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.

Be a Model Today!

Reading Mandi's blog yesterday got me thinking about the different things that I'm loving about Mckenna right now. I could of course go on and on and devote an entire blog, not just a single post, to this, but I thought I'd try a unique breakdown to highlight what I'm digging. I'll give you a big macro thing I love about her, a micro thing and something that probably gets overlooked and I may take for granted, but I absolutely love.

Big picture:
I'm often asked about one big thing I love about parenting and my answer has been the same for over a year or so now. I absolutely love to watch Mckenna's personality and character develop. Each day that passes, not only do I see her as my daughter, but I see her more and more as a unique and individually gifted and talented little human. Her likes and dislikes. Her quirks and mannerisms. Her little problem solving brain. The more I see, the more I like. I feel so blessed to be given the opportunity to play a role in her little life. To think that I'm able to have some influence on the person she will become is not only an honor, but it is of course humbling.

She cheeses so hard.

It can quickly become an exercise on self-improvement.

Why should she say "please" and "thank you" all the time but Daddy does not? Do I need to develop better manners? If I run out of patience waiting in a check out line, should I be all that surprised when she starts acting like a crazy woman in the store? If I'm not willing to try new things, or work hard to figure out a solution to my problem, how is she going to learn how important that is in life?

I feel a huge sense of responsibility to show Mckenna what a good person looks like, and with that in the back of my mind, it has no doubt made me a better person.

Small Picture:

I love her jokes. Don't get me wrong, her jokes aren't funny, but she laughs and so do I. And, she doesn't just blabber on trying to make me laugh, she really thinks about two things she can put together that don't fit, or a scenario that seems outrageous, and delivers it in a joke format to make me laugh. I've always thought it was important to put a smile on people's faces through humor, and a great personality trait, so I'm thankful that she's taken a liking to it. Take my word for it, I didn't land her Mommy because I'm good looking.

Something I probably overlook:
I love how kind-hearted Mckenna is. She has a genuine care for others and always seems distressed when others are in pain or crying. She's quick to say "I'm sorry" and is always interested in how she can make others feel better. Mandi is the same way and does a great job of modeling a caring heart. It's also definitely something I need to work on. I'm not mean-spirited by any means, but I don't have a "it's my job to make sure everyone is okay and happy" mentality. As a child, I think it's important to lean towards that end of the spectrum as opposed to the "it's all about me" syndrome. I'm very fortunate to have a partner that is strong where I am weak. I can only pray that I model good character traits as well as my wife does!

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!!

Why are American kids so spoiled??

I read a fantastic article the other day that I just had to share. I think that much of it can help parents out there of cysters and fibros, as well as kids in general. I won't share the entire article here, but I encourage you to click on the link provided and check it out. Come back here and tell me what you think!!

In 2004, Carolina Izquierdo, an anthropologist at the University of California, Los Angeles, spent several months with the Matsigenka, a tribe of about twelve thousand people who live in the Peruvian Amazon. The Matsigenka hunt for monkeys and parrots, grow yucca and bananas, and build houses that they roof with the leaves of a particular kind of palm tree, known as a kapashi. At one point, Izquierdo decided to accompany a local family on a leaf-gathering expedition down the Urubamba River. 

A member of another family, Yanira, asked if she could come along. Izquierdo and the others spent five days on the river. Although Yanira had no clear role in the group, she quickly found ways to make herself useful. Twice a day, she swept the sand off the sleeping mats, and she helped stack the kapashi leaves for transport back to the village. 

In the evening, she fished for crustaceans, which she cleaned, boiled, and served to the others. Calm and self-possessed, Yanira “asked for nothing,” Izquierdo later recalled. The girl’s behavior made a strong impression on the anthropologist because at the time of the trip Yanira was just six years old. 

While Izquierdo was doing field work among the Matsigenka, she was also involved in an anthropological study closer to home. A colleague of hers, Elinor Ochs, had recruited thirty-two middle-class families for a study of life in twenty-first-century Los Angeles. Ochs had arranged to have the families filmed as they ate, fought, made up, and did the dishes. 

Izquierdo and Ochs shared an interest in many ethnographic issues, including child rearing. How did parents in different cultures train young people to assume adult responsibilities? In the case of the Angelenos, they mostly didn’t. In the L.A. families observed, no child routinely performed household chores without being instructed to. Often, the kids had to be begged to attempt the simplest tasks; often, they still refused. 

In one fairly typical encounter, a father asked his eight-year-old son five times to please go take a bath or a shower. After the fifth plea went unheeded, the father picked the boy up and carried him into the bathroom. A few minutes later, the kid, still unwashed, wandered into another room to play a video game. 

In another representative encounter, an eight-year-old girl sat down at the dining table. Finding that no silverware had been laid out for her, she demanded, “How am I supposed to eat?” Although the girl clearly knew where the silverware was kept, her father got up to get it for her. 

In a third episode captured on tape, a boy named Ben was supposed to leave the house with his parents. But he couldn’t get his feet into his sneakers, because the laces were tied. He handed one of the shoes to his father: “Untie it!” His father suggested that he ask nicely. 

“Can you untie it?” Ben replied. After more back-and-forth, his father untied Ben’s sneakers. Ben put them on, then asked his father to retie them. “You tie your shoes and let’s go,’’ his father finally exploded. Ben was unfazed. “I’m just asking,’’ he said. 

A few years ago, Izquierdo and Ochs wrote an article for Ethos, the journal of the Society of Psychological Anthropology, in which they described Yanira’s conduct during the trip down the river and Ben’s exchange with his dad. “Juxtaposition of these developmental stories begs for an account of responsibility in childhood,” they wrote. 

Why do Matsigenka children “help their families at home more than L.A. children?” And “Why do L.A. adult family members help their children at home more than do Matsigenka?” Though not phrased in exactly such terms, questions like these are being asked—silently, imploringly, despairingly—every single day by parents from Anchorage to Miami. Why, why, why?

Read more http://www.newyorker.com/arts/critics/books/2012/07/02/120702crbo_books_kolbert#ixzz20HL8u4Wk

So what do you guys think, does this researcher have a point? Have you seen this in your own upbringing or the upbringing of others?

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.

Toddlers and Treatments

I recently received a great (and very common) question from a momma in the CF community. I thought that many of you could relate to her question and I hope that some of you get something from my answer :)

I was curious to know when u were a child how did you feel about doing treatments?**** understands she does them to stay healthy but every now and again she will get upset while doing them and say things like "I wanna b like everyone else!" "none of my friends have to do this!"She is only 5, I know it's going to be hard to relate all this to her but I wondered how your parents helped u to understand. And if understanding even helped with the anger. And how to help with the anger they feel surrounding cf.Thank u for always answering these questions you are such a valuable resource to us parents!

That's a tough age and a common problem...

First piece of advice, always, like 100% of the time, follow through with the "law" you lay down. Even at a young age, if my mom said it was going to happen, it happened. She made it very clear that first came treatments, and then came whatever I wanted to do. She never backed down - not even once. I knew that if I fought treatments, my life would suck, and she would make sure of it 

My mom also made it clear that no one is "normal" - what is that anyway??  She said that some people have braces, some brown hair, some are tall, some are short, some are fast, some have glasses and some have cystic fibrosis. She also encouraged me to be very open about it as it's not something to be ashamed of or to hide from anyone.

Also, have you ever connected with Lisa Greene and read through any of her stuff. My mom, unknowingly, used many of the techniques that Lisa (mom with 2 kids with CF) teaches in her courses as well as writes about in her book. CysticLife also co-authored many of our materials with her that I would highly recommend that you read: http://www.cysticlife.org/cystic-fibrosis-reading-materials.php

Finally, there are many parents who make treatment time a great family bonding experience. They may only watch TV together during treatments, or play games, or braid each others hair, etc. In fact, I find myself doing that as an adult - only allowing myself to go on websites that I like IF I'm doing my treatment!

Hope I answered your question. Just remember - it's easier to start now and feel some short-term pain and angst then start later. Teach good habits before bad ones are developed.

Shoot, last thing - I promise that she'll thank you for it in the future. I've never heard a fellow "older" CFer say "I wish my parents didn't make me do so many treatments". I have however heard many CFers say "I WISH my parents would have made me do treatments". She may hate you for it now, but she'll love you for it later.

Ten Temptations Dads Face

Thought this blog was spot-on in so many ways....

Most effective fathers I work with face the following temptations:

1) The pull to spend more time at work and leave the "leftovers" for the family. I have never heard an older man reflecting back on his life say, "I only wish I had spent more time at the office."

2) Thinking, "I'll spend more time with the kids once they are older." That time never arrives. In fact, once our children hit the teen years they often desire to spend less time with dad.

3) Assuming "quality time" trumps "quantity time." Think the once-a-year family vacation should be enough? Its not. Its the little day-in, day-out interactions that leave such a lasting legacy.

4) Reasoning, "we might as well divorce since we fight so often." The family research statistics are clear; an in-tact, lasting marriage is better for children than divorce. Go to marriage counseling and try and avoid divorce.

5) Thinking, "the beautiful woman down the street could meet my needs better than my wife." All humans are fallen. Only Jesus Christ can meet our deepest needs.

6) "I'll leave the church stuff to my wife or the youth pastor." When your children see you worship or pray they understand you too are under authority.

7) Naively thinking, "there are no drug or alcohol problems in our school or neighborhood." Think again...and talk to your kids about the dangers of experimenting.

8) Rationalizing, "I've blown it as a father." You may have made mistakes. Serious mistakes. But its never too late to reach out to a son or daughter.

9) Assuming, "someone will have the "sex talk" with my kids." They are curious and they are waiting to hear your perspective.

10) The temptation to take my wife for granted. She is taxi-driver, worker, chef, home engineer, mother, lover, and wife of your youth. Honor her.

http://blogs.christianpost.com/dynamic-dads/ten-temptations-dads-face-9797/

3 Major Needs in the CF Community

**Workout challenge - 30 minute walk
_______________


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?

2 Weeks Down: Trick-or-treat?

In keeping with the Halloween spirit I thought I would reflect on some of the tricks and treats that occurred during the past 2 weeks. Wow, first just let me say that I can't believe it's only been 2 weeks! If I woke up tomorrow and someone told me that it had been 2 months I would completely believe them.

With this being our first child, there are some things that I expected and some things that I didn't expect. We both have been around younger children, whether it be family members or neighbors, but it is quite a different experience when you're the one solely responsible for this little life. Just like any first-time parents, or any parents for that matter, we have had our share of both tricks and treats. Without further ado:

Tricks:

I knew that babies pooped and peed a lot, but I never imagined that it would be this much! It is true what they say, newborns are doing one of 3 things - eating, sleeping or pooping. Our little one has eating and sleeping down pretty well but she's still working on that messy little thing called pooping. Don't get me wrong, she poops enough for 56 babies, but her timing could use some help. Is it just Mckenna that insists on going to the bathroom while we're currently changing her diaper? It seems no matter how patient we are, she just waits for us to clean her up and put the new diaper down on the mat before she decides to finish going to the bathroom. Not only that, but this girl has a cannon on her!

Am I the only father out there that's jealous of breast-feeding? No, it's not that I want to breast-feed, but it's that I am just a tad bit jealous of that special time that Mandi and Mckenna get to spend together. It's funny, when I say it I think is sounds stupid, but I'm just being honest here. I managed to call bath time to try to make up for it a bit, but it just isn't the same. Never did I think that I would be jealous of not having boobs.

My back hurts. I think it's a combination of many things i.e. the gym, spin class, etc. but I would not doubt for a second that carrying around this almost 7 pound bowling ball has something to do with it! We then of course have to add in her car seat and the awkward angle that I take each and every time I put her securely in the base station. It's actually gotten to the point that Mandi scheduled a massage for me, but I don't think it helped very much. Pretty sure I need to focus more on stretching as this little baby girl will only get heavier.

Treats:

All of you parents will understand this first treat - a love that's never been felt before. Now, please don't take this the wrong way, as I felt a more intense love the day I fell in love with and consequently married my wife, but this is in fact different. It's a combination of feeling an overwhelming need to protect, provide for and lead someone who would be completely incapable of doing it on their own. Mandi doesn't need me, she wants me. Mckenna on the other hand, needs her daddy. So whatever you call it, or however you want to define it, it's been amazing feeling this kind of love.

Mandi would tell you that I'm a big-time snuggler through in through. I've been able to take my love of snuggling to another level. If Mandi and I sat around snuggling all day we wouldn't get anything done (although that would be awesome). What's great about Mckenna, is I can snuggle her with one hand and I'm free to get work done with the other. Mandi and I have also worked out a routine to maximize Mandi's sleep that involves me taking over the parental duties early in the morning. I admit however that the 1st hour or so of those duties includes me snuggling Mckenna in our bed. Life. Is. Good.

One thing I'm not is a shopper. However, I have the best time buying baby clothes for Mckenna. I'm not so sure that I've come home empty-handed anytime that I left the house. Obviously this cannot continue, but for the meantime, I'm having a blast! We will of course continue to post pictures so you can see all of the little outfits that we've brought home or had gifted to us. Want to know a secret? I can't wait to do her hair. (Has anybody seen my man-card by the way??)

There are more tricks and treats that have presented themselves in these first 2 weeks, but I thought I would just give you guys a little taste for your face. But now I want to hear from you!

When you think back to your 1st child, what would you say the tricks or treats were?

Question from a reader: Why Parents?

Ever so often, I like to share questions from readers and my answer to them here on the blog. This particular question I get asked quite often, so I figured I would share my answer with all of you.

You seem to direct a lot of your "messages" to parent's of CFers, is there any particular reason why?

So I guess I’ll first talk a bit about why I’m so passionate about CF parents. I truly believe that everything starts with the parents and the sooner we can deliver a message of hope, proactivity and confidence as well as messages like "treat your CF child like you would any other non-CF child" the sooner we can start to shape that child's experience of CF. The sooner we can get parents to buy into that I think, ultimately, the healthier our community will be and that’s what we all want.

I’ve been fortunate in that I've been able to meet so many parents and CFers within the CF community. It is my experience that 99/100 times the child’s attitude toward cystic fibrosis is a 100% true reflection of the parents attitude toward cystic fibrosis. What I mean by that is I have met parents who are very bitter, angry and play the role of the victim very well and wouldn't you know it, I then meet their son or daughter and they are the exact same way. I can tell you as a patient that when you fall into the trap of being a victim or being bitter and angry, unless you are able to harness that into a positive reaction (which most people simply can’t do), it’s very hard to have the energy to really live your life. A pessimistic attitude and a victim's mentality will more likely than not affect your health in a negative way. This isn't just my opinion either, research is constantly coming out that supports this "theory".

Let me give you a real example of this. I was reading through a study a couple of days ago that showed those in the CF community who felt like they were in control of their disease were more likely to exercise. We can debate what came first, the chicken or the egg all day, but I know that this has a direct correlation in my life. One reason I exercise the way that I do is because I truly believe that it has a positive effect on my health and my lung function. When I exercise and do my treatments regularly I feel better and my lung function remains steady (I'll take anything but down!) or goes up. Conversely, when I slack on exercise or treatments, I feel worse and my lung function goes down. Can you see how this can make me feel like I have some control over this disease? Of course my question would be, is it just a feeling or am I actually exhibiting some control? In other words, am I just getting lucky? Like my "good friend" Larry Bird said, "Seems like the harder I work, the luckier I get".

You can call it ignorance or you can call me naive, but I would like to think that the proof is in the pudding. I’ve been sick at times, I’ve been really sick at times, but I never believed that I had lost control and I always believed that I could "get it back". When my doctors would say "this is probably your new baseline" it only motivated me to take a step back, assess what I could be doing better and then work harder going forward.

I really think that if we can get parents to buy into this way of thinking early on and ingrain this attitude, from a very early age into their children, some very positive things can happen. We do have some control over this. Things aren’t always going to go our way, but we have to make sure we wake up every single day and do everything we can to stay one step ahead of this disease. I can say without a shadow of a doubt that CF never takes a day off and so either can I.

I have such a heart for CF parents not only because of that initial shock of getting this diagnosis, but because of the first thing they do, Google it. I really want to change the message that they first find. When a parent newly diagnosed family Googles CF I don’t want them going to sites that are doom and gloom and depressing. I want them going to sites like Run, Sickboy, Run or CysticLife.org and be able to comb through those sites and say "hey there’s hope and we can do something about this". From that point on I would expect them to realize that there are great meds out there and great plans of action, which, if implemented and stuck with, can provide great results and excellent health.

So why do I really like to deliver my message to CF parents? Well, it's because I have a big heart for CF parents and I love the CF community and want all of us to be as healthy as possible, and whether the parents like it or not, it starts with them. No pressure :)

How to Raise a Child with CF

The following issue is a very common one amongst the CF community. I just wanted to post the question and my response to see what you guys think. What would you have said?

Post:

Let me start by asking that no one give me the pat answer of "treat your CF kid the same as the non-CF kids" I know that in an ideal world we could pretend the CF doesn't exist and place the child rearing ahead of the CF, but the reality is that my first priority for my daughter is making sure she gets all of her CF treatments.

I'm really running into a problem with my three year old and discipline. Yeah, some of it is the age, but some of it is due to the fact that she is pretty spoiled in several areas. There are lots of things that I don't say "no" about for her. Its not about purposefully spoiling her -- but rather about fighting the important battles first. Alyssa HATES to do her vest and its a huge production every night. The only thing that works to keep her quiet and not ripping the tubes out or shutting off the machine is to let her pick the tv show we are watching. This means that at treatment time, whatever her brothers are watching turns off for the sake of keeping her treatment complete.

Another example is food. Alyssa has to eat like a CF kiddo, and that means that I allow her to have a wider choice of foods. If she doesn't like what I've made I try to accommodate her, if she doesn't eat dinner, she can still have ice cream afterwards. Different rules apply to her and the boys know it and deal with it.

But the problem is that she is beginning to see that different rules apply to her and they are spilling into all the other areas of life. She instigates issues with her brothers (they walk by, she pushes them or she purposefully pulls a toy out of their hand, or she throws a fit when the tv show is not "hers"). All of these not CF things get handled promptly by me. She gets a warning (unless she hits) and then a time out, but it doesn't change her behavior at all. Some days she'll get 10 different time outs (in her room). I talk to her all the time about good behavior and give lots of positive reinforcement for when she does share. But you can't exactly sing the praises of a kid who didn't hit their brother this time.

I'm going nuts here. And I know that a lot of this is because of the CF and how it changes the rules, but I just don't know what to do about it. I'd love some insight from those who have been there.

My response:
I have no CF children. I however have CF and think that my mom did quite possibly the best job ever. So of course with my advice, you can take it or leave it...

I would never ever ever say "because of CF". If you think you have problems now, wait until she's interacting in the real world where nobody gives you special privileges "because of CF". My mom treated me no different than my brothers. CF wasn't a central focus in my house. Yeah, I was a sick kid at times and had to go in the hospital and do my treatments 3 times a day, ok, so what? I was still a kid. I still got disciplined the way my brothers got disciplined (except a lot more cause I was a brat).

She's not eating the ice cream "because she has CF". She's eating it because she's 3 and likes ice cream. Don't finish your plate, no ice cream. If you're concerned about your daughter getting enough calories, there are powders you can put in milk that will add nutrition and calories. High fat and high sugar foods aren't the only way to pack on the calories. You can do it many other ways without her even knowing.

How do you handle your other kids when they disobey? Do the same thing for her. We are who we are; CF doesn't make us who we are. If she's this way with CF, she'd be this way without.
Schedule treatment time for the same time every night, that way, the boys can pick the show before it, and then when it's treatment time it's her turn. Simply allowing her more options and priority "because of CF" is going to create a monster.

I also agree that taking away something important to a child is usually the best option for discipline. At least, I know that's what worked for me, and I was a crazy kid.

Bottom line: I would treat a CFer no differently than his/her brothers or sisters. Life isn't going to be fair her whole life and that's not changing. Life isn't fair for all non-CFers as well. A lot of it is her age, but I really think you need to nip it in the bud before her whole mentality is shaped into "I have CF, therefore, my way or the highway".

With all of that said...I have no kids and I talk a big game now, but who knows how I'll respond until I'm in the situation. Just know that I get that and I'm just trying to help.

Ronnie

Was I too harsh? What would your advice be?

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.

Cystic Fibrosis, Children and School - A Smooth Ride?

I wanted to post this little tid bit about children with Cystic Fibrosis and school. I get a lot of questions by CF parents about their kids attending school and my experiences while growing up. The questions range from "how did you tell the teachers" to "should I even put my child in public school" to ""did you hide your enzymes from the other kids". I of course will answer these questions on the blog at some point in the future (if I haven't already), but if you want my feelings on these subjects immediately, you can of course contact me anytime.

Please read through the small set of questions and answers and if time permits, answer some of the questions that I have listed below. We had a great discussion last week and I hope to keep the good times rollin'!

I’m worried that my child may be treated differently if the school knows he has CF.

This is a concern parents of newly diagnosed children often express. However, this is not a common complaint of parents of CF kids. For the most part, children with CF attend school just like every other child. Students with CF are entitled to modifications in school as any other child with a chronic illness would be.

Can my child carry his enzymes with him at school?
It depends. Each state has its own rules about medications in public schools. If your child goes to a private school, there’s a good chance school administrators make decisions on a case-by-case basis. In public schools, enzymes are considered medications and need to be kept in the nurse’s office. However, if your child has a 504 plan or a medical IEP*, you can request that your child be able to carry his own enzymes as a modification. The 504 plan and medical IEP fall under federal law and supersede state laws.

* IEP stands for Individualized Education Plan

My child doesn’t have enough time to eat lunch.
Request that your child be permitted to leave a couple minutes early from his last period before lunch so he can pick up his enzymes from the nurse’s office and still have enough time to eat. This request can also be made for children on a 504 plan or medical IEP.

What do I do if another student provides misinformation about CF to my child?
Use this as an opportunity to educate the class about CF. You as a parent can do the presentation yourself, or with your child. Perhaps your child would rather do it alone. But you may not want your child to be present because children can ask questions that may be harsh for your child to hear.

This article was taken from the John Hopkins CF Center

So, as a parent, have you had any negative experiences with your child and school? How does the school handle their enzymes? Do you believe the CF children should be home-schooled as to not expose them to harmful germs that other children may carry?

I'd love to hear your thoughts on this topic and answers to the questions above. Any more information on this topic will be very beneficial to the CF community.

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?