Sunday, December 27, 2009

5 Rules in Raising a Child with Cystic Fibrosis

Originally posted August 2nd, 2009

Welcome to the first edition of Spotlight Sunday. Today, I am featuring a blog that has five simple rules to keep in mind while raising a child with Cystic Fibrosis. Lauren does a great job highlighting the "rules" her fabulous mother taught her while she was growing up (and I guarantee still hold true today). Make sure to stop by Lauren's blog "I Have CF. So What!?" and leave her some comments. You can get to her blog by clicking on the title "How I was Raised". If you'd like to see some blogs that I have written about my mom, please click here.

How I was Raised by Lauren "LauLau"

I've gotten comments about how my mom raised me to be so positive. So here is a post that me and my mom came up with:

Here are the five rules she lives by:

1) Always look on the bright side:

My mom always maintained that we must look on the bright side. If I had to go in the hospital it was "Well at least you'll be feeling better for the rest of the school year!" The rationale for doing my treatments was that it would make me feel better for the rest of the DAY. If I got a new medicine she said "well at least it's just a pill!" and I just added it to the rest of my pills. Looking on the bright side made everything seem o.k.

2) Never let em see ya sweat, but be honest in the most positive way possible

My mom NEVER let me see her worry. She admits that when I was in the hospital she'd be up all night worrying, or when she hears me coughing at night she is concerned. But I never saw that. It's ok that she was worried and scared, she's allowed to be... but the fact that I didn't know how hard CF was supposed to be made me think it WASN'T hard. However, she did deal with it matter of factly around me. She didn't give me false expectations, she was honest about how I would feel in the hospital but she didn't make me afraid when she told me these things. I remember when I was in the hospital with hemoptysis (coughing up blood) I was so scared, and she was probably even more scared. She sat by my side holding my hand comforting me, telling me that a blood transfusion would only help me. She was honest that I might need surgery to stop the bleeding. And I trusted her, I still do, she's a nurse and she knows what she's talking about. That trust is important to have when your young and you don't necessarily know everything that is going on.

3) Stay as healthy as possible (whatever it takes).

My mom was ALWAYS on my back about doing my treatments and taking my pills. Even when I cried about it she was still persistent. She always said "It will only make you feel better" or that if i didn't do it, I would have to go in the hospital. This was enough to make me shove my nebulizer in my mouth! Sometimes, she even pretended to call the doctor to tell on me! I hated when she did that.. but she was only doing it to keep me healthy, and it worked! Now I know that I have to do my treatments because it will help ME and because she made it a daily necessity, I now see that doing everything I'm supposed to is ABSOLUTELY NECESSARY!

4) Make things fun:

Every doctors appointment was an adventure for me and my mom. Whether we sang on the car ride there (we still do), or went to a fun place in boston, we always had fun. She would get me a gift from the gift shop, or take me to the Enchanted Village (a Christmas display). Sometimes we would go out to eat to Friendly's or the Hospital Cafe. In the hospital, she brought me games, movies, and crafts to keep me entertained. She would even bring my friends in to see me! While I was doing treatments she would play games with me or just sit and chat with me. Every thing I had to do CF-wise, she made it fun. And this made everything A LOT more bearable!

5) Live your life to the fullest, and don't live in a bubble:

My mom taught me to "dance like no one's watching." She didn't put me in a bubble because I had CF. I played in the cold, did sports, got dirty, and stayed up late some nights. She never told me I couldn't do something because I had CF. Even when I missed school for 2 weeks she made sure I was doing my homework and staying on top of things. One time, I was in the hospital for my first formal dance in 7th grade. She wouldn't let my CF get in the way of living my teenage life. She convinced the doctors to let me out for the night, even though I had just come out of surgery for complications after a sinus surgery. She wouldn't have done this if she didn't think I could handle it, and she waited outside the dance for 2 or 3 hours in case anything went wrong, and let me enjoy my formal dance. CF hasn't stopped me from living life because of my mom, and because of that I am able to remain positive.

If you are a CF parent, I hope our "rules" have helped. If you would like to comment or ask my mom anything her email is

10 people had something to say...:

Sara said...

I feel like I really need to say this to both parents of kids with cf and kids with cf. My mom and dad always yelled at me to do my treatments when I was younger, but I NEVER did them, they just gave up when they figured no matter what they said I wouldn't do them. Neither one of them ever liked being the bad guy. I hated doing treatments so I never did. Now I'm a little bit older, it's caught up to me, I'm sick a lot more, still it's extremely hard to get me to do my treatments, I almost figure it's too late and it won't help me that much even though I know in fact it's not and they would. I guess what I'm trying to say is that basically, I'm more mad at them now for not making me do them when I was younger, than I actually was at the time they were yelling at me to do them. Do your stuff, it'll help you in the long run!

Karla said...

Dear Ronnie,,
Do we have ESP or what??? I have already looked at Lauren's blog,,she is a sweetheart....I was amaized at how much I am like her mom...I felt so good to have that reasurance that you may be doing it right,,and not to strict,, or to soft,, you have to meet in the middle..Sometimes that's not easy to do on this end,,or to know if that was the right thing to do or not...

I loved the part about ,,faking calling the doctor,,but that was nipped in the bud very early,,cause I don't have problems with that anymore,LOL....But,, I used to feel soooo guilty when I would tell her that,, but I knew her health came first...So now I don't feel so guilty about doing that to her when she was younger...

It's so funny looking back when she would put up an argument,,,all I would have to say is 'where is my phone',,,and oh my goodness,,, it was "okay,,okay,,plz don't call the doctor,,I'll do it".I hadn't have to use that one in years....
It's just like brushing your teeth ..We always read a book ,,play xbox,ntendo,,etc...

I'm glad your mom is on borde also..God Bless,,Karla

casey jones said...

These are great "rules"!!!
I remember my mom fake calling the doctor on me, once or twice! lol

Hey ronnie,

Thanks for leaving the comment on my blog, its little things like that, that keep me motivated too...for the first time in a LONG time i'm actually sticking too it and doing my stuff the right way, it sounds bad when I say it that way, like I haven't done my treatments or pills my whole life, I have, but just not consistantly EVERY DAY, ON TIME, AND EXERCISING! It feels good and I know this appointment tomorrow is gonna be good.

Thanks again(and thanks for posting this blog, its great!)

-Casey Jones

Marie said...

Thanks for posting this story as it applies to most of us who have children with a chronic illness. I know that in my case, Megan gets to tired of the Dr. visits, the tests and when the prescription pad comes out - I see it in her eyes - "uuugghhh - more pills" We do try and make the visits fun and memorable. I don't let her see me worry, but when she is in such pain sometimes or so discouraged - I can not hold the tears in from her. I know she is strong, like you and Lauren. Thank you for the reminder from "your" point of view. It is good to hear that side of things.

LauLau said...

Thanks again for using my post as your Sunday Spotlight, I hope your readers enjoyed it (I hope they will check out my blog as well!: )

Ronnie "Sickboy" Sharpe said...

Sara- You're right, this applies to BOTH parents. My mom just happened to be the CF sergeant in my house and it sounds like it may have been the same with Lauren. Very interesting point about being more mad at your parents now for not making you do your treatments.

Karla- Sounds like you're doing a good job! Keep it up!

Casey- Keep working hard and the comments will keep a-flowing!

Marie- Thanks for stopping by the blog! You're right, this list can apply to parents with children with any chronic illness

Lauren- Anytime! I hope people are coming by and checking out your blog, it's a great one!!!!


MamaBombo said...

Ronnie, Thank you so much for honoring my baby girl this way. This is Lee, Lauren's mom. I just love your positive attitude and sense of humor.I think you and Lauren are somehow related! I am thrilled she has you and adult CFers and parents to connect with. She thinks the world of you.I love how you called her Cysta! You crack me up........and you and I both know that is what gets you through it! Anyways just wanted to say hello and a great big thank you. Keep on doing what you do. I look forward to reading your blog everyday. Hope you are feeling stronger everyday after your cleanout. Take good care! Lee B.

Ronnie "Sickboy" Sharpe said...

MamaBombo- It's my pleasure! You have a kick-butt little girl there and your a big reason she is the way she is. Kudos to you!!!!


Jess said...

I couldn't agree more!!! This is how I was raised as well and still continue to look at my life. Thanks to Lauren, and you for such a great post. We continue to kick CF's butt! :)

Carrie said...

That was a great post...thank you Ronnie for telling us about it on your blog. As a parent of a 5 year old with CF that was really inspiring to read. Sounds like you a had a great mom.