Tuesday, May 28, 2013

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!


  1. Thank you for this!!! Rough day at the clinic needed to read this!!!

    1. Glad it helped. Sorry you've had a rough clinic day. Deep breath…stay strong!