LOVE is life's caulking!

Another year has come and gone and with it many wonderful times that I'd repeat in an instant and horrible times that I hope never rear it's ugly face again.

I was thinking about this past year and how much my heart has handled. There have been some pretty sad moments in 2012 that completely shook me to my core and broke my heart. Yet here I am loving life and ready to take on 2013 with whatever it brings my way, but how? LOVE is the answer.

Love is what has held/healed my heart time and time again. Fortunately I have had more moments of love/happiness/joy/laughter to help caulk each tear/break/crack/rupture sadness has brought to my heart. I really relish those great times. They are what keep me going…be it time with friends and family, reading a funny article, watching a comedy, keeping up with loving posts from my world of Facebook, Twitter and Instagram. I am surrounded by people who love life and have such positive outlooks on life. Even when hard times hit, these friends/family don't let it bring them down. They are truly thankful for what they have and for what they don't have in life.

In regards to CF being in our life, all that I stated above is what helps me deal with this disease that's in my child's body. It's what helps me teach her to stay strong and find the greatness in life. Yes, CF causes some pretty awful cracks in my heart…every time I learn of a CF related death, CRACK! Read about a parent missing their child, or a child missing their parent because CF took them away, CRACK! When CFers abuse their bodies and don't take care of themselves, CRACK! Or worse, a parent neglects the care of their CF child or smokes around them, CRACK, CRACK, CRACK!!! Thank goodness for: moments of CFers staying strong, exercising despite feeling ill, recovering from a lung transplant and running a 5K, traveling to CF education days and allowing us into their world, starting up Podcasts, amusing us with a puppet, putting on runs/walks for us to partake in, the list goes on and on. So much greatness and love...caulking every crack in my heart! Life is great, isn't it?

Sadly I know a few folks that allow that ugliness of life to take over their world. I feel for them and want to help, but I know all to well that they will only get better when they learn to help themselves. Believe it or not, I have strongly suggested to a couple of friends that they return to their faith in God or not allow themselves to stray from it. For those who know me well, my faith strictly relies on humankind, on life, on the good this world offers us; but just because I don't have a deist faith, doesn't mean I don't know how important that is to many of my friends. That itself is the caulking in their life and if it helps them then it's what makes it right. If only those few Debbie Downers could feel it and help them maintain a positive outlook on life…how wonderful that would be.

LOVE is the caulking in my life. I surround myself from those that have abundance of it and I sure hope I'm giving it back.

Here's to a great 2013 my friends and family. Enjoy what you have, be thankful for what you don't and don't stop loving…we have many hearts that need caulking, let's be there for one another!

Hate exists because so does LOVE.

I’m blogging in response to another blog. Not that this response was wanted but isn’t that what blogging is all about, to put out ‘there’ what we want to express?

So fellow fibro Ronnie Sharpe blogged this week regarding being blessed with CF. I actually don’t have a problem with him and his wife Mandi feeling that way about CF. If they feel blessed with this disease and it helps them lead a good life believing that…by all means, believe that. However, he then wrote the following…

“Mandi doesn't hate CF + I am CF = Mandi doesn't hate me”…

…"I really feel for the people out there who hate CF. I really, really feel for the kids out there who's parents vocalize how much they hate CF. You know what that says to some kids? That you hate them."

So there are a couple of things going on here:

1. Notice that he put SOME kids? Which is a good thing because I believe MANY kids do not feel this way at all when they hear their parents say they hate CF. Mine is one of them, because—although I don’t say it daily, weekly, even monthly—I do hate CF and I have stated that vocally and in written form.

Hating CF is one thing…harboring that hatred is another. I go about most of my days not hating it. I couldn’t imagine feeling hatred every single day. That would tear me up and make me no good to my husband, my children, my family and friends and mostly no good to myself. I rather focus on LOVE. Loving that despite CF Andrea is healthy, we’re able to provide for her needs and we’re able to fight towards finding a cure. Love is what makes me do these things not hate.

During the moments I feel hate, I usually blog about it to get it out of my system so I can get back to focusing on life in a more positive way.  But CF rears it’s ugly head some days and slaps me hard across the face. It sometimes punches me in the gut. It’s days like the one we had last week where the docs called to say Andrea’s considered colonized with pseudomonas, she’ll have to go on TOBI indefinitely and they’re going to sedate her with gas/anesthesia and perform a bronchoscopy. It’s days like the one a few years ago, when I listened to a dad tell me the struggles his daughter went through with CF and ultimately held her in his arms as he watched her take her last breath. It’s days like those that make me say I HATE CF!

I also am thankful of some great things that have come our way because of CF. I’ve met wonderful people because of it, we’ve done wonderful things because of it; in the way of promoting awareness, raising funds, being a shoulder for one to cry on when they’re hating CF and much more. It makes me feel proud at how well Andrea handled last weeks news and how courageous she was to bring her boyfriend along to the doctor’s visit so she can get questions answered and he can learn what all she has to endure in order to survive.

You see there are always two sides to everything and in the case of CF there’s a good (love) and a bad (hate) side. The struggle for some is figuring out how to focus on the good and when you start to lean towards the bad, figure a way to get out of the funk and move on. It's really a must!

2. The--I am CF--is true, but it’s not just solely that. Yes Ronnie and my daughter Andrea were born with CF but they were also born with brown or blue eyes, short or tall, brown or blonde hair, etc.  There are many things we’re born with that make us who were are. CF alone is not the one defining factor in who they are. It’s only part of who they are. Of course then you have to add the environment someone is born into, family, friends, acquaintances, teachers, co-workers, religion or none, etc. All these things together shape us into who we are. So I would much rather hear/read I am Andrea and I have blue eyes, blonde hair and CF; or my mathematically equation would read like this:

Susie hates CF + Susie loves Andrea who has CF  =
Together we’ll kick some CF booty! J

People have the right to express their opinion just as Ronnie and Mandi do and may I add; they do it quite well. However, there are differences of opinions and in this case we differ. I do not believe that stating you hate CF means you hate the person that has CF. If a child does feel that way there is work to be done by those parents to change that. We should strive to focus on the positive things life brings us, so saying you hate CF excessively is not healthy. And I definitely know a lot of families that have children with CF, whose parents state they hate it sometimes and those kids are strong, loving, courageous fighters and know the difference between mom or dad hating CF and loving them.

Dead Man Walking

I went to a local high school play this week...Dead Man Walking. You know the one that was made into an Oscar winning movie. Well the movie was based off of a book written by Sister Helen Prejean and the Sister came to the high school to speak an hour before the play started.

What a wonderful woman and funny too. It was so interesting to hear how it all came about for her to visit a man in death row. A man that committed such a horrific crime. She was so honest about all of it...her fears, the mistakes she made, what she learned and what she'd do over again if she could. In the end what she learned most is that a new mission was set before her and that was to save lives. All lives, even of those who people would call a monster because of the crimes they committed. It's a given that she's opposed to any kind of self-inflicting death; she's Catholic and has sworn her love and service to obey God. Thou Shall Not Kill means exactly that, even if it means saving the life of someone who has taken the life of another.

I was amazed by the high school kids acting out this play. It is such a serious theme to portray among an audience of fellow high schoolers and parents of these teens. I cried several times during the play and I couldn't help but think about CF during it. I thought about it during different lines that were spoken from different characters...

Matthew Poncelet: The murderer, he of course represented CF. This cocky, arrogant, MOFO he thought nothing of what he had done by murdering those two young teenagers. Just like CF is within my baby's body. It doesn't give a crap what it's doing to her, all she has to do just to stay alive; AND it certainly doesn't give a rats ass what it does to me, my husband and everyone else that loves her. The pain we go through when she gets sick or hurts is nothing to CF...it could care less.

Earl Delacroix/Clyde and Mary Beth Percy: The parents of the kids that were murdered by Poncelet. They represent us CF parents...fortunately for me I am not in their shoes because I still have my daughter with me, but I know parents that have lost their child to CF and my heart aches like no other when I try to comprehend what they must be feeling. There is NO greater loss than to lose a child and I hate CF for threatening the life of my baby. I hate the fear it has instilled in my life and in her life.

Governor Benedict: The only one with the power to save Poncelet's life but won't due to his political agenda. How often do we face the same in the CF world...with the high expense of the medicines our CFers must take, the meddling insurance companies that won't cover needed prescriptions yet tell us we can take something else even though they see the doctors request for particular meds that are proven to help our kiddos. The lobbyists on Capitol Hill, the FDA, NIH, etc...all involved in their own political agendas. Not 100% of the time, but too often for sure.

Hilton Barber: The lawyer trying to save the life of Poncelet. In a weird way he represented two sides of the CF world: one side represented those people that just don't care about my agenda of fighting to find a cure for CF. These are the people that won't donate one cent towards my fundraising campaigns when I know they have the money to do so. They ignore my letters and emails and year after year, give to other organizations but never to mine. And then the other side represents everyone that has my back and will fight the fight with me. The many that have donated time and money and love and continue to do so campaign after campaign after campaign.

Matthew Poncelet: Yep him again. There's a line he says to the Sister about how awful it is to have been told he will be killed. They tell him it could be a week, a month, a year...then six years go by and the same is said and he waits and and waits never knowing when it will come to be and he states that's the worse of it...the waiting. That part of the play hit me hard because that's how I feel about CF. This awful pit in my gut wondering if this new cough is the one that will send my kid to the hospital, if the fever she's fighting will be the first time she gets IVs administered. It's an awful feeling knowing that CF has entered our world and when least expected send my world crashing down and braking into a million little pieces. And it breaks my heart when my kiddo goes through this. For the most part she handles CF like a trooper, but she has her days too and the pain in my heart to watch her cry and be scared of the 'what ifs' can be unbearable.

Sister Prejean: The woman that wouldn't give up. Despite the anger she faced from the parents that lost their child, she was determined to fight for what she believed to be right. What strength, what loyalty, and filled with so much love! That's the feeling I got when I watched the character of the Sister, it reminded me of the strength I have to stand up against CF and that I WILL continue to stand up against it even when others won't. I will fight my fears as well and not let it consume me and that strength will allow me to teach my children the same. Sure, sometimes fear takes over but I'm strong enough to push it away and let me continue fighting the fight, living the life and mostly I have the strength to appreciate all the good my family and I have.

I suppose some of you reading this may be thinking that I over think things WAY too much, but this is who I am...not that I'm proud of it, it's just the way it is. CF is part of my life even though I'd rather it not be and when least expected, it shows up in a lot of the things I do or in this case it showed up in a high school production of Dead Man Walking...

...who would've thunk?!

Why Not Me?

Weird that I just read a blog from dear, fellow-fibro, Josh Mogren titled Why Me? It's weird because I was just talking about that statement to someone in regards to when I got the news that my daughter was confirmed to have cystic fibrosis. Many people I know would have said "Why me?" during those dark times. It's a legit question for many but I can honestly say that that one did not come up during my dark, gloomy days of dealing with the horrific news, nor has it ever come up.

I suppose it's because I'm such a realist. I mean I always knew that when my hubby and I decided to have kids the chance of having a child born with an ailment was placed in the deck of cards. Which card we'd get we didn't know, but I knew we could get one we didn't want...and of course that's exactly what happened in regards to my baby being born with a defective CFTR gene.

But look at all the other cards that came with that deck...we also got dealt cards of a beauty, intelligence, sassiness, lover of life and so much more. Fast forward 3-1/2 years and I gave birth to our gorgeous son who didn't get dealt the card of CF. No he got the card of Sensory Neural Hearing Loss and along with that card came cards of handsomeness, comedian, creativeness and more.

I also think that I don't ask that question because I know the answer. If I were to ask "Why did I have a child with CF? Why me?", well I know why because I know how. I know the science behind it. I know exactly what it takes to have a child with this disease. I know about genes and the mutations of them and I know that both parents have to be a carrier of one faulty gene and so forth. You see I really am a realist. I wouldn't ask "Why me?" in the form of expecting an answer other than the scientific backing of it. And when I ask "Why not me?", it's not that I wanted to have kids with CF or hearing loss it's just that I understand and know the answer to the "Why me?" question.

Now I will tell you a question I did ask; "How am I going to deal with this?" The first three years of learning that Andrea had CF were the toughest. I didn't know how to deal with it. You see we knew about David's hearing loss first. I was trying to deal with that news when 6-months later we get the other news. And here's the first question I asked when we got the CF news..."Why couldn't it just be her hearing?"

That question shook me to the core. I realized how quickly ones perspective can change. I was so sad that my beautiful son would not be able to hear well and possibly go deaf. I cried and sobbed over that. Then we get the CF news and BAM—a huge change in my perspective. Don't get me wrong, it's not like I was okay with David's hearing loss, it's just that if one had to pick between the two...well let's put it this way, hearing loss is not fatal.

Ironically I find myself comparing a lot of things to others and being grateful of the many things we do not have. That's how I answer the "How am I going to deal with this?" question. The answer is: you just have to! And I know this because in the long run it could be worse. Take some other diseases for example; Tay Sachs—it's a horrible genetic disease. Children born with TS rarely make it past 4-5 years of age. My little cyster is 16 which means I've gotten the joy of having her 10+ years longer than a parent who has a child with TS.

I'll never forget the words my husband uttered to me when I asked him how he handled the CF news so much better than me. Sure, he cried and was very sad about the news but he moved on leaving the anger and sadness behind a lot quicker than I did. He replied, "At this very moment someone is kissing their child goodbye for the very last time and we're not, so I'm happy we're not." Those words were powerful and so true. I just hope they hold to be true for many, many, more years to come...say 70-80 more years to be exact! In fact if anyone is going to kiss someone goodbye for the last time it shall be my kids kissing their parents goodbye after we've lived a long, healthy life watching our kiddos lead a long healthy life too! Why not, right?

At peace...sort of.

Yesterday was my paternal grandmother's birthday.  Yolanda Delfina Ponce de Leon Fernández turned 96 years old! Wow! She's in relatively good health. Lives with my dad in the northern region of Perú...Piura. I was able to Skype with her and chat some. It's harder these days to talk with her. I don't know if she can't hear me well or she doesn't understand what is being said, but none the less it was a nice conversation and the kids and I were able to sing happy birthday to her.

I'm very close to my grandmothers, both of them. This grandmother though I got to know a bit more because I lived with her during my teenage years from age 15 to almost 19. She was the one that taught me how to cook, clean, sew and take care of a man. :)  She always said..."The way to a man's heart is through his stomach", meaning I needed to learn to cook well if I was to find my way into a man's heart. HA...so funny, but I am a pretty mean cook and my man loves that and loves me.

When I left my grandmother and moved back to the States I missed her horribly. I would think about never seeing her again and would just cry. I would think about her dying and my heart would ache and I thought I would never be able to bear it. Then I would think about losing my parents and Niagara Falls would open up and the tears would come gushing out. I was only 19 ya know.

Well fast forward 15 years and I don't cry uncontrollably about losing my grandmothers or parents. Don't get me wrong, if I think about it I do get teary-eyed and sad but I don't feel so horrible like I used to. You see being a parent changes your perspective on life AND being a parent to a kid with CF really, really, REALLY changes your perspective on life. It makes perfect sense that my grandmothers should die first, then my parents, then me, THEN my kids. Life however has thrown a monkey wrench into what we all believe to be the proper cycle of life...the old die first, and lastly the young. Not so much so now. Stupid CF!

I was talking to friends last night about the day we got the call that something was not right with Andrea's health. I recalled all the details from the phone call with the doctor, to calling my husband to break the news, to picking Andrea up from daycare to rush her to the hospital to finally going home and making the dreaded phone calls to family to give them our bad news. A day later I called these friends and I remembered how difficult it was to tell them because we are more than friends...we're family and Andrea loves them like a second set of parents. As I told mama #2 the news I broke down and told her I didn't want to bury my child...of course she broke down too and we had to continue our conversation later when we weren't crying so much. That was 11 years ago. I was telling them last night how my perspective about death has changed from when I was 19 to now and CF plays a huge roll in that and oddly--in a very strange way--it's a good change...

...it's good because I appreciate life so much more. I accept that the old should go before me. My grandmothers are both in their 90s and should die before my child, they should die before their own children, and before me. There's a peace within me about the loss of my grandmas, my mom and my dad and I'm thankful I have that peace. I can't imagine still feeling like I did when I was 19 about their deaths plus deal with my feelings I have today about the possibility of burying my child. SIGH!

BUT It's because of that peace I am able to deal with todays feelings and fears of the what ifs CF has brought into our world and ultimately I'm thankful of that. A little peace is better than none at all and "it is only when we are calm in our hearts that we can spread a little peace ourselves."

Mama Yola and me in Lima, Peru - 2011

CF's final destination...unreachable!

I HATE CF! I really loathe this disease. CF causes health difficulties than can -- when we least expect it -- cause dangerous consequences that leads many in and out of the hospital multiple times a year, after year, after year...and worse case scenario into the grave at a very young age. I know, that's pretty blunt.

CFers work their asses off taking care of themselves, taking several pills a day, doing multiple chest therapy treatments daily, exercising when they don't feel well, visiting with doctors, etc, etc, etc. And all this to ultimately still end up in the hospital, having more complications come on (asthma, CFRD, weakened bones, vitamin deficiency), needing organ transplants, etc., etc., ETC.!

So why work so hard at staying healthy if CF will most likely take charge and mess everything up?

Well, why does one buy car insurance or home insurance? I mean in these cases, we don't know if we'll be in a car accident or that our home may get damaged, but we purchase it just in case something happens. In the case of a CF, we actually know what can possibly occur so the only insurance is to do everything possible to take care of oneself to help elongate the CF road it trudges along. I mean, why shorten that road and allow CF to speed up to it's final destination?

That's right...we must go out of our way to add speed bumps, road blocks, pot holes to the CF highway. If CF speeds up, give it a ticket and a super, high, outrageous fine! Hell, play bumper cars with it and cause it to fall off a cliff to it's ultimate doom! Do whatever it takes to keep CF from causing more damage.

We recently got notice that Andrea cultured pseudomonas again. This is her 4th or 5th time testing positive with it. When I got off the phone with the nurse I was dreading telling Andrea, the news but when I did tell her I was shocked by her response..."YES!" she replied with a bit of excitement. I gave her a puzzled look and she responded, "It's not that I'm happy I have pseudomonas, I'm just happy that we now know the reason behind my months and months of coughing." I tell you, this girl never ceases to amaze me. She is so right-on-target with that kind of attitude.

We do have more than an inkling of what we're up against and what we have to do to 'elongate that CF highway'! So pass me that jack-hammer or bull-dozer, bring on the cement truck and under construction/detour signs...we have our work cut-out for us to make CF take a long-ass time, or better yet, make CF NEVER reach it's final destination!

Who remembers the Wacky Races cartoons? :)

Bittersweet day...

The day had finally arrived, May 11th and we were about to hold the Locks Be Gone 3 event.

This CF fundraising event was started in 2009 when a friend said she'd go bald if she raised $10K by a certain day. Two years later her sister did the same thing. I thought we were done with this event, until one day I jokingly answered my friend Matt's question about whether he should keep his hair long or cut it. I replied, "Why not go bald for a CF cure?" He replied with a yes and we got the ball rolling.

The day had arrived and I knew he was nervous. He was about $1,500 shy of raising the $10K goal he had set, but he was gonna go squeaky bald anyways. He posted this on facebook just minutes before the event was to start...

"We leave here in 45 minutes and I can't deny that I have butterflies about getting my head shaved. But when I get caught up in feeling like that, I remember that this is being done for a reason and for someone we know who NEEDS our help, and then it gets better.

Here's to Andrea and her mom, Susie Rider , who tirelessly fight to raise money for cystic fibrosis research and to turn CF into "Cure Found". Thank you to everyone that has given a donation (there's still time to donate, it doesn't end tonight!), lent support via FB or just gave a thumbs up. All of you were an important part of this 5 month experience.

I can't thank you enough.

Here's one last shot of my aging mug before I get attacked by scissors. The after shot will be forthcoming once the shock has worn off.

Promise not to laugh at my giant, pale, Polish melon once it's free from the constraints of my locks."


I didn't get a chance to see this post until later in the evening. I was out the door and about to get in my car to meet Matt and his family when I get a call from him. The instant I heard his voice I knew something was wrong. He sounded shaken up, almost trembling like. He said "We have a problem...my niece just went into cardiac arrest and we're on our way to the hospital. I don't know what's going to happen." I told him to go be with his niece and sister, that was priority. I could tell he could barely talk. His wife called me soon after and explained things did not look good. I told her not to worry about the event and we'd figure something out. The event was to start at 7 p.m. by 8 p.m. I made an announcement that the event had been postponed due to this emergency. Sadly by 10 p.m. Matt sends me a message that his niece Diana had passed away.

I can't begin to express the deep sadness I felt when I read his message. I have not met Matt's sister Susan. I was looking forward to meeting her during the event. She had posted such funny things on Matt's facebook...just like a good sister, poking fun at him (lovingly). And now she's lost her child?! Yes, she was 20 but I don't care how old our kids are, they will always be our babies. All I keep thinking about is how hard Matt worked at raising all this money to help me, help my child live a longer life; how his sister supported this challenge he took on to help me...and now his niece, her daughter has died?! How wrong...how very, very wrong all of this feels.

Diana had Retts Syndrome. A disease I know only from what I've been reading about since learning of her death. Actually, I looked it up a couple of years ago when I learned about her having it, but because CF consumes me so much, I'd forgotten what it was. Here I am re-learning about it because this young lady has died.

Just thinking about this mama kissing her daughter goodbye for the very last time breaks my heart. The thought of her getting things ready for her burial/cremation(?) literally makes me feel ill. I fight these feelings off and on when it comes to Andrea and her CF, but I've allowed it to consume me right now because from one mama to another I know she's in the greatest pain a parent can possibly ever feel. NO PARENT SHOULD EVER HAVE TO BURY THEIR CHILD, and yet it happens all too often. I HATE IT!!! I HATE IT!!! I HATE IT!!!

May 11th, 2012: the day we were to hold the Locks Be Gone 3 event, my 45th birthday and the day a sweet girl left this earth way, way, way too soon! Rest in peace sweet Diana...Rest. In. Peace. <3

Never give up

This is the time of year that so many of us are fundraising like crazy for the Cystic Fibrosis Foundation's largest fundraiser: Great Strides.

The year Andrea was diagnosed with CF, was the year I started raising funds. It was January of 2001 and by May of that same year, Andrea's angels had raised $5,000. All I did was a letter writing campaign. Each year after that, the amount of money raised has gone up, except for 2010 because I took a break from fundraising. I took an entire year off from raising money, but somehow Andrea's angels still raised a little bit of money. Money was raised from people who, despite my fundraising break, donated a little something anyways. When I found out that people were giving money without me even asking them to do so, I knew immediately that I would not take a year off again from raising money we so desperately need.

When 2011 rolled round, there I was mailing letters requesting donations and thinking of ways to hold events to raise funds as well. I asked everyone I have always asked for money, and I asked new people who weren't even aware I had a child with cystic fibrosis. A friend even shaved her lovely locks off as a fundraiser we call Locks Be Gone. Her sister had done it in 2009 and it raised thousands of dollars, so she wanted to give it a try and sure enough she raised thousands of dollars too. Locks Be Gone 3 takes place this Friday, where a 3rd friend has agreed to shave off his locks...and he too has raised thousands of dollars in honor of Andrea angels!

Every year I try and think of new ways to get people to part with their money. I did a 65 Roses Countdown to Great Strides event, where a picture of Andrea was posted daily on our online donation page where she was wearing something with a rose on it. I had photographers (LandryAnna Designs, ikonix Studio, Anna Jones Photography) assist by donating their time and talent and that one event brought in a few thousand dollars. Another friend helped us by making a short, video documentary (Munoz Productions) of the life of CF and Andrea. That short video clip brought in another couple of thousand dollars for the CFF. I have friends join me online and create their own donation webpage and raise money asking their friends to contribute what they can. I'm just always amazed at everything my friends will do to help the Andrea's angels team be one of the top fundraising teams for the state of Iowa.

This year one friend that has truly amazed me has not raised thousands of dollars. She didn't hold a large fundraising event, and compared to others raised a relatively small amount of money. Yet my amazement has been huge! This friend put me at awe because she actually took on the challenge I asked all my friends take on, to find 10 people to donate $10. In this years letter, I asked everyone to not only donate what they normally do, but to find 10 people to donate $10 each so that when they mailed me their donation it would include an additional $100. Of all my friends to take on this challenge, this friend did so knowing she has never been comfortable asking for donations. Don't get me wrong, this friend has been very supportive since the beginning; she just did it by volunteering to stuff envelopes for the Iowa Chapter, inputting names on a database, overseeing the basket raffle on walk day and of course by making a donation herself. But to get her to ask others for money, that was just not her...until this year. She not only found 10 people to give $10 each, she found more than 10 people and many gave more than the $10 requested. Knowing she went out of her comfort zone to do this has meant the world to me and I just wanted to share it.

The lesson here for anyone fundraising for Great Strides is...to never give up. Continue asking for donations, even if it's the same people that never donate...because you just never know when they'll not only donate, but they may actually raise funds as well. Asking for money is not easy, and sometimes it has a lot to do with timing. There may be times it's not feasible for someone to give, and then there may be times they can give and give more than anticipated.

Our CF kids are doing so well these days because of the Cystic Fibrosis Foundation and all the volunteers from years past, that have raised the monies to bring us some of the best medicines we have that allow our kids to live longer. Every dollar counts towards funding the science that buys us more time, more years with our kiddos.

So don't hold back...keep on asking for donations and keep on thinking of events to raise more money. Bottom line...don't give up and never give up on those you're surrounded by.

I was so happy to get this in the mail, by my one friend who has never liked asking for money. I'm so proud of her!

Arizona Wild Cat...Ronnie Sharpe

Most people who are affected by cystic fibrosis because they have a child with CF or they themselves have CF, know who Ronnie Sharpe is. He's a fellow 'fibro' in the CF community who blogs about a life with CF, blogs about himself and his wife Mandi, and loves to blog about his daughter McKenna. Many of us follow him via facebook, his blog–Run Sickboy Run–and/or through CysticLife.

Ronnie will share and post about just anything, especially anything CF related. He'll post about his thoughts that most times the majority of people agree with. Sometimes he posts things that may actually piss people off...but he never posts those types of topics in order to upset anyone. He's just honest about how he feels and thinks about certain things and he's fine if you don't agree with him.

When our CF clinic approached several CF families for input on what kind of speakers we wanted to hear at our next parent CF education day, Ronnie was at the top of the list, among a few others. Our clinic coordinator contacted him and lucky for us he was able to come to the conference. That conference was held yesterday, in Des Moines, Iowa at Methodist Hospital. 

Prior to the conference Ronnie contacted me and asked if I would do his introduction. I can't tell you how honored I felt that he would ask me to do that. I immediately started writing down what to say. I contacted his wife Mandi to get a little more insight on the man so many of us have grown to admire and respect. I was able to write my intro and keep it simple and short and according to Andrea, I did a pretty decent job. Whew!

Even though I've been following Ronnie through all the social media capabilities we have available to us, I had no clue what he would talk about. What I did know and was not mistaken, is that what he had to say would be something I and many others would gain much from. He did not disappoint! 

When Ronnie says he's blessed to have CF he means it and his talk was all about that. How to not let IT take control of us (parents included!) and that we are the only ones in real control of ourselves. CF is just two letters and nothing more. You may be wondering "what the heck are you getting at", but I'm telling you...when you hear Ronnie explain all of this you will get it. What he said made sense and without giving away how he talked about it, you'll just have to trust me on this one.

Ronnie with my precious 'cyster' - Andrea.

I wrote something down while Ronnie talked, it was "Don't let CF make you feel like you're in a bottomless pit!"  It's easy to allow CF to do this, but we owe it to ourselves to keep CF from taking us there. All this is easier said than done, but if we really want to live life to the fullest for ourselves and our children, we must work hard at filling "the pit" to keep us on top of everything. For me, working on this will be a forever job. I know myself all too well and I know there will be days when CF will drag me down, but I can honestly say I have yet to allow it to keep me there. I always find a way to get back up and continue moving forward. Somedays I move real slow, but other days I'm like the road-runner and to that I say...

...CF get out of my 'effing' way! Beep-beep! :)

It was like a punch in the gut...

Andrea and I went for a long walk today, but it didn't start off well. She didn't want to go and kept making up excuses like: I'm hot, I left my running shoes at school and I'm still coughing too much. But after nagging her enough about it she finally put on some decent shoes and walked out the door with me.

We talked quite a bit about the importance of exercising. I brought up the video I made her and her brother watch, 23-1/2 hours and asked if she learned anything from it. I mentioned Ronnie Sharpe and reminded her of the blog I had her read out loud about the importance of keeping up with exercise. I reminded her of Jerry Cahill and the video of him I made her watch almost a year ago, I was talking and stating facts and blah, blah, blah, when she finally piped up and said...

"I know this sounds bad, but I almost feel like I have to get really sick to know what it feels like and then I'll do more...like exercise."

Yep, my soon-to-be 16 year old spoke the truth and I just about up-chucked my lunch. It truly was a punch in the gut! I couldn't believe what I was hearing. I didn't get mad and start yelling, I calmly told her how very sad that made me feel. But it lead to talking more and more about exercising and reminding her that she has been sick, just not in-the-hospital-sick. I told her to take the sickness she has had and multiply it by 100 or more and asked if she really wanted to go there. There was silence and she never did answer me. What did happen was she started thinking of ways she could get exercise in as a daily routine.

By the time we got to our destination and some more encouragement from me she had come up with 2-3 ways to get in a workout so she can start preparing for the cross-country season that will start at the end of summer. I also told her I would do ANYTHING to help her and that actually made her feel better. She even came up with something we could do together, and that made me feel like the queen of the world!

Now, if we can only make her words become reality...

that'll be for another blog.

Empathy vs. Sympathy

Empathy and sympathy, both are words of emotions but they do mean something entirely different.

I was talking about this to a friend the other day in regards to CF. In my opinion, CF is a disease most everyone can empathize with. Not 100% of what CF can do to one can by empathized but a lot of it can.

Unlike cancer, diabetes, heart disease, etc...unless you've had/have these you really don't know what if feels like or what it takes to live with it. So when people support the American Cancer Society, JDRF or American Heart Association, many do so because of sympathy. They sympathize for Aunt Jane who has cancer or Bobby with juvenile diabetes because they/me have never had cancer or diabetes.

But what about CF? Most of my supporters donate and help out because they sympathize with what Andrea is going through, but if they really thought about what CFers go through, they would realize how much they can actually empathize for them. And that's because...

• Who hasn't gotten a cold where you're congested and having to hack up some nasty mucus.
• If you've had bronchitis or pneumonia you know the feeling of finding it hard to breathe
• Who hasn't felt gassy or bloated from eating certain things
• Raise your hands if you've ever been constipated

These are things many CFers go through. I know Andrea goes through this and unfortunately more so the older she gets. CF is a progressive disease, so no matter how well you take care of yourself, CF will attack and try to set one back. There is where one can sympathize more vs. empathize because unlike a CFer, when we get sick we get better quicker and get sick less often. A CFer however has to follow a certain protocol everyday to keep from getting sick. And when they do get sick, everything gets increased or more gets added to the normal routine. There is no taking a break from CF.

So the next time you write a check for the CFF in honor of someone you know that has CF, remember that not only are you doing so with sympathy, but you're doing so with empathy as well. And perhaps, just perhaps...you'll add just few extra dollars to the total amount being donated. :)

rOllEr CoAsTEr RiDE

Life in general is a roller coaster ride. We've all been there, feeling happy one minute, sad the next, 2 hours later angry, followed by pure joy 15 minutes after that. That's just the way life is, has been and always will be.

But what about that CF roller coaster ride? Oh, how I wish I didn't have to ride it at all. There are times I handle it well. I get on that ride all nervous, but in the end I get through it just fine. However, this ride never ends so other times that ride ends up with my throwing up all over my shoes, or my husband's shoes if I'm lucky.  :)

The life of a parent with a child that has CF is full of ups and downs. The really sucky part is that no matter how well we do with helping our child manage their CF or how well they themselves are with following CF protocol...CF rears it's ugly head up and pushes that roller coaster ride down, down, down and down. Sometimes "down" ultimately means death! UGH, just typing death makes me want to hurl. It's no wonder I want to jump off this ride and go somewhere and do absolutely nothing!

Today I had a major roller coaster ride, but the ride started a couple of weeks ago. First it was a cough here and there, then it was more frequent in the mornings, eventually it became constant and enough so that Andrea herself asked that I take her to CF clinic to get a throat culture done. Now we're waiting for those test results (the nervous ride). Early this morning I helped Andrea with making sure she did all her treatments, took all her meds plus added some homeopathic things for her to do, she looked so puny....no matter though, off to school she went (the worried ride).

Over the noon hour I went to our CF board meeting and the emotional ride continued...listening to the wonderful news of Kalydeco and everything else the CFF has in the drug pipeline (the optimistic ride). I met new people wanting to help the foundation that have no personal connection to CF (the gratitude ride). Later I spoke with a 40+ year old CFer and was feeling so great that she's lived this long; then the ride plummeted as she talked about her two brothers she lost, one 14 years ago, the other just a few months ago (the sad ride). I listened to a CF mom talk about all she's doing to raise funds for Great Strides and how she raised over $24,000 last year alone (the proud ride)! I felt some stress when the meeting continued with the challenges we face to help cover all the research needed to move forward with all the medications the CFF wants to test, to help those with the DF508 mutation. WE NEED MORE MONEY! How are we going to get more (the desperate ride)? As you can see, a lot of emotions going on and the ones I felt during that meeting alone were just within an hour and half time frame...yikes!

As I type this I'm listening to my baby girl cough and expectorate and I'm feeling sad, I'm feeling helpless, I'm feeling angry and I'm feeling like I need to punch something or someone right in the gut! What I'm really feeling though is...I WANT TO GET OFF THIS FUCKING RIDE, but I can't. I can't because Andrea is on it and there is no way I would let her ride it all by herself!

So, I'm ready to take on what ever tomorrow brings. I'll continue with my roller coaster ride hoping I feel fine during it's brief pause, but just in case it's another whirl-wind of emotions...I better--just in case--have a barf bag handy.

The GUILT

Why did I eat the third slice of pizza? UGH, I didn't get my workout in today! I shouldn't have bought that awesome leather handbag. Going out to eat 3 times in one week, what were we thinking? The list goes on...and each one of these things leaves a feeling of guilt.

But what about the CF guilt? Sadly those are many as well.

This is the time of year I struggle with a lot of guilt. It's Great Strides fundraising time and I set our team's goal high...trying to reach $20,000 by walk day - May 19th, 2012. In order to make that goal I have to work hard and I have to ask for a lot of help. There is were the guilt sets in.

• Asking family and friends to donate - GUILT
• Requesting people to give up their precious time to help me/Andrea - GUILT
• Working late hours and not getting enough sleep because I had to get my fundraising letter to the printer - GUILT
• Missing out on time with the kids because there's a CF event to attend - GUILT
• the list goes on and on and on and the feeling sets in - GUILT, GUILT, GUILT

HOWEVER...the guilt I feel isn't strong enough to keep me from raising funds for the CFF. I won't allow it to stop me from helping my daughter live a long and healthy life. Quite honestly, I'm always baffled at CF families that do absolutely nothing in regards to fundraising. I respect their choice, I just don't understand it. CFers are living longer, stronger lives because of the CFF. Since Andrea's diagnosis, life expectancy has risen 11 years. Of course it's not solely because of the CFF but a lot of it is because of them. So I feel I owe it to give back to the foundation that has helped give my child more years of life.

I also know that the feeling of love, generosity and willingness to help from those that do, over powers the feeling of guilt. I know that people help because they WANT to and the feeling I get from that help puts the feeling of guilt at bay.

And so, we're a month a way from walk day and just over $10k shy of reaching the $20k goal...so look out world...the guilt has been pushed aside and I'm coming full-force; ready to continue kicking some CF bootie and helping my baby girl out-live her mama!

http://www.cff.org/Great_Strides/AndreasAngels

It's not just about fundraising...

...it's about promoting awareness too!


For those who know me, they know well that the year Andrea got diagnosed with CF was the year I started fundraising like crazy for the Cystic Fibrosis Foundation (CFF). It was not a difficult decision either. I mean if you look at the CFF's history, their clinical trial pipeline, the advanced years of life expectancy...you know they're a worthy foundation to support. One look at Andrea and you also know...we want her to live as long as possible and hell ya...I'm gonna do all I can to make that happen!


Part of fundraising is promoting awareness as well. Sure, the main reason we fundraise is to receive the much needed funds to continue the expensive research being conducted to help our kiddos live longer, but don't take those NOs for granted. For every NO you have done one huge part of the fundraising effort...you have promoted awareness of the disease.


I love this quote by Nora Roberts, “If you don't go after what you want, you'll never have it. If you don't ask, the answer is always no. If you don't step forward, you're always in the same place.” Sure I rather hear a YES when I ask for donations, but I have learned to be okay with the NO answers because that NO may turn into a YES. Here's a story to back that up...


I visited a new establishment that opened up in my neighborhood. I figured I'd walk in, introduce myself and hit them up to be a sponsor for our Great Strides walk we hold every (and what I fundraise for the most). The owner was pleasant, took a few minutes of her time to listen to me, agreed to look over the paperwork I handed her and said she'd get back to me. Within a couple of days she sends me an email saying she would not support the CFF at this time. Well, 6 months later I get another email from her wanting to know more about Great Strides and how she could help and if I would be okay to talk to some friends of hers. Those friends had just found out their son had CF. She preceded to tell me that if it hadn't been for me she would never had learned what CF was.


You see...don't let those NOs deter you from asking. If you get a NO, say thanks and continue on. And if you get a few (and you most likely will) NOs with attitude that you're making 'them feel obligated', try your hardest not to take it personally. I've had this happen to me a few times over the past 11 years. I don't like hearing people tell me they feel obligated by my request for money, but I've learned to realize that them feeing that way has nothing to do with me. If a person feels obligated to give, it's because they choose to feel that way. I mean, come on...wouldn't it be great to actually have that much power to make people give you money? I sure would love it but that's just not going to happen. Most people will donate, help, and give of themselves because they WANT TO, period, end of story.


So I'll end this by asking:
Would you please support my fight against CF by donating online at:
http://www.cff.org/Great_Strides/AndreasAngels


Thanks!
Love, Susie
:)

"If only people truly understood how one day in the life of a CF kid really is.
They'd probably open their wallets alot more for a cure." ~Murph Hutson

How do you do it?

I thought I'd answer this question I get asked a lot...how do I do all that I do, especially when it comes to raising funds for the Cystic Fibrosis Foundation?

Well in my mind the answer to this question is a question...how do I not do all that I do? But let me back track a little...

I remember the days before knowing Andrea had cystic fibrosis. I had a full-time job with a publishing company, didn't have to worry about being on any school boards, and actually had a part-time job as a PartyLite consultant. Well, all that changed the moment we got the CF news.

But the number one thing that changed drastically was how much time I spent watching TV. And that right there is the real answer to the question, because for those who ask it...if you were to tally up how many hours a week you watch TV, then you'll know that's how many hours I'm working on not only raising funds for the CFF, but promoting awareness of CF too.

Now this is not a blog criticizing anyone for how much TV they watch. Heck, before CF became part of our lives I couldn't wait for Thursday primetime shows. I would eat dinner, paint my nails and plop myself in front of the television for 3 hours. THREE HOURS in just one night! Do you know how much I can get done in 3 hours when it comes to CF or anything else for that matter?

And there you have it. I get a lot more done because I really don't watch that much TV. I've tried. There are shows people talk about that I think, "I'm gonna commit one hour a week to watch just one show." I'll probably do it for 3 weeks tops, then go back to doing other things instead. I just can't help it. There is not one show that can take priority over getting rid of STUPID CF, or helping my son deal with his hearing-loss, or assisting on a school committee to help both my kids with their educational needs. Ya, people do a lot for their kids and also watch TV, but that's just not me. I do watch some, but it's here and there and most likely a lot less than most.

So, to each their own is often said, and my own is...less TV and more...raising money for all to be CF FREE!

And the flood gates were opened

I consider myself a pretty strong woman, a CF mama that takes on challenges everyday and takes them on withholding a lot of emotions so that I can just keep moving forward. However, there are days those emotions just can’t be held back and the dam of tears breaks and comes rushing through with no control. It’s always one gesture (good or bad) that does it and I wonder why did that one act of (in this case kindness) cause my emotions to come hurling at me with such vigor.

Several things have occurred recently…

• My great aunt passed away and her sister–my grandmother–is suffering this loss badly. It just breaks my heart when I learned she fainted at the funeral, couldn’t attend the burial and tells family that she feels all alone now.

• I’ve been getting ready for a week long trip to Merida, Mexico with Andrea’s high school band and have been stressing over getting everything ready, specifically meeting all of Andrea’s CF needs while we travel abroad. There’s so much entailed when traveling internationally when you have CF…I blogged about it before, so I won’t go into details now.

• Today is the birthday of Jena Cassalina. A beautiful girl that earned her angel wings six years ago when she lost her battle against CF. Thinking about her mom and how much she longs to hold her girl saddens me to the core. RIP sweet girl!

But the things that have occurred recently that ultimately left me bawling like a baby have been all the kind gestures by people who truly want to help with our fight against CF.

Donations have been coming in from people I don’t even know, because friends are spreading the word and asking for help. Heck, I have a friend who is willing to shave his long locks in hopes of raising $10K for our cause, and I haven’t a clue who is making all the donations on behalf of him. 

Then, out of the blue a childhood friend of mine posts on facebook—calling all our other elementary school friends—to match her $50 donation she just recently made. She’s even offering to send a gift for each match that is made! Well, that just did it for me today…the tears came gushing through and I couldn’t stop from crying for quite a while. I didn’t ask her to do this. She has decided to go above just donating and actually fundraise too.  WOW!

There have been so many other kind gestures as well, by people attending my fundraisers, donations made from people I’ve just become friends with, and friends that have always been there for me but are taking it up a notch to do a bit more this year. I mean, come on…how lucky can a girl get?! Knowing that people will actually set aside their precious time to help me help my child is the greatest feeling one can have. 

I was talking to another CF mama yesterday about the overwhelming feeling we get when people you wouldn’t expect much from jump in, feet first and volunteer to help in any way they can. Yes, we also have those that we think will help and actually do much to nothing, but I won’t go into that right now. I’ll leave that for another blog or maybe I won’t ever blog about it…it’s just too depressing.  So let’s keep going with the positive…as I was saying, the feeling my friend and I were talking about is a feeling hard to explain. It’s such a powerful emotion that words like thank you, appreciate, gratitude, even forever indebt aren’t enough to thoroughly express how thankful, appreciative, grateful and forever indebted we are. I mean (quoting a friend here),  “how do you thank someone who’s helping save your child’s life?” ~Kelly G.

In a mansion, for 100 days in Hawaii

Soon after Andrea learned that CF is a fatal disease she asked several questions. She was only eight years old and the questions weren't really related to dying from CF. They were more reassuring types of questions, like...

• Everyone has to die someday, right? Yes.
• Don't flowers and trees and animals die too? Yes.
• People die of all different kinds of things, right? Yes

Yes was my response to most of her questions. I thought it was great that she was concentrating on how others will go through death too because that's how life is; whether you have CF or not — you're born, you live, you die. She's always been a pretty optimistic girl even when it comes to death.


But the one question I got that I've come to think about almost daily and that I also answered yes to was...

• When they find a cure for CF can we go to Hawaii for 100 days and live in a mansion? YES!

How could I not say yes to that? And now I find myself wondering..."how am I going to afford 100 days in a Hawaii, let alone in a mansion in Hawaii!?! What a dilemma to have, right? :)


I went to see the movie The Descendants, which is filmed in Hawaii. I really didn't know what the movie was about. It's about all sorts of things actually, but the main focus was about the death of someone (I'm trying not to spoil the movie for anyone, that's why I'm being vague). I cried a lot watching that movie. I mean I cried A LOT...enough that I couldn't keep up with the tears so I just let them roll down my check, into my neck and into the collar of my shirt. And I was thinking, "Why am I crying so hard? Yes, parts of this movie are tear-jerkers, but come on Susie...get a hold of yourself." Then it dawned on me...


I was also crying tears of joy!


Watching the beautiful scenery of Hawaii I kept thinking about that one question Andrea asked...and I couldn't help but weep happliy. That feeling that we could possible have the cure in Andrea's live time is a powerful feeling. A feeling so overwhelming I couldn't help but cry and cry hard.


And so I'm back to wondering — how in the heck am I going to pay for this 100 day trip to Hawaii???

You think this one will do?

Another Year...A Lot of Dollars

I'll start this blog by wishing/hoping/praying that everyone have a very happy new year!

2012 Here We Come...

I do love the start of a new year. It feels to me, just like what it feels after you've "spring cleaned" your house, all clean and refreshed and ready for any announced visitor to stop by. But...

Yep, there's always a BIG BUT...

When CF is part of ones life it puts a damper to the new year —financially. The new year is when health insurance benefits restart. It's time to meet the annual family deductible which in our case is $4,500!

We have our insurance through my husband's job. It really is pretty good insurance (for us). A few years ago the company decided to only offer insurance with a HSA plan (Health Spending Account). You invest money into this account and it can actually grow funds for you IF you rarely go to the doctor. For us that means $0 gets invested into a growing fund plan. Oh I suppose we could put more money into our HSA but money is tight enough as it is with what we set aside for insurance.

For those who rarely go to the doctor and can actually roll over money, it's not a bad deal. But for families with young kids that get sick only once or twice, this type of account can bite. You see, you must first meet your annual deductible before health insurance benefits kick in. Yep, all $4,500 must be met before any benefits kick in. In our case that means we meet the deductible by March at the latest, then anything health related afterwards is paid 100%. It also means we have to set aside $250 a month to make sure we have enough to cover the deductible to begin with. It's only $250 because the company gives families $1,300 to help cover some of the costs. Now this doesn't include the additional $200 we pay monthly just to have insurance. So that's $450 a month for health insurance.

Oh the things we could do with $450 a month. I know people that set aside this kind of money to travel places, or to buy a new car, or remodel a kitchen, or, or, or...I think you get the picture.

As thankful as I am to have decent health insurance, I'm also frustrated by it. I must go to in-network doctors (can't go to just anyone you know/like/and trust without paying through the nose) and if the doctors prescribe something that is costly (ya, hello CF meds) then it must get a pre-authorization from the health insurance company.

PRE-AUTHORIZTION! 

Do you know how this works? I have to deal with this every, single year starting towards the end of the year when a lot of Andrea's CF meds need new prescription orders from the doctors. This is how it works:

1. Doc prescribes med (pulmozyme or TOBI usually is the problem)

2. I take prescription to Pharmacy.

3. Insurance rejects prescription stating it needs a pre-authorization

4. In-house health insurance pharmacy doctor reviews prescription and agrees that a pre-authorization is needed. They want to make sure our doctor didn't think of a different medication we could use. Ya, a different CHEAPER one is what they're looking for.

5.  I call CF clinic and tell them the problem

6. CF clinic calls or faxes necessary paper work needed by insurance.

7. Insurance faxes their paper work to CF clinic for doctor/nurse to sign stating the drug originally prescribed is the only medication that's beneficial for CF needs.

8. Insurance pharmacy doctor looks it over and signs off. Lucky for us it's not denied.

9. Pharmacy is notified and medication is filled.

10. I pick up medication

I try not to get my 'panties all in a bunch' over this, but there have been times I'd rather have a hot poker up my bum, than to deal with health insurance problems.

So, there you have it...my one of many BIG BUTS.

HAPPY NEW YEAR EVERYONE!!!