Have you ever read a blog just to lose interest in like 5 minutes because you just can't "get into" where the writer is coming from?
Yeah, me too.
Well, I like to keep things upfront and simple. Guess that's me. I'm an open book. Actually, I wrote a book and well, it's pretty upfront and simple.
I'll get back to the book in a minute (or two) but let me give you a little personal history and hopefully I won't bore you in less than 5 minutes. After that, well then shame on me.
This is my wedding picture.
Laugh all you want but high hair and the mullet were in-style back then...trust me.
This is us 20 years later.
With a little less hair and A LOT less hairspray, we are still happily married. You can insert gag here- I don't mind.
Now let me give you a little of what happened in those 20 years. It won't be nearly long as you might think. But to be on the safe side, 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 because we "had to." I mean really, who gets married in January unless there is a really good reason?
Yup. That's right. I was three months along with our son Eric when I walked down the isle...and yes, I wore white. Before any judgment is placed, let me state for the record that we were in love and we are still happily married. (note: just to avoid any finger pointing)
In July of that same year, Eric was 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 or CF as us 'experts" call it 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 gave us the diagnosis summed it all up pretty well. She said, "CF is a fatal genetic disease-median life expectancy is 19."
Well, that's a mouthful and Eric and CF were a handful
Eric was doing very well with having CF so Marc and I thought we'd be different than what the doctors said. 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 the blizzard of 1993. She too was diagnosed with that dreaded name-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.
Jena loved to draw. Sometimes the drawings were heartbreaking. Here is her picture she drew to describe her "Two Worlds."
Having cystic fibrosis took it's toll even though we had the best medical care in NY. We had great insurance and I was a stay-at-home mom for 16 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.
One month's supply of medication for both Eric and Jena
We advocated for the Cystic Fibrosis Foundation on Capitol Hill and even met Hillary Clinton while in the hospital at Westchester Medical Center. Jena was in the hospital for a lung exacerbation at this time-you would never know she was "sick", would you?
(note: I know I look too tan but to be fair, Hillary was overly 'pasty' )
Our family was determined to see that CF stood for Cure Found
When Eric got his driver's permit we thought that would be the most frightening time of our lives...
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.
CF is a horrible disease.
Jena never did get her new lungs in time and she lost her battle against CF on Monday, December 4, 2006 at 9:57am.
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 is for me to share my thoughts with anyone who'll read them. I hope you walk away informed and inspired.
When Jena "moved up" to heaven 3 years ago I was a total wreck-barely alive. I spent the first 4 months in a complete fog. I am not proud to say that I was drinking at 9am. I just didn't know how to function or how to numb the emotions I was feeling.
A friend mentioned that I should write my feelings down-so I did. Those written feelings I shared with my girlfriends who told me I had to do something more. I consolidated the pages into a manuscript which I sent to a friend (who is an award-winning writer) 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.
****
Dedication (book) To God’s grace, his gift, my daughter, Jena; in so many ways you left us breathless …
“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 are on tour-which has been incredible. I've met fabulous people who have shared unbelievable stories.
I donate 65% of my net proceeds back to:
For the foundation to use for research: for the quality control and ultimately the cure of CF
As the Cystic Fibrosis Foundation's National Public Advocacy Chairs, we will continue to storm Capitol Hill to tell anyone who will listen that CF needs to be cured-yesterday. We need to add tomorrows for all those with cystic fibrosis.
I've met some pretty cool people along the way....
Paul Teutel Sr (OCC-Orange County Choppers)
Lonnie Quinn (CBS weatherman)
Louis Gossett Jr. (Academy Award Winning Actor)
Patty Jenkins (Writer/Director Monster) and Shirley MacLaine
Cindy Hsu (CBS News)All who want to see CF stand for Cure Found.
I know that Jena is behind all this and that means it'll be some adventure-want to come along?
This post is just the beginning of what I hope is a beautiful friendship-so don't leave without becoming a "follower."
Thank you for your time, your heart, and I hope you stop by again soon...relationships take time, you know.
Now, get outta here...go do something great!
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