Promises (originally written 12/09)

Promises, promises…

How many times have you heard…

“We’ll do lunch!”
And thought yeah sure.

Or “Of course I’ll call you!”
And they never do.

My favorite, “It’s all right there in black and white!”
And you missed the fine print.

But when eleven 13 year old girls and one 13 year old boy pinky-promises to do something, then by God, that’s iron clad.

Three years ago when Jena “moved up” to Heaven, these girls, and Mike, got me up and out of bed before noon by asking me to join them for lunch just weeks after Jena’s funeral.

"The Milton Girls plus Mike” have known Jena since her pre-school days and in their heartbreak, they wanted to meet me for lunch. In my depressed state of mind, I still questioned if it was such a good idea to meet; and even contemplated would I be a bad role model if I just ordered wine for lunch?

But these kids were amazing, and it was no wonder why they were Jena’s friends. I skipped the wine (and food for that matter) and filled up on love instead.  That afternoon was all about tears, hugs and stories about Jena.  It ended with a pinky-promise that on every December 28th we’d meet for lunch-no matter what. That promise alone showed me what love can conquer. 

If there is anything in life I’m sure of, is that these girls (and Mike) will forever be locked in my heart.  And we will spend every December 28th together.

This year we spent the entire FABULOUS day together in NYC.

We caught up with who got their license, what colleges they are applying to and who broke whose heart.  They have very busy lives, as do I, but we made a pinky-promise to make time for each other once a year. It’s our 'Pinky-Promise Lunch' and I’ll put it up against any contract, any day.


Made any pinky-promises lately?

Positive

Positive

It’s a great word. Put it next to anything and it’s even better.

Positive attitude...

Positive Charge...

Think Positive...

Positive Impact...

All good things, right?

Yeah, that’s what I used to think too.

Then there came a time when positive wasn’t a good thing and putting it next to something made it worse.

(excerpt from Beyond Breathing)

It’s positive.

My whole life I had always thought positive was a good word. Webster’s dictionary defines it as “favorable.” And when seven doctors at Westchester Medical Center walked into my newborn son’s neonatal ICU room and told me that Eric had tested positive, my first reaction was, “Great! Now let me take him home.”

Slow down, not so fast.

Eric was born with meconium ileus, a blockage in the intestines that usually comes out during childbirth. His didn’t. I was still recovering from having him at Vassar Brothers Hospital when I was asked by the doctor on call to pick either Albany Medical Center or Westchester Medical Center because Eric needed to be flown to one of them immediately. I looked at Marc, who looked back at me and then at the anxious, waiting physician and blurted out “Westchester.” 

Two people in red flight suits walked in and put Eric in a small, clear box called an isolette and had wires hooked up to him. They whisked Eric off to a waiting helicopter.

I discharged myself, and Marc and I drove by car to meet Eric at Westchester Medical Center which was over an hour away. He was already in the Neonatal Intensive Care Unit (NICU) by the time we arrived. They ran tests for two days, trying to figure out what was wrong with my baby boy. Finally they had one more test to give him: a sweat test.

Marc and I were in our sterile yellow garments in the NICU unit. I was rocking Eric in the rocking chair, staring at him. His tiny hand grasped my pinky. He was swaddled in the hospital blanket, which did a poor job of hiding all the wires that were attached to him.

Dr. Doom, the only woman of the seven doctors who had trooped in, reached for my hand when she said that Eric had tested positive. Still, it didn’t compute. “The tests are positive. Your child has cystic fibrosis.”

Marc looked at me and then at the solemn faces of the rest of doctors. That is when I realized that positive is not always a good thing. Eric had tested positive for cystic fibrosis, and that was not a good thing.

Cystic fibrosis (CF) was unknown to me—a new mom who had just given birth three days ago. What was CF? How did Eric get CF? How can we get rid of CF? Is CF bad? One sentence from Dr. Doom would sum it all up for me.

“CF is a fatal genetic disease.”

(end of excerpt)

That’s not positive.

But I was.

I had no idea where I was going from there.

In time I learned to turn positive back into something good. In time, I learned that if I searched hard enough, even when I was at the point of a breakdown, there is something positive to hang on to. There has to be.

Having both children test “positive” to cystic fibrosis was the worst thing that happen to my life-bar none.

But choosing to make their life positive, full of optimism, love, and adventure ended up being the best experiences that happened in my life-bar none.

Life comes at you and it hits you hardest when you’re not looking. The choice of what you do with that it totally up to you.

Positive and negative are directions. Which direction do you choose?

Don't Blink

The house is so very peaceful.

I quietly walk by and see Eric fast asleep. He looks so content. What’s that saying, “Let sleeping babies lie.”

So I let him sleep.

Ahh.....It seems like only yesterday I took him home from the hospital.

All those endless nights of crying...

All those bedtime stories...

All those precious moments spent with my "Bud".

 My memory wanders to all the times he hung out with me, thought I was pretty cool, and never was embarrassed I was his mom.

Through the years we've been through a lot; after school sports, last minute science projects, and impromptu Halloween costumes...yup, those years certainly were special.

Time went by faster than I realized and before I knew it high school graduation had arrived.

Wow.  Eric's 18.  When did that happen?

As fast as it took you to read this blog, is as fast as it seemed. And now my "little guy" is a freshman at Marist College and I couldn't be more proud of the man he is becoming.

As I pick up his sweatshirt off the floor, the empty pizza box and the xbox controller, I trip over his laptop and just about land on top of the clock...

...it's one o'clock!

WHAT?

In the AFTERNOON?

...and he's sleeping?

As I contemplate flipping him off the couch on to the floor, nagging him to unload the dishwasher or at the very least straighten up his room, I remember going to bed last night at midnight and he was still up studying for his final in statistics.  He's a good kid, and I'm proud he's my son.

I grab the blanket and cover him up and give him a light kiss on his forehead.

In the background, the radio's playing a country song by Kenny Chesney.  I start to well up as I listen to the lyrics:

Don't blink
Just like that you're six years old and you take a nap and you
Wake up and you're twenty-five and your high school sweetheart becomes your wife
Don't blink
You just might miss your babies growing like mine did...

Don't blink

...Cause when your hourglass runs out of sand
You can't flip it over and start again
Take every breath God gives you for what it's worth...

Enjoy the fingerprints on the wall, the dirty clothes left on the floor, the house full of screaming kids...

It all goes by so fast.  Don't wish for tomorrow because it'll be here faster than you know it.

Take a breath and enjoy today.

 I love you, Eric.

The Second Date

Today is December 4th…to me that is the anniversary of “the second date.” I wish that was good but the tears streaming down my face tells me otherwise.

It’s the second date that comes after the dash, as in 3/13/1993 - 12/4/2006. Those are my daughter’s two dates. I hate that she has a second date.

So what do I do?

Run away.

Marc and I run away to our townhouse in Florida. Against what I’d prefer, Eric convinces me he’d rather stay home with his friends but wants me and Marc to go. Fine, he’s 18 and that’s his choice but I still question if he’s ok. We all handle Jena’s “moving up” day in our own way and Eric assures me he’s fine.

So Marc and I plan our trip to Disney and know Eric will have his friends over the house while we’re away. Our house will morph into Dorm-Cassalina, Doritos will be eaten for breakfast which I am sure will be around noon and I doubt the house will look or smell like I left it. So be it.


We land in Orlando airport, rent a convertible and are at our townhouse by lunch. I check our closet for “staples” and sure enough they’re right where we left them…


I pour a glass of wine and the memories of being here flood my mind.

We bought the townhouse over 6 years ago when we realized that Jena’s lungs couldn’t handle the harsh NY winters.



Rather than being stuck inside watching life from their window, I would take the kids down here right after New Year’s Day and stay until Easter. Here they could ride their bikes, swim, and we’d make our way over to Disney just about every day. As parents we were determined to give our kids every opportunity to enjoy life despite the obstacles CF created.

As I sit here basking in the sunshine with my feet dangling in the pool...

...I think of all the great memories and can totally see why Jena called this her favorite place on earth. Now I know why we came here for the second date.

A little blonde haired girl just ran by me and jumped in the pool with her daddy. Tears start to roll as I smile at the joy I recognize in their faces. What I am realizing is that I can’t run away from the pain and grief. I am slowly accepting it will always follow me. I guess I am also learning that memories are precious, that Jena is with me always, and that smiles and tears are ok.

Second dates suck but the dash makes it all worth while.

Make your dash count.

I guess I should introduce myself...

Hi there!

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.

Beyond Breathing

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.

Beyond Breathing

****
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!