. I will always be able to remember the opening music to that show for that very reason.
wow thanks so much!!!! that was very encouraging and i agree with everything you said!!!!! thanks for sharing!! i feel like i try to appreciate more and take more in but i couldnt agree with you more about not living everyday like it is your last but realizing its a gift and living for many more tomorrows :) we are always praying for ronnie's health as well as a cure for CF I would love to see our boys(well my boy Levi who is 4 and your son who is a man i dont want to offend anyone by saying boy :) healed someday!! I look forward to more posts from you! thanks you are a great mom!!!!!
melissa leonard's avatar

melissa leonard · 774 weeks ago

your mom has it right.she made me smile on her post.i have a daughter thats 18 an like your mom when the time is right i let her talk to the doctors.but now she is like u cant keep her mouth shut for nothing. :))) i think we all go through the teen age thing,because i am still dealing with her an the meds.it got so bad that her doctor stepped in gave it to her point blank.i have a lot of help with her doctor because he has been taking care of her sence hes was 5 months old.he his like a 2 parent to her.when she was younger we did the play games with the treatments an the cpt.as for as the meds that was a rough spot till her got old enough to take the pills her self.an i feel the same as your mom u have to live every day to the most an all ways look forward to the next.thanks for all post on every thing it helps just to know that they have people like you'll to help us out when we need it.it would have made my life a lot easer to deal with when she was a young kid if we would have had all the suport that you can get these days.keep up they great post they help a lot of people.
Aunt Janna's avatar

Aunt Janna · 774 weeks ago

As Ronnie's aunt, I have to share an experience about his young life and treatment and how it was just part of life - nothing exceptional - especially to him. When he was perhaps 5-7 years old and there was a phase of "home treatment" as an extension of the hospital tune-up (really a way to decrease the cost of care to the insurer I think), Ronnie would be sent home and a home care specialist was to visit on a regular schedule. HIs IV line was still in place (heparin lock) and often times the IV meds would be administered at home by his mom or a family member. When Chris was at work this was at Grandma's house. At times I would go to Grandma's with my kids (his cousins) and start the antibiotics which were contained in balloon like object inside a clear hard plastic cover (size of a baseball). Ronnie would get hooked up and had to wait for the meds to run - way too much time to sit quielty! One time I found him in the front yard playing with his cousins, running full speed across the lawn with the antibiotic "baseball" flying behind him at the end of the IV tubing like a kite! All I can say is that was and is Ronnie! It still make me laugh to recall it!
Dear Ronnie's mom - I enjoyed reading your post and reply back to the other mom. I am the mom of a 14 yr old teenager w/CF and yes it can be challening times and I'm sure I will have a few more years of that before she figures out why I keep pestering her about her treatments. I am so worried about the college years but trying to enjoy her high school years and not stress about what is to come and can only hope that her dad and I have done all the we can to teach her how important adherance is. Like I said to someone the other day "I'll be darn if she messes up all I did to keep her healthy from birth to her college days-LOL" I am also at the point where I'm trying to get her to truely understand the importance of God in our life and hers. I hope that she knows that God is her Rock! Thank you for sharing and you should be very proud of your wonderful son (and new daughter-in-law) Take Care and Congrats to all of you.
Lee Bombardier's avatar

Lee Bombardier · 774 weeks ago

Ronnie's Mom, What a beautiful post!! I have a 19 year old daughter, Lauren. We both follow Ronnie and Mandi's blogs. My philosophy on her upbringing was similar to yours. We always said"we can't keep her in a bubble". ....and God knows if we tried she would have burst out of it long ago!! Lauren is truly amazing and inspires me everyday. She is probably the most positive upbeat person I know. It is so nice to see her taking full responsibility for her health.
Anyways I just wanted to say nice, job, strong work Mom!! Thank you for encouraging and advising so many young parents. You must be so proud of Ronnie. He is amazing. Congratulations on his wonderful marriage to Mandi. What a match!! Such a beautiful couple.
Take care and keep on doing what you do! Lee Bombardier

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