Time was not a luxury she had!!!

I desperately miss this beautiful young women.... If you are on the fence, wavering whether you have the time to sign up for organ donation, look at Nicole. Nicole didnt have the time to ride any fence, she lost her life to cystic fibrosis while waiting to have a lung transplant. She was a beautiful spirit who gave unselfishly... Oh how I miss her.... BE A HERO, SAVE A LIFE, BE AN ORGAN DONOR...

You know you are a CFers Mum if-

You know your a CFers Mum if you laugh and blame your husband for that foul smell... You have resorted to a Poop Gallery to better explain things to your doctor..... You have an Adeks race to see who can finish the chewable first, only you are just pretending to eat that terrible thing, and your son thinks he wins every time..... You resort to every kind of bribery known to accomplish treatments and have NO guilt about it what so ever..... You are estatic when you child wants to eat at mid-night.... You have no guilt piling on extra sour cream, butter and everything fattening to everything they eat... You DARE anyone to mess with this child, and if they do, you pray you are having a really good day lol.... You are considering going to the school and requesting that they repeal the "Perfect Attendance Award", because you have nightmares about what the child sitting next to yours is suffering from..... You never get enough of your child asking to have their back rubbed.... You ask the Lab if they can take some of your blood (for no reason) just so your child doesn't have to do it alone... you enter a Doctors office or ER and instantly tell your child "don't touch ANYTHING" and lather them with germ x every 2-3 minutes.... You try and create wonderful Milkshake concoctions, that are so irresistible your child can not turn them away, and you are begging God to give you the will power not to eat them.... whoa that's a tough one.... You have placed every doctor, pharmacy, & hospital on speed dial.... You have NO problem what so ever recreating the "Give my daughter the shoot" scene from Terms of Endearment, whenever your child is not receiving good treatment, and the more you reinact it you realize you may be up for a actress of the year award.... Your child collects all the medical equipment possible during visits, not so he can simply play with them when he gets home, but rather so he can torture you as he reinacts his visit (and you must now suck it up and like it)... .lol.. When one sucker wont due, and the Doctor resorts to giving your child 5 suckers just to listen to his lungs.... Your child knows exactly where the good patient stickers are, and upon leaving you realize your child has stuck nine to his shirt (oops).... When your child thinks the UPS truck is the "Medicine Man", that just delivers drugs to everyone... You try and make your child understand that this very expensive vibrating toy is really allot of fun, and all the other kids would love to play with it, so he should too, when he still refuses you tell him you will give him a dollar.... By the age 5 your child is now requesting 20 dollars for treatment sessions (you laugh, yeah right!!) You are trying to figure out where in the world to store all these medications.... When you forget and leave some down, your husband points out your error and you laugh and reply, yeah right like the kid is going to run over and takes 20 more doses after you just had to pay him to take the first 20 lol lol lol.... If that was the case I would leave them in reach on purpose, I could save a ton of money lol.. Your child at age five can swallow more pills at one time than you can!!! You find pills under the table where your child tried to feed them to the dog, and even the dog turned them down!!! Examing poop has become a part of your daily routine... You look often at your child, pondering where in the world he recieves his courage from, cuz it far surpasses your own....

This is a branch off of our wonderful "surfer girl" aka Nicole Goetz (she would love to see it continue) - You know your a CFer if- Feel free to leave comments with your "You know your a CFers mum if- or you know you are a CFer if, and I will add them to the lists...... I am going for 3200 ways instead of 32, yes it will take years but we gotta keep laughing...

From Nicole aka Lane's "Surfer Girl"- You know you have CF if:

32 ways to know if you have CF (maybe more) You do a happy dance when you hack up a huge wad of mucus, show your dad and he gives you a congratulatory high five, show your grandma, and she gives you money! When anyone at school, or anywhere for that matter, says that spitting is gross, your family or friends hurt them... real bad. Your doctors are on speed dial, and email, and pager, and IM. You know more medical terms by the age of ten than most people know their whole lives. You have multiple scars from PICC lines, Port-a-caths, IV's and other 'experimentations' as the medical community calls them. And because of that, you spend more time shopping for a prom or wedding dress than the normal girl because you have to find one that covers all of your scars to your liking. You are so skinny that your port sticks out like a bottlecap, and you are the proverbial 'test dummy' for all the new nurses fresh out of college, "you don't mind do ya?" You can’t even take great pleasure from your second milkshake of the day (even though your friends are jealous) because you know it is laced with Scandishake. You have used your small size to hide in the coat closet so your RT can’t find you. You have antibacterial gel in your purse, in your car, on the kitchen counter, in the bathroom, in your office, in your friend's house, their car—heck everywhere! You have your enzymes in at least 3 of the above locations with the anti-bacteria gel. You can smell cigarette smoke hundreds of feet away and go searching for the source so you can ask them to trade their hopefully still ok lungs for yours so they can kill themselves faster. You laugh at those who cry about a common cold or worse yet stay home because of it! Unless they are co-workers, then you love them for staying at home because of it. You randomly yell at people who are coughing "GO HOME!!!" And you aren’t impressed at all with the kid who gets the perfect attendance award because you know that means he came to school sick at least once. You have talked loudly in line at the grocery store about using your vibrator when you get home. You know what tobramyacin ototoxicity is and have the hearing aids to prove it. You are truly sad for those cute little lab mice who must suffer from experimentations so we can have medicines to help us live — for about 1 milli-second-- then you jump for joy because they came up with something to help you breathe! You can instruct the nurses how to work the IV machine at the hospital and sadly you can tell which ones you should instruct the minute they walk in the room. Some of the most memorable times with your friends/family is hanging out and wasting time at the hospital. You may have been the one to try to pass off Mountain Dew as your urine sample upon admission. You know the hospital menu forwards and backwards and can advise others on what to avoid. You laugh when someone asks how you “caught” your CF. You have also learned who your real friends are because most people can't take the pressure of being around a person who has CF. You make people wince on a daily basis because of the sound of your cough. The checkout lady at Wal-Mart has confidently told you that she just got over whatever you have and recommends Theraflu. You laugh and tell her you don't think so. Then, you buy the theraflu, because, heck you'll try anything. You can sleep through anything, especially beatings, in fact they make you sleepy. Some of your best naps come in the hospital during treatment time, since it is the only 60 minutes that is uninterrupted. You’ve learned how to navigate through health insurance red tape by the time you are old enough to dial the phone. You don’t even blush anymore when asked about your bowels. You are a multi-tasker by need. While doing you're vest you MUST eat breakfast, do your nebulizers, work (or homework), make-up, straighten your hair and have a conversation with your spouse (mother) about your most current ache in your chest all at once or it would never get done. You learn by the age of 6 that life is a gift and most people don't see it. You have used your vest multiple times as an entertainment device for the kids because a shaking vest is a fun 'toy' and a laughing tool for the adults when you try to talk to keep up with the conversation, even on the maximum setting. Many adults have commented to you that you are very wise for your age. You would be too if you had been through it. You really did have a midlife crisis at the age of 14... "Nobody, including myself, thought I would get this far, now what do I do?" You are an adult with CF if the last one has happened more than twice... After “rounds” are over, you feel like you’ve earned a white coat more than some of the residents. When you are talking about getting on the list, you aren’t referring to some elusive party. You’ve had new lungs on your Christmas list. Clubbing to you is not a place where you can go to hang out and meet people. You bought stock in Kleenex. You get mad when the needle on the scale goes down but your friend is ecstatic when hers does the same. You have passed gas and blamed the smell on the dog. If Albuterol and Xopenex were living things you would marry them because according to you they were sent from heaven to us CFers for a little help in the breathing department. You lost your savings on trying to market "I heart albuterol" t-shirts. You get truly pissed at people who don't put yes as organ donors on their driver's license, what the heck are you going to do with them when you're dead, huh?! You made peace with God at an early age. You feel as if there is ALWAYS someone worse off than you somewhere. Sadly most of the time it's true, and you usually know the person, intimately. You are constantly on the go, realizing that time stands still for no one!!! You are constantly on the go, because you have 1/2 the years to do all the same things. You grew up thinking that everyone in your class does machines, nebulizers, inhalers, sprays and pills for an hour or two each morning before they came to school and an hour or two after. You are more scared of losing your loved ones, family and friends then you are of dying yourself. Your second greatest fear is their loneliness when it comes, since you know it is inevitable. You truly feel that God gave you this for a reason and, dang it, you're going to make Him proud, or die trying, or both, probably both! You realize at an extremely young age that you can buy everything but time and as a CF'er that is the one thing you would love to have! (If you're afraid of commitment, marry a cfer)

Selfless Acts of Kindness..... Nicole....

My Wednesday was rather weepy, as I ventured over to myspace to find my dear friend and she was nowhere to be found.... Nicole entered my life in such a way that there was no question it was a "Divine Intervention From God".... Nicole possessed one of the most inspirational spirits I have ever known... She had the perfect combination of giving you enough push to inspire you to give it all you have, and enough understanding and compassion that no matter where you were on your own journey that she NEVER minimized your struggles... In fact, I remember clearly Fat Tuesday.. After sending Nicole a ridiculous email about my struggles with Lane having to get poked all the time (which is so so so so so minor compared to her health status at the time) I didn't get a response.... She was in a sterile hospital with nothing to do, so I quickly got worried after one day turned into two and three and then a week..... So worried i had spent hours surfing the internet going through obituary's to try and find out if something had happened to her (I never shared that with her)..... It just wasn't like her to vanish.... so everyday I just kept checking the obits.... Then poof out of nowhere she resurfaces, apologizing for scaring the poop out of me....... She goes on to tell me how she had coded (my gut was right, which scared me even more) and she discusses her experience with coding ( which uhhh is the biggest problem anyone could have and totally trumps my little issues with pokes) but Nicole being the amazing person she was goes right into talking about the pokes I wrote her about a week prior... she writes "I'm soo sorry your son had such an awful poker! I always had a 2 limit rule. They got two pokes and if they weren't successful they were to call someone else in to try. Might be a calming rule for both you and your son so when it happens, he'll know that if the person completely sucks at drawing blood or starting an IV someone good will be in soon!" Shocked with her selfless kindness, I respond telling her "See that is why I told you that you could laugh over my bad poker deal lol.. I am new at all this and so I am still at the baby steps of a blood draw... one day I will look back and laugh as well... and I will remember your 2 limit rule, i am learning as I go..." and still she does not minimize my problems, still offering me comfort as she goes on to say "no need to apologize about baby steps! everyone has to start somewhere and i'm simply grateful i can help you in any way possible!!! like i said- never be afraid to ask me questions! i'm sorry i scared the p out of you- i thought about you sooo many times and was scared you'd wonder what happened, but i figured you'd understand when i explained things to you ;)" Wow, this young woman, all of 28 years still worried about me being worried about her, and my issues with pokes all the while this was her week "Sooo sorry for the delay! Unfortunately- last week was a very bad week. Tuesday started out FATASTIC! I felt great! Around noon I coded- my blodd pressure dropped, my sats dropped below 60, my lungs wouldn't stop bleeding and I couldn't breathe or stay conscious so they called a rapid response code blue and ended up life flighting me to Indianapolis (about 2 1/2 hours away) for an embolization. I spent tuesday night in and out of consciousness in the ICU and spent 5 hours in surgery Wednesday" And yep after experiencing that kinda week she was still comforting me... She was absolutely indescribably amazing.... No ordinary Lady here... She NEVER minimized anything I was going through, no matter how ridiculous it may have been compared to her battling for her life.... she was always thinking of everyone else first.... The most important lesson of all that she taught me was living every moment of everyday.... I was never fortunate enough to ever know her wonderful parents, but wow they raised the most amazing daughter.... I know that God has not only fitted her with a set of Golden Wings, he has given her a set of Golden Lungs as well, Breathe Easy....

Breath Easy our "Surfer Girl" May you Rest In Peace...

I am crushed to receive the news that our "Surfer Girl" aka Nicole lost her battle with CF.... I met Nicole shortly after Lane was diagnosed and she did wonders for my spirit.... I am pretty upset right now and cannot begin to form the words that would best describe Nicole except that she was ONE OF A KIND.... An amazing young women, who taught me so much about life in the short time we were blessed to be apart of her life.....



This is just one of the amazing e-mails Nicole sent me, and one that truly touched me and made me cry each and every time I read it.... I am Heart Broken.....






"Please know you have touched my life just as much as I've touched yours! You are now family! And I know your son will grow up to be an AMAZING man! My mom is my hero and I credit my strength and courage to her. I can already tell in just the few words I've had with you, you will raise an amazing son. There will be VERY hard times ahead, that's no secret. Some of the things I try to remember, is that a lot of bad things happen, but the only thing that really matters is how we conduct ourselves during those times. Attitude will get you through many things or dismantle you completely. Tears do not mean weakness. Smiles do not mean strength. Be as open and honest as you can with your son about things so he can understand them. We really are old for our age. As we grow, we come to understand that this is just the way things are. No guilt is necessary- we really don't know any other life so we have no pity for ourselves. Again, this is taught to us by our parents. You are a specifically chosen angel to help another little angel through his path in life! Love every moment- the good and the bad- amazingly enough, some of the bad moments turn into good memories later in life. I can remember horrible times for me, but what I remember most is the love of my mother during those times and that makes me smile and brings me comfort. God doesn't give us more than we can handle =) Love Ya! *Hugs*Nicole"


"awww! lane is awesome and someday we'll walk together in one of the great strides walks! i'll try to find more stickers to send him!" *Hugs*Nicole







Oh my Surfer Girl, I wasn't ready to do this alone.... and Lane and I both are not ready to say goodbye.....

Divine Intervention!!!

March 2, 2009 - Monday
Divine Intervention with my surfer Angel!!!

Current mood: enlightened Category: Life

As most of you know, I started out in this process completely lost.... I knew a little about CF. I was kinda strolling along thinking I had made it through my share of life's lessons, I had paid my dues, so the rest of my life would surely be a breeze... Once again a very selfish thought. We compare our lives to the rest of the population, certain families seem to breeze right through life with little tragedy while you may look at another and wonder why they have been dealt so much grief. Okay I by no means thought I had been dealt the deck of nothing but grief, but I did think that I had at least survived the worst of what would come my way and that I could breath a little easier knowing I was on the sunnier side... Little did I know that those events or times in my life were just making and molding me for a greater purpose than I had not anticipated. This is why we are also told not to try and guess what God has planned for us, we will always be wrong..... So in the beginning of this journey ( okay so it has only been a few weeks, but believe me it feels a lot longer than that) I found myself searching the web looking for any and all answers I could find. I surfed many websites and personal pages. I did add one foundation, but didn't write anything or send any messages. I just wondered around in cyber space, not even knowing what I was looking for. All of the sudden among hundreds of photos I spot this surfer on a hospital bed, and her photo just spoke to me. I could see this wonderful spirit beaming through this hospital mask. It was an overwhelming strange feeling that I was drawn to this complete stranger. But I just had to talk to her. So I sent her a message, asking her to please not think I was a total crazy person but that I was just drawn to her site. Personally I have never requested a stranger to just add me, and would not have blamed her had she turned me in for spamming or something, I would have thought I was crazy lol.. This sweet women added me and as I read her page I was instantly humbled. Wow what an amazing young women. She has gone through more than I could possibly imagine. I realize I have taken so many things in life for granted. I have sat on my side of the world complaining about the most trivial things, while someone across the states has suffered so much and yet she is so grateful.. My words cannot express the emotional, spiritual, awakening this experience had on me, and I had not even spoken with her yet. We start sending messages back and forth and her words are making me laugh in a time I didn't think I could, cry when I tried not to cry, and left me speechless pondering how one is able to get to a point in their life that they totally "get it". They have figured out what all the rest of us keep running around looking for, " the meaning of life". The good, the bad, and everything in between. The last letter she sent me, I cried every time I read it, her words of encouragement and understanding left me knowing that this was no ordinary encounter, but a divine intervention, for me that is. Her words were meant to sooth and encourage me, her spirit was meant to touch me, and her love of life was meant to show me. Until you experience such a life changing moment from a complete stranger, it is hard to understand, but I wish for each of you such a divine intervention as mine. God will clearly show you that he is in all things. Well after I had my boo hoos over her last message, I didn't hear back from her. She wasn't expected to get out of the hospital until today and I hadn't heard from her since last Monday. This last week I was really kinda stressing out over it, I was worried about her health, and truthfully didn't know what had happened to her. She was being kept captive in a sterile hospital, so surely she had time to get online.. Something had to be very wrong... I shared with my sister and mom my concerns and checked in on her everyday, but no surfer girl. Heartbroken, I thought I would check again, and to my humble gratitude, my surfer girl has come up from under the surf... I was so relieved, of course selfish of me again.. Her week would bring you to your knees, I read the words I had dreaded and feared the most, my little angel had coded, had to be life flighted to another hospital and have emergency surgery... My heart sunk and at the same time I am jumping up and down that she fought the good fight and obviously has more lives to touch.... Way too go girl!!! I am taken back by her courage and spirit. I think that if I can have just a little of that rub off on me, what amazing things I could do... I am forever grateful God has shared her with me, and my son will forever benefit from how she has touched my life....I am so blessed. I am so glad to have you back surfer girl... and to the rest of you, I pray you all experience such a great divine intervention as mine.... *Hugs* Surfer Girl...