You may be new to me, my website, or my blogs. I thought I’d take a moment to introduce myself and hope you do the same.
Me? I’m an open book.
Actually, I wrote a book about my life and it seems to have touched a lot of people.
This is my wedding picture; circa 1991. Laugh all you want but high hair and the mullet were in-style back then…trust me.
My backstory won’t be nearly as long as you might think. But to play it safe, grab a drink, alcoholic or not, I certainly won’t judge, and let’s get to know each other…okay, me first.
Marc and I got married in January 1991 because we “had to.” I mean really, who gets married in 4 weeks, in a snowstorm in January unless there is a really good reason?
My incredible reason, aside from adoring Marc, was born on July 17, 1991; we named him Eric Anthony Cassalina. Eric was also born with a blockage in his intestines, called meconium ileus. Those issues turned into a diagnosis of “Cystic Fibrosis.”
What’s Cystic Fibrosis you ask?
Cystic Fibrosis (CF) was unknown to me then, the 22-year-old new mom.
What was CF?
How did Eric get CF?
How can we get rid of CF?
Is CF bad?
One sentence from the doctor who diagnosed Eric with cystic fibrosis said, “CF is a fatal genetic disease. The median life expectancy is nineteen.”
By age one, Eric was doing very well regarding his health. Marc and I thought Eric’s health would be different than what the doctors predicted. We thought we could handle anything. We were young, in love, and invincible. Our biggest mistake was that we thought it was easy to breathe.
Our daughter Jena was born in March during the blizzard of 1993. She too was diagnosed with Cystic Fibrosis.
Though both our kids were born with CF, Marc and I never let CF define who they were. We made sure of that. We traveled around the country in our RV, we created our own unique way of ‘normal,’ and we lived in spite of CF.
I was a stay-at-home mom for 17 years making sure all the treatments were done correctly and on schedule. I was diligent in making sure all the doctor appointments were made every three months, and all the medicine was taken on-time, every time. Regardless of compliance, cystic fibrosis is a monster that is relentless.
Knowing I needed to do more, I began advocating for The Cystic Fibrosis Foundation on Capitol Hill and even met Hillary Clinton while in the hospital at Westchester Medical Center. The picture below was taken while Jena was in the hospital for a lung exacerbation; you would never know she was “sick” would you?
Our family was determined to see that CF stood for Cure Found
That was until CF had other plans and in October of 2006 Jena was evaluated for a double lung transplant at the Children’s Hospital in Pittsburgh.
I will never be the same.
This is why I write.
I write to create CF awareness.
I write to pull myself out of a void.
I write to share my story and to have you *meet* my amazing daughter Jena. She once told me that pain is not a valid reason for stopping…so I didn’t.
She showed me beauty in nature and that each breath is precious….it is.
She encouraged me to be at ease with what I can’t control…no other person has ever taught me so much.
I laugh and cry each day, I call these “Jena moments”…and I move forward because life is a journey not to be wasted.
I can relate to anyone who has lost someone they love and for that, I am truly sorry.
Be rest assured, love never ends. Ever.
This blog has been a place of personal growth for me, a place to put my heart into words and share my thoughts with anyone who’ll read them.
When Jena “moved up” to heaven in 2006 I was a total wreck; barely alive. The writing was, and still is, my therapy.
I consolidated the pages of my diary into a manuscript which I sent to a friend who said I had to publish them. The next thing I knew I had published a book that has received the Editor’s Choice, Reader Choice, and Star Award. Go figure.
“On Monday, December 4, 2006, at 9:57 am, my beautiful daughter, Jena Marie Cassalina, lost her life to cystic fibrosis. She was thirteen.”
The first time I wrote those words, I looked down and saw my worn blue rubber CF awareness bracelet. The inscribed word, breathe, stared at me, almost mocking me. Breathe, it said. Breathing was something Jena was no longer doing and breathing was something I was finding so hard to do. It was just one breath that kept me from my daughter. Jena was beyond breathing. Breathing, I now know, is something way overrated.
The book and I went on tour and I was able to meet some fabulous people who have shared unbelievable stories. (Check out my ‘brag book‘ of some pretty cool folks I’ve met along the way!) Beyond Breathing was even in production to become a movie, but perhaps that’s another blog.
I continue to advocate for the Cystic Fibrosis Foundation and served as National Leadership Council Member for 10 years, National Public Advocacy Co-Chair for 3 years, and National Volunteer Leadership Co-Chair for 2 years. As National Public Advocacy co-chair, I helped pioneer volunteer advocacy efforts, leading volunteers to Capitol Hill, and helped the launch of the Cystic Fibrosis Congressional Caucus which assisted in getting a newborn screening in all 50 states. Regionally, in New York, I served as Board Member of the Northeast Albany CF Chapter and locally, I organized and ran numerous events to increase awareness and has raised funds to support the research to find the cure.
I continue to pursue life with purpose, meaning, and passion. I am fortunate to be able to speak straight-from-the-heart about life, motivation, perseverance, and cystic fibrosis to folks around the country like; American Airlines, ADP, Novartis, and Vertex Pharmaceuticals.
When I share my story and my book Beyond Breathing, the biggest feedback I receive is that I am raw, real, and passionate. Then someone always will ask, “When are you going to write another book?”
In August of 2017, I published my second book, See You at Sunset, where I bridge you from my non-fiction life into the fictional world of my imagination while still adhering to my passion of bringing awareness to cystic fibrosis with a little love story thrown in for good measure.
If there’s one thing that life has taught me is that it is your choice how you handle any given situation. It is your choice to see joy whenever you can and savor experience monumental moments like my son getting married in May 2017.
And that life is full of adventures and opportunities that push your limits to places you never thought you could handle, like hiking the Grand Canyon, 27 miles, Rim to Rim in ONE day for cystic fibrosis.
And trusting that Jena’s spirit is alive and well; proving to me daily that #LoveNeverEnds
Thank you for your time, your heart, and I hope you stop by again soon.
Relationships take time, so don’t be a stranger, be a friend and sign up for future blogs, leave some comments, and let me know how you are and what you’re thinking. You can never have too many friends.
Until then, get outta here, go stretch your limits and see where life takes you.