BeyondBreathingBlog

Believe...LOVE is what's for Christmas

2011-12-09T10:07:00.005-05:00

Read below and see how YOU can receive a FREE

signed copy of BEYOND BREATHING

Today is "Macy's National BELIEVE DAY"

Today Macy's is granting 55 nationwide "wishes" in conjunction with The Make-A-Wish Foundation

Today is a day to BELIEVE.

In today's world we hear so much about the negative; the greed and contempt, the wars and fighting among one another, the struggles and hardships that tear at your heart and soul. How often do we hear of the GOOD that WE are all capable of doing? How often do we hear of what one person's ACT OF KINDNESS can do for humanity? In my opinion, not nearly enough.

But I believe in the spirit of giving.
I believe that gifts don't have to cost anything but your time.
I believe we ALL want to do "good" for one another.

I learned this lesson very clearly a few years ago...

Let me explain.

Holidays are always the hardest and Christmas is the pinnacle of pain.

The joys that used to fill this house now just seem sort of vacant.

The tree is up…big deal.

It’s missing all of Eric and Jena’s handmade ornaments hanging off its fake, lighted limbs.

No Christmas dishes are out.
No Christmas cookies are baking in the oven.
No Christmas cards will be written.

No, I’m not a Ba-Humbug kind of person, I just don’t care anymore.
Jena took the magic with her.

If you listen carefully, you can hear her yelling at me right now.

"Mom, get a grip!”

"Where’s the Christmas music?"

"Where’s the Santa sugar cookies?"

"And where’s my glittered pine cone I made in second grade?”

She’d be so angry with me for the way I’m acting. She’d also be bugging me which present was hers under the tree; holding each one up, shaking, guessing…

Yeah, here come the tears….

One morning in December of 2007 I woke up from a “Jena” dream. In my dream, Jena was shaking a wrapped present and said, "I just know this is my favorite gift, ever!" When I asked her what she meant, she smiled and told me I’d figure it out. Then I woke up.

Great…dream riddles... at Christmas… from Jena.

Turns out, I figured it out and I wouldn’t dare let a Christmas go by without a present for my daughter-especially her favorite gift EVER.

Here it is:

What’s inside, you ask?

LOVE.

Jena once told me, “When you see love, you’ll see me.” I believe her. I know for certain that we take our hearts with us when we leave this world and that love transcends.

So, back to the 'Jena Gift'... since that dream in 2007, my niece and nephew and I wrap an empty box, right before Thanksgiving, and leave a slit at the top. Then between Thanksgiving and Christmas Eve our whole family engages in as many random ACTS OF KINDNESS as possible.

Here’s the catch: they can’t tell a soul. It’s a secret!

Then we write down all our random-acts-of-kindness on an index card, like we are addressing it to Jena, and slip each card in the wrapped box.

On Christmas Eve, when we are all gathered around the Christmas tree at my in-laws, we read them out-loud TO Jena, it’s her favorite gift, ever. It's giving of yourself, it's giving of your time, it's giving of your love.

She is forever with us. We want her to know we still go “shopping” for her to find her that perfect Christmas gift.

She loves presents, so feel free to join us in the gift-giving!

Ok, here's the deal:

1) YOU do something nice, an act of kindness, then tell me about it by midnight on Friday, DECEMBER 23, 2011.

2) Please tell me about it either below in the comment section, or on my Beyond Breathing Facebook page , or if you rather not be public about it, you can: EMAIL ME HERE

3) On Christmas Eve, my family will read your Jena gift with ours and then decide which 3 people I'll send a SIGNED COPY of 'BEYOND BREATHING' to and you too can *meet* Jena.

There's so much in this world to be thankful about.
There's so much in the world to share.
There's so much to BELIEVE in.

May God Bless you this holiday season.
(Please feel free to SHARE this blog!)

Adventure Day 12

2011-12-04T22:58:00.003-05:00

The whole point of this "13-Day Adventure to Nowhere" was to desperately try to change the depressed emotional tailspin that occurs between Thanksgiving and December 4th.
It's Hell Week in every sense of the word. Thanksgiving 2006 was Jena's last holiday with us, the next day her lungs collapsed, and she moved up to Heaven Monday, December 4th.

Though 5 years have past, the horrific ordeal is replayed in crystal clear clarity every "hell week." Just seeing the date, 12/4, is a brutal reminder of the last exact date, time and second I held my baby girl.

To know me is to know I don't dwell in the negative for long.

I can't.
I won't.

"If you're going through hell...keep on going..."
Besides, that's the last place you'd want to set up shop.

Jena lived with so much zest for life that for me to be miserable for too long would be an insult to her passion of life and all the beauty it has to offer.

Jena Marie Cassalina is SO much more than "Hell Week."

And because of her, I won't dare waste a single breath if I can help it.

Eric seems to have come to terms with her moving up to heaven in his own way. He doesn't need to escape from reality and take the adventure with us. I believe Eric has a special connection with Jena...

...and a unique perspective of it all that enables him to accept what is. Though he too is heartbroken, he has been able to live life to its fullest, not wasting it on what can't be changed. Eric is an amazing son and I learn from him everyday.

Marc and I had to find our own solution to honor Jena and survive a heartache that seems to not know time. Last year our 'Adventure' was a great start and this year we knew we were on to something.
We knew we can't run away from the pain but rather reframed it into something positive...an adventure of sorts... with Jena guiding the way.

Call us crazy, but 'The Club' we belong to, no parent should be a member. We don't have a choice to go through this hell week but we do have a choice on how we will deal with it.

The pain of not having her to hold, hug and kiss will never cease but like Jena told us,"Pain is not a valid reason for stopping
...so we do our best to make new memories with our "Flying J"

She has shown us that life is beautiful and yes, a fun adventure too...and we need to pay attention to the signs...

the best thing I know for sure is that LOVE NEVER ENDS and it IS the greatest gift of all...

Marc, Eric, and I would not have made it through the day without all the love that came flooding our way either via facebook, text, email, and even phone calls. We were amazed how many people keep Jena, and us, in their hearts. Please know that your love does help heal our hearts, more than you'll ever know...and that is why I am certain that Love Never Ends and we are never far from the ones we love.

Adventure Day 11

2011-12-03T22:04:00.000-05:00

Today was haul ass day.

We were still in Florida and had 1,200 miles ahead of us. We loaded up with coffee and gas, and The Starship Escalade was back in flight.

On the road again...

Marc cranked up his Willie Nelson and I booted up my iPad; what a perfect couple we make.

This is Day 11...11 days of adventure, 11 days of life on the road.

With 2 days left to go, here are a few things I've learned:

Sandbars do not have bartenders...

Trucks are not filled with coffee...

And alligators aren't the only creatures to fear in the Florida Everglades...

I've shared our Jena moments with you that I thought you would enjoy but the best moments were the ones I know were meant just for us to understand...like the the pot roast, the Pilot House on 13 Seaview at 3:13pm, a baby boy, 103 or 33, and of course, the fireworks.

I knew this adventure would open our eyes and hearts to signs along life's way and I know my baby girl is still teaching us lessons like:

Anticipate the unexpected...

Explore a new path...

And set your sail and let the wind take you on your own adventure...

Adventure Day 10

2011-12-02T20:31:00.001-05:00

Time to chart the course back home...oh the heavy sigh...

I know, you really feel for me, right?

The Adventure has been wonderful and the weather has been picture perfect.

We sadly left Key West and headed north on US-1.

Marc still feeling a little 'Pirate' thought we should make a stop in Treasure Island, FL.

We landed 'The Starship Escalade' at an appropriate docking station...the aptly named, "Caddy's on the Beach" and had a drink or two...

We enjoyed the sun, the beach, and the postcard view that will soon become just a distant memory...

The only complaint this New Yorker had is THIS somehow doesn't seem right...

A snowman on the beach?

Then we said a sad adieu to our fellow feathered friend from Key West...

Yes, Carisa and Lori...he's been following us. We named him Scully.
Oh, and by the way Carisa, we gave him the Savannah pralines to bring to you...let me know when you get them!

Adventure Day 9

2011-12-01T08:18:00.001-05:00

Hyatt Resort & Spa...in Key West...is home for now.

Marc was on a work conference call for an hour or so this morning while I enjoyed room service looking at this view:

A little after 9am, his call was over. He grabbed his coffee, leaned over the balcony, and took in the scenery. A few seconds later he started singing a Jimmy Buffett song:

"End of the road?
What do we do then?
Rev it up and jump that buggy to Havanna
We're goin' conky tonkin'..."

With that, he looked back at me, smiled and said, "Let's rent a boat!"

...and we did.

The 'Starship Escalade' ran out of road but we hadn't run out of adventure, so Cap'n Marc took to the sea in search of...nothing but that elusive horizon.

My crucial job as Co-Cap'n was to kick back and soak in the day.

Once we tossed anchor and made land, I knew I had island fever and wanted know more about life on Key West. I had a nice long talk with one of the island's oldest residents. I asked him how I could make this lifestyle permanent. He didn't say much but contemplated how this city girl could give up her nails and heels for ponytails and flip-flops.

Our conversation was interrupted by an island native who asked me to dance "The Scrub Dance" which he said was indigenous to The Keys. The dance was rigid and his hands were a bit 'spongy'...

I came to the conclusion that I'll be island tourist and do what us tourists do at 5:48pm...in Key West...

For the second night in a row, we ordered a Margarita and a spectaular sunset...and wouldn't you know,they were both made to perfection!

Adventure Day 8

2011-11-30T20:44:00.001-05:00

Co-Captain's log...Stardate 11.30

Hello, Key West!

Sunset & Margaritas

Adventure Day 7

2011-11-29T20:55:00.001-05:00

SoBe is SoMe!

After an exhausting day lounging in the Miami sun...we hit the night life that is SoBe.

Here, all the women look like models and the men are flat out GORGEOUS!

I was perfectly comfortable to see all stares be directed at Marc, though I am not sure he would agree with the same comfort level.

After a stroll up and down Ocean Drive, we decide upon "Quinns" for dinner. Ocean Drive dining is beyond compare and we had a perfectly prepared dinner...mine was seared Ahi Tuna with wasabi and Jasmine rice.

After dinner,we went back to the hotel for a little stroll on the beach...well,let's just say that's what our intention was...

Vegas doesn't own all the rights, you know.

Adventure Day 6

2011-11-28T18:05:00.003-05:00

South Beach, FL

I'm writing this, sitting on my balcony, enjoying the night breeze and a glass of Cabernet.

We haven't quite made it to the Keys...Do you have any idea how FAR Key West is from NY?

Though our minds were set on Key West, our eyes spotted the white sandy beach of Miami, so we pulled the Starship Escalade over and landed for a few nights. We couldn't have picked a better spot than South Beach, FL. We took in some much needed rays and of course, a few cocktails beachside.

Apparently the Art Basel exhibit is here this week in SoBe.

The town's a buzz over Art and the beach is beautiful!

We thought WE decided to stop here...but of course there are no coincidences.

This is a close-up view from our balcony...

And this is the view up-close...

Yeah, I know what you're thinking...we thought it too.

We asked the guy on the beach, who's guarding the ONLY art as far as your eyes can see, "So,what's up with the roses on the beach?"

He said, "I don't know, some big shot artist from NY."

We smiled and said, "No kidding..."

We knew Jena was once again leading our adventure!

Adventure Day 5

2011-11-27T22:06:00.005-05:00

Savannah, GA
"Mommy, the Titanic!"
The first time I visited Savannah, GA was in 1998 on a family trip. Jena was about 6 years old. One morning she had gotten up early and stood on our balcony and watched this huge merchant ship floating down the Savannah River. She yelled, "Mommy, the Titanic!" and the very next moment that ship let out an alarmingly loud blow of it's fog horn. I sprung to my feet, and we stood out there watching this enormous boat float past us. It was one of the best memories with Jena.

Last year on our 'Adventure Trip to Nowhere' we ended up here on Dec 4th...the worst day of the year.
Marc and I managed to get through the day with heavy hearts and puffy eyes. We stayed at a hotel in town, far away from the river, and tried to enjoy the painfully sweet memories of our last family trip to Savannah.
...and somehow we ended up back here again...
This year we stayed at a hotel right on the river.
This year we woke up to the sound of a ship's foghorn deafening blow.
This year I yelled, "Titanic!" and ran to the balcony to watch it float by.

I just love Savannah.
I love the history, the Live Oak trees heavy with Spanish moss, and who doesn't love all that Southern hospitality?
If you ever make your way to Savannah, GA...here's my 'Top 3 must-see List'
1. First, go to Huey's on the River for the BEST coffee ever! I felt like I was in a coffee commercial when I asked our Paula Dean look-alike waitress, "Excuse me, but what brand of coffee do you use?"
She cheerfully said in her charming southern drawl,"Oh Darlin' I'll just share our little secret with y'all." And with that she took out a pen and jotted this on our paper tablecloth:

2. Then walk down River Street and stop here:

You can't miss the wonderful smells seeping out of this place. No one can resist trying a free sample or two of their mouth-watering warm pralines right out of the oven.

3. For dinner and a little history...go here:

Huge thanks to our Facebook friends who kindly answered our quest of, "Where's a good place for dinner?"
Thanks to the suggestion to go to The Olde Pink House , we had a little history lesson (Georgia's First Bank) and a sensational dinner!
When dining here, you must order their "BLT", Fried Green Tomatoes & Sweet Bacon with Black Pepper Thyme Buttermilk dressing. It's been featured on The Food Network's, "The Best Thing I Ever Ate" ...and Marc agrees whole-heartedly.
But truth be told...the very BEST thing to do in Savannah, by far,...is make "titanic" memories...in fact, make them wherever you go...

"...near, far, wherever you are I believe that the heart does go on...once more you open the door and you're here in my heart "

Adventure Day 4

2011-11-26T22:32:00.001-05:00

Co-Captain's log...star date 11.26

We left Richmond,VA with one thing on our minds...

A Margarita, in Key West, watching the sunset over the ocean.

The Starship Escalade had a full tank of gas and off we drove South on I-95 as fast as our radar detector allowed.

Welcome to North Carolina...check

Welcome to South Carolina...check

Welcome to Georgia...check y'all

We only had 3 little hiccups.

1. A radar detector actually has to be "ON" for it to work.

2. Flying truck tires are not good on the interstate.

3. An odd whining coming from the engine.

Thankfully, the nice police officer let us off with just a warning...

The Starship Escalade couldn't activate its force field fast enough and it only suffered a minor scuff to the front bumper from the flying truck tire.

And who needs AAA when I've got Mr Fix-it Man...

And at a rest area, Mr Redneck Man couldn't walk by without taking a shot.

He countered by saying, "Well, it is Deer Season after all! "...and wouldn't you know, he got high score.

Adventure Day 3

2011-11-26T10:52:00.001-05:00

We woke up refreshed and relieved that we had made it through 'Just Thursday' and were anxious to see what today's adventure had in store.

But where to go from here?

With perfect timing, my friend texted me,'Follow the Sunshine.'

Back in The Starship Escalade...we left Atlantic City and headed South...that is until we ran out of road.

Then our ship came in...

When we arrived at Cape May, NJ our only option was to take the ferry to Delaware. Like herd of cattle we were corralled in place and off we sailed.

Side note: for the 30 mile trip it was the best MPG the Starship Escalade has ever seen!

As Marc looked out at the gorgeous panoramic view I can't help but notice the couple in the car next to us...he's asleep and she's reading on a Kindle...I laugh as I think that is a peek into the 'future us'...still traveling...still together...still embarking on an adventure.

Until then, we'll just do our thing...

Me, Marc, and the open road...or sea...

Adventure Day 2

2011-11-24T21:07:00.001-05:00

Happy Just Thursday!
( from Atlantic City,NJ)
And for the first time in 5 years it was really...just Thursday.
We slept in...
Enjoyed coffee with a view...

then took the elevator down to the action.
Nothing says holiday tradition like the ringing of slot machines, drunk guys yelling "Yo!" and the smell of stale smoke...ahhhh...the casino...filled to the brim with fellow Just Thursdians.
The quote of the day was, "What did you win, now?"
I have to admit...THAT was fun!
At dinner we reflected on how much we have to be thankful for and how blessed we are. Eric is home with my in-laws and extended family enjoying turkey, the fixings, and all that is traditional. I'm thankful everyone is where they need to be to get through today.
Maybe what we did, and our Mexican meal, isn't exactly tradition,...yet

...but who knows?
We did see a whole bunch of other fellow Just Thursdians enjoying a meal, a smile, and the rattle of casino chips in their pockets!
Nothing will ever be as it was but we will continue to reach for the stars whenever we can.
Now, if you'll please excuse me...I have to run...the paparazzi is chasing Marc...

Adventure Day 1

2011-11-23T22:15:00.002-05:00

Adventure: the final frontier. These are the voyages of the Starship Escalade. Its 13 day mission: to explore strange new lands, to seek out new life and new civilizations, to boldly go where no married couple has gone before...stuck together, no reservations, no destination...in search of Sanity.
Margarete A. Cassalina ...co-captian's log, star date 11.23

We drove south on I-87, to 17 South, to the Garden State Parkway toward Atlantic City...why?
Because of this:

You see, last year we decided where to begin our trip by throwing a dart at a map. That dart toss brought us to The Natural Bridge in VA, then our Facebook friends took it from there. This year, we knew Jena would lead the way and we received this flyer in the mail the day we asked, "Wonder where our first stop will be?"...the "13" is what convinced us.

However, the word of 'Just Thursday' must have gotten out and the rooms were booked...so we brought in the 'Big Guns', Captain Kirk himself, William Shatner...The Prince of Price negotiation ...Priceline take it away.

Hurray for Harrahs!!

Hope lady luck is on our side...because Mama needs a new pair of Manolo Blahniks

Just a few thoughts from the road...

Travel with an open mind and heart
Enjoy the Adventure that's about to unfold
And wean Marc off the country stations...

Events & Adventures

2011-11-18T21:30:00.010-05:00

4 hours

600 people

1.5 million dollars

all for Cystic Fibrosis research.

What a great adieu to the last CF event of the year…leave on a high note and a fist full of cash for the cure. I'll leave the event with hope for the future, a couple of roses, and a York Peppermint Pattie.

Ahhh, that Peppermint Pattie.

My very dear friend, Donna, makes sure there are plenty of Peppermint Patties at the Gala in memory of my little girl, Jena. “Of course they’re there!” Donna always says, “I would never forget her!”

Over a million reasons to be elated
Over a dozen CF events behind me
and only three very painful dates to now endure

I take a deep breath in and sigh as I think of what’s ahead of me. I take a Peppermint Pattie off the table, and grab Marc’s hand as we walk out Cipriani’s doors down 42^nd Street, toward our hotel.

Marc and I recap the success of evening as we stroll hand in hand in the brisk night air. I just love the vibe of New York City…all the energy, the unexpected, the excitement that defines NYC. We are here so often that we don’t even bother to read the street signs anymore; we just walk…engrossed in our chat about CF, what we plan to do about the unpleasant upcoming events, and ponder if we should stop at the great wine bar we like on 44th before we call it a night.

Together we seemed to have figured out how to get through in life what most people can’t understand. Perhaps it’s as easy as just taking that one step at a time, hand in hand, where the streets have no names. Okay maybe that last part is borrowed from Bono...

My point?

Life is hard.

Hearts get broken.

Some things are truly out of our control.

All the more reason to control how you handle it.

3 dates left to handle:
Thanksgiving
December 4^th
Christmas

They have been absolute hell for us since Jena “moved up” in 2006.

One was her last holiday with us
One date I will despise forever
One celebration that's lost it's magic

We keep trying to find new ways to breathe through them. Each year we try to make them bearable. We keep trying.

Last year we believe we found the answer. Marc & I decided to change things up a bit. We cancelled Thanksgiving, renamed it “Just Thursday” and escaped on a 10-day adventure to nowhere and didn't return home until December 5th…oh, and we took ALL our Facebook friends along for the ride. We asked, "North on 95? or West on 80?" We let our Facebook friends decide "Chattanooga or Memphis?" "Hurricane or Margarita?"

Our impromptu trip turned in to a communal escape from reality...with nothing but a suitcase, a smartphone and a sense of adventure.

Well, after our walk down the streets of NYC it inspired us to do it again. We are setting out Wednesday night for another adventure to nowhere...

…so, I'm asking, "U2?"

Adventure begins November 23rd...FOLLOW US!

Margarete McCord Cassalina |

For those of you new to this, please read "Just Thursday: The Adventure to Nowhere"

Adventure Paused

2010-12-04T22:12:00.004-05:00

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

2010-11-22T21:31:00.002-05:00

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!

2010-08-17T22:20:00.002-04:00

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

2010-07-17T08:17:00.002-04:00

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

2010-07-14T13:21:00.007-04:00

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

2010-07-02T21:09:00.000-04:00

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

2010-06-25T14:44:00.003-04:00

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

2010-06-19T14:46:00.001-04:00

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

2010-05-18T22:14:00.004-04:00

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...

You Live

2010-05-02T13:43:00.008-04:00

Yesterday, May 1st, was the most perfect day here in the Hudson Valley. Blue skies, 85 sunny degrees, a slight breeze and the best thing of all was that I had nothing to do for an entire 24 hours. That, in itself, is a fluke of cosmic inertia. I was so ecstatic about the lack of obligations that I just had to post it on my personal Facebook page to make it real.

My status for the day read as follows:

As the Type-A personality that I am, I completed the day’s task successfully.

It was around 1:30am and there we sat; Marc, Eric and his two friends, Ian and Christian, and a very relaxed, tanned and slightly buzzed…moi.

We were sitting on our make shift beach-by-the-pool around the fire looking up at the stars and enjoying the night air. It was an absolutely perfect day. Thank you, God.

Today I woke up around 9:00am to the smell of a hot cup of coffee on the nightstand…nice. I’m thinking “Yes! Repeat of yesterday!”

My blackberry starts vibrating and I grab it see what's up.

My heart sinks.
I grab a tissue.
I read the email.

Life to the Fullest

Today Emily peacefully went to a place without CF, a place where she can run, surf and breathe without worry.

Emily was 27.
Emily lived in spite of CF.
Emily was “Jena-amazing.”

I sit in bed, my stomach in knots, tears streaming down my face. When will this end? When will CF stop extinguishing the light of those who fight so hard to live? When will it be easier to breathe?

For a moment I feel slightly relieved knowing Emily isn’t suffering anymore and the torment of CF to her body is now over.

My thoughts turn to Diane and Steve, Emily’s parents, and the really ugly cry starts. They have officially joined 'The Club' that no parent should belong to. 'The Club' that reads like a bad “You know you joined the club when…”

...you live the rest of your life wondering what really matters.

...you live the rest of your life trying to accept that your child has a second date.

...you live the rest of your life stumbling over the question, "How many children do you have?”

...you live the rest of your life with a tissue box by your bed because you go to sleep and wake up with tears.

...you live the rest of your life not knowing how the rest of the pages would have been written.

...you live the rest of your life not knowing to look up to heaven or a tombstone to talk to your child.

...you live the rest of your life being able to laugh and cry at the same time.

...you live the rest of your life with a hole in your heart that won’t ever heal.

But you live.

You live because they fought so hard to live and they cherished each breath they took.

So you live…even when you don’t want to.

As Jena told me, “Pain is not a valid reason for stopping.”

Sometimes you live the perfect day and sometimes you live your worst nightmare.

Still, you live.

Thank you Emily, you showed us all how to live.

We miss you.

Far Away

2010-04-22T19:07:00.010-04:00

Flighty.

That's me at times.

Last night was no exception.

I was invited by my good friend Donna to attend Dr Oz's posh

Garden of Good and Evil Gala

in NYC.

Though very excited at the possibility of meeting Dr Oz and his beautiful wife, Lisa, I did question which side of the room they were going to seat me, good or evil?

Hmmm?

While contemplating the fundamental dilemma, I found my way to an ornate and beautifully decorated table filled with fruits, chocolates, flowers, and feathers. In less than two seconds, I had rifled through the table centerpiece and absconded with all the chocolates and effortlessly managed to never even touch the fruit...At this point I’m thinking evil side, right?

The event was fabulous.

Dr Oz was as endearing as one would assume and the wine flowed all night. Credit to the endless flow belongs to my new BFF Barry who cajoled our server into granting us two bottomless wine glasses.

Close to midnight I air-kissed a few new gala buddies “adieu” and heaved the huge goodie bag over my shoulder. Donna plucked a white rose and a white feather from our centerpiece and handed them to me.

“Here, take this” she said.

I was wondering how I was going to squeeze the items into my already overflowing stash. I looked back at her, perplexed.

“For Jena…” she said “her presence is so strong here tonight and I want you to take this to her.”

Now Donna knows how much I abhor going to the cemetery. I just can’t meld the fact that Jena’s spirit still lives larger than life, yet her physical body is buried 6 feet beneath the earth. That concept doesn’t gel for me. It never will.

Still, I took the rose and feather and promised to give it to my mother-in-law who religiously “visits” Jena.

I gave Donna a tight hug and kissed and thanked her for such a wonderful and memorable evening.

This morning came way too early and my head was hurting. I speculated Barry’s condition to be the same as I caught a glance at the enormous goodie bag overflowing with treats, lotions and assorted samples of really cool products I would never buy. Then I see the rose and feather.

Sigh.

Listening to my iPod on low, I get ready for work. My blackberry buzzes and it’s an email from Donna saying she had a blast last night and that she had Jena on her mind this morning. The email is very touching and my eyes well up.

Crap.
Now I have to re-do my make-up…again.

I put the phone down, grab a tissue and notice the song playing in the background. It’s Nickelback’s “Far Away”
It’s one of my “Jena songs.”
The lyrics I hear are:

“...Keep breathing 'cause I'm not leaving you anymore
Believe it
Hold on to me and never let me go...”

I wash my face and realize it’s going to be a “natural” make-up free day...like it or not.

I clutch the rose and the feather, swipe my car keys and take a detour to work, via the cemetery. I’ve been there twice and both times were for reasons that I couldn’t explain.

Within minutes, I pull into Jena’s cemetery, find her section and shut my car off. My tears haven’t stopped streaming since reading Donna’s email and they roll faster the closer I get to where “Jena” is. A few more steps and then I can clearly read her name etched in stone and I lose it completely.

This is why I don’t come here, yet for the third time in 3 years, here I stand not knowing why.

I look around and see “gifts” all around her tombstone. I see pennies, cards, and bubbles. I see remnants from the Junior Prom. Mike and the Milton Girls must have stopped by to make sure Jena was a part of their evening. They certainly are very special friends who'll never forget to include Jena in their lives and I love them for that.

I sit on the grass, in my suit, and I am just about to place the rose and feather among the other gifts when I am startled by my car radio that suddenly starts blaring.

I’ll give you one guess as to what song is playing….
...and one guess what the lyrics are.

“Keep breathing 'cause I'm not leaving you anymore
Believe it
Hold on to me and never let me go”

I look up at the bright blue sky as see a bird fly above me.
I’m laughing and I’m crying.
I’m still holding the rose and feather and I start talking, out loud, to Jena

“Hey there Baby Girl, I’ll keep breathing as long as you never let me go, okay?”

I'm Back

2010-04-06T22:54:00.003-04:00

I’m back...ya miss me?

Last we left I was under a bit of stress more than I can or should explain.

Suffice it to say I burnt my candle on both ends until I basically was left with nothing but a sad excuse of a stubby wick. Go ahead and giggle...it’s good for the soul.

Candle extinguished, emotionally drained, I was physically left susceptible to any germ-du-jour that came floating by. I became the host of a week-long cold that was something out of a really bad NyQuil commercial. I was so busy sniffling, sneezing, coughing, aching, sleeping for 6 days straight, I totally missed that fact that spring arrived.

The sun is out.
The buds are blooming.
It’s absolutely gorgeous outside.

I have been forced to learn along life's journey to trust Mother Nature and all her glory. She continually proves to me that life moves on. Winter will leave and the beauty of spring is guaranteed to arrive. I get that now. Change comes whether you’re ready or not.

So while I was trying so hard to conquer my world, my way; the world ever so shrewdly reminded me to s-l-o-w down and accept what is.

Someone once asked me, “Are you a good friend to yourself?”

My first reaction was, “Duh? That’s a stupid question.”
Then I realized it was a good question and I was a bad friend. I demand way more from myself than I would ever even ask from a friend. I actually take pride in the fact I do that. I am more like that Marine Sergeant from Officer and a Gentleman

who pushes you to the limits of what you are able to do.
(Those of you under 35 may need to Google my reference)

Some friend I am. I pushed myself emotionally, mentally, and now physically to the breaking point.

My body gave up and left me to battle my emotions, my inner turmoil and now the aches and pains of a nasty head cold with just tissues to ease the blow. (pun intended)

Once again I found myself looking out my bedroom window, not able to lift my head off the pillow, watching spring come to life.

By the time my head cleared, in more ways than one, I found my reset button.

I am looking forward to life’s adventure knowing nature’s got my back. It’s okay to let some stuff slide, to not always know the game plan and to trust my instincts. I look outside and see the sun shining brightly on Jena’s rose garden.

I smile and blow a kiss up to Heaven.

I grab my sneakers and decide to take a long run outside in the fresh air. Don't get me wrong, I still need to conquer the world but I think I’ll stop and take the sights in along the way.

I can still do it all.

I am woman, hear me roar.

Headed for a breakdown

2010-03-04T21:47:00.011-05:00

Headed for a breakdown.

That’s really never good.

You see, I have one week left to make Jena’s wish come true and I just don’t know how I’m going to do that. Since she was a little girl, Jena was confident that there would be a cure for CF by the time she was 16.

On March 13, 2010 at 11:02pm, she would have turned 17.

17.

That’s after 16.

Time ran out.

Again.

Breakdown time.

I just don’t know if I can live with letting her down again. I couldn’t save her from the disease that took her life. I couldn’t leave this earth with her either. And now I can’t make CF stand for Cure Found no matter how hard I try.

Her brother still fights daily to breathe and still there is no cure. Sometimes I think all the CF fund raising I do, and all the public speaking I do at CF events, and all the damn CF awareness I do is just in vain.

The researchers discovered the gene back in 1989. In 1991 when Eric was diagnosed, the doctors told me, “Just give us 10 years and CF will be a thing of the past.” Ha! I gave them way more and CF still smoldered the flame of one of God’s most magnificent lights.

I’m a failure as her mother.

These are the really bad days associated with living after losing a child, a part of you, a reason for being. I can’t get my head off the pillow. I can’t stop crying. I can’t think of anything positive and I have no anecdote for the pain I'm feeling right now.

Her birthday is next week and I don’t want to be anywhere near home. Her girlfriends will most likely drive themselves to her cemetery and sing her happy birthday and probably bring her balloons. They’ll laugh and cry and think about their special friend that changed them forever.

Our local church will have a beautiful mass said for her that day. Our family and friends will gather together and pray for her soul. Their hearts will be filled with love and sorrow.

Me?

I want to do something Jena-special. I want to do something she would think was cool. I want to do something that has purpose, meaning, and is full of love because that is where she is.

God gave me a moment’s grace and sent me an email:

Save the Date ShamRockin, March 13th

http://www.shamrockinforacure.com/

Dear Friends, Clients, and those of you around town I know like a good party and a good cause,

I am a member of the Planning Committee for Shamrockin’ For A Cure 2010 – a huge party at Verizon Wireless Amphitheater coming up this March in Atlanta. For the cost of a night out you get dinner, drinks, live entertainment and the knowledge that you are contributing to the Cystic Fibrosis Foundation...

Save the date? Yeah, I think I can do that.

Drink? Hell yeah!

The emotional cost though is too high.

Still, Marc and I will be flying to Atlanta to be with wonderful friends that care so much, to do whatever they can, to make a difference in the lives of those battling cystic fibrosis. They have no other reason to be involved other than that their hearts were touched by our family and they wanted us to know that Jena’s life, Eric’s life, and my constant fight against CF is not in vain.

Call it coincidence, but I have long given up on that…I call it God’s grace intervening yet again.

I’m a mess, that’s nothing new. I cry, I breakdown, I curse that I’m still alive. Then I think of how hard Jena fought for each breath and how she smiled in extraordinary circumstances.

So where will I be at 11:02pm on Saturday, March 13, 2010?

In Atlanta, laughing with amazing friends, sharing a few tears, raising funds and awareness for CF but most of all, I’ll be toasting one of God’s greatest angels, my beautiful daughter…

Jena Marie Cassalina

“Happy Birthday, baby girl.

I love you more than words can say…
I love you more and more each day.”

Xoxoxo
Mommy

Move

2010-02-27T16:54:00.000-05:00

It seems the older I get, the harder it is to move. When did that happen?

Even at 41, I know that if I don’t m-o-v-e, my body gets stiff, my energy lessens, and my mind eventually follows suit. It’s not long before I find myself plopped on the couch still in my PJs, watching some reality show, inhaling a half gallon of Ben & Jerry’s Cherry Garcia ice cream.

The problem is the longer I sit, the harder it is to move. It gets to the point that moving will hurt. My back aches, my head is in a sugar fog and the energy I used to thrive on has become depleted from yelling at pathetic women on TV who are in desperation to receive a rose…

Yet there I sit.

Inertia at it's best.

Sometimes I don’t want to move forward because that means I have to face where it is that I am. I have to face that what I had is gone. I have to find a new way to be.

For me, the hardest most painful time to move forward was after losing Jena. I didn’t want to do anything and moving forward was not an option. Moving forward was just too painful because I knew my future did not contain Jena. She resides in the past, in memories...or so I thought. I chose to just numbingly stay lost.

Moving forward after losing a child is almost next to impossible. Time moved on whether I wanted it to or not. Winter passed, spring had arrived and I was still unable to move. Moving hurt.

What I had forgotten was that I had always loved life. I loved showing the world and all its wonder to my kids, I loved to laugh, I loved to be active, and I had raised my kids to know that life is certainly worth living. I just forgot.

It was months before I noticed that spring had arrived. From my bedroom window I could see life come back in to nature and that time mercifully moves forward.

It’s never easy to take that first step. I don’t care if it’s getting off the couch and going for a run or putting the bottle down and choosing to get back into life. That first step is always a choice and is rarely easy to do.

Right now it’d be easier to sit here, take an Advil for my backache, and stay in bed eating comfort food that makes me feel momentarily good. But that’s just not me.

Life is just too spectacular to waste on the sidelines; you have to be in the game to feel the victory.

Sometimes moving hurts but in the long run it’s the NOT moving that’s the most painful. I know Jena is with me always in laughter and in tears and I also know she would so kick my ass for wasting a single breath.

Time to choose.

Time to move.

Time to put down the remote, chuck the ice cream and grab your sneakers....and come meet me at the amazing race called: life.

L-O-V-E

2010-02-14T12:58:00.004-05:00

Of course I’m going to talk about LOVE…it’s Valentine’s Day for crying out loud.

Until it is replaced by Ground Hog Day bears and Arbor Day cards, Hallmark’s annual revenue will continue to be subsidized by Valentine’s Day paraphernalia followed closely by Mother’s Day plaques, flowers and trinkets.

February 14th is the day that is jammed down everyone’s throat to express their love.

Gag.

Don’t you know that every kiss begins with a jewelry store and the only way your love is measured is by how high the price tag is?

In my opinion, the only way love is measured, or is tangible, is by your children. They are the embodiment of your heart, with little arms and legs attached, asking for money and the keys to your car. Yup, those little buggers can drive you nuts and melt your heart in an instant.

I can remember the exact date and time when I fully understood what true love meant.

It was 1:13pm.

…on Wednesday, Nov 29, 2006

…at Westchester Medical Center

…in the ER

That was when I was told that my daughter’s lungs had collapsed and they could not fix them.

(Excerpt from Beyond Breathing)

Dr. Smarty-Pants told me that if they didn’t intubate Jena—meaning, put her on a ventilator to help her breathe, to help her exchange the oxygen—she would crash, and there would be nothing they could do to save her.

Once she was intubated, she would be unconscious. The only way we’d talk to her again would be after her double lung transplant, which would take place 500 miles away in Pittsburgh, Pennsylvania. As yet, there was no donor and we were still in New York.

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.

Try to breathe.

She was wearing a bipap machine that covered her nose and mouth to help her breathe, but she was alert and awake and could talk to me. Jena, like a mother compassionately caring for her child, looked at me and gently shook her head left and right and slowly gave me the most remarkably tender smile. Her eyes looked so deeply into my eyes, like never before. It felt as though she was reaching into my soul with her eyes, and I could feel it. I looked back at her with my bloodshot eyes, sniffling, and my hands shaking in hers.

Jena just said, “Mommy, I love you.”

There were no tears in her eyes, and there was no fear, either; no screaming, no asking why her. Jena in her infinite wisdom knew that love is the greatest of all. All this chaos was inconsequential. Love is what is immortal. Her love for me and mine for her were untouchable. Jena knew love is the only answer. Now I know that, too.

(end)

That is what love is. It is untouchable, unbreakable, and it transcends into the hereafter.

Love never ends.

And that is priceless.

I can hear you saying, “I get what you mean, but I like the chocolates, the diamond heart-shaped necklaces, and the candlelight dinner out.” Listen, by all means take advantage of a perfectly executed marketing campaign, I certainly do. I’ll be the first to say, “Just hand over the chocolate and no one gets hurt."

But do me a favor this Valentine's Day. Go find that special someone, stop them dead in their tracks, and look deeply into their eyes and say, “I Love You” and mean it. Then tell me that’s not worth your weight in gold.

Now go share the love.

Livin' On A Prayer

2010-02-04T22:16:00.010-05:00

How do you live?

Are you living for the moment?

Are you living in the past?

How about, living on a prayer?

No, not the Bon Jovi song

…the real prayer

…the kind you say when you've got nothing left to hold you up.

…the kind that knocks you to your knees and your only option is prayer.

You’ve had those days I’m sure. You pray your father makes it through surgery. You pray your 18 year old daughter makes it home safely from college during a winter storm. You pray the doctor says you're in remission.

Then there are those days that cut you to your core.

You’re breathing, but you're not alive. You’ve got nothing inside to hold you up anymore. You've got nothing to lean on. Nothing but prayer. Religious or not, you find yourself asking, begging and bartering with God to lift you out of wherever it is that you are. You’re lost and you don’t even know how to ask for directions.

I’ve been there.

I remember looking up and screaming, “GOD, I CAN’T DO THIS!”

That was my prayer. That was it.

That prayer was my request that He would take me too, like He took my Jena. But for some unknown reason He left me here, barely breathing.

My prayer was answered.

I’m still here because of the love that surrounds me…namely my girlfriends. These fabulous ladies saw to it that I got out of bed before noon, ate something each day and sat with me for hours on end; sometimes never saying a word. They took care of everything. They did this for weeks. They fed my body and soul. And people say I’m strong. Ha! I couldn’t breathe without my girls.

Looking back, I know that talking with God, screaming at God, praying to God is sometimes all you need to do and then trust Him do the rest.

What is the ultimate prayer? “Thy will be done.”

Jena and God saw to it that you can live on a prayer.

Maybe Bon Jovi had it right all along…

Peace Out

2010-01-30T18:37:00.019-05:00

For the second weekend in a row, Marc and Eric were supposed to go upstate snowmobiling with “the guys.”

They love it.

I love it.

Another win/win.

They were looking for some rugged manly adventure and I was looking for some peace and quiet. Well, peace is out for this weekend. Last weekend there wasn’t enough snow and this weekend it’s 2 below.

Change of plans.

Instead of a quiet weekend to myself, a very large poker game is ensuing bringing with it high levels of testosterone and talks of anything with a motor.

Lovely.

Jena and I would balance that out with trips to Barnes & Noble, a good ‘chick flick’ or at the very least making fun of those ‘dirty’ boys. But life’s sucker-punch left me to fend for myself among the world of men. I’m sure she is laughing at me from heaven.

It’s crazy in this house now with college boys in and out all hours of the day and wee hours of the night. Don’t get me wrong, it’s all good. I think it’s great that Eric is surrounded by his friends and it’s kind of nice they all call me “Mom.”

But peace…well, that’s not happening here and certainly not tonight.

Life as I knew it is over. I don’t have my baby girl to even out the odds. I don’t have the life that I thought I signed up for either. And now, I don’t even have the quiet weekend I was looking forward to. The reality is that life is constantly changing and I have to learn to change with it.

I hear them dealing the cards, the chips falling on the poker table, and they’re calling my name. Guess it’s time to show those boys how to play Texas Hold ‘Em. I take a deep sigh, smile and grab my wallet. Sometimes when life throws you curves, you just have to adjust and find a new adventure…

...and besides, I have an angel up my sleeve.

Peace out!

Serendipity

2010-01-24T16:14:00.012-05:00

Serendipity is the effect by which one accidentally stumbles upon something fortunate, especially while looking for something entirely unrelated.

Kind of like:

Silly Putty by James Wright, which was created while trying to find a rubber substitute for the United States during World War II.

Good ‘ol boy Chris Columbus who was looking for a new way to India in 1492 and wound up landing in The Americas. I’m guessing he didn’t stop and ask for directions either.

And even

Yes, that little blue pill that has changed the smiles on middle-aged women everywhere. It was originally directed for use in hypertension and angina pectoris-- who knew the claim to fame it would have?
(...everyone should enjoy a giggle now and again...)

Back to the blog...
Serendipity, for me, came by way of life.

After Jena passed away from cystic fibrosis, I was certain I was on track for depression and grief. Everything I had once known about life was ripped out from underneath me and I was left completely and utterly lost.

Somehow while on this path of death and destruction, I found life.

While writing in despair, I found an optimistic voice. I found the more I wrote, the more life seemed hopeful, dare I say, beautiful. I had found a way to carry on in life… totally accidental.

I found a way to immortalize my baby girl who was, for all intense purposes, gone from this earth. I found an outlet for my depression which created huge awareness for cystic fibrosis, the very thing that put me in the state of misery. And, fortunately for you, I have now found a new way to express my sad, and pathetic sense of humor while hoping I make a point at times.

My point?

You just never know where the road you are on will take you.

Don’t give up.

Keep the faith.

What fortune will you unexpectedly come across?

To Serendipity Baby!

Breathing

2010-01-17T11:02:00.009-05:00

Breathing directions:

Inhale.

Exhale.

Repeat.

Seems straight forward enough, right?

For most of us breathing is involuntary, a non-issue, basically…easy.

I mean really, how many times does breathing cross your mind?

When you’re scared?

When it’s your 83th birthday?

Or when you sat too close next to someone who just couldn’t hold it in.

Most of the time we take breathing for granted, I mean why wouldn’t you? Between everything else you have going on in life, thank God breathing’s not something you have to concern yourself with.

And then there are those who fight for each breath.

Each moment.

Their whole life.

My daughter Jena most certainly did.

She was born knowing each breath she took was precious.

I’ll never forget one day Jena was feeling really, really good. Her whole face smiled as she said excitedly, “Mommy, Mommy…wow! I feel great. I can’t believe how easy it is to breathe today!” She kissed me on the cheek and ran off to play.
To her breathing was special.

Like many others that have a lung disease, Jena did all she could to add a year, a month or even a day to her life.

I know I treasured each breath she took. I knew there were very few that were ever wasted. She would rock climb, ride 4-wheelers, and do all she could to keep up with her older brother. Jena ran full tilt when she could and enjoyed each day to its fullest.

Time is like oxygen. You’ll never notice until it is gone.

There's no time to kill between the cradle and the grave
Father Time still takes a toll on every minute that you save
Legal tender's never gonna change the number on your days
The highest cost of livin's dyin', that's one everybody pays
So have it spent before you get the bill, there's no time to kill
(Clint Black)

When time runs out, will you have made the most of your breath?

Win-Win

2010-01-10T16:18:00.018-05:00

Oh my God we are going to crash!

Okay, maybe that's a bit melodramatic but tell me you haven’t had that thought cross your mind 30,000 feet above the ground?

Right now I am sitting on a plane headed south for Florida.

This time it's not to run away from myself and my feelings of grief but to celebrate my 19th wedding anniversary with Marc and that is a good thing.

By now you know I don't believe in coincidences so the universe sat me next to a lovely woman who lost her husband of 25 years just 3 months ago.

Normally when I fly, I politely say, "Hello" to my 2 hour neighbor, listen to my iPod and work on my laptop while Marc watches the news. However, this time I met a friend. Why was this time different? I don't know but I am sure John (her husband) and Jena worked that out in heaven.

Karen told me about his struggle with leukemia, his many hospital stays and how her days now seem empty and without purpose. Boy, I get that. We exchanged smiles of memories and tears of grief.

It's amazing who God puts in your life at particular times, isn't it? Somehow He just knows who needs a shoulder, an understanding ear and a new package of tissues.

As I sit here eating my bag of sweet potato chips, I remember how fearful I used to be of flying. Marc was way worse. His hands would be all sweaty and regardless of the time, he’d have a cocktail or two during the flight. A few years ago, Marc would have actually preferred to be flying the plane instead of sitting here in 4B; naively believing he could control all aspects his life, his outcome, and his fate.

Control is something we all seek out of fear. Fear of what we can’t control. Fear…well,…Jena took all our fear with her when she left. Just like the Serenity Prayer, we have learned to know the difference between what we can control and what we have to let go. I now trust in God to get me to my destination, and I trust the captain to fly us to where we want to go.

Marc and I have learned to take responsibility of what we can control like our marriage, our careers and our little romantic getaway weekends. The stuff we can't, like losing Jena, we have learned to leave to God, the universe or whatever it is that seems to be in control of it all.

So this flight is a win-win.

We win and land in Orlando, chillin poolside sippin something tropical or we win and get to meet God face to face knowing Jena is sitting right beside Him. I really don’t see a downside.

I trust the pilot and I trust God to get me where I need to be.

I bought the ticket to Florida and I expect to get to where I am going.

I bought the plan that I will enjoy the journey that I call 'life' and I expect to get there too.

Life is good and no matter how you look at it, it's a win-win.

Do you know where you are going?

Promises (originally written 12/09)

2009-12-30T20:52:00.014-05:00

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

2009-12-26T18:09:00.004-05:00

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.

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

2009-12-17T22:40:00.016-05:00

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

2009-12-04T09:57:00.003-05:00

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...

2009-11-29T11:48:00.034-05:00

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!