Being The Parent to a Teenager (With Cystic Fibrosis) Is Hard

It's been awhile since I've answered a question through the blog, or written anything for that matter, so hopefully this spurs me into writing more blogs!

Hey Ronnie. Hope you have been doing well! Question for u. I'm hoping u can give me some insight as to whether or not I'm being too nagging of a mom or not, and to see if you went through some of the feelings/emotions ______ is dealing with right now. . 

First, please understand that it is essentially impossible to be a parent and not a nag. I can't imagine a world in which a caring and loving parent doesn't nag once in a while. Now, an apathetic parent won't nag, but if you're an apathetic parent and your child has cystic fibrosis, he or she is probably screwed.

He is 14 yo BTW. 

Say no more! I have known very few, if any, unemotional, or frankly, level-headed 14 year-olds. Certainly some of his response can be as an indirect result of having cystic fibrosis, but it is more likely due to many of the same issues most 14 year-olds go through socially, physically and mentally.

Anyway, he had his clinic visit last week. Not a great visit for him, as his weight and BMI continue to drol, along with the fact he has this lingering cough that reoccur after being off oral antibiotics for a week or 2. Anyway, since that visit he has been not himself. He is usually a pretty laid back, go with the flow, happy...and compliant....kid. But something changed in him after that appt. 

We all like to feel like we're in control and doing a "good job". My guess is that he felt like he had lost some control over his body and as a result "failing". With many CF patients I've known over the years a common response is, "What's the point of taking such good care of myself if it doesn't really matter anyway?". With this, they are saying that death is inevitable and taking good care of themselves doesn't seem worth it. In my opinion of course, they are missing the point. Yup, we're all going to die. I'm not concerned about that. I'm much more concerned about being at the top of my game while I'm alive. It would really suck to feel terrible, hate life and then die. I like the prospect of feeling good, loving life and then dying much better.

I've really been on his case about him taking over more responsibility when it comes to remembering to take his pills, especially his appetite stimulant. I've also been on his case that he needs to be eating more, as I'm afraid if his BMI drops anymore they'll want to do a feeding tube for nighttime.

I'm sure that he is more than aware of the possible consequence of not maintaining a healthy weight. You'd think that'd be a deterrent wouldn't you? Now, who has the ultimate decision to make whether or not he would get a feeding tube if he were to drop below a satisfactory weight? Are you going to make the decision? Will he?

Last night I saw a side of _____ I've never seen. After having a lengthy discussion about him just eating fries for lunch and not taking his pill, he freaked out. Went up to his room and was so angry he kicked the wall putting a hole in it. 

First, I hope that he will be paying to fix the wall. Second, sounds like a teenager. Third, he sounds ripe for natural consequences of his choices. Just as the consequence for kicking a hole in the wall is figuring out how to pay to repair it, the natural consequence of not taking your appetite stimulant and maintaining a healthy weight is medical intervention. It's not a punishment, it's just the result of his choice. Now, if he's making the decision and elects not to get a g-tube, he'll have to deal with those consequences as well.

On a personal note, my mom made basically every medical decision for me until I moved out of the house at 20 years of age. If I lived under her roof, I went by her rules. Her number 1 rule for me was to do what was best for my health. Missing treatments wasn't a option and I often had a tune-up if my numbers slipped just a bit.

Mind you, this is sooooo out of character for him. I tried getting him to talk about what he was feeling, but couldn't get him to open up. I'm guessing he's annoyed as heck with me nagging him about all this CF stuff, and I think he's just plain pissed he can't be a "normal" kid and not have all the worries/responsibilities that CF brings. 

So, is his big issue the appetite stimulant? If he does all his other therapies, which require a lot more time, but has an issue with a pill, I feel like there is something bigger going on. Does he take it at home? Id his issue taking it at school?

My heart is sad for him. I explained to him I don't mean to be a nag....that I am just trying the best I know how to prepare him for taking care of himself when he goes off to college. 

I'm sorry. Being a parent is sooooo hard. Being a parent to someone with a chronic illness can be even tougher.

Do you remember getting upset with your folks like this when it came to CF stuff? 

I'm sure I had my moments, but honestly, my mom established early that it was her way or the highway. I got upset about plenty of stuff, but generally speaking, it wasn't CF related. Maybe it was because the burden of treatment time wasn't as lengthy for me when growing up? Remember, I didn't have a Vest until I was 19 and Pulmozyme came out when I was 14 or so. Until I was 14, I only got pounded by hand twice a day, did albuterol and of course the various pills.

Any words of wisdom or advice you could give me would be appreciated more than you know. Sorry to ramble on, bit I thought you'd be a great person for me to get some input from. Thanks.

I don't have many regrets, but one of them makes since to share here. I made some very bad decisions when I thought life was all about me, friends, school/work, sports and having fun. I've ALWAYS loved my life, but I definitely made decisions in spite of CF and far too often ignored my CF to "be one of the guys" and not let CF or my treatments get in the way. I always felt like a fit in, that wasn't it, but I was too stubborn to let CF cause me to "miss out" on something. If it were a choice between doing a treatment or getting ready to hang with friends, guess what I would do? Deciding to get to the bar early or do my nighttime treatment often resulted in me getting to the bar early. Getting a mid-day treatment in was often trumped by working as much as I could during the day.

Looking back, none of that mattered. Did I have fun? YUP! Was I helping people and making the world a better place? I hope. Would I take it all back to not have to do so many treatments now and miss time with my family? In a heartbeat. I can't tell you how many Valentine Days and anniversaries I've missed because I was in the hospital. It sucks. I feel guilty. I feel completely selfish for the decisions I made in my 20's that lead to a huge drop in my health.

I wish I wouldn't have "lived" so much then so I could live with my family more now. I wasn't nearly mature enough to realize that then and honestly, I don't know what someone could have said or done to change those decisions.

As a parent, I think you need to try and picture yourself 10 years from now and look back and make decisions now that you'll be comfortable with. Make sense?

My mom was tough. There were a lot of times that she wasn't nice. I certainly "hated" her in some moments. But I know she can look back with confidence in the decisions she made with me knowing that they were the best at that time and with the son she had. I love her to pieces and am so thankful for the mom that she was.

"I Lived" Because of Christine

I was very impressed (that would be an understatement) when I saw the new One Republic music video "I Lived" for the first time. It may be the best awareness video that has ever been put out in the cystic fibrosis community. It is rare to find an awareness piece that does such a great job in striking the perfect balance between education and inspiration. 

"I Lived" by One Republic

The music video below features real-life CFer Bryan Warnecke talking about what CF is, how it's treated, what his expectations are, his fears, his blessings and everything in between. What I took note of however, which may ultimately be most important for CF patients and their families, may not be what others noticed. Before I get into that, please watch the video below:  

Be Who You Want To See

So what struck me most about that video? His parents. I wish I could give them a hug and a high-five and say "job well done". They put their son in the best position to live out the title of the song. That video was much more about life than it was about CF. And when our parents allow us to live, in spite of CF, we can often look back and credit their approach for our successes as CFers.

Did you see how they raised Bryan? And in return, Bryan's attitude toward a life with CF?

"It's just one of those things that really makes you appreciate life. Makes you appreciate where you are as a person." - BW

That would not be his attitude if he was raised to fear a life with CF. If he was made to think that life gave him the short-end of the stick.

I do not know them personally, but I guarantee they modeled that mentality through action and words.

Judging by the clips, the last thing on their mind was that CF was a life-altering or life-shortening disease. Judging by those clips, they parented their son Bryan, and not the disease cystic fibrosis.

A Life In Spite of CF

So what did living life in spite of CF look like to them?

• Falling into a pit of foam, in a public play place (eeeeeeek!!!) at 1:17
• Riding a bike and falling over without a parents fear that their son is somehow "more fragile" at 1:47
• Riding in a tractor down a dusty road (oh no!!!!!!) at 1:56
• Water skiing in a lake (please make it stop!!!!) at 2:07 and 2:11 (with mom cheering in the background)
• Tumbling over in an electric ATV then being "put back on the saddle" and encouraged to try again at 2:19
• Boogie boarding in the ocean at 2:26
• Jumping head first into a pool, maybe public (ahhhhhh!!!), at 2:35
• Snow skiing at a presumably high altitude at 2:58
• Back to the dusty tractor ride at 3:00
• Playing hockey, which I assume means he's in a public locker room with his team at some point (I can't take it anymore!!!), at 3:24 

A Life Ruled by CF

Now, I didn't randomly pick those scenes out of thin air. I picked them because they are all things my mom would have prevented me from doing 34 years ago. When I was diagnosed with CF, my mom forgot that she had a son and instead only remembered that I had a disease.

Does that make her a bad mother? Absolutely not! She did the only thing she instinctually knew how to do as a mom - protect me. Her protection came in the form of shielding me from the outside world in fear that I would become "more sick".

If she would have continued parenting me like that, there is no doubt that I'd be dead.

My Life Changed

By the grace of God, at the age of 5 or so, my very imperfect mom with the very imperfect kid made the most perfect decision, to let me live. In fact, it was this quote by my doctor that started it all...

"If you continue doing what you are doing, not only will Ronnie be somewhat physically disabled his entire life, but he'll become mentally disabled as well...and that's far worse"

That's when my life changed.

She no longer parented the disease, she just started to parent Ronnie, her rambunctious son.

Mind you, this was still tough sledding for my mom. Not allowing the disease to make every decision for her didn't feel natural. There were many times where her heart and her head didn't agree. She had to practice parenting me apart from the disease. It was a decision that she chose to make every single day. That doesn't mean it was easy.

The fear was still there. The agony still hovered over her at times. The doubt crept into her mind from time to time. You know what though? She never let me see that. She would cry herself to sleep almost every night, something I didn't know until about 6 years ago. I never saw that.

After she popped the bubble she formed around me, the only mom I remember was the mom that told me to live, and live well. The mom who sacrificed her afternoons and weekends by having me in sports year round. The mom who made my health our families number one priority, while still be a fantastic mother to my two younger brothers. The mom who would come home physically and mentally exhausted from work, yet made sure to hand pound my chest, back and sides for 45 minutes like she had done before leaving for work in the morning. The mom who took a job that she was overqualified for, and not all that interested in, because it had the best medical insurance in the state. The mom who made me believe that if I put my health first, I was capable of anything. The mom who talked about when I would go to college/get married/make her a grandma, and never "if". The mom who made cystic fibrosis feel like such a small part of our lives, even though most of her energy went to managing it. The mom who raised a boy who was proud of having CF, because she made it clear that she was proud of me - the boy with brown hair, buck teeth, a loud voice, fast feet, quick wit, and oh yeah, cystic fibrosis.

I'm asked all of the time, "where does your attitude come from?". That's easy. My mom.

My Mom, The Perfect Mirror

My mom made me into the man I am today by using CF, and it's inevitable challenges, as another tool in her tool belt. She had me convinced that CF helped mold me into the boy that was the "apple of her eye". She always talked about what a blessing CF was to our family. She was quick to point out the opportunities that came along because of cystic fibrosis. She often reminded me of all of the great people I met and friends I had that would have never been a part of my life without CF.

I loved my life with CF, because my mom loved our life with CF.

Frankly, if she would have shown me that she hated CF, I would have thought that she hated me, too. If she would of shouted "CF sucks", I would have heard "our life sucks".

I never once got that feeling from my mom. I haven't heard her speak a bad word about CF to this day.

She perfectly modeled everything she wanted to see in her son and for that I am forever grateful. Like Bryan's parents, she made sure that a life with CF was a life full of living.

The only reason I'm able to write this blog 34 years after I was diagnosed with cystic fibrosis - with her granddaughter tucked safely in bed and my wife nestled up on the couch -  is because I had a mom who believed, from the bottom of her heart, that I would.

"I Lived" because of Christine. I love you mom.

There was never a doubt.

A few weeks ago, I celebrated my 33rd birthday. Like all other birthdays that I've had, I made much less of a stink about it then some of those around me.

I got many kind phone calls, texts, emails and Facebook comments that I appreciated and certainly lit up my day. It was also some of those comments that inspired this blog:

"Every birthday for us is a good one"
"Wow, 33!! Bet you never saw that coming!"
"Cherish all of your birthdays because none of them are guaranteed"

and on, and on and on....

Now, let me be clear. The people that left/said these obviously meant nothing negative nor do I think they were doing a bad thing. Many of us have been trained over the years to throw-out CF specific phrases at such a time (none of the above would have been said if I didn't have CF). I get it. And, I still very much appreciate them thinking of me on my "special day". It's just that if I'm being honest, those type of comments don't sit well with me, not because they're bad, but because they are so counter to the way I think and the way I was raised to think.

I never had a doubt that I would see 33. Neither did my mom. It was never talked about like some "pie in the sky" idea that I would grow old, graduate from college, have a career and raise a family. At least it was never talked about as a hopefully or if kind of a thing from my parents. It was always talked about in the context of when.

My mom made it clear. I would celebrate a lot of birthdays. Not because I was special. Not because she was so good at parenting. Not because my CF wasn't going to be tough. No, it was because CF was  tough and a tough disease requires a tougher reaction to it. She taught me that my reaction would be one of self-confidence through a belief in treatments, a life of exercise/activity and a faith in God.

She knew it wouldn't be easy. She knew I would make mistakes. She knew CF would never take a day off. However, the thing she said to me more than anything else was that she knew I would be okay.

That confidence came through nothing else but knowing she had done a great job in instilling the values that are still with me today: Personal responsibility, never quit attitude, embrace my failures to propel me to successes, do for others and family first.

And so I ask myself, what if my life hadn't turned out the way it has so far? Would I blame my mom for having such a will do or can do outlook? I certainly don't think so. I've also spoken to many others about this and they feel the same way. In fact, the peeps that I talk to who have an issue with their parents are the ones who had parents raise them in the opposite manner. The parents who held them back. The parents who insisted on raising a 25 year-old child because "they knew better". The parents who didn't make treatments and health a priority. The parents who told their kids about all of the things Cystic Fibrosis would stop them from doing.

I know I've talked about my mom a lot on this little old blog, but that's because she played such a pivotal role in who I am today. I think about life the way she raised me to think about life. My attitude towards CF is her attitude towards CF. She helped make me into the man that my wife fell in love with. She's given me some of the tools that I hope will assist me in being a great father. It's because of her that I've not only seen 33, but that I've lived the last 33 years and will live another 33 more.

I'm here because of the people who love me. Not in spite of Cystic Fibrosis.

They Are ALWAYS Watching!!

(I posted this on Facebook the other day, but I wanted to make sure that you guys saw this too. Not only do I think it has a good "life lesson", but I'm still amazed at the mind of a 14-month-old.)

Make sure you stick around for the moral of this story...

Mandi and I had an empty case of Gatorade sitting by our back door. By our back door is generally where we put large recyclable items that don't fit in the recycle container. Tonight, Mckenna (our 14-month-old daughter) walked over to the empty case and picked it up by one hand. With the other hand, she pointed at the back door and said "That!". We opened the door. She then proceeded to go out into our backyard with the empty Gatorade case in hand. We followed her. She walked about 60 feet along the back of our house until she got to a gate that leads into our side yard. She stopped at the gate, pointed to it, and said, "That!". We opened the gate. Mckenna then walked another 60 feet along the side of our house, still dragging the empty Gatorade case, until she got to two receptacles - one for trash and one for recyclables. I asked her which one the box went in and she pointed to the blue recycle bin and said, "That!". Mandi picked her up, opened the lid and Mckenna dropped the empty case in the recycle bin.

What's the moral of this story? Our kids are watching our every move. They watch what we eat. They hear what we say. They see how we react. They take in our emotions. They do what we do.

Children mirror their parents. Even at such a young age, the learning for "real life" is taking place.

Children learn what's right and wrong from two sources, and two sources only - the parents, and the teachers that the parents allow in their child's life. Be a good model for your child and choose your teachers, even the non-human kind, wisely.

Are You a Dream Cheerleader?

Mandi had a great post yesterday about dreams not coming true when looking at it from our perspective, yet still living the dream since we aren't the ones in control. If you didn't get a chance, you should really check out the post, it's a good one!

It got me thinking back to my childhood, my dreams, and how my parents fostered that "dream for the stars" mentality in me.

If I were to hone in on one point for this blog however, it would be this - Parents, you should be the biggest cheerleader ever in the dreams department.

It's funny, when I was young (confession time), I wanted to be a lung specialist. I mean, it makes sense right? I was around hospitals all of the time. I could handle all of the jargon that was thrown around. Blood and guts have never bothered me. I was always talking with pulmonologists. And of course, I was for sure going to cure CF one day :)

Now, my dream occupations changed from time to time, but I would generally always land back on being a doctor. In my younger years, I was very vocal about this dream.

It's important to point out that this was also a time in which they were figuring out that we CFers really shouldn't be around each other. It was also a time in which very few CFers attended college, and of those that did, very few graduated. CFers who actually were doctors? Well that was obviously few and far between.

I didn't care though. I was going to be different. I was going to buck the trend and be the first CF specialist with CF that exclusively worked with CF patients. Knowing the time and the situation, you would have thought that my mom would have been "the bearer of bad news" or in the very least realistic with me. Nope, she wasn't. She was my cheerleader, just as it should be.

Growing up, my mom never uttered the words "Ronnie you can't" when it came to my dreams for a future. Talk of college, career, marriage and babies were had on the regular in my house. It was never if those things were going to happen, but when.

Did my mom actually think that I was going to be able to fulfill all of my dreams? Who knows. Better yet, who cares?!?! The important thing is that she raised me to be a believer. A believer in hard work, commitment and personal responsibility. She raised me to chase my dreams in-spite of CF. She raised me to chase me dreams because of CF. My mom convinced me at a very young age that my formula for making my dreams come true was the same formula that my friends used. Surprise! CF had nothing to do with it.

So, did I become a doctor? Not even close. But do I appreciate my mom for knowing that I could have been one if I would have chosen to pursue that path? Absolutely.

You see, our children are no more worse for the wear if you encourage them to chase their dreams and they still fall short or choose another direction. It's more important to us that you believed in our dream as much as we did. We don't need everything to fall into place exactly as planned to be "living the dream".

We do however need a dream, and we need a dream cheerleader. Are you up for the job?

Then grab some pom-poms and let's get to work!!

Treatment Fights

Here's another great question by a momma in the community. This one is of course VERY common and a struggle that nearly every parent faces. If you don't face it now, more likely than not, you will in the future. Hopefully this helps at least just a little bit.

Thank you ronnie for taken the time to get back to me .Well here it is how did your mother dill with you not taken your medication ,and treatment and when did the crying stop and when did she move on and let you do it on your own ? there is some days i just want to give up and move on with my life ,but he is my life and well your a father you no that your child is your world what are you going to do if they not here ? Hope that doesn't happen but he isn't do the thing he needs to do . And on the idea's i would love to help the next child with cf get it that they need to do they treatments and medication before it to later thats all ,if i could make a different in someone , help them understand that they mother is doing what is best for them .Thank you so much for taken the time to talk with me.

My mom instilled rules and stuck to them at a very early age. I literally had no other choice but to do my treatments. My life really sucked when I refused to do them. After a couple times of my life sucking, I decided that it wasn't worth fighting.

He lives with you right? The only thing you owe him as a mom is food, shelter and clothing. Everything else is a privilege and not a right. If I remember correctly, he plays video games? Well I can assure you that there would have been no video game playing in my mom's house if I didn't do my treatments. If she caught me sneaking them in at night, she would have cut the power cord. 


In fact, I've told a story many times that has to do with just that - treatments and video games. I was feeling brave one day and I refused to do my treatments. I was "too busy" playing video games with my friends. My mom had just the solution. She walked to the kitchen drawer, pulled out a pair of scissors, came into my room, picked up the power cord to my gaming system, and proceeded to cut the cord (or so I thought). Obviously it got my attention and I believed 100% that she was going to do it. From then on, I remember much fewer fights over treatments :)

As a parent, you have to be willing to endure short-term pain, for long-term reward. He'll say all sorts of nasty things to you now that you're trying to put your foot down, but I assure you, deep down, he's knows it's out of love. In the long run, it's much more mean to your child NOT to demand treatments. You need to be the voice of reason - through force or love or both - when we're being unreasonable. Refusing to do something that will in fact improve and extend our lives is totally unreasonable.

My mom let go when I moved out of the house as I was no longer her responsibility. Did she still love me? Of course! But at some point she had to let this little bird fly free and make my own stupid decisions. There was no time more perfect than when I moved out and became "a man". Other parents may feel the time is sooner however and each family needs to decide what works for them and their family.



I can tell you this though, and I mean it from the bottom of my heart - Parents of CFers have ONE job as it relates to CF; You must make us do our treatments come hell or high water.

3 Major Needs in the CF Community

**Workout challenge - 30 minute walk
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I was asked this question the other day and I thought it would be appropriate to share my answer over here as well...


What are 3 major needs as a whole you see within the CF community?

Exposure to the good stories. We're constantly assaulted by so many stories about death, sadness, transplants at an early age, etc that I think it's time someone focuses on only exposing the positive things that those is our community are doing every day. 


To me, there's a big difference between being "real" and being "realistic". Yes, everything that happens in someone else's life in the community is in fact real, but is it realistic for you? Well that depends on the person. A lot of stories we here about others make it seem as if they had no control and CF was going to do whatever it wanted. Again, may have been the case for them, but I assure you that has never been the case for me and many, many others in this community. Many of us have more control over this thing than even we give ourselves credit for. Each and everyone of us can make the choice to make daily decisions to put ourselves in the best position to succeed. Generally, those of us who do well with that strategy have MANY more good days than bad. We're athletes, doctors, lawyers, stay-at-home moms, dads, husbands, college students and teachers.


There are PLENTY of good things out there in this community that never get talked about - I'm doing my best to change that. 

Insurance. Insurance or matters of insurance continue to be a big need in any medical community that needs it. Some of the issues are because of the system, some are because of a lack of education and some are simply others putting their own agenda ahead of the need for insurance.


I'll be the first to say that I've been blessed to have great insurance my entire life. But, it must also be pointed out that my mom didn't run out and get the job that she enjoyed the most when I was diagnosed with CF, she ran out and got the job with the best insurance. Is it "fair" that she would have to place insurance needs before career goals? No, but that's the way it was, so she played the hand she was dealt.


Before Mandi and I got married, she applied to every job under the sun that had good insurance. Sure, there were plenty of jobs she would have rather done, but those jobs wouldn't have come with the benefits that we needed. 


This CF life is all about choices. Unfortunately, there are times when what we want to do for ourselves, isn't what's best for what we need to do for our families.

Parenting skills. It saddens me to see some of the decisions that these parents make with their children. Successful parenting often results in a successful CF life, but unfortunately, the inverse of that is also true. Now, there are certainly exceptions to that rule, but as I said above, it's all about being in the best position to succeed. Sadly, I've seen plenty of parents in this community hold their children back way more than CF ever would.


We're often a direct reflection of our parents. The way they walk, the way they talk, the way they act, and yes, even the way they think. If you as a parent are embarrassed of this disease and think it should be a secret only for a select few, than most likely your child will see it as a scarlet letter as well. Can you imagine that? Walking around with this big secret as a kid that isn't going away anytime soon. That would be terrible. Yet, I still see it happening to this day. 


Parents yell at their children for not doing treatments as they sit on the couch drinking a beer. They tell their kids to stop complain, yet piss and moan about their day at work. Be what you want to see. Model the good behavior that you hope to get from your kids. Think health and taking care of yourself is important for your kids? Then make sure that's it's just as important for you as well!! Want your kid to embrace this disease and do what they have to do to succeed? Then smile everyday and make it clear to them that you'll be there every step of the way, and make any sacrifice that you need to in order for them to kick some CF booty!


It must be noted that having good parenting skills is not exclusive to the CF community, however, the stakes may be a little bit higher.



So what do you think? Agree or disagree? What would you add to the list?

3 Pieces of Advice

What are the three best pieces of advice you would give to a parent of a child with CF?

Only 3 huh? my 1st piece of advice would be to make every decision based on what's best for your child, not what's best for your CF child. Often times, I see parents parent their CF child differently than they do their non-CF children. Very rarely should the parenting be any different for a child with CF as compared to a child without CF. I also think it's important to model the behavior you want to see from your child. If you don't want them to be a victim of this CF life then don't be a victim yourself. If you want them to live a healthy lifestyle then maybe you should think about getting into exercise and showing them how important it is to be the healthiest version of yourself each and every day. And finally, don't ever let your child interchange the phrases “I'm not able to” and “I'm not willing to”. We're able to do almost anything that we make a priority, just often times were not willing to make the “not fun” stuff a priority in our lives.

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?

Best Feeling Ever...

"What is?" You're probably thinking after reading the title. But unfortunately you will have to bare with me a bit before I get to that...

As some of you may have read in a few posts recently, my parents are in town (WAHOO). We picked them up from the airport on Friday afternoon, and spent the weekend with them, and Josh and Chrissy (bro and sis-in-law) up at my parent's house. It sure is great having them in town! Friday late afternoon we hung out in their pool and then grilled steaks for dinner. Saturday, Ronnie, my parents, and I hiked a mountain near their house (you've maybe seen pictures from the top of it...it's where Ronnie proposed to me!), then we all went to hang out at Starbucks for a bit (my parent's favorite weekend morning tradition - they love the people watching!). After Starbucks we headed back home and spent the day in the pool, watching TV, eating far too much junk food and brought some Thai food in for dinner. Saturday was one of those days were you're actually tired at the end of it, but from doing nothing at all. It was awesome. We always have fun floating and playing in the pool together - making up pointless games to occupy our time, reading magazines, catching up on life, and busting each other's chops. Sunday was much of the same. We went to breakfast and church in the morning, came home, and hung out in the pool some more, watched a movie, and brought pizza in for dinner.

It is so fabulous having them in town. I am just happy to know that the fun does not stop this weekend...they'll be here for another couple of weeks! YIPPEEEE!! But the weekend did have to come to an end, and Ronnie and I headed back down to our house Sunday night, to get a good night's sleep in our own bed and start Monday morning bright-eyed and bushy-tailed for work. Unfortunately, we aren't taking the week off, even though they're here, so we had to get back to our house so we could maintain somewhat of a routine. So anywhoo, as I was saying, Sunday night we headed to our house, and before unloading the car, came inside to check out the painting. "Huh?" You're probably thinking. You read that right, while we were gone for the weekend "vacationing", painters were here painting!! BEST.FEELING.EVER!!! I can't tell you how amazing it felt to come home to chores done, that I didn't do! I do feel a little guilty that we had painters come and paid them to do a job that we could have done. But painting makes Ronnie's lungs tight, and I figured I probably shouldn't be painting several rooms (we're playing musical rooms to get the nursery in the room we want it) while pregnant. So we had painters come and paint those two rooms, and while they were at it, paint the 2 bathrooms associated with those rooms AND paint the laundry room. So while I still feel a little guilty, seeing an almost fully painted house after a weekend of NOT painting is super exciting!

So there you have it...the best feeling ever revealed :)

Can CF Teens and Parents Find Common Ground??

A good friend of the CF community and puppet master Josh Mogren, brought up a great "debate" question over on CysticLife.org that I wanted to get the RSR reader's take on:

I have spoken with a few teenagers who claim that their parents are too overwhelming of a presence in their lives. While this is common place among most teenagers across the globe, what happens when you add Cystic Fibrosis to the equation? Teens feel trapped by their parents because they don't feel like they are allowed to make their own choices about their lives and learn from their mistakes. Most parents I have talked to say the reason that they are so concerned for their children is because they don't see their children doing the best they can with their healthcare and daily routines that would improve their lives. Some have seen other people's children pass away from CF and fear the possibility that this might happen to their child. So they refocus their energy toward making sure their child thrives. The parents feel (rightfully so in some respects) that they have given their blood, sweat, and tears to their children and that CF lives are too precious to learn from mistakes because the results are far too costly. CFer's and Parents....let's honestly discuss...where can we meet in the middle? How can teens understand their parents point of view and earn their trust? How can parents learn to start letting go and trusting their children? Positivity and respectful responses are a must! This is thin ice territory, but it must be traveled on...

Parents, what do you think? What is your responsibility to your child and at want point does that responsibility shift? Teens, when can you begin to shoulder some of the burden for your "cystic life"? What's the best way for your parents to handle this transition?

If you'd like to view the answers over on CysticLife please click here.

Caution: Harmful Fumes Ahead (for CFers)

On Thursday evening, I decided to paint my nails. I'm not much of a girly-girl, so I rarely partake in this form of pampering, but for whatever reason, I decided Thursday night was the night. Ronnie and I were watching TV, I jumped up, grabbed the the nail polish bottle, plopped back down next to Ronnie and began painting. Two nails in, Ronnie moved to the other chair. I didn't think much of it. After finishing my manicure and waving my hands in the air (who knows if that actually dries your nails faster), I moved to get closer to Ronnie in his newly selected location. As I started to get close, Ronnie lovingly said, "just so you know a little something about me," he paused, "nail polish really irritates my lungs. "IT DOES?" I replied, feeling a little bad for not knowing. How would I have known? I never paint my nails. It doesn't bother my lungs. I just didn't think about it. But after he mentioned it, it seemed like a no-brainer.

I decided to compile a list of things I know of that irritate Ronnie's lungs, in case you have little ones that can't/won't speak up:

-Smoke - this seems like an obvious one. And sure, if someone is blowing cigarette smoke in my face, I notice, but there have been many occasions where Ronnie will say, "someone's smoking, let's move" and I haven't even smelled it. This goes for other kinds of smoke also. Smoke from cigars, pipes, bon fires, burning meals, etc. After a night with a lot of smoke around, Ronnie will often cough up blood.

-Car fumes - When we're running or walking on the sidewalk of a busier street, Ronnie often complains of how the car fumes make his lungs feel and it often irritates his lungs making him cough more.

-Air fresheners and scented candles - Bathroom aerosol sprays, plug-ins, regular old candles, these often make Ronnie's lungs feel irritated and "itchy" in his words. If you're looking to "freshen" the air a little try potpourri.

-Perfume - If someone has too much perfume on (not just when spraying it) it really tightens up Ronnie's lungs. I'm not sure there's any way around this other than cutting back on the perfume usage. I do wear perfume and Ronnie has yet to complain, but when I wear it, I go light.

These are the only offenders that I know of. I didn't realize how much more sensitive CFers' lungs were. I hope this list helps.

If you have any others, please leave them here.

P.S. If you haven't made it over to www.NatureMade.com yet to see Ronnie's story, check it out. I'm super proud of him :)

Do I Ever Get Sick of CF?

Instead of a video update tonight, I wanted to share this exchange between myself and a parent of a little CFer that I met on Twitter. If you're interested in following my Twitter account you can find me @RunSickboyRun.

Question from Twitter: i have a question, do you ever get sick & tired of having CF & having to do all the treatments?

My Response:
So do I ever get sick of having CF or doing my treatments? Yes and No. Let me explain, I have never nor will ever get sick of HAVING CF. See, I know no different. Since I don't know how the alternative feels, I don't know what I would "want" if it not for CF. To feel normal you may say; to which I would respond, what is normal? See I may have CF, but CF doesn't have me. Plus, who knows the type of person I would be with out. I could be a better person, but then again, I could also be worse. CF has shaped how I look at the world, my life, and my loved ones. I value the time I have on this earth and I don't take anything for granted. I'm actually thankful for CF and what it has done for my life. I know it sounds strange to some, but I constantly say that I am "blessed with CF". Do I have my struggles? Sure, but every one does. I have to learn how to deal with those struggles and navigate my life just like every one else. I love who I am (sounds a little cocky when I say it :)) and I know CF at least plays a minor if not major role in that.

As far as treatments go, of course it can be frustrating. But as with all things in my life, I try to spin it into a positive light. Since I know I have to be sitting many times during the day to do my treatments, I started doing more and more things online in order to compliment my treatment time. I'm a very active person and love to exercise and travel and I know without being healthy I can't do either of those things. So for me it just comes down to a "necessary evil" in my life. If I want to continue to live the lifestyle I'm accustom to, then I'll need to stay faithful with my treatments. It's as simple as that. If you want good teeth, you better brush and floss. If you want good lungs, you better do your treatments. I see it no different than that. I'm willing to make the small sacrifices (time to do treatments) in order that the rest of my day/life is enjoyable. I know too many CFers who sit around there house and complain about how terrible they feel and how much CF sucks. And I say, while you're sitting around feeling sorry for yourself, stick a neb in your mouth and put your vest on. It's all about putting yourself in the best position to succeed. The CFF has put a lot of money into giving us resources to aide us in navigating our lives and putting us into the best position to succeed. Why wouldn't we take FULL advantage of that?

Yes, I am currently in the hospital and will probably be here for a couple of weeks. The hospital is another one of those things that I know I need to do in order to put myself in the best position to live a full, happy and healthy life. If I have to be in here 65 days a year in order to have a rocking 300 days the rest of the year, then I'll take that deal every time. Every year of my life I've had WAY more good days than bad, so why would I have any reason to complain?

I hope that answered your questions and I thank you so much for seeking my opinion. Please don't ever hesitate to email me other questions and thoughts. You may also enjoy some of my older posts on the blog, here are the links: http: //runsickboyrun.blogspot.com/2009/04/cystic-fibrosis-doesnt-define-me.html, http: //runsickboyrun.blogspot.com/2009/04/mothers-manual-to-cystic-fibrosis.html, http://runsickboyrun.blogspot.com/2009/06/attitude-and-perception.html

Do Life,

Ronnie

So what about you? Do you ever just get sick and tired of being "sick and tired"?

And what about your treatments, ever feel like giving them up and just dealing

with the consequences?

Back in the Saddle

7:30am: I know what you're thinking, "he sure does sleep in a lot lately". No, you weren't thinking that? You didn't notice? Oh, sorry for bringing that up then. I have in fact had quite a few mornings of "extra" sleep, but that's only because I've had quite a few nights that I have gone to bed later than normal. I generally try to get between 6 and 8 hours with 7 usually being the number that happens. I woke up with a lot of energy this morning and felt well rested. Jezzabel was chomping at the bit (anybody know where that phrase originated?) ready for her walk.

It was actually an overcast morning which is very rare for this time of the year. It felt great outside and was probably in the lower 80's. I felt kind of tight when I first started the walk and my mucus was kind of difficult to get up. After about .5 miles I started coughing really deep and forced myself to keep it up to try and get the stuff moving. It worked for the most part and I was able to get a lot of thick clear stuff up. Some of it had a slight yellow to it, but it was clear for the most part. My feet felt pretty good as well, with my left foot getting a little sore while making my way up an uphill section of the loop. I'm going to do cardio later at the gym, so I'm hoping it holds up for that.

Total Distance: 2.3 miles

2:30pm: Gym time! I've been working since I got back from the walk, so this gym time was a much needed break. Mandi and I headed out to lift shoulders and legs plus do a little cardio. It's been a while since we did cardio so we decided to do it first to make sure there were no excuses to miss it. We hopped on the elliptical and off we went. I had my iPod in and was reading through an US Weekly from March of 2008. I'll tell you one thing, it makes that half hour just fly by. Believe me, I'm not a fan of cardio because I usually would get so bored, but if I have a magazine I barely even take time to notice what I am doing. We ended up doing 30 minutes on the elliptical and by the time we were done my grey t-shirt looked black from the sweat soaking through. (Wanna feel good about what you're doing? Wear a grey t-shirt to the gym!) My lungs felt really open and my legs felt great!

It was then on to lift legs and shoulders. We did what we usually do with us alternating between the two muscle groups each set so that we never stop. That way you get another cardio type workout in. Also, the sweat never stops and you feel like you're getting an incredible workout. Today's gym session was constant movement for over an hour! Try it, I promise you'll like it...well, at least your lungs will!

Total Distance: 2.65 miles

Side Note: Mandi and I are heading out to dinner with the parents of a little CF boy to meet them and talk life with CF. They are also interested in helping with a project Mandi and I have going on that will have a positive impact on the CF community. I LOVE talking to cystics parents and hopefully giving them encouragement about the road ahead. My mom did a GREAT job in raising me and I just pass some of her knowledge onto other parents. If you haven't had the chance to read the posts I've done about my mom and her attitude towards CF, I encourage you to use the category posts to find those blogs and read them. Look under Mom and Pillar Articles.

Total Distance for Day: 4.95 miles