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