AND THERE YOU HAVE IT

The truth! The whole truth and nothing but the truth.

I don't think I've spoken this out loud to anyone.

I wrote a little on Facebook about fear and how it keeps me going. I fundraise, I ask, I partake, I volunteer, out of fear. Here's what I put on Facebook...

I fear what CF may cause to my baby girl, I fear losing more loved ones to this disease, I fear belonging to that “club” of mother’s grieving the loss of their child;

but what I fear the most is…

Not doing my part for when we find THE CURE! With the love, support and on-going donations from people like you I know we will find a CF cure and not being part of that, not being able to boast about all your help causes me the most fear. 

Of these fears, I left the biggest-fear-of-all out...

What I fear the most (besides the fear of losing my child — that ones a given), is raising the most funds ever because I've lost my child.

There. I said it (or typed it), I put it out for all to know. I want to raise millions of dollars for the Cystic Fibrosis Foundation so they can find a cure for CF and I fear raising the most amount of dollars only after I've lost what I'm fighting to keep, my baby girl.

I know, I know–this sounds awful–and believe me, I keep these feelings tucked deep within – for the most part; AND it DOES NOT diminish the GRATITUDE I have for all that YOU DO AND HAVE DONE. I'm just sharing and being honest because I've seen it time and time again...families trying to raise funds and do a decent job, but it's only once their child has died that they get the most donations. SIGH!

Don't get me wrong, I get ecstatic about raising our $20,000+. Without the help, love and support from our family and friends (YOU) we would barely raise a few thousand.  I just don't ever want to be in that situation that our Andrea's angels team raises $250,000 because Andrea's earned her angel wings.

Does this make sense? Sadly, I think it does.

Empathy Overload

I shared on Facebook that I’ve had a bit of a sit back in regards to how I’m handling CF. It seems to happen any time I get sick. I’m coughing, hacking, expectorating and wishing it were done and over with. That’s when the sadness sets in.

I went to the doctor to get things checked out and was given a shot to calm down all the inflammation in my throat and I’m starting to feel better physically. Emotionally, I’m a wreck.

You see, when I’m sick all I can do is look forward to getting better. Then I think about my Andrea and my emotions run wild. I feel sad that she has to do so much to keep her lungs healthy EVERY SINGLE DAY. I moan during my two-week ordeal and then get better. CFers don’t get that luxury. They do all this stuff to stay better, but eventually get worse. How cruel is that? Way cruel!

I feel proud of my girl….her fight against this ugly disease and she does it with such grace. I sat in her room the other day and told her this, with tears running down my face. I told her how pathetic I felt that I complain about my colds, when she goes months with out a complaint about all the CF stuff she has to do. Of course, my sweet angel, consoled me and told me all would be fine. I cried more.

I work hard to handle CF in the most positive, productive way. I wake up with feelings of gratitude for all that we have and that I still have my girlie despite the death sentence CF has bestowed. I don’t allow that sentence to hang over my head. It wouldn’t be living if I did, but some days are harder than others and I falter for a moment (or two).

When I falter due to empathy overload, I start to feel sorry for myself. Yes,  I’m feeling sad with thoughts of all Andrea has to endure, but I’m also so overly emotional that I start feeling sad about how it all affects me. That pesky ego sneaks in and I don’t handle that well. I don’t want to feel sorry for me.

So family and friends came to the rescue. I asked for a pick-me-up and got it with wonderful posts, texts and messages sent my way. I got some pretty-funny, dirty jokes that truly made me laugh out loud. 

I asked for some help and I got it. I’m feeling better and ready for the new week. Thanks to all the lovies in my life that helped me snap out of my funk. You are ALL unbelievably WONDERFUL. Thank you!

Oh and FUCF!

TMI? Perhaps...

I get asked often, "How do you manage it all?", in regards to having a child with cystic fibrosis and another child born with hearing loss. And my answer is always, "How does one not."

I mean, to me, there is no other option but to handle the situation that life has brought you in the best possible way you can. The other option is to give up, pity myself and do nothing; and if you know me that was never going to be the option.

What I haven't told many people is the road it took to stay proactive when given horrible news like, "Mrs. Rider, I'm sorry to have to tell you but your son failed his hearing test and we have confirmed he has a 65% hearing loss in both ears." That call was difficult, but six months later I got another call, "Mrs. Rider, I need you and your husband to get your daughter and come to the hospital right away...tests confirm she has cystic fibrosis." Tears came gushing out after both phone calls but after the second phone call these words came out of my mouth, "Why couldn't it be just her hearing". How ones perspective changes depending on the gravity of the situation. Hearing loss sucks, but it's not fatal, so CF sucks more.

Back to the road it took to stay proactive...

When you're thrown into the world of fearing the loss of your child, the path one takes to become a survivor is different for everyone. For me it went sort of like this...

1. Cry, cry, cry and cry.

2. Wail!

3. Research, research, research.

4. Weight loss/weight gain

5. Doctor appoints galore = STRESS!

6. Cried the first time my husband and I made love after getting the horrific news. I felt like I shouldn't be allowed to feel any kind of joy.

7. Anger towards family and friends who tried helping by saying or doing things they shouldn't have.

8. Loss of friendships because I became more needy.

9. Depression.

10. Took my frustrations out on my family.

11. Fundraise for a cure.

12. Called doctor, admitted I needed some help. Was put on Wellbutrin. AWESOME!

13. Educate myself by attending CF conferences, and seminars on the deaf and hard of hearing.

14. Advocate for my kids and educate others about CF and the need for funds.

15. Join social media and made new friends. Both in the CF world and HOH world. (HOH = Hard of Hearing)

16. Read A New Earth: Awakening to Your Life's Purpose. This impacted the way I look at life tremendously.

17. Concentrate on not complaining.

18. Enjoy life NOW, TODAY!

19. Look for the beauty in all.

20. BE THANKFUL!

Of course it didn't go exactly like this in just 20 steps, but I hope you get the picture...that I hit the floor and fell pretty hard, but was able to get up and move forward, because I didn't give up. Steps 1 through 10 lasted about 3 years. It's no wonder I lost some friends. But when I finally got up and was stronger great things happened.

Do I fall now? Sure I do. I'm only human and will make mistakes, but I can honestly say I recover quicker from my falls and I own up to my mistakes immediately...

and I feel pretty damn proud about that.

Being honest to yourself, is the only way to be.

I can tell you with 100% certainty that aging for me has given me the strength to do what I know is best for ME so that ultimately I can be the best for YOU, anyone and everyone in my life with top priority being my family.

A few years ago I made the decision to take a year off from Great Strides fundraising. It took 3 years of thinking about it, crying about it, bugging my husband about it before I actually did it. The guilt I had, feeling like a failure of a parent if I didn't fundraise, kept me from doing what I needed to do for me, in order to do what's best for my family.

I was feeling worn-down, stressed, overwhelmed, burdened and I felt that if I didn't take a break, I was going to break. So in 2009 I announced that I would not do any sort of fundraising for the 2010 year. Most everyone understood and applauded me for doing what I needed to do for ME. Who did not like it was the Director of the Iowa CFF Chapter but she quickly got over it.

Well, the time has come for me to be completely honest to myself again…I met with our Iowa Director (different from the 2009 year) and announced that I will be downsizing my fundraising efforts for next year's Great Strides walk. She took the news well, after I had to remind her to breathe. :) I knew that with the walk being over they will soon start working on next year's budget, so I wanted her to know that she may not be able to count on the $20K Andrea's angels tends to bring in every year.

I will still write a campaign letter asking for donations, so I'm not going to do nothing; but the reason for doing less is many…

• I have to prepare for a graduation open house
• Help Andrea if needed with scholarship opportunities
• Get my taxes done early so we can apply for the FAFSA
• I'm on the post-prom fundraising committee
• I'm on the high school band fundraising committee for the band Spring break trip to Italy
• I'm on a school board, assisting with fundraising to help teachers with mini grants, Hall Fame Inductees and school improvement projects
• I'm a member of the Facility Advisory Committee for our school system
• I have my son's needs to look after too

The list could go on and on, but I think you get the picture. Really, with Andrea's graduation I just have more on my plate that I'm willing to handle. I'm being honest and letting everyone know that I will downsize my role with CFF fundraising for next year.

I have more to say about this matter, but will wait to do so at a later time. For now I just wanted everyone to know since I made it official with our CFF office and a couple of other CF mamas I know. 

In the meantime, if this triggers you to want to increase your fundraising efforts…go for it. But remember, be honest with yourself and do what you can if you're able.

Peace and love,

Susie

Jena Strong

Most people within in the CF community know who Margarete Cassalina is. If you don’t, then please click on her name so you can find out. Trust me…you won’t regret it!

I “met” Margarete via email a few years ago. Well, on May 24, 2010 to be exact. I know this because I saved the email I sent her, along with her reply.

I was reading her book Beyond Breathing. It’s really her diary. She tells a bit about her past and how she met her husband, the love of her life, Marc. She tells about the most beautiful time in her life, the birth of her children; Eric and Jena, also the loves of her life! She shares about both the kids’ struggles with CF and she tells all about the most horrific moment of her life, losing Jena from complications of CF. FUCF!

While I was reading her book I noticed so many similarities between her baby girl and my baby girl. One night, one more similarity stuck out so much that I had to email her; and boy, am I glad I did.

Through the awesomeness of email and social media, Margarete and I struck up a friendship. We keep track of each other via Facebook and the occasional emails or text messages. We finally met face to face in January of this year (2013) when us crazy CF mama’s decided to not only just meet, but spend 4 days together in her condo in Florida. Fortunately we hit if off and had a wonderful 4 days. Well, I know I did. Thanks again Margarete! I LOVED EVERY MINTUE OF IT!

We’re both busy ladies, but she is way busier than me so I actually don't like to interrupt her. But boy did I interrupt her big time the other day. I didn’t want to at first. The guilt inside of me was strong, but my sadness was stronger and so I texted her…“I have allowed fear to set in me today…please add an extra prayer for my friend Stephanie…Trying my hardest to stay hopeful and fighting this fear that’s bringing me down.” Stephanie is a 27 year old CF friend that I met when she was 17, the same age that my Andrea is now, and she is not doing well. Needs a double-lung transplant and needs it soon. The thought of losing her just did me in and I felt fearful, sad and guilty.

I felt guilt because here I am texting a CF mama who has lost her child to stupid CF and I have not. Feeling guilty, that I’m not strong like she is and broke down by bothering her with MY feelings of fear. But that’s what happened. I allowed fear to take control so much so that I needed help getting out of that funk; and who better to get me out of that funk than Margarete?

Margarete knows what it is to go beyond breathing. Losing your baby, no matter how--but in this case it was through CF--puts one in a state that you have to go beyond breathing in order to survive. Margarete has fallen as hard as a mom can fall…for losing a child is the greatest pain, the greatest form of suffering any human being can go through and survive; and man oh man has she survived!

She told me to call her, so I did, and in less than 15 minutes she listened, I broke-down and bawled, she gave wonderful advice and we laughed and laughed and laughed. It was truly a Strong Jena Moment.  You see, she is as strong as she is because of Jena and because of Eric. But I believe it is Jena’s spiritual strength that has made Margarete the strong, kick-ass woman that she is today. I don’t know many women who have lost a child to CF that would go out of their way to help another CF mama through her moment of despair the way Margarete did for me. I am so thankful to have her in my life!

Jena the fighter. Always was, always will be! She's Jena Strong.

Now, does this mean I should call her every time I’m feeling down? Or, that I should call her because I'm feeling fearful? NO! But should I or you need someone, don’t be afraid to call your friends and loved ones for some ‘lifting up’.

Margarete’s last piece of advice to me…

“We're CF Mamas ..."ain't nobody got time for that!"... back in the game girl!”

And my response…

Yes Ma’am!

37

Our CFF office used a quote by Andrea that was sent out via an email blast. They asked a question, "What's your CF dream?" and her response was …

"I want 37 to be JUST a number."

It just makes me sad to think that my child has that median life expectancy number dangling over her head, BUT...

THANKFULLY it does not keep her from doing anything and everything she wants to do. It doesn't make her stay at home all mopey and depressed. It doesn't make her come up with excuses for not doing something because she has CF. On the contrary…she lives a life any normal 16 year old should live. She rarely complains about CF related things and if anything it's made her less tolerable to the typical complaining many teenagers do at her age.

37 is the median life expectancy of someone who has CF. Does this mean that the day she turns 37 she'll die? HELL NO! It's a number the CFF has come up with by taking the average of all the 30,000 people who have CF and--I'm sure some other statistically analysis numbers--to come up with 37. Many live way past 37, thanks to modern medicine, rigorous treatments, exercise and eating well. However, many die before 37 and thus the number looms over our heads, over my child's head.

It's work to not let that looming number take control in our lives. Yes it's there, yes we think about it and NO we will not let it break us!

To try and make light of this number, here's some 37 numbers that are pretty cool…

There's always a #37 race car in Nascar… speeding around the track, while people cheer on. Nothing wrong with that.

How about driving along Interstate 37… it takes you from San Antonio to Corpus Christi where people have fun during Spring Break, enjoying the beach and nightlife. Nothing wrong with that.

NOW That's What I Call Music #37… songs by great artists that make you want to dance. Nothing wrong with that.

Nescafe Blend 37… Dark roasted coffee to a rich nuttiness with hints of toasted cereal and a smooth, malty caramel finish. Nothing wrong with that.

Right now 37 is the median age of life expectancy for someone who has CF, but that can change when we least expect it to 38, 40, 52, 68, 84, 90+! It WILL change because we are working hard at changing it and we'll continue working hard to make those higher numbers a reality in the life of a CFer! We will not stop fighting until we make CF stand for Cure Found!

Now, I'm thinking, it would be fun to drive down Interstate 37, in Nascar #37, listening to NOW #37, while sippin' on some Nescafe Blend 37. :)

Ya, I'm a dork!

Come on…be a little selfish!

Everyone is a little selfish every once in a while. Sure, some are a lot more than others, but the way I see it everyone, absolutely everyone, is a tad selfish because even when doing a selfless act…you're doing it because it feels good. Yes, you're doing it because you want to help and give back and do for others, but you do it because it makes you feel good to do it. Whatever "IT" is, you do it because it feels good, otherwise you wouldn't do it.

Selfish is a word people dislike because many believe being selfish means you don't care for anyone but yourself. But the only time being selfish is bad is when one does bad things to others--or even themselves--in order to feel good. Being selfish by doing good is not bad! So where am I going with this?

May is CF awareness month and Great Strides season. It's the time of the year where I put on a bigger selfish cap and start spreading the word about CF, asking for money for a CF cure, asking for your time during fundraisers, asking for you to ask others, to ask others, to ask others to do the same. I do it in the name of Andrea, my first born, born with CF. I do it in the name of all CFers. I do it in memory of those we've lost to CF. I do it because we're so close to helping thousands live longer, healthier lives. I do it because others are doing it. I do it because it makes me feel good to do IT! {{BREATHE SUSIE}} I do it because I NEED TO DO IT!

May is also the month of my birthday and Mother's Day. I'm going to be very selfish right now and tell you what I want you to give me for my birthday or Mother's Day or for both days. However, I need you to do this by May 14th. How's that for putting pressure onto my selfish request?

The bureaucrats in DC (via the Social Security Administration - SSA) want to control whether someone with cystic fibrosis is eligible for disability benefits by bureaucratic standards, not by CF doctor's standards. If left unchanged, the proposed rule would keep people with CF who cannot work from accessing these critical resources...meaning life saving medicine and care they need to LIVE.

The SSA recently proposed changes that could make it more difficult for people with CF to receive disability benefits. Please note that these are proposed changes—not final. And this is where my gift request comes in…

Your advocacy efforts may help prevent the SSA's proposal from taking effect. Would you please click the link below and take 25 seconds (that's how long it took me) of your day to fill out the pre-filled out form to send to your State's Senator asking them to reconsider this revision?

http://hq-nu.salsalabs.com/o/50674/p/dia/action3/common/public/index.sjs?action_KEY=7993

And if you want to take more time, click here to learn more about the CF Foundation’s work on this issue.

That's it. That's all I want for my birthday or Mother's Day or both. You can do it more than once too. :) Oh, I'm being extra selfish now, asking you to do this twice! 

Seriously though, having you take time to do this would mean the world to me but it would mean more to those with cystic fibrosis. I hope you'll consider my request. 

As always...

Forever in your debt and with much love,

~ Susie

CF mama desperate for a cure!

It's how it was and how it is...

The no holding back on how I use to feel.

It took 3 years for me to get out of my CF-induced-coma-funk I was in after learning that my first-born, Andrea, had cystic fibrosis. Three years of crying, of feeling depressed and anxious, feeling desperate and angry all mixed into one huge giant ball of emotions. The emotions weren't good. I tried my best to not let it consume everything in my life. I still had to be a mom, a wife, a sister, a daughter, a friend and carry-on despite not wanting to sometimes.

I wish it hadn't taken that long for me to refocus on all the wonderful beauty that surrounded me and continues to surround me everyday since. But I am human and make mistakes and thankfully learn from them. Does that mean I won't make any more mistakes? Hell no. I have and I will but luckily they've been less and hope they continue to be far and few in-between from now on.

The crying came from all my fears. Fear of Andrea getting sick, fear of me not being able to keep up with the demands CF brings, fear of letting everyone around me down because I was letting myself down, and the worst fear…fear of burying my child AND fear of dying before her and not being there to take care of her.

Yep…that's how my brained worked. I would think "how could I survive planning a funeral for my baby" and then at the same time think, "I should be the one to plan the funeral for my baby". I mean, I'm mama...I'm the one that kisses the boo-boos, wipes away the tears, cleans the scrapes and cuts and bandages them all up. So I should be the one to take care of her should CF gain control and take her away from us way before her time. UGH…I hated feeling like that.

I can honestly say I haven't felt those fears in a long time. They creep up every once in a while but they're pretty self contained. I do cry more than what I think I should. I learn of parents losing their child to CF and I cry. I see friends living despite having lost their child to CF and at times it makes me cry. Recently, I know of a woman that if she doesn't receive new lungs soon, will die and leave behind a husband that dotes on her and a daughter who was a miracle for them both…and I cry. #PrayforTricia

I work hard at not letting the bad things in life consume me. Sometimes that means I stop reading about CFers not doing well, I may even "hide" them from my Facebook thread just to give myself a break from all the heartache. I eventually "unhide" them to then "hide" them again should I feel my emotions are starting to get too worked up. I do whatever it takes to take care of me so I can take care of everyone I love.

It's Great Strides fundraising season right now--and thanks to all the social media applications we have today--many of us take advantage of it to spread awareness with hopes of getting a few more dollars towards funding the research that will save my daughter's life. That will save the lives of the 70,000 CFers world wide. It also means there are many more notices of those not doing well due to CF complications, but I won't be "hiding" anyone right now. I'm feeling determined to continue my CF crusade to end it's miserable existence and I will do it in honor of Andrea, in honor of all CFers healthy and not-so-healthy and in memory of those who's spirit is still with us guiding us to continue the fight. The fight that will make CF stand for Cure Found!

Who's with me?!

You?

I sure hope so! :)

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

Who Says We're Too Old to Play with Puppets?

Another CF Education day in Des Moines, Iowa came and went and another year with a fabulous guest speaker! Josh Mogren of Welcome to Joshland had the crowd's full attention. He brought his buddy, Moganko too!

Talk about hearing a man speak from his heart. Josh is someone who will tell it like it is and if it happens to be something you may not like, he'll let you know up front that it may be something you don't like and that he means no disrespect.

RESPECT, that actually should be Josh's middle name.

Josh will respectfully let you know what he likes and dislikes. He will respectfully tell you about his parents -- their ups and downs -- and with a heavy heart respectfully tell you how he honors and remembers his sister Angie who died from CF complications at the tender age of 16. He respectfully broached on the new 6 foot rule infectious control policy and honored it that day, and we honored it as well. But that hasn't always been the case...

You see, Andrea was so looking forward to going to our CF Ed day to see and hear Josh. But because of the new CFF guidelines Andrea was asked not to attend. Boy was she not happy about that. We actually were headed to Minnesota the week the new policy guidelines were released and what did we do? We met with Josh while we were in his home State and had lunch together. I brought a tape measure to make sure they sat 6 feet apart, but it fell short by 1-foot. Oh well, as Andrea put it…YOLO!

Shhh! Don't tell anyone they sat only 5 feet away from each other. :)

So what did we do come conference day? Well, we couldn't break the rule so we improvised. I brought my iPad to the conference and Skyped Andrea so she could see/hear Josh that way and it worked out perfectly.

Andrea is clapping after listening to Josh sing a CF tune. 

Where there's a will, there's a way and we made sure Andrea got to hear Josh despite the new CF guidelines. She learned a lot. While Josh spoke Andrea would text me me things like, "I can relate to a lot of things." She even asked him a question, which he respectfully answered. It was a great way to have my CFer "there" to listen and learn from another CFer.

If you're a parent with a child that has CF and your CF clinic center offers family education days, I urge you to recommend Josh to be a guest speaker. Trust me, you will not be disappointed!

Later that same evening, Josh and I were able to hang out. We hoped more CF parents would join us, but alas it was just him and I and we had a blast. I took him to a karaoke lounge and was entertained by his amazing singing. I personally wimped out and did not sing!

The most awesome thing about Josh is his beautiful, kind heart. Even Andrea told me, "Josh really loves us CF kids." I reassured her that she was absolutely correct! I'm honored to call him my friend!

Love ya Joshy! :)

Feelings

I'm sad today...

A tad emotional...

Shedding some tears of joy...

Feeling a little self pity...

I don't like feeling self pity!

I've mentioned this in other blogs...I blog to save me money on visiting a therapist.

So, why am I sad, emotional, tearful with joy and feeling self pity? Well, there's so much going on right now that is affecting me to feel this way. Let me get the sad one out of the way.

I unintentionally hurt a friend's feelings. She feels taken advantage of and used and although I did not set out to hurt her, her feelings were legit. I apologized profusely, but she has decided to not only not accept my apologies, she purposefully hurt me back by doing something I would ground my daughter if she did to one of her friends. The sad thing about all of this is I'm so worried about this friend. She has never in the 16 years we've been pals done anything like what she did. On the contrary, she has been a very loving, giving friend...so I'm sad that my forgetfulness and just plain stupidity has most likely ended this friendship. :'(

The emotional...

It's Great Strides season and I always get emotional during this time of year. It's a lot of work to fundraise on top of everything else that still needs to get done. It's an emotional roller coaster ride, as I get emotional over acquaintances, family and friends going out of their way to support us, support Andrea. They shower us with love by donating money, their time, their talent. It's just a feeling that puts me at awe; and although I know they're doing it because they want to and not for anything in return, I just feel like I could never repay them for their generosity.

I have some family health concerns going on that I can't help with because they are so far away. I always get very emotional when I can't assist my loved ones that have done so much for me over the years.

I scolded Andrea today for staying up way too late and not doing her morning treatments 100% as they should be done. This is the biggest emotional setter for me. I end up feeling guilty for scolding a kid—that in comparison to a lot of kids her age—she's doing a fabulous job in taking care of herself. AND I feel super guilty because I scold her about her health regimen while I'm not doing the best I can for myself. Look who's calling the kettle black. UGH!

Tears of joy...

Yesterday was a huge day in the CF world as Tommy Danger, a CF supporter extraordinaire, finished his goal of running across the USA in order to promote CF awareness via his More Than Just Miles campaign. This young man ran 3200 miles across 16 States, finishing yesterday by running 100 miles in 24 hours to reach the finish line in Daytona, FL. Some of my CF mama friends were there (insert jealous feelings here) and were kind to share photos and videos of the event. As I watched Tommy arrive at his final destination, I couldn't help but cry. I mean, come on...Tommy doesn't have a child with CF. His siblings don't have it, nor cousins, uncles or aunts. His best friends have a child who has CF and this is why he did this and...he's not done. He wants to raise ONE MILLION dollars by doing other extraordinary things over the next few years! He's doing this in honor of little Ethan and all CFers world wide and in memory of those beautiful angels we've lost along the way.

My sister is having a fundraiser today that I wanted so badly to be there for. It's a smaller type of event but it's being done with so much love and excitement. I talked with her just a bit ago while the party was going on and she sounded so happy. She set her Great Strides fundraising goal to $2,000 this year. I know how much work is entailed in fundraising, and she's a single mom! How could I not shed tears of joy over all she does for her "peanut"; aka Andrea. :)

Self pity...

For the past 14 months I've been dealing with foot pain on my right heel area. After months of seeing doctors and being diagnosed with several things, the main one being chronic plantar fasciitis, a third doctor discovered that I also had a stress fracture on the heel. I've worn a boot for 8 weeks, met with therapists, had treatments done with no alleviation, and now am on crutches and just finally starting to feel like I may be on the mend. Maybe. And the self pity has just recently set in and I hate it. I feel so nervy for feeling this way when others, like my daughter, endure their ailments everyday of the year, with minimal complaints. I'm working hard at ending this feeling. I have great days and not so great days.

So there you have it! My reasons for feeling how I've been feeling. I'm sure I could write more, but I won't. Some have actually heard me express some of these feelings out-loud and I thank you for listening and sharing your advice with me. I ultimately know I'm a strong person and will be fine because I'm surrounded by so much love; and nothing but great things can come when one is showered with love!

Get over it - there's too much love going around!

CF Love x 3

Behind every great man, is one 'effing' strong and great woman!

I'm a tad late blogging about my January experience in Northern Florida. Via Facebook most of my friends learned that I traveled there when I was invited by a CF mama I had never met. Yep, I flew from Des Moines, Iowa to Orlando, Florida to spend four days with a women I had never, ever, met. Let me back track a little…

In May 2010 I purchased and read a book titled Beyond Breathing: A Journey of Love, Grief and Rebuilding. This book was written by Margarete Cassalina, about her journey in the world of cystic fibrosis. Both her children were born with CF and the book chronicles the life and struggles of her daughter Jena who "moved up" on December 4th, 2006. Her son Eric who also has CF has had some challenges of his own but he's alive and living life to the fullest! Thank you!

While reading the book, I couldn't help but notice similarities between Jena and my baby girl, Andrea. One particular night, while reading and sobbing and putting the book down, then picking it up again I came to the chapter that mentioned Jena's love of Peppermint Patties. Well that was enough to make me get out of bed, grab my camera, take a photo and email Margarete. That was the start of our cyber-friendship.

This is the picture I took at 1:00 a.m. then emailed to Margarete. Yep, my baby girl loves Peppermint Patties too!

Over the past three years, I've been trying to get Margarete to come to Iowa to speak at our Family CF Education Day. We thought that moment had come, but because of some 'glitches' the plans fell through. So, Margarete invited me to come visit her in sunny Florida. I purchased my ticket and a month later I was flying to meet her. I was a little nervous. The day of my flight I started thinking… What am I doing? What if she doesn't like me? What if we don't get a long? If we don't "hit it off" what are we going to do? I would never allow my children to travel to another State to meet up with someone they met only online…that's just crazy! Yes, we're strong, great and effing, CraZy CF mamas!

Needless to say, the four days were fabulous. Margarete and I talked and talked and talked. We enjoyed time on the beach, eating great meals and drinking some delightful Rum Runners and delicious red wine. We had some deep, serious conversations but neither one of shed a tear the entire time we were together. At least not in front of each other.

First day with Margarete, enjoying a lovely margarita and mojito in Downtown Disney. 

Being the gracious host that Margarete is, she planned a couple of days for us to meet two other women. On my second night there we met CF mama Krista Keller for dinner. We had a wonderful evening of getting to know each other, laughing, speaking seriously about CF concerns, and fully understanding each other…like we've known each other for a while, not just a couple of hours. We could tell each other some of our woes without any fear of being pitied. We could make fun of CF in a way only another CF mama would get and know we wouldn't be offended. We could have talked for hours more, but it got late and Krista headed back home to her family: a hubby and four children. Two girls and two boys - both of her boys have CF and are doing well. Some concerns here and there, but overall well. Thank you!

Three CF mamas chatting, eating and drinking, not the night away but we could have!

On my third day there, we drove to Clearwater Beach and met a fellow cyster, Jessika Grenville for coffee. Talk about a spunky, full-of-life, full-of-love, doll! Margarete had tried to meet with Jessika a year prior, and found out that Jessika's no-show was due to her getting so sick she was hospitalized. True to fashion, like many adult cysters and fibros, it was Jessika apologizing to Margarete for "standing her up". Can you believe it? This woman was so sick, she had to be admitted into the hospital, yet she's apologizing for not showing up for coffee! It's just one of many examples of how extraordinary CFers are. Lucky for me (and Margarete) this time Jessika did show up and we had a great time catching up as well. Learning about her major health struggles and how she bettered herself with the help of her hubby, healthy eating and plenty of exercise. Thank you!

At Starbucks in Clearwater Beach. Two CF mama's embracing and learning from the lovely Jessika Grenville.

Needless to say I had a wonderful time. I learned so much from all three of these women. I'm a broken record when it comes to this, but I always say the most awesome thing about CF is the people we get to meet and grow to love. My heart was filled with love threefold. It was so wonderful to be around these ladies…to laugh with, share our joys, our fears, our DESIRE to find a CF cure! I really hope this isn't the last time I see them. I'll be working at getting Margarete to Iowa to speak to all the beautiful CF families here during our CF Ed Day. And perhaps I'll see Jessika this year, as her husband and her and their dog take off for their USA journey in a couple of months and plan to pass through Iowa. Now, if I could only get Krista here…maybe I can convince her to bring her family to tour Iowa State University, since her hubby actually is a Cyclone grad!

Left to right: Leighton & Jessika Grenville, Mark & Margarete Cassalina, Rob & Krista Keller

Behind every EFFING strong and great woman, 

is an EFFING great man!

“Yes! Yes! I'll say it! She has a BOYFRIEND!”

My baby girl has a boyfriend and by the looks of it, he's here to stay (for a while at least).

I really never gave the boyfriend thing much thought. When most of Andrea's friends were having their little boyfriend flings in elementary school, Andrea could care less. When they continued in middle school, she still had no desire to "go there". Then high school came along and for the first few months all was good, until the day came when Andrea said a boy had asked her to go to the movies with him.

She knew our rule of no dates until 16 (she was only 14) and by that we meant NO one-on-one, out alone with no one but her and him. So I told her she could go to the movies with him if a group of friends went together. Well in the end nothing transpired, no group movies, no boyfriend...we dodged that bullet.

At age 15 and starting her sophomore year she meets a boy on the cross country team. All was good, neither one noticing the other until one day after a meet…

…the sun was shining through the trees and as the boy looked her way he saw this girl standing there looking so beautiful while the rays of sunshine hit her face and hair and cupid's arrow struck and hit him hard!

These are his words not mine. Okay, the cupid's arrow is mine but the rest came from him. :)

This started the days, weeks and months of Romeo persuading Juliette to go out with him. Of course these days that persuasion came in the form of texting and Facebook messaging. After almost 6 months and Andrea finally admitting to herself and us AND him that she did like him, we said he could come over. He came over and hung out and asked if she could go to dinner with him and his family. We allowed it since they'd be in a group. And that's the official day they became boyfriend and girlfriend: 2/29/12.

First week together.

The no dating rule was still in place. He would come to our house, or she would hang out at his house but no official one-on-one date was allowed until she turned 16. This meant they had to wait 5 months for that first official date and wait they did.

The official first date. Not gonna lie…my heart was in my throat as they left together in his yellow, sports car!

It's been a blast getting to know Christopher. He comes from a large family, mostly boys too. Having an 18 year old boy around the house has been entertaining to say the least.

So how does this all work with CF in the picture. It's been eye opening for sure. I worried about how he would react when finding out more about CF and mostly how he would react about the average life expectancy. I actually was nervous about it. One of the first things I found out is that when he told his mother about Andrea having CF she said, "you know that never goes away, don't you?" I'm paraphrasing but you get the jest. He told her not to worry about it. But how could she not. Her child finally has a girlfriend and she has CF. I'm sure I'd worry some too.

I also found out his father smokes. So that lead to the conversation I had to have with the dad. I'm always nervous when talking to people who smoke, letting them know that Andrea can not be around smoke at all. I worry they'll take offense but all was good. He understood and I remind Chris and Andrea frequently that she is to stay away if there is smoking done around her.

The first time Andrea had CF clinic--with Chris in the picture-- he asked if he could go. I said no, that it was too soon. They'd only been together 2 months. He'd ask again and again and finally he did go to an appointment. It was to learn about how a bronchoscopy is performed and how medications work and to meet the new doctor our clinic had hired. Chris did a great job listening and learning. It was a long meeting and at one point he started to dose off, but when I quizzed him on what he learned he repeated most everything perfectly. What a good boy!

Chris at Andrea's first bronchoscope procedure talking to the anesthesiologist.

I did talk seriously to both of them about proper hygiene…since being in a relationship means kissing (yuck!). Mostly I told him that he is not to come around if he feels ill or has a cold. He must wash his hands frequently and break the habit of biting his nails. It's those little things most people don't think about but it's important, especially when around a CFer. He's done a great job keeping up with the "little extras" that come with dating a CFer.

I can hardly believe it but this week the two lovebirds celebrate their one-year-being-together-anniversary. It has been a great year. They've had a few small glitches but all in all it's been a great year. Chris treats Andrea like a queen (as it should be) and she loves, loves, loves her Chrissy. They are so goofy together and the best thing about the two of them is they laugh. They laugh a lot and have tons of fun. His family has been beyond kind to not only Andrea but to our entire family. They do adore Andrea and Andrea adores them too.

Since their official anniversary date is 2/29…they'll have to wait another 3 years to have an actual date to celebrate on…that is, if they last that long. ;) (Chris hates it when I say that. LOL!) In the meantime I tell them both to just enjoy the now and not worry about the future. If all goes as planned and as they hope it to be, they'll be celebrating their 4th year together on 2/29/16. Time will only tell!

They really are pretty cute together! :)

DAVID WILLIAM RIDER

Let me introduce you to my other "love of my life". This is David William Rider, my son, my goofball…my cello playing, ornery guy that loves to push his mama's buttons sometimes. 

I blog a lot about Andrea…after all, this is a blog about our lives with cystic fibrosis; and this handsome young man plays a big role in our CF world, so I wanted to share a little something about him as well. 

David loves, adores, LOVES his sister. Sure they have their brotherly/sisterly quarrels, but for the most part they get a long great and have no trouble letting each other know how much they love one another. 

David has been pretty oblivious to CF until just recently. About 4 years ago he showed a sign of understanding the impact CF has had on our family. We were watching something on TV and during a commercial break; an ad came on promoting the CF Wine Opener. I got so excited, I screeched and said out loud…"look, look, an ad promoting our CF event." David did not show any excitement. Instead he started pouting. When I asked him what was wrong he said, "You care more about finding a cure for CF, than finding a cure for the deaf." My heart sank!

You see, David was born with moderate to severe hearing loss and we knew of that before we knew Andrea had CF. For 6 months I was enthralled into the world of the deaf and hard of hearing. Getting him fitted for hearing aids at just 3 months old. Working with speech therapists and sign interpreters. Learning American Sign Language and more. I was heart broken that my baby boy could possibly go completely deaf and hated the thought of how his life would be more difficult than most because of it. However, six months later we get the dreaded news of Andrea having CF and the first words out of my mouth were: "Why couldn't it just be her hearing?" My perspective changed immediately and I threw myself at doing what I could to help find a cure for CF. David was right, I cared more about curing CF than hearing loss. 

Now that David is older, he understands better why I dedicate more time to finding a CF cure. He completely understands the severity between the two: CF is life threatening and hearing loss is not. So now David asks what he can do to help come Great Strides time, or what he can do when I hold fundraisers. What he's also shown is some fear as well. 

David's mind wanders with thoughts of possibly losing his sister to CF. He's had some meltdowns about it actually. We have cried together because of it, but I make sure to talk to him about how much of an enemy fear can be. It's been a learning experience for him and for me. Together we're learning how to cope with CF being in our lives. 

Something else that has really been accentuated with David is his compassion. Both Andrea and David are very compassionate kiddos, but that feeling has intensified with David's understanding of CF. It's amazing how something as awful as CF is, can bring about some good things too, like David's compassion. I just know that those feelings well make him grow up to be a more understanding, caring and loving individual. And there is nothing wrong with that.

I love you David William Rider!

P.S. We are very much involved in David's hearing-loss world. Just thought I'd point that out. :)

A little obsession isn't that bad.

"Just like this little guy in this big world; life can be challenging. I dream of my college education helping me find a suitable position to give back to society, to express my ideas and to help make life easier for others and myself." ~Andrea

If you’re a friend of mine on Facebook, or have “Liked” my Facebook page--Andrea’s angels – Fighting for a CF Cure--then you know how hard Andrea and I are working at a photo competition she entered. The top 5 entries with the most “Likes” will move on to the next level to then be chosen to win one of three scholarships. First place receives $1,000, second place $500 and 3^rd place $250.

So we’ve been busy trying to garner as many votes as we can. As of today she is in 5^th place! She’s about 80 votes away from 4^th, 280 votes away from 3^rd, 440 votes away from 2^nd and 630+ votes away from 1^st. Yes, I’ve been keeping track, because I’ve become obsessed with her winning one of the prizes.

Why do I get so obsessed? Well the obvious reason is it’s my kid we’re talking about here. As a parent we want our kids to succeed in all that they do, but there’s more to it…

1. Andrea really has taken the best photo. Sure I sound prejudice since I’m ‘mom’, but I really believe her photo is the best one.
2. She took the initiative to enter this contest. It was brought to the attention of several of her peers from the Science Bound program she is in and she is the only one who has entered the contest so far.
3. Andrea understands all about the expense of going to college. She has it in her to want to pay her own way. I love that about her!
4. Although we’re not focusing on this, the reality is college may take her longer to finish because of her CF, so getting all the financial assistance possible will help pay for an extra year or two of college.

If you have a couple of minutes out of your day to spare, I’d love for you to go vote for her photo entry. You must be on Facebook for this to work. Here are the details:

• Click on this link: http://bit.ly/ZZo2gh
• "Like" the New Futuro page
• Accept the Offerpop App (this is done only the first time you go to vote. They will not solicit or post on your wall)
• Vote for Andrea's photo, once every 24 hours until 11:59 p.m. January 31st
• Share and help spread the word

Getting to the 5th spot it great, but it's going to take many more votes on a daily basis to keep her there. Please consider helping out.

If Andrea wins, we will have one very happy and giddy young lady on your hands!!!

Thank you so much!