Girls! Girls! Girls!

Yup…I’m  back on an airplane heading to Florida.

I am now on a first name basis with the Jetblue flight crew and they have me seriously considering applying for a job.

This time I am not flying to a CF event, there is no book signing and Marc is not sitting next to me.

I’m flying solo, baby.

This year has been such a transitional year.

Eric is thankfully doing very well with his battle against CF, dare I say, we are defeating the evil mucus monster with amazing medical advancements.  He is now a sophomore at Marist College and his social life is in full swing…which will be another blog at a later date titled : "Eric, REALLY???"

Seriously though, it is such a heart’s relief that our discussions are not about doing his treatments but about can he wake up before 1pm, and does he really need to go out 6 nights in a row? 

Before our eyes, Marc and I have become basically empty nesters.  At 42, we have completed the task of getting married, building a home, raising our children, and establishing our financial future.  Now we look at each from across an empty dinner table asking ourselves,

“Now what?” 

Time continues to fly faster than I appreciate and family and household responsibilities have become less. We have found ourselves with more time to choose to do what we want, to go where we want, and to live life how we want. I still believe in living with purpose and meaning but have no idea where to go from here.

My whole life I have prided myself on being a good mom and a good wife.  I was and I am.  My individual desires I happily placed on the back burner until I felt my responsibilities to my family were fulfilled. Over the past 20 years I have tried to spread my proverbial wings by attempting to have a job or go back to school.  However, each time I began to soar, CF and all its ugly interruptions of doctors, hospital stays, and daily CF needs forced me to stay grounded.  Being a mom always came first. No regret.

When Jena “moved up” and Eric started college my world changed. In essence, they both fired me independently. So here I stand with my "box of mom" in one hand, pink slip in the other mumbling,

"What do I do now?"

Before I bring out the tiny violins, don't get me wrong.  I still fight like mad against CF with fundraising events, national public advocacy, speaking engagements and book signings.  I got a "paying" job at the same college Eric is attending so I can be a safety net for him should he need his Mommy.  I still support Marc, his career, and making sure we find time to be together, just the two of us.

I raised my family. Check.

Our future is financially sound. Check.

 I’ve supported my husband with his career for 20 years. Check.

But what about me, Margarete? The one without all the labels of mom, wife, employee, and in-law attached. Um… un-check.

I feel like I’m missing something inside.
I miss that connection with independent me.
I miss “girl time” and I certainly miss Jena.

I have been craving that lately.  Maybe it’s an estrogen deficiency in me or maybe I am just tired of hearing about motors, hunting, gambling and golf. 

Without Jena…in so many ways I am lost.

Enter my girlfriends.

You know the ones I am talking about, the ones that will have wine FOR dinner with you on a Tuesday night.  The ones who will tell you when you are in a desperate need of a pedicure, and will call you at a moment’s notice, anytime of day or night, because they know you need that understanding ear or that kick in the ass.

There is no substitution for true girlfriends or really good wine.

So here I sit on Jetblue flight 5352 heading to Orlando.  Me and some fabulous girlfriends of mine are meeting there for a long weekend of “Martinis and Bikinis,” chocolate and sweet potato fries, and lots and lots of giggles.

Make-up is completely optional but complete honesty is not.

I need this.
I need them.

This IS purpose and meaning.

Sometimes you have to get away from the responsibilities of family and labels of who you are to the world and just be who you are to yourself….a fierce and fabulous female who wants a little escape of personal freedom and a lot soul-filling estrogen.

I love my girls.

And I thank God they put up with me.

I hope you take a little time to lose yourself with your girlfriends because you know reality will always be waiting for you when you get home.

Go crazy…peel off your label and see how it feels.

FU2CF

Ok, you're a smart person.

I'm guessing you have an idea where this blog is going...

Today my baby boy turns 19.

Eric Anthony Cassalina, my first born child, turns 19.

Big deal you say?

Let me explain.

(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 with 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.”

I certainly understood those words. 

For the next three hours, the seven doctors went on to explain everything we never wanted to know about CF. They told us that cystic fibrosis is a genetic disease that affects the lungs and digestive tract. They told us that CF causes the body to produce thick mucus that clogs the airways, enabling bacteria to grow, which often leads to life-threatening lung damage. 

What a nice way to say death.

They told us that the mucus exists throughout the body, causing the pancreas, reproductive organs, and sometimes the liver not to function to full capacity. They tried to ease our fear by telling us that the pancreatic issue can be controlled with oral enzyme supplements, but added that, unfortunately, 70 percent of all people with cystic fibrosis eventually get cystic fibrosis–related diabetes (CFRD).

Breathe, I told myself. Breathe.    

The doctors started getting more detailed and explained that Marc and I were unknowing genetic carriers of the CF gene found in chromosome seven. We’d had a 25 percent chance of having a child with CF. Back in 1989, scientists had isolated the cystic fibrosis gene, and they are working on gene therapy and, 
ultimately, the cure for the disease. 

They had my full, undivided attention when they disclosed to us that 

Eric’s life expectancy was nineteen. 

I was twenty-two. 

(end of excerpt from Beyond Breathing) 

So you see, I have been waiting 19 years.

19 years of loving Eric.

19 years of seeing him grow and overcome incredible odds.

19 years to say...

"HAPPY 19th BIRTHDAY

to the most simply amazing son a mom could ever have!"

...and I have been waiting 19 years to say, 

 "F U 2 CF!!"

 

I Voted

I vote for presidents

not idols.

I know who Sean Hannity is but have no idea what a Kardashian is.

I really don’t care for television and think the term “Reality TV” is an oxymoron.

But yesterday was different.

Yesterday, Ali and her little sister Christina were living out their dream on America’s Got Talent and I watched with undivided attention. I got to not only watch their dream unfold before my very eyes but I got to help continue to “Make-A-Wish” come true.



Christina and Ali are sisters who have Cystic Fibrosis and are pursuing their dreams of singing on national TV. When they were little, they were told that they never would be able to because of the constant assault CF executes to the lungs.

America’s Got Talent has launched the girls' dream by getting them through the first 2 rounds of competition. Now it’s up to us, America, to see that dream continue. In my opinion, the show has gone from America’s Got Talent to America’s Got Responsibility.

Another life lesson folks: It’s not always about being the best of the best but about being the best of “you.” It’s about living with determination, overcoming insurmountable odds and pursing your dream with all you’ve got. If I can help, then I’m all in. I’ll even watch TV and learn how to “call in a vote.”

Watching these girls sing was amazing. I clapped, I cheered and I cried, all from my living room couch. You have no idea what these girls have to go through just to stand there and belt out one song.

You have no idea.

Want to have an inkling of how it feels to have CF lungs? Grab a straw, stick it in your mouth and only breathe through that while you go about your day…

...yeah, now try singing.

One vote does make a difference.


One vote for two dreams. Great return on investment, don’t you think?

Okay, truth be told, I voted more than once. I voted ten times from my home phone, ten times from blackberry, and ten times from my husband’s cell. I even voted twice via text until I realized AT&T isn’t my provider and the votes didn’t count. Being a newbie to this type of voting, I got excited to be a part of something special. But I’m aged in knowing when to support a dream, and I’ll do anything I can.

These girls’ dreams are amazing.

Their message is phenomenal.

They are what heroes are made of.

I know how to vote for a president...

...and now I know how to vote for an idol!

Do you?

Feel that

Feel that?

Smell that?

Hear that?

Yup..those are my official sounds of summer.

You gotta thank Mother Nature for always nudging us to, “Move along, little ones…move along.”

It’s been a long-hard Spring in the CF world.  There have been some seriously heartbreaking stories, tissue boxes full of tears, and questions that will never be answered this side of heaven.
There are so many times I want to give up, throw my hands in despair, and SCREAM

Then I hear a little voice say, “If not you then who?”

I put my hands down, kick my own ass, and tell myself get over it and keep fighting.

I will.

But not today.

Today I need to grab a hotdog, soak up the sunshine, and chill with family and good friends.  It’s time I acknowledge how grateful I am to be alive, to be breathing, and to feel loved.

Love is a good thing.

No,it’s not just good…Love is the greatest thing.

 As Sarah says, “Love, Love, Love.” 

This blog is short because you should be shutting off the computer, laughing with friends, and be giving thanks to those who fought for our independence.

Life is about balance.

Life is about working hard toward your dreams and never giving up.

Life is about love.

Now go love yourself and get outside, you never know what you'll find.

Goodbye

No one likes to say goodbye.

Sometimes you’re told you have 10 minutes to say goodbye:

(excerpt from Beyond Breathing) 

Dr. Smarty-Pants gave me ten minutes.

Ten minutes.

That’s all I get to tell Jena everything in my heart. 

To tell her how much joy she’s brought me. 

To tell her how much I love her.

I had ten minutes.

I told her all those things. 

I told her that if I could be just a fraction of the person she was, I would be the most incredible person ever. 

I told her that if I could bring half of the smiles and laughter she did I would be honored to stand in her shadow the rest of my life. I cried. I couldn’t stop crying.

As the tears relentlessly streamed down my face, I apologized for any and every fight we ever had. I apologized for any time she was mad at me or I was mad at her. 

I told her again and again how much I loved her, how proud I was of her, and how much she’d taught me that I would never be able to repay. 

I cried. I was shaking. I was terrified. 
I couldn’t believe I was doing this, I couldn’t believe that I had to.

Sometimes you’re told you have months:

 (excerpt from blog: Not so Bright and Shiny)

 I believe in God, and I fully know He's holding us so close to him that he's carrying us right now...but man...I wish that gave me peace. A sense of relief, anything...but the never ending "why's" don't go away just because you know and trust God. Kids shouldn't die, plain and simple. Parents shouldn't have to be thinking these things and filling out DNR's and shopping around for fairly priced funeral services. It's not natures order. It's the complete opposite of order

…Why in Gods name is my seven year old son dyeing...

Sometimes goodbye has no warning and time is up.

I’m blasting Nickelback’s, “If Today Was Your Last Day”

(lyrics)

So do whatever it takes

'Cause you can't rewind a moment in this life

Let nothin' stand in your way

Cause the hands of time are never on your side

If today was your last day

and tomorrow was too late

For little 7 year old Conner Jones, today was his last day, his last breath, his last time being wrapped in the arms of his mother, tomorrow is too late.

Cystic Fibrosis stole another precious life from a devastated family.

Cystic Fibrosis steals a life every single day, 365 days a year.

Cystic Fibrosis is the epitome of evil.

Am I’m crying? Yes.

But I’m pissed-off more.

How dare life be unbearably hard and hurt so much for some people?

How dare others waste their days like the world owed them _______ (happiness, a new car, a promotion...fill in the blank.)

News flash people, the world owes you nothing.  Got that?

It’s up to you to find value, meaning, and purpose.
It’s up to you to work at it.

Today, right now, I have no patience for selfish- egocentric-morons.

Tell Conner’s mom about the ridiculously long line you had to wait in for your new iphone while she’s picking out an outfit for Conner to be buried in.

Tell her about your chipped nailpolish, your broken pool heater, the exorbitant price of your Disney family vacation.  I dare you.

Did I mention how pissed I am?

I’m angry, frustrated and I’m heartbroken.

Granted there are many illnesses out there that people struggle with everyday.  I get that.

I get that there is stress, tough times and hardships in everyone’s life.  I get that too.

That’s not what I’m talking about here, I’m talking about those people that create drama by their poor choices not by life’s circumstance.  Those that have “it” all and waste it like it was yesterday’s news.  Those that find meaningless problems some of us wish we had.

Yeah, them.

Tell them about Emily, who does two hour breathing treatments just to breathe. Tell Emily and who has committed herself to exhausting daily workouts to achieve her goal of riding her bike city to city.

(Washington DC to Shepherdstown, West Virginia)

Tell Ronnie who has CF, was told his life expectancy is "now up to" 37, and has spent more time in a hospital than he can count, who defies CF’s fatal reach by not only writing an amazingly inspirational blog http://runsickboyrun.blogspot.com/ but is planning for his fabulous future with beautiful wife Mandi.

Tell Ali and Christina, sisters who both have CF, who were told at a young age that their lungs would never allow them to sing. 


Tell them how hard you have it.

Hello people… this life ain’t no dress rehearsal!

Each day is a gift.

Each day is an opportunity to pursue your dreams.

Each day is all you have to give all you’ve got.

When do you stop giving?
Never.

When do you say goodbye?
Never.

I never said “goodbye” to Jena and I never will.
She’s in my heart forever; alive and well.

I’ll never stop fighting for CF until it means Cure Found.

Little Connerman and Jena gave us more love in their little lives than I could have ever imagined.

The world owes me nothing, yet I owe the world everything.

I think that’s a fair trade.

 Conner Reed Jones

4/14/2003 - 6/24/2010