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. :)