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!