Wednesday, March 6, 2013

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!

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