Two Important Lessons from My Mother

To say that my mom passed down many lessons to me that carried on throughout my life could be the understatement of the year. I could probably fill an entire book with all of the wisdom that she passed down to me over the years. Little anecdotes and advice that I've drawn from constantly to either get through a certain situation or just draw strength to continue motoring throughout the day. But as I've talked more more about my life with cystic fibrosis, I began to realize two very important lessons that shaped much of my life up until this point.

These two lessons play off each other in perfect harmony. They are:

1.  Not everything bad that happens in my life is a result of having cystic fibrosis.

2.  There are many good things in my life that I may have never experienced if I weren't diagnosed with cystic fibrosis.

Let's look at the first lesson. I don't think it's an overstretch to say we live in a “blame society”. We are always looking for someone else or something else to blame for our set of problems. Whether it's blaming the dog for eating our homework (even though we left it within his reach), blaming our boss for our cruddy job (even though we enter work each day with a chip on our shoulder) or blaming lack of time for not exercising (even though we still get in our 1 to 2 hours of TV a day). It's just so much easier to blame others or some external force for the bad things or bad situations that happen in our lives. It's much tougher to look within, or look into a mirror, and at least partially blame ourselves.

Cystic fibrosis can be the perfect scapegoat. I used to think that there was no way I could ever run any sort of distance because I had cystic fibrosis (even though I had never attempted to train). There are days that I thought I must feel sick because my CF was getting the best of me (even though there was a virus going around at school). I'm sure there were days that I used cystic fibrosis for being the reason that I acted out and didn't have respect for authority (getting to the root of that issue would take years). I'm not so sure I ever verbalized these, or even consciously thought of them, but I wouldn't be surprised if they were at least subconsciously there.

Maybe my mom recognized that. Maybe that's why I vividly remember my mom saying many times, “Cystic fibrosis won't always be the reason that bad things happen. Cystic fibrosis won't always be the reason that you don't get your way. In fact, rarely will cystic fibrosis be the reason. The reason? It's called life and we all are living in the same one."

I'm so thankful that I was able to carry that on to adulthood. There's no doubt that it played an active role in me pursuing to make a positive impact on this world. If I couldn't blame CF, then I was going to use it to motivate me to do good things.

The second lesson plays off this first one perfectly. When I look back I can identify so many things that have happened in my life that would not have happened if I'd never was diagnosed with cystic fibrosis. More importantly, there are tons of people who play a present and active role in my life who I may have not met if it weren't for CF.

My mom would always be quick to remind me when I was a child of this and now as an adult, I can see it clearly. This continues to play out today. I can't count the number of contacts, acquaintances, and friends I have as a result of being a part of the CF community. Diving in and serving the CF community is what I strive to do every single day. I can't imagine myself doing anything else. Would I be doing this without the diagnosis? No way.

The biggest role CF is played in my life is that of a sculptor. I'm convinced now more than ever that cystic fibrosis molded me into the man that I am today. The man that my wife fell in love with. The man that Mckenna calls "daddy". Many out there believe they'd be a different person if they weren't battling CF. I agree, I would be different, and I don't think I would like that different version of me as much. I know that others wouldn't.

And again, to quote my mom, “You can either use CF to hold you back, or to propel you forward.”

I choose the latter. What about you?

Did God Give Me Cystic Fibrosis?

Once in a while I get questions that really get me thinking. This was such a question. I'm no theologian or Bible scholar, but I have a deep love for God and believe in His deep love for me. I also don't think He makes mistakes. Most importantly, I don't think I need to know all of the answers. I only need to know one thing...God is in control and His eternal plan is a perfect one.

Question: 

I just finished having a really deep intense discussion with my 14 year old son (with CF) about God. Little by little he has started to share with me his doubts about God. After much probing by me I realized that some of his doubts are coming from the fact that he doesn't "get" how God who is suppose to be loving gave this disease to people. I answered his questions as best I could.  

You seem to have such a strong faith now; did you ever question if there was a God and how people could have this disease? If so how did your questions get answered?Any insight is appreciated!

That's a tough one. My perspective on this may be a little different though...

Problem is, I never once thought the CF was a terrible disease. I simply was raised to believe the opposite and my mom did a great job of always pointing out the opportunities that CF afforded me (I'm not saying that you're not doing that). She was always quick to point out the man that CF was molding me into. Quick to remind me of all the people I would have never met had it not been for this disease.

As far as my faith, I don't think God gave me CF. Sure, He allowed it to happen as He could have stopped it, but He didn't. I believe that CF is more of a tool used by God to shape my heavenly body than it is to destroy my earthly one.

He also promises to work ALL things for the good of those who love Him. It never says that everything that happens is good, but we serve a God that can take 100 bad things and shape them into something that brings Him ultimate glory. And that's what this life is all about for me. God shaping me into the man that will ultimately receive the joy of worshipping Him for eternity.

I don't get caught up too much in my suffering or the suffering of those around me. This life on earth is but a blink of an eye, and in the big picture, pretty "insignificant". I'm not living for the here and now, but the later and forever.

The one time I questioned God and His works was when my 16 year old cousin died in a roll-over car accident. It was sudden. We didn't have anytime to prepare. She was young, vibrant, beautiful and had a huge heart for the Lord. I wondered how in the world God could ever use that for His glory. I questioned why He would take someone who could end up doing so much for His Kingdom here on earth. I brought these and many other questions to my pastor.

What he said solidified my view on my own life. He said that each of us have a race to run. Some run it faster than others. Because some run faster, they will finish the race first (die). We're all running towards the same finish line, and as all of the other runners, the goal is to cross the line. Whether we finish first or last is of no consequence to God, it's that we finished and finished well. He watches how we are running. Once we cross that finish line we will be in His presence and get to hear the words that we all want to hear more than anything, "Well done, good and faithful servant."

When I took the focus off the death of my cousin and the sadness it created for me, I was able to see the joy it was bringing to her and to my Savior. He wants us in His presence more than anything else. The fact that my cousin got to see His face before me may be because she ran such a darn good race!! I may also never know why she was taken from this earth so soon, but I do have faith that God is true to His word and will work ALL things for the good of those who love Him and have been called according to HIS purpose.

So, why does God allow me to have CF? I don't know. I do however know that He doesn't make mistakes. I do know that He views me as a perfect creation formed in His image. And finally, I do know that one day, all will be revealed to me and will be more clear than it could ever be here on earth.

Like I said, this is a tough one, but hopefully something I said here will help you and your son.

My Mom's Strength

I get asked often about my mom by readers of this blog. Questions like "how did she feel about you having CF?", "was she strict?", and most common, "what was her secret to being such a good (CF) mom?". Well, her response to yesterday's blog pretty much sums up everything you need to know about my mom. She sent me a very sweet email that makes it very clear where her strength came from to parent a child...especially a child with CF...born in 1980...not exactly the "heyday" for CFers.

Thanks, Ronnie, for your kind words and loving me. You made me cry. I never felt like I was the best mom (you do have your stories!), I sure made plenty of mistakes, but I did TRY to do my best. I put your health in the hands of God then as I do today. Doesn't mean that I didn't take CF seriously, that treatments and medications weren't of the utmost importance, or that I stopped praying everyday for you...but God has a plan and I accept His plan and by the grace of God...go WE. And look what a fantastic man, husband and father you've become. I am a proud Mama...and Grandma!! 

I can tell you this, the apple certainly doesn't fall far from the tree.

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.

Dear 16-year-old-me

Hey Ronnie,

So I've been thinking a lot about you lately and I wanted to write you a quick note based on some things I've learned over the past 16 years. You see, I'm 32 now and have now doubled you in age. I'm not saying that I'm twice as smart, but I'm definitely at least twice as wise and then some. I would be remiss if I didn't share some things with you as you embark on the post-16-year-old journey that you're about to start.

First, let's talk about some things that you're doing right...

I know you don't take school very seriously, but I'm proud of you for not letting your grades slip. You'll be in college soon, and as a result of those good grades, you'll be able to save your folks some money. They can't afford to be shelling out college tuition along with paying for your little brothers private education. And you may not think about it now, but at some point, you'll be able to share the GPA with your future daughter.

I love your commitment to sports. You're a competitor just like me and I see how it fuels you in life, on the field and in the classrooms. I know that you're playing sports because you love them, but I'm telling you know, it's going to pay off in ways that you can't even grasp right now. So, stick with it, give it your all, and know that the memories you're making now with teammates with last with you forever.

And finally, I know this is something that you rarely think about, but good job on your treatments. Now, it's not entirely up to you as I understand it, but know that your mom is doing what she believes is best for you, and guess what, she's right. You're building up a baseline health right now that I promise you'll be thankful for in the future. Sometimes, it's not even about your lungs or about the treatments, it's about establishing what's important in your life and what's not. You're mom realizes that treatments are important, and even if you don't at the moment, you will when you're my age.

With that in mind, let's talk about some of the mistakes I made when I was your age with the hope that you won't repeat my offenses...

Speaking of your mom, don't give her such a hard time. Don't you realize that every decision she's made for the last 16 years has been because of you?? There are things that she wishes she could have done, or extra money that I'm sure she would have wanted to spend on herself, but she didn't - it all went to you. She loves you and your brothers more than you'll ever know and the amount of sacrifice she's given to the family will never be able to be repaid. But, with that said, you can start by acting like you love her instead of just saying it.

You need to be nicer to people. I know you think that you stick up for those less fortunate and knock other people down "a few pegs" who you think deserve it, but in reality, it's not your job to knock those people down. Approach them like a man and get to know them and just maybe you'll see what makes them tick. Right now, you're just being a boy who gets the approval and laughs from your friends by being mean to others. That's not right and that's certainly not what God would want you to do.

Speaking of God, get to know Him for yourself. Right now, the only reason you know Him is because your parents make you "know" Him. Your walk with God isn't about going to church; it isn't about praying; and it isn't about telling people that you're a Christian. He wants nothing more than to develop a relationship with you that's real and personal. All of that other stuff is important, but none of it holds a candle to actually knowing the heart of your Lord and Savior. When that happens, you can't help but have it bleed over to other areas of your life. Pursue Him, He's waiting.

I know it sounds like I'm harping on you a bit, but it's only because I love you. You're a good boy right now, but I think you can be an even better man. I know that's in your heart and I look forward to watching you grow.

Oh, and one more thing, break up with your girlfriend. You're wasting your time. God's already created the perfect woman for you, but you won't meet her until you're 28. I know it sounds like a long time from now, but you're going to need 12 years to become the man of her dreams.

Sincerely,
32-year-old Ronnie

**This post was inspired by the WEGO Health Blog Challenege

Mckenna Monday: Making the Butter

Have you noticed the trend yet? Mandi Monday's come so late that they practically get posted on Tuesday! I used to write my Mandi Monday's on Sunday and have them automatically post Sunday night/Monday morning (shhh don't tell). But days just come and go and then all of a sudden it's Monday morning and I realize I've been a slacker for another week. So since I'm terrible, I'll send in my replacement...Mckenna. Sooo without further ado: Mckenna Monday:

Things are going pretty well for me. I'm getting bigger by the second. Mom says I'm a tank, but they still call me Peanut, so I'm not sure how that all fits together...maybe I'm a small tank? I had my 2-month check-up last Monday. I came in at 10 pounds 2 ounces and 22 inches long. If you're keeping track, that's exactly 4lbs and 5 inches since I was born. I'm growing like a weed! At that appointment I also got some shots. OUCHY!! I let out a huge wail once I realized what happened and that it didn't feel the greatest. Mom looked sad for me and like she was going to be sick, dad smiled with delight and kept saying "oh my goodness your face is so cute when you cry like that."

I'm pretty sure my name is Mckenna because they say it all the time (although they don't know I know because I don't respond to my own name yet). However, they call me lots of other names too. They call me Peanut a lot, which I've heard all along...I didn't hear Mckenna until much later in my life. But they also call me Goosey, short for Silly Goosey, which they call me some.

If there's one thing I'm good at it's making the butter. "Huh?" you probably thought to yourself. Yeah that's what I wondered too at first. My parents just kept asking "are you making the butter baby?" I finally realized that they're talking about going poo poo. Because everytime I dirty my diaper they say, "oh my goodness, did you make the butter? You're so good at making the butter, baby!" I didn't get it at first until I heard my mom explaining it to someone. Apparently mom thinks my poo poo smells like movie theater popcorn butter (you'll never look at it the same again I'm sure)...and it's yellow in color (I guess theirs is something different?) And because I drink milk and it churns in my tummy and then there's butter. So there you have it, mom and dad think I'm a butter factory.

Hm what else? Oh yeah, I've started sleeping like a champ. Bedtime is fun. I know what's coming because we do the same thing every night. I eat, we play a bit, I take a bath, eat again and then it's straight to bed. I go to bed around 9:30-10:30 and I wake up at 7ish. I either eat once around 4 or I just sleep all the way through. On the nights I sleep all the way through I could swear my mom looks like a different person and man is she thrilled to see me. She comes in and sings about what a good sleeper I am. I mean she's happy to see me every morning, but those mornings you'd think I had been out of town for the last week and she missed me like crazy. So maybe I'll start sleeping through the night every night? I'll try my best.

So, that's it. Life is good!

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?

Happy Momma's Day

A big shout out to the special mommas and mommas-to-be in my life! Also a big thank you to all of the mommas out there in the CF community. A lot of cysters and fibros rely on you to "bring it" every single day and many of you continue to knock it out of the park! Being a momma is special, but being a CF momma is SUPER special as you have a lot more riding on the outcome of your performance :)

HAPPY HAPPY MOMMA'S DAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thankful Thursday - Mommas and Gyms

We can't stress enough how important it is in our own lives to slow down when things seem to be getting "fast" and just think about the little things that we're thankful for. We had 2 brave souls join us last week in expressing their thankfulness last week and we're hoping that more climb on board today! I have a little "Linky Tools" at the end of this post that you can use to join the party and link up your thankfulness post! Feel free to spread this around to anyone you know that may like to participate.

Mandi's List:

I'm thankful for the time I've had with my mom. I always love when she's in town, and she's leaving today :( We've had an absolute blast together the last 3 weeks, and I'm bummed to see her go, but man oh man am I so thankful that we have the great relationship that we have and that she'll be back relatively soon. I'm so thankful that she was able to be back in the states for 3 weeks.

I'm thankful for our gym. The last two weeks we've been back into our workout routine at the gym, and I LOVE it. I am so thrilled that we have such a wonderful gym, and one that is so close to our house. It eliminates the excuse of travel time - we just ride our bike there. How blessed are we that we can work out at a nice gym, that is close to our home!

I'm thankful for hot chocolate. I've cut out all caffeine because I read somewhere that cutting out caffeine can help the quality of your eggs, and even though my doctor said it won't effect anything if I drink caffeine, I cut it out just to be safe. But man, I miss coffee! I am so thankful that I at least have hot chocolate to start my day with!

Ronnie's List:

I'm thankful for mommas. Yesterday was my mom's birthday and I'm so lucky that she was the woman God punished with raising me. I'm not sure anybody else could have done it. My other momma, Nancy, is leaving town today and I'm sad that we're not going to have her around any longer. I am however thankful for the time we were able to spend together.

I'm thankful that Mandi and I have had the energy to nail our new routine. Granted, it hasn't been for very long, but so far so good. We're eating better, getting to the gym consistently and have been getting our run groove back. I'm hoping we can keep it up as you all know how important I think it is!

I'm thankful for our neighborhood. I was just thinking this this morning when I was walking Jezzabel. We have "green belts" that run through our hood with sidewalks weaving on them that make the most perfect walking path for our morning dog walks. It's very green and peaceful in the morning and doesn't really look or feel like the Arizona that I grew up in.

Martha Stewart Watch Out!

My mom has an eye for decorating. My parents' house looks like something straight out of a decorating magazine. My mom has this unbelievable ability to find the most beautiful items at unbelievably cheap prices. She'll find the coolest things at TJ Maxx, second-hand stores, you name it. And the best thing about my mom's ability to decorate, is her ability to find something cool, refashion it, and make it cooler. She can sew, build, create. It's amazing!!

...I, on the other hand, am a decorating IDIOT. I don't know what goes with what, where things go, how to find killer deals - nada. But lucky for me, I had my mom in town this last week to get me going on a decorating kick. She showed me that with just a few additions, you can make a big impact. So Ronnie and I added a few touches this week....check them out!

This is a Turkish Dough Riser I got from Razmataz and filled it with chick peas, split peas and kidney beans and candles.

Two veggie pictures from The Great Indoors

A GIANT fork from The Great Indoors- who doesn't need a giant fork, right?

An iron piece to hang on the oven hood from Hobby Lobby (like how I don't know what to even call it?!)

Used the same beans to fill the glass jars on the table - beans from Walmart.

Another iron thing, this time hung above the bed from Hobby Lobby

Wisdom from Ronnie's Mom

The other day I received a comment on this blog that was directed towards my momma. I forwarded it on to her because I thought it was so nice and then she sent me her response :) I thought you guys would enjoy reading it:

Reader's comment:

Dear "Ronnie's mom,"
Thank you for letting Ronnie post this! I would not only like to hear from you more often, I would thrive on it!!! My 18-month-old son has CF. My husband and I want to raise him to be a strong, confident, happy, faithful man of God... pretty much just like your son! Reading Ronnie (and Mandi's) blogs, watching the YouTube posts, and being a part of Cystic Life gives our family so much hope and so much joy. Thank you for blazing a trail for CF moms that follow in your footsteps. The openness with which your family shares their hearts is an incredible ministry! God bless you!
Sincerely,
Name Withheld

"Ronnie's mom"'s response:

Dear Name Withheld:

Thank you for your kind words! Ronnie is an amazing son and I couldn't be more proud. And then, he married an incredible young lady giving me an amazing daughter. My first one! They make a dynamic duo!

I have heard that CF parents would like to hear about how I parented Ronnie, but I truly struggle with that. Really, I'm no expert! I raised Ronnie, much like I was raised, but with a twist. CF was never the center piece. It was worked into our lives as routine. Absolutely, when Ronnie was sick it became top priority to get him better, but then we moved on. I remember a Mom saying to me (who had lost her two young daughters to CF) "You live everyday like it's your last, don't you?" Out of respect, I said nothing, because I had not felt her grief. But I thought to myself, "No, I live everyday looking forward to the next." I must tell you, Ronnie was at times a very difficult child, but not because of the CF. Because he was Ronnie! A resourceful, quick-witted, gregarious young man who never took "no" for an answer. It was contagious! If Ronnie thought he could do it...who were we to stop him?

My parenting style was very "matter of fact!" I didn't beat around the bush. Aerosols and treatments...in those days...hand pounds (P&D), were part of the daily routine. P&D was like brushing your teeth. It's just what we did! When he was young I'd play games with him during P&D. I pounded rhythms like "Three Blind Mice" or "Old McDonald" and he would guess. "I Spy" was another game. As he got older, that time together was used to talk about family, current events, school, etc. Certainly there were many times we talked about CF and I was straight up honest (age appropriate). Were there times when we fought about treatments? Absolutely! Especially the teenage years. I tried reverse psychology, but Ronnie saw right through it! I made deals...want to go out with friends (squeeze in an early treatment), want to miss a treatment (extra treatment the next day). And sometimes...I just got mad at him! I remember asking the doctor when he was in his late teens and it was such a struggle. "When do they wake up?"

There is one area of CF I feel is the most important. Give your child their voice! As soon as Ronnie was able, I encouraged him to communicate with his doctors. Ronnie knew exactly how he was feeling about his breathing, mucus, coughing medicines, poops, etc. Why should I put words in his mouth? Now, that said, knowing Ronnie and some of the crazy things he could come up with...there were times...I must admit...that I'd communicate to the doctor with a brief little headshake, a stare, or a wink, but Ronnie didn't know that. I think that's part of the reason why Ronnie is so outspoken today, not hesitating to give his opinions, likes and dislikes, needs, etc. Empower them and they will take ownership.

I wish you the very, very best. Enjoy! 18months old...such a wonderful age.

Thanks for letting me ramble.
Ronnie's Mom

I couldn't agree more. If you have any questions for my mom I could certainly pass them along. Maybe she would try to tackle a few of them. Did you hear that momma?? :)

The Ten Things That Make My (CF) Life Easier

This idea actually spun off from me thinking about how thankful I am for different things in my life. I then got to thinking about how much easier my (CF) life is because of certain things I've either bought, inherited, or stumbled upon. Here is the top ten, actually 16, and why I think they make my life better.

16. Good Veins- Having hoses running through my arms has given me the privilege of avoiding multiple sticks most of my life (except this time). I'm not sure if it's something I've done, or just inherited, but I do know that they have made my CF experience more enjoyable. I've had 30+ PICC lines though so who knows how much more they can take.

15. Foot Orthotics- The jury is still partially out on how much the orthotics will help me maintain my running schedule, but so far, so good. I haven't had any major pain to speak of since getting them made for me (Thank you POA and Lindsey).

14. Gyms- I've lived in Arizona my whole life and so far it's been 100+ degrees every summer. That's certainly not optimal outside work out weather. Luckily for me the concept of indoor gyms has been around since before I was born and I have taken full advantage of them. I've had a gym membership since I was 16 years old and although I have had several seasons of my life of consistently going and not going, the gym seems to always call me back to her.

13. My Friends- I've been blessed to always find myself with good friends. Friends who are there for me when I'm sick, but don't treat me like I'm sick when I'm healthy. They've always been understanding in that a CF life is atypical in nature but that it's important for that life to be as "normal" as possible. Often times it's completely forgotten that I'm "different" and they're always there to hold me accountable if I'm screwing up.

12. inCourage Vest System- Admittedly, I would choose a hand pound over the vest every day of the week. I got pounded by hand for the first 20 years of my life at least twice a day and I think it helped me immensely. But with that said, the vest is certainly better than a sharp stick in the eye and I'm thankful that I have a very light and portable one. I take it with me on every vacation and it's very easy to slap on while I work or browse the Internet. It's definitely an easy way to get in all of my treatments and I know that it's doing my lungs good!

11. Wintergreen Mints- It's probably just me, but I swear I breath better when I'm sucking on a wintergreen mint. I usually will have one in my mouth before doing PFTs as I think it opens me up a little. I of course have no scientific evidence to base this on, but sometimes believing that something good is happening is just as good as something actually happening.

10. Baby Bottle Cleaner- This is a fairy new piece of equipment in my house but so far it has produced wonders. I'm actually new to the whole nebulizer cleaning thing (didn't start consistently cleaning my nebs until March of this year) and I started with a hot pot at first and then moved on to just throwing them in a pot of boiling water. Now, I throw them in a baby bottle cleaner, add water, push a button, wait six minutes, and then presto bango, CLEAN NEBS! It's amazing I tell you and what I time-saver.

9. Protonix- So I used to throw-up every single morning of my life from about 1994 to 2004. This of course can be a major problem because I would eventually just be puking up stomach acid, which is not friendly on the throat, mouth and teeth. I had the same routine going of feeling sick almost immediately upon entering the shower and then about 5 minutes later I would start throwing up mucus that I had swallowed the previous night while asleep. I realize that much of this was probably psychosomatic and had just become a habit that I had fallen into, but when I started taking Protonix regularly the throwing up became less and less common.

8. Insurance- I know that I have some problems regarding insurance right now, but there is no doubt that I have been blessed with great medical care my whole life which has been paid for by my insurance company. I've really never had a struggle with getting stuff paid for, and with the exception of one time, they've never put the heat on my doctors for all of hospital stays (a direct phone call from me nipped that in the bud).

7. My Blog\The Internet- This blog has provided such a great accountability tool for me and a great way to express my views and opinions on CF and life (which happen to a lot of overlap). The Internet has allowed my to connect with people out there that I otherwise never would of as well as keep up with the happenings of the CF community and research at the click of a button. Have a question about Cystic Fibrosis? It's only a click away and you can actually get a straight answer from somebody who is going through the same kind of things.

6. Invacare 50 psi Compressor- Going from the PARI ProNeb to the Invacare Mobilaire has made a world of difference. I've cut my treatment times down by at least 50% and the medicine just makes me feel different when going in. It feels like it is having a larger impact on my lungs and it one of the best investments into my health that I've ever made.

5. My Love of Sports- Everybody who reads this blog knows that I preach being faithful with your treatments and staying active. Fortunately for me, I've always been 100% with staying active because of my love for sports. Whether it was tee-ball, YMCA basketball, high school football, or church league softball, I've always been involved in some type of sport. In fact, my longest career thus far has been coaching football which I did from 1998-2004. It required that I stay active just so I could keep up with my players!

4. Patience- Here's the deal, not everything in life is going to work out the way you want when you want. Throw a chronic disease on top of that and your life can be completely different than you ever imagined. There are ups and there are downs, but I've been given the gift of patience by God to see me through the down times. I realize that there is a plan and although I may not know exactly what that plan is, I know that He does and He'll accomplish His Will through me. I also know that His Will in my life will be 100% perfect and I was the man that he chose to carry it out. Sometimes it just takes a little patience for His Will to unfold, as it's not my timing, but the Lord's.

3. Mandi- There is no doubt that when God created Mandi, He had me in mind. There is no other way to explain that a woman exists that has everything I've ever hoped for and has opened my eyes to other qualities I never knew I needed. She is the biggest reason why I'm so committed to staying healthy. I want to be around for her for as long is absolutely possible. Not only do I want to be around, but I want to be the boyfriend/husband that she's always dreamed of. She is truly my best friend and a gift sent by the grace of God because I truly don't deserve a woman like her.

2. My Mom- When I thought of qualities that I knew I needed in the eventual mother of my children, many of them came from what I saw in my mom. She has absolute unconditional love and I knew that her family was what she cherished most. She has sacrificed more than I can list in order to provide me the best care possible starting in early childhood by selecting a job because of the benefits. She lived without so her kids could live with. She was incredibly soft and nurturing yet showed tough love when I needed it most (which was often). Most importantly though, she raised me to live my life and to never ever use CF as an excuse. That put me on the path in which I still live today, and for that, I'm eternally grateful.

1. My Faith- Truth be told, God has provided everything to me that has made my (CF) life easier. He chose my mom , He created Mandi, He gave me my talents and character, He provides me resources, and He put specific people in my life at specific times. I know that He also allowed CF into my life for a reason and that He also promises not to give His children things that we can't handle. He has already set my plan in motion and has given me the proper tools to navigate through life. I trust His plan is perfect, and thus far I wouldn't change a thing. Most of all, when I can't do it on my own (which is 99.9% of the time) He's there for me. When I need His strength it's available. When I need His grace, He provides it. When I feel uneasy, He gives me peace that passes all understanding. When I have doubt, He gives me clarity of mind. When I have sorrow, He is there to give me comfort. And when I have death, He will bring me home to spend eternity with Him.

Here's how I look at it: God and I signed a lease on my life when I was born, I don't know when the lease expires, but I do know that I'll go WAY OVER on the miles.

Confessions of a Chronic Cougher

I received a great question by a mom over in the CysticLife community that I wanted to take the time and answer over here on RSR. Here is her background story with (bolded) questions:

levi has been sick for about a week and now he is to the point where he is coughing while laying down, running around and basically on and off all day. its a wet junky cough and i swear i have been using my stethoscope for the past 3 1/2 years and i never can tell what the heck im hearing if its a wheeze if its not? so anyways the last three times he has been in over the last few months with colds he has not cultured anything not normal so the doc has been going back and forth as to whether or not to admit him so i really dont want to push taking him in because id hate to see him go in at this age. last time he was a champ but he was a little over 2 and honestly would get poked and then forget about it but now he is older and brighter so he knows whats coming he still does really well and isnt afraid of the doctors or anything like that but we want to do what is best for him. he usually gets a cold and starts with a runny nose then he starts to get a wet cough and then he starts the wheeze so most of the time he starts an oral antibiotic and then prednisone. he already does albuterol 3 times a day and his vest 3 times a day for 30 minutes. we started that after his last hospital stay because they did it 3 times a day when he was in so we thought is three better than 2 and they said yes so why the heck wouldnt we continue that if it is better so right now he is doing his vest 3 times a day for 30 minutes and he doesnt mind it at all he actually likes it because that is the only time we let him watch tv that way he looks forward to it and an hr and a half is enough tv in my option for a 3 year old. so anyways he is already doing that all the time so is there anything else you think we could be doing to help him. its hard to because he totally wants to play and run around but then he just coughs more. i usually let him play until he decides its too much or if hes coughing a ton we just do something else like draw or something more calm. anyways i just totally rambled so we are at that place of not knowing what is best. any suggestions or insight to how you feel when you are going through something like this. its hard because he can only tell us so much of how he is feeling. we know his body pretty well but only externally from what we see we see and hear but we cant tell how he is feeling. basically we do all that we can he never misses a treatment well i shouldnt say never (well maybe 2 or three when we go to disneyland or the beach or something fun but basically we are all over his health and do all that we can to keep him healthy. so any advice would be awesome! sorry for rambling. k the boy is off the vest gotta run. we will be in touch. have a great night!

First of all, I can't stress enough that it sounds like you're doing a wonderful job in raising your boy! It sounds like you've found a nice balance between his life and his cystic life. A couple things I would say to you however...

One, coughing does not always mean sick. I'm a chronic cougher. There, I said it. No seriously though, I cough all of the time. I've coughed since I was his age and I continue to cough now. I coughed when my lung function was over 100 percent and I cough now with it in the 60's. Point is this, it's important to look for other signs that your child is giving in order to determine an exacerbation or not. You can check mine off the list every time I get sick. I'm more tired but I sleep less. I have to force myself to eat. I wake up in the middle of the night coughing; all night long. I usually wake up more tired than when I went to bed. I have a REALLY tough time motivating myself to exercise. My stools float more. They're stinkier. I'm generally nauseated. And I can't get my mucus to ever be clear at any point of the day. Whew!! I know, quite a list. But, it's important to note, that that is MY list. As a parent, you want to make mental notes about some things that ALWAYS happen when they are really getting CF sick. For me, coughing isn't one of them. I'm always doing it.

It sounds like you have your son on a very strict treatment regiment. Here's a couple of things I would try to switch it up. Have you ever thought about hand pounds? For me (apart from running), nothing works better at getting the mucus up and out. Ultimately, that's what is important. Getting the gunk out of there. If you can manage the mucus, you can manage Cystic Fibrosis. Is there something that ALWAYS gets your son coughing? It sounds like it may be just running around and playing. I would suggest having him do that more. There's nothing magical about the vest, I hate to break it to you. I mean, it does a great job for most people in doing it's job, but it's not the only horse in the race. We as a community have to figure out what works best for us at clearing out our lungs and forcing us to take deep breaths. You, as his mother, have that responsibility for your young son.

Also, to get back to what you hear when you listen to Levi. You may never hear him wheeze. In my 30 years, the doctors have told me that they have heard me wheeze less than 5 times. In fact, 9 out of 10 times, even while in the hospital, they say I sound "pretty good". Maybe it's because of all that coughing I'm doing :)

Last piece of advice. Use your instincts as a mother. There's no guide out there written specifically on how to manage your son's CF. We're all different. Sure, we can take bits from some and pieces from others, but like I say to people all of the time, "You're CF has NOTHING to do with anybody else's CF". The proverbial different strokes for different folks. Don't ever make decisions based on being the mother of a child with CF; make decisions based on being the mother of a child.

5 Rules in Raising a Child with Cystic Fibrosis

Originally posted August 2nd, 2009

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

How I was Raised by Lauren "LauLau"

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

Here are the five rules she lives by:

1) Always look on the bright side:

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

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

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

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

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

4) Make things fun:

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

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

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

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

A Mother's Manual for Cystic Fibrosis

Before I was diagnosed, nobody knew what was going on. I didn’t show typical symptoms of CF. I had a rash from head to toe, was very cranky, and due to an inability to keep food down, dropped close to my birth weight. I went to different doctors, all of which had different opinions. One doctor blamed my “failure to thrive” on my mother’s breast milk, another thought it was allergies. At six months of age, after months of guess and check, I was taken to University Medical Center in Tucson, Arizona at the behest of my military doctors. There I was diagnosed with Cystic Fibrosis. Legend goes that I tested positive several times for the disease, but the doctors hesitated to believe the results due to my a-typical symptoms. My case was actually written up in a medical journal because of my unique manifestations of the illness at a very young age. And so the journey began.

Once I was diagnosed, my mother was frightened and confused. She had never heard of CF and with a life expectancy of 20, the outlook was grim. In 1980, the year of my birth, about 4% of people born with CF died in their first year. Being told that you will outlive your child is something that any parent would dread hearing. Doctors didn't stop there however. The list of "certainties" my mother was told only went on: “Your baby isn’t in perfect health”. “Don’t expect a normal life for your child”. “Your child isn’t like other children.” “There’s a good chance your son won’t live long enough to graduate from high school”. “Your son will have limitations on what he wants to do with his life”. “Consider yourself blessed if he sees his twenties”. I often think back to that time (by putting myself in my mother’s shoes) and feel extreme sadness for what my mom must have been going through. Here she was a 24-year-old woman, with a husband who was constantly away on military duty and obligations, with a sick child and information that didn’t paint a pretty picture.

Motherhood, for most, is a time filled with joy and excitement. But what about the few mothers who are faced with the unexpected? The potentially devastating? Some women were created to face these challenges, I'm lucky enough to call one of those women Mom.

I thank God everyday for my mom. My mom was the perfect woman to be put into this “dire” situation. There was no way in the world she was going to let me be a statistic. We were, together, going to face this disease head on. She has been the best teammate a (sick)boy could ask for. I had CF; CF wasn't going to have me. Our attitude, our efforts, and our determination would directly effect my quality of life. Want to know where my outlook on CF came from? Her name is Christine. She has never, ever, let me view CF as a crutch or curse. She never treated me differently because of CF. Is there a manual on how to raise a child with CF? No, but my mom sure should write one. She threw out all of the "certainties" doctors burdened her with, but allowed one piece of advice to mold her mindset. He said, “Listen, Ronnie has a physical disability, but you don’t have to make him mentally disabled as well.” With that, my mom decided to do what I feel she was born to do, just be a mother.

Should CF Women Have Babies?

I received this email over on Facebook from a women who is reaching out for help. I wanted to share it with you guys and hope to get her some feedback. Please leave your comments for her here or you can always e-mail her directly.

ronnie i am 21 i have cf and all my life i was told im dying give up all the negative stuff on top of that my mom was in lighter words insane honestly unfit to raise me and know im happy to report i went from living with her being 80 lbs and 40% lung function to being with my now husband and i went to 122lbs and 72% function im very happy but heres the problem my doctor isnt happy she actullay is mad im not better and my husband and i want to have children and she sat there in front of me in clinic and told me i was dying and i shouldnt bring a child in to this world with a dying mother and told me if i did get prego i should terminate if it had cf but thats like my mother terminating me and you you know what should i do i know i need my doctors on my side to go through a pregnacy it says so on all the websites and that it is possible and it could be healthy and all that should i try and find another cf doctor report her for paiteint doctor abuse if so how i live in houston texas there are no other cf adult care doctors but her in my area i know your a guy but i really need help i have just learned in the last year all about my illness for my self lost my medicaide lost ssi everything cause of my mom and she never told me anything about my illness so im really just now learning about it and i have no clue about anything out there to help my husband and i with any problems we have such as prescripton cost doctor rights anything i really need help from my cf community please feel free to contact me on here or by email shelby87a@hotmail.com and if you need other people opion feel free to post this i need all the help i can get from anyone who can give it thank you

I'm sure that she would love to hear from some of you cysters out there who have babies of your own. It sounds like she is very interested in carrying a child, but seems a little uncertain about bringing a child into this world without being able to guarantee it a "normal" upbringing. What would you guys say to her? I'm sure any feedback would be much appreciated.

My First Hospital Stay

Now, I have a terrible memory, so I probably won’t be able to capture exactly what I was thinking or feeling during my first hospital stay, but I do have some memories from hospital stays from early on in life. My first hospitalization for Cystic Fibrosis, in which we so proudly call a “tune-up” was when I was about 8 years old. Like I said, I’m not sure how I felt about it at the time, but I’d almost be certain that I wasn’t scared. My mom seemed to always be with me (I’m sure she still had to go to work) and I knew it was something that I “just had to do”. My mom was always good at being very matter of fact and not making CF related treatments a big deal. Somehow she convinced me, or made me feel, that although I was different than other kids, I wasn’t strange or a weirdo for having to go into the hospital. She would explain to me that some kids are in wheel chairs, some kids wear glasses, some couldn’t hear and I happened to have to do treatments and go into the hospital once in a while. I understood very early on that we’re all different one way or another and it was all relative as to how “bad” you had it. I really fed off of my mom’s attitude towards CF when I was little and never was able to use this disease as a crutch or an excuse.

Anyway, back to my early hospital stays, here’s what I remember:

* Throwing a watermelon out of a window from the third floor of the hospital and watching it crash to the ground with Robbie and Rusty (other CFers)

* I think I had a crush on MULTIPLE nurses. I just remember them being so nice AND cute. There was one in particular that would give me wagon rides in the hall that I would look forward to everyday (my first hospitalization must have been before I was 8, or do they give wagon rides to 8 year old? Mom, help me out here). I believe she had blonde hair, blue eyes and went by the name Julie.

* A older CF friend of mine cutting open his maintenance bag (saline) and putting a gold fish in it to swim around for a while. I remember the nurses and doctors being quite shocked.

* Going to the doctor’s lounge late at night to shoot pool with Dave (another CFer). One time, I accidentally pulled my line out during a pool shot and didn’t notice until blood had backed up all of the way up into my IV bag.

* Playing poker with Robbie (another CFer) using change that we borrowed from the nurses coffee kitty (they would all pitch in money for coffee grounds and filters).

* IV pole races down the hall. Whether it was the one-legged push race for distance or speed, we were constantly flying down the halls on our IV poles.

* We had tutors that blocked out a couple hours a day for us to complete all of our homework. I clearly hated that part of the stay.

Those are the first thoughts that always jump out when I think of my first hospital stays. On another note, I hate to bring the mood down, every CFer I mentioned in this post has since died. Some fought the good fight for a long time while others weren't so lucky (Robbie at 16, Rusty in his early 30’s and Dave in his mid-30’s). The only reason I point that out is to remind some out there how real Cystic Fibrosis is and how badly we need a cure. The good thing is that we've come SO FAR in our fight against CF, but it won't be enough until no CFer (or family) has to suffer because of the disease.

The First Time My Son Died

Note from Ronnie: This is an email my mom sent to me regarding "the time I died". When she wrote it, she wasn't aware that it was going to be posted on the blog. I got her permission to share it with you guys and I think it's a real and raw account of what she was feeling during this event. To read about the account from my eyes please go to Part One and Part Two of "The First Time I Died".

Just because I thought I would share a bit of history...

First...you must remember, that your near death experience happened before you met every top person with any official title at UMC and before you became UMC CF "famous." When you enter ER now and you pretty much have someone sneaking you in the back door for fast service.

I realize our memories of this particular event will be different because you were laying on a gurney slowly being pickled by dehydration and I was trying to remain calm in a very anxious state of mind. I have spotty recollection of the entire event, but yet some parts are still so vivid.

My first memory is of a nurse asking me why you took so much medication? I believe I told her at least three times, "because he has Cystic Fibrosis." She was also amazed at all the information on you in the hospital computer. When I finally made it to a male triage nurse I desperately tried to explain CF, that dehydration was serious to a CFer and that could someone please at least start IV fluids. I pleaded several times to the male triage nurse, but it was like running into a brick wall. I called everyone I could think of...on-call peds pulm, 3 NE nurses station, one of the CF docs, etc. Bobby and I even discussed rolling you out into the ER parking lot and calling 911. At some point there was a phone call for me at the ER desk (I think it was a football coach checking on you) and in front of the male triage nurse I said, "It's not good, he can no longer feel the lower part of his body." Bam...within a minute you were in an ER room!

You weren't in good shape and I can't remember if you had even seen anyone medical yet, when things started going south. I had never witnessed anything like this and it was horrifying to watch. You started to breath really shallow and all the sudden your chest was literally heaving up and down on the gurney. I ran out of the room and the first person I saw was your 'angel doctor in the pink clogs'. She had treated you before and all I had to say was, "Ronnie isn't breathing right." She was in that room faster then a bolt of lightening. She was screaming your name, hitting all the emergency buttons, and then you stopped breathing. I can remember her digging her fist into your upper chest so hard that I thought she'd break something. As medical personnel were running from several directions, carts racing down the hallway, you started breathing again only to stop breathing. I saw the paddles on your chest and stepped out of the room.

I have no memory of what I was thinking as I stood outside the door. A doctor was stroking my arms up and down and telling me to breath. I know you started breathing again without getting zapped. Minutes later I hear your voice say, "tell my mom I'm okay." That is when I slid down the wall and just sat on the floor. It wasn't long and what seemed to be a 'very important lady' appeared and talked to me. I don't remember her exact conversation, but had thoughts that she seemed troubled and worried. My part of the conversation was repeating several times... clearly, "The nurses wouldn't listen. If only they had listened." and "They didn't even know what CF was."

I'm not sure why, but this last memory still puts a half smile on my face. Because you had stopped breathing you had to have an EKG. Who do you think was sent into the room to hook you up to the electrodes and the little ticker tape? Yep...the male triage nurse.

To make a long story short...Thank God you're alive and thank God for 'angel doctors in pink clogs'!!!!!

Love you,
Mom

I encourage you to share your thoughts with my mom as I will make sure she reads the comments that are left for her. I'm trying to convince her to write a couple of posts for this blog and I'm sure any begging/pleading/nudging or comments of appreciation will help greatly. I know a lot of you would enjoy a CF Life from a mother's perspective.

Thanks so much guys!

Lovin Lane is "CF Made"

When you have Cystic Fibrosis, it just seems like you're cut from a different cloth. I feel that I often view things a little differently. It seems like I really don't sweat the small stuff. To be honest, I think I'm a little "tougher" than most of those around me. What I call "the talents of a CFer", Marcy (a CF momma and author behind Lovin Lane) calls "CF made". I'm sure that many of my fibros and cystas out there can relate to the following blog....

CF Made...

So I have learned that my son is CF made, which is what I refer to as durable...lol... whether diving into a pool, or taking a baseball or two or three to the face, he seems to have a high pain tolerance... Something I have come to realize God has issued CF children a little more of... So his CF made body and his love for life sends him up my fence.... Will I ever get a break from the ER I wonder?? Yes today I was spared, Thank you Jesus, for my heart can take only so many... I am wondering if all the over the top number of crazy things that happen to him, is to some how out weigh the CF.... hmmmm Food for Thought.... And yes I have survived boys (we have two in high school) but this one is going to do me in... This one is dangerously invincible... Or as I say CF Made...

So what do you think? Are you "CF made"?

I know I am.