Adventure Paused

An adventure.


The spirit behind the 10-day adventure was the same spirit that led the way...Jena.

The penny we found on Adventure Day 1 was our first "Jena clue" that she was part of this adventure.

We set out to see the country, no plans and no destination in mind. Just love and adventure leading the way. Jena's presence was strong thoughout our trip from our first stop on "Just Thursday" at the Flying J at 3:13 in the afternoon to Friday's unplanned visit to the Natural Bridge in VA at 3:13, and then again at our gas pitstop on Saturday at yet another Flying J at...yup, you guessed it...3:13.

Jena's birthday is 3/13.

The adventure seemed to be able to distract the heartache associated with this time. You see, this week (4 years ago) is the epitome of pain. The pain of seeing Jena suffer with collapsed lungs, the pain of awaiting for a lung transplant that never happened, and the pain on Monday, Dec 4th when God came to bring her home.

That pain.

That pain, the monster of all emotion comes back in full swing this time every year and I can't seem to control the intesity.  Still, we tried to fight the debilitating force by taking an adventure, with no expectations other than to follow our hearts...and with Jena leading the way it actually did seem like an exciting idea.

It was.  Day after day our adventure grew.  Thanks to cyber-space we were able to share our adventure with friends around the country and it enhanced the joy.

Then came Adventure Day 9...at 11:59pm...in Savannah,GA. We checked into a riverfront hotel, made it to our room only to walk into a wall of emotion that just seemed to be waiting for us to arrive.

It was now Dec 4th and the reality of this entire trip hit me like a ton of razors. Four years ago today was the last time I saw, hugged, and kissed my baby girl. At least her birthday is a celebration of sorts...the day she entered my life but today, December 4th, there is nothing good.

Today is nothing to celebrate.

So what did I do?

I opened a very expensive bottle of wine that we bought yesterday from our new friend at Wine World. I poured a very large glass of wine and began to cry.  The lump in your throat, can't talk, ugly cry.  I was ready for the wave of heart-wrenching pain my heart was about to endure.

It's like watching your life pass before your eyes...but it was her life that I saw. The memories of the day she was born, the first time she said, "I love you, Mommy" ...her giggle, her determination, and even our heated debates about what I think she should do and what she was going to do anyway. The memories of all the hospitals she endured due to CF, all the suffering she dealt with, all while having the strength to do it with the courage I only wish I had.

All that.

All 13 years of memories and emotions came flooding into my heart without any barrier to stop it.

I finished the bottle around 3am with puffy eyes and swollen heart and crawled into bed. Waking up wasn't much better. But the love of Jena once again led the way and I looked at my phone to see that there were so many other people thinking of Jena and our family today and the tears began again. I spent the next four hours reading all the texts, emails, and Facebook posts of love, prayers, and strength.

I'm telling you it works.

The love and strength I got from everyone overpowered the seemingly unending hurricane of sadness and I was wonderfully reminded that love is the greatest gift and love truly is...never ending.

One particular friend snapped me out of it with her words,"Stay on your journey, don't hide from the sun."

With those words, I got up and threw all the tissues in the garbage.  I took a long shower and headed out into the sun knowing Jena was right there by my side.

We ventured out on to the streets of Savannah and strolled along the riverfront.  We took in the sights of the riverboats, the sweet smell of hot fresh pralines and the live holiday music in full swing.
 
Walking down the historic cobblestone streets, Marc and I recognized that life is an adventure and with baby steps you can get through even the hardest of days. The heartache and the happiness, it's all part of the adventure and it's ok to feel the pain, to hurt when it hurts, but remember to get back in the sun as soon as you're able.

As we made our way back to the car, I stopped at one of the beautiful parks in Savannah.  It happen to be where the famous "Forest Gump" bench is.  I just had to laugh at the chance of the moment.  Of course, I sat down and said, "Life is like a box of chocolates and I've been so blessed with the assortment I've been given.



...Adventure resumed

...Life continues

...Love never ends.

I love you Jena.

Just Thursday

Thanksgiving: CANCELLED.

Adventure:  BOOKED.

Sanity: Still up for grabs.

This time of year…from now until the day after Christmas…is when I go emotionally insane. 

You see, for years I’ve cooked Thanksgiving dinner for our family and Thanksgiving 2006 was the last holiday I got to spend with my        baby girl. 

She moved up to Heaven not long thereafter.

Since then, I’ve tried to face this time period in so many ways, none of which seemed to let me avoid the emotional roller coaster ride from hell.  It’s her anniversary, it’s the Thanksgiving and Christmas season that she’s not a part of anymore, it’s the decorations, the holiday smells and the gift buying that sends me reeling in and out of grief, depression, and wonderful happy memories.  I am at the mercy of this emotional tailspin, and I can’t seem to pull myself out until Dec 26th. 

December 26th seems to have now become one of my favorite days…it’s the day I can say, “It’s over.”

This year I’m trying something new.

This year I’m shaking things up.

This year I’ve cancelled Thanksgiving.

Yup.

It’s now called: "Just Thursday”  or  “The Thursday formally known as Thanksgiving.”

Why this year?

This year has been a very tumultuous year on so many levels that I don’t think I can handle any more emotional drama.  To force myself to forge through yet another “The Thursday formally known as Thanksgiving”  would surely send me on a disturbing tailspin plunge into an inevitable breakdown and I was afraid I may not recover.

So as to avoid the Funny Farm showing up anytime soon, Marc and I made the decision that on "Just Thursday," we will be getting in our car with just a wallet, a suitcase, and a map.

No reservations, no plans, and no one is expecting us…anywhere…for 10 days.

10 days of adventure.

10 days of spontaneity.

We got the idea from Eric when he and Dean took their cross-country road-trip back in May.

(My Blog about Eric and Dean's Road Trip!)

By the way, Dean’s family is where Eric will be giving thanks on "Just Thursday."


I'm not sure this is the answer, but we are all trying something new to get through what we will never understand.

So on "Just Thursday," Marc and I are leaving, bright and early, to get a jump start on our 10-day adventure to nowhere but I bet we'll make good time!

 And watch out, our adventure may be coming to a city near you!

(You can follow our 10-day adventure on Facebook)

Margarete McCord Cassalina | Create Your Badge

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

Make it

I am in the 9th hour of a 12 hour car ride from New York to North Carolina, in the backseat, with no control of the music or temperature of the car. At least I have a stash of chocolate and my laptop to keep me sane.

My expectations for this trip were low and by low I mean I would have gladly scheduled a root canal to get out of it. Yet here I am, and have been, since 6am this morning with Marc, Eric and my mother-in-law, Ann. We are on our way to a family wedding in the outskirts of Asheville, NC…800 miles from home.

I can hear you now, Why not fly? Good question.

Believe me, I tried. There are no direct flights between here and there and the layovers were extensive. The wedding location where we are going is a bit remote, so the difference in travel time was equal, hence the road trip from hell. Here I sit, doing all I can not to pull out my hair, strand by strand.

I have no internet, no work, no Facebook to entertain me. The incessant country music Marc listens to while he drives is enough to put me into a coma. Eric and Ann swapped seats at the last rest area because Eric was tired from only 3 hours of sleep last night. I’m sure it had nothing to do with the house full of boys that showed up at midnight to “hang” with Eric. He grabs a pillow and is fast asleep on my lap. I look at his legs that are now too long to fit across the back seat anymore and I sigh. He’s not my little boy who used to call me, “Mommy.” He’s a young man who calls me, “Ma.”

I really am so proud of Eric and all he is becoming. He’s working part time with Marc at Merrill Lynch; he’s taking an online class over the summer to get ahead, and he’s living the social life of a college student. I love that he still takes time to “hang” with the family…and sleep on my lap.

My trip down “Where did all the time go?” gets replaced as I notice the conversation in the front seat. I’m listening to Marc and Ann talk about golf. Ann took the sport up a few years ago with some of her girlfriends and it’s so nice to hear Ann and Marc connect. Talk about “Where did all the time go?”  Here I sit in the back seat with my son asleep on my lap and Ann and her “baby boy with grey hair” chatting it up in the front seat.

Life is chaotic and our little boys grow so fast it would make any G-force jealous. This never-ending car ride from hell has turned into a captive mother-son bonding time that truly is priceless. Life is what you make it. It really is up to you how you choose to make the most out of your life. You can choose to resent time, your wrinkles, and bad flight schedules or you can choose to embrace all life has to offer. Mind you, life will make you crazy if you let it or it can make a captive audience a wonderful memory. The choice is always up to you, make it worth it.

...and somehow I think our angel co-pilot had something to do with this…

Seriously though, next time I’m flying.

Everything I Do

I’m sure you’re not surprised to know I am writing this from seat 11C, non-stop flight from NYC to Los Angeles, California.

Where am I off to this time?

I have a Beyond Breathing book signing and a Great Strides walk in Huntington Beach, a Cystic Fibrosis fundraising event in Hollywood called “California Wine Masters,” and a few much anticipated dinners with very special west coast friends.

By now you know that I’ll do anything and everything for CF because both my kids, Eric and Jena, were born with the horrible genetic disease.  I am sure you are also convinced that I am determined to make CF stand for Cure Found.

So while Marc is sleeping, I turn on the laptop, hit the shuffle on my iPod and begin my 5 hour and 18 minute flight out west.  The first of my 373 songs that plays is “Everything I Do” by Bryan Adams and my writing begins.  I’m smiling as I look out the window into the clouds.  The universe has my undivided attention.

This song has a story, this flight is long and my laptop is fully charged; my blog begins.

The lyrics I hear are:

There's no love - like your love
And no other - could give more love
There's nowhere - unless you're there
All the time - all the way

Oh - you can't tell me it's not worth tryin' for
I can't help it - there's nothin' I want more
I would fight for you - I'd lie for you
Walk the wire for you - yeah I'd die for you

Ya know it's true
Everything I do - I do it for you 

Romantic if it were about Marc, but it’s not. “Our song” is I.O.U by Lee Greenwood. That my friends is a whole other story where I’m sure I'd joke and tell you how Marc's been paying for marrying me 20 years ago.

Right now, THIS song is a love story about me and Eric.  Mother and son.  Unbreakable bond...stretch marks and all.

When Eric was born back in July 1991, "Everything I Do" was the number one song. You couldn’t escape hearing it at every wedding, every high school prom, and of course it was incessantly playing on every radio station in the country.  Oddly enough, the place I heard it the most was in the Neonatal Intensive Care Unit (NICU) at Westchester Medical Center.

It was Eric’s first home for his first week of life. As a 22 year old mom, I would hold Eric so very carefully as he was swaddled in hospital blankets with wires attached to his tiny body.  As I rocked him and stared at my new baby boy, I listened to the lyrics and cried.  He meant the world to me and he redefined my definition of true love.  As a young mom, I was so scared what was ahead of me.  All I was told was that Eric had CF, a genetic disease that no cure and his median life expectancy was 19.  At that moment I knew that everything I would do, I would do it for Eric.

Flash forward 18+ years…Eric was discharged from the hospital on March 11, 2010 from a pretty bad flare up with his lungs due to CF.  As we drove home in my car listening to the radio guess what song came on?

Yup.
Boy, you’re a smart cookie.

The song hit me pretty hard.  I started crying and had to pull over to let Eric drive.  I realized that it wasn’t the lyrics to the song that got me but the promise I made to him 18 years ago in the NICU. Whether I said it out loud to anyone or not, I really don’t know, but I do know that choosing to be a stay at home mom for 17 years, attending CF fundraisers, and chairing local and national CF committees, everything I have ever done with meaning and purpose in my life was because I was a mom to Eric and Jena.

When Jena fired me and left this world on December 4, 2006, my fight for CF still continued.

CF is the reason for my heartache and is the force that drives me to make a difference in the lives of those who fight to live.  CF has integrated into all aspects of my life. In fact, there hasn’t been a vacation I haven’t gone to that CF wasn’t somehow figured into the mix.  CF is everywhere and in everything I do.  Sometimes it feels empowering when I am part of an event where we’ve raised a ton of money for research and sometimes it's the source of my misery.

Before I left the house today, I checked my Facebook account and realized I was down yet another friend…crap.  That makes two so far this month. Both Facebook friends had cystic fibrosis.  Both Facebook friends lost their battle to CF this month...crap.  This month ironically is national CF awareness month.  Not exactly the way to create CF awareness.  This is why I have laser-like focus to do everything I can to cure this hideous disease. I do it for Jena. I do it for Eric.  I do it for Emily and Mike.

In addition to the worry of having a son with CF, I have been informed by said son that he is going to fly out to San Diego next week.  Why?  To take a two week road trip back to New York with his long time friend Dean.

Great.

Just great.

Where is that sarcasm font when you need it?

So, two 19 year old boys will be traveling cross country, living large, experiencing all the adventures life has to offer, with absolutely no supervision-whatsoever.

Breathe.

Marc and I raised him well.  We raised our kids to live life to the fullest in spite of CF.  I never put him in a bubble to protect him from the world, I never told him there wasn’t anything he couldn’t do and now I have to accept the fact he actually listened to me.  But cross country for two weeks? Really?
 
I speed dialed Dean’s mother Tara.

Our conversation went something like this:

“Tara, Hi it’s me.  Now listen, I know you’ve been there for me through everything and I owe you the world.  Tell me, how do you feel about a little trip cross country? We could fly to San Diego, rent a car, get cool disguises and follow the boys home.  What do ya think? You up for it?”

Dean is her youngest of 4 and she knew better.

“They’ll be fine…and you know damn well that if we go, Marc and Tim would be right behind us wondering what the hell their wives were getting into now…so how about I just come over for a glass of wine and we can look at the boys’ baby pictures instead?  If it makes you feel better, I’ll bring over some wigs.”

After a moment and a heavy sigh I answered, “Yeah, you’re right."

Before I could grab some wine glasses and open a bottle of Cabernet she was there with a hug, two pairs of dark sunglasses and blonde wigs.

My point?

CF sucks and life is an adventure if you’re doing it right.  And you should consider yourself damn lucky if you’re surrounded by those who love you when you act crazy.

So, I’m off to another CF event in California because that’s what I need to do.

Eric’s going to have the adventure of his life and that’s what he needs to do.

But between you and me...I'm scared.  Eric is the entire world to me.  He is what keeps my from going completely and utterly insane.

Everything I do… I do for him, for Jena and for those fighting CF.  I can’t stop fighting against CF and I can’t keep life from Eric.

So if you see two chicks in a convertible out on Route 66 following two teenage boys…do me a favor and don’t blow our cover...