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?