Margarete Cassalina, author of the memoir, Beyond Breathing , will be speaking at:

4:00 – 8:00 PM

9 Ambleside Lane
Bridgehampton, NY

Please join us for the 7th Annual Breath of the Hamptons, hosted by Jeffrey Altman at his Bridgehampton home. The event includes a delicious buffet presented by “Fresh Flavors”, open bar, music and entertainment for the entire family. Your support of this event over the last 6 years has helped raise over $1,825,000 dollars for CF research and therapeutics programs. Please join the CF cause and together we can prolong the quality of life for all those living with cystic fibrosis. Your participation brings us one step closer to a cure and we thank you for your consideration and generosity.

For more information, please contact Shari Edelstein at 516-827-1290 or sedelstein@cff.org.

Click here for more information regarding 7th Annual Breath of The Hamptons

In heaven.

This is a CELEBRATION of her life…join me won’t you?

Scroll with me for a minute down memory lane…

Jena was born to live two worlds.

She was special (and messy) from day one.

She wore her own style…always.

She didn’t cry over ‘spilled milk’ even if it was chocolate.

She truly was a STAR.

She had a knack for getting people (her brother) to do things…

And she was never good at following the rules.

But she was always there if you needed her help.

Jena spent way too much time in hospitals due to Cystic Fibrosis.

But even the hospital couldn’t keep her from making the most out of it.

She had countless procedures and surgeries…

But again…she’d steal the hearts of everyone with her determination and style…no matter where she was.

And just because she was on oxygen to help her breathe…

It NEVER stopped her from doing things she loved. Like skiing with her brother:

Wall climbing…

Riding her 4-wheeler…

Eric, Jena and cousin Dane

Traveling to MEXICO…

Or going to PARIS

NOPE.

It certainly never stopped her from being goofy with her friends.

Or enjoying special occasions.

Jena was an advocate and fought for Cystic Fibrosis at a young age…and even donated her lungs to science.

She talked to people about CF, and thanked them for their support.

Sportscaster/Writer Frank DeFord with Jena & Eric

Jena loved her family more than words could say…

And she ALWAYS had a lot to SAY!

She was an original that’s for sure.

And creative…

And funny…

She took in all the fun of life.

And was wise beyond her ‘ya-ya’ years.

She was the best teacher I ever had.

She taught me that no matter what struggles you may face in life…

Or how tired you are…

Never forget to laugh with all your might!

even when the going gets tough…

Life lessons: GET DIRTY

BE UNIQUE

Take the wheel of your own life

Show the world your smile

Because you are beautiful, always and forever…

My dear Jena…I love you more than words can say…I love you more and more each day.

…you are so very loved and missed by your family…

So on your 20th Birthday…I will be taking my 13 pennies with me all day and ‘leaving them’ where I go in honor of you, your inspirational life, and what you have taught all whom you have touched in your short 13 years here on earth.

13 pennies…for 13 years here on earth…for your birthday 3/13/13…for the lucky people who will find them. ♥

Happy Birthday baby girl…♥

I love you,

Mommy

Now go ROCK heaven! xo

CF does not define him…never has…never will. Eric defines Eric. Period.

You’re invited to join us for the 28th American Airlines Celebrity Ski Weekend, presented by CocaCola and others, which will be held Feb 28 – March 3, 2013

We Put the Fun in Fundraising

You’re invited to join us for the annual American Airlines Celebrity Ski Weekend. You’ll enjoy world-class skiing, fabulous food and extraordinary entertainment to benefit the Cystic Fibrosis Foundation. And, you’ll be pampered with an all-inclusive tour package tailored for our list of celebrity skiers and guests. Best of all, you’ll be helping in the fight against cystic fibrosis.

So far the event has raised over $30 million dollars. Due to recent advances in gene and drug therapy, we are closer than ever to developing a viable treatment—but we need to continue important research and fund-raising to reach our goal of making CF a disease of the past.

Last year’s event was a huge success!

Come join us for world-class skiing on the slopes of Vail, meet and compete with celebrities, and enjoy a weekend filled with skiing, entertainment, fine dining and fun.

Last year’s event was a tremendous success, raising over $1 million, and this year’s event should surpass it.

Margarete Cassalina, author of  “BEYOND BREATHING” is thrilled to be a part of the event, speaking on behalf of CF families, The Cystic Fibrosis Foundation, and CF volunteers.

Lodging: Vail Colorado – The Quintessential Ski Resort

Considered by most to be North America’s premier ski destination, Vail offers the most skiable terrain of any mountain, the legendary Back Bowls and the most expansive network of high-speed quad chairlifts anywhere. Nestled at the base of the mountain, Vail Village boasts a rich variety of activities, charming shops and eateries. Vail is world-class in virtually every category.

Vail Cascade Resort & Spa: Vail’s Premier 4-Diamond Resort

Accommodations for participants in the American Airlines Celebrity Ski Weekend are at the Vail Cascade Resort & Spa. The hotel’s state-of-the-art facilities, luxurious accommodations and attentive staff will make you feel truly pampered during your stay. Conveniently located just steps from the base of Chairlift 20, the hotel offers guests the ultimate ski-in/ski-out experience.

For more information on the resort, please visit their website at:  Vail Cascade Resort & Spa.

Click here for: Information regarding 2013 American Airlines Celebrity Ski

More information regarding:  The Cystic Fibrosis Foundation

12th Annual Cystic Fibrosis Valentine’s Gala

 February 16, 2013

5:00 PM to 11:00 PM

Crowne Plaza Reading
1741 Papermill Road
Wyomissing, PA

12th Annual Valentine’s Gala with dinner, entertainment, huge selection raffle, and dancing to the music of “Simon Apple” – featuring a special presentation by Margarete Cassalina, author of  “BEYOND BREATHING”

Cystic Fibrosis Valentine’s Gala, February 16, 2013

* Sell-out crowds over the last 6 years with an average of
550 guests over the last 11 years

* Hosted 670 guests in 2012

* Annually provides supporters with logo and brand
recognition to over 2,000 members of our community

* Considered one of the hallmark events of the Greater Reading area

* Aligns sponsors with a highly respected charitable
organization making a profound difference in the
lives of children

* Offers corporate engagement through event participation at a lively, fun, and meaningful event

* Has raised over $600,000 to fight the life-shortening disease of cystic fibrosis

* Puts local corporations in the “Good Company” of
other community-minded businesses who, together,
have supported the Valentine’s Gala with over
$200,000 in Sponsorships since its inception

For more information or to sponsor the event: Sponsorships for The 12th Annual Cystic Fibrosis Valentine’s Gala

Contact information regarding event:  Cystic Fibrosis Foundation’s Northeastern Pennsylvania Chapter

Ok raise your hand if you remember the TV series, In Search of…?

Yes?

Then like me, you’re old too.

Remember the TV Series started with this narrative after that eerie music:

“…This series presents information based in part on theory and conjecture.The producer’s purpose is to suggest some possible explanations, but not necessarily the only ones, to the mysteries we will examine….”

Well, today’s blog I’ll be examining the mystery of… “being ok.”

If you’re reading this then you know my story.

You all know what this time of year does to me and quite honestly, I’m in a desperate search of how to be “ok.”

Grief is an amazing weapon…it truly knows no sense of time and the pain cuts just as deeply even though years have passed.  I try to hide from it, change life up a bit, do whatever I can as to NOT to feel that raw jagged pain as severely as I do.

To attempt to lessen it’s blow, Marc and I have taken a few Adventure Trips to Nowhere during this time which really worked out well. We loved taking you with us on our journey, sharing all our mishaps, our crazy adventure, and all the touching “Jena sightings” along our drive.   But unfortunately, this year that adventure would have taken 15 days; too much time for Marc to be away from work. So this year we broke the traveling adventure up into 2 separate destination trips.

Trip One: Destination–Atlantic City.

Marc and I spent our 4-day Just Thursday Trip not eating Turkey, seeing James Bond 52’ high at an IMAX, and winning $108 for The Cystic Fibrosis Foundation because everyone gave us their ‘lucky’ number on Facebook and 3 numbers hit!

$108 to The Cystic Fibrosis Foundation

Atlantic City’s new slogan is

…so we did.

We did what other AC ‘Just Thursdaians‘ DO…we gambled on a better outcome. Sure, we know our hand has already been dealt but we are all trying like hell to play the hand the best we know how. Winning isn’t all about Charlie Sheen and money…sometimes it’s simply about not folding when the pressure is unbearable.  Together all in, we came home winners.

Trip Two: Destination–The Big Easy, NOLA…New Orleans.

I have to confess I have no idea how the next few days will play out…I guess that’s just a Big Easy Adventure in itself.  However, you may want to send out good wishes to these fine folks:

Marshall & Lisa Martin

Marshall has known Marc since they were 5 years old, they have seen us at our best, our worse, and everything in-between. I have a feeling they’ll be seeing that all again in the next 5 days as they accompany us…

In Search of…some street Jazz, crawfish, and a couple Pat O’Brien Hurricanes

In Search of… really cool Jena sightings

In Search of…learning to be ok when you’re not

…these are the mysteries we will examine…wanna come?

Bring your beads, smell the gumbo, and enjoy the sounds of Bourbon Street.

We’re outta here!

******************************************************************************************************************************

The Gift of LOVE…it’s a one size fits all.

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.

5 years ago I changed the way I do Christmas.

5 years ago I started a new tradition in our house.

5 years ago I stumbled upon the “Jena Box’

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.

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 after …Just Thursday… (The holiday formally known as 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, we address the “gift”  to Jena, and slip each card in the wrapped Jena 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 Sunday, December 23, 2012.  

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 all our Jena gifts 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.
And LOVE truly is a ONE SIZE fits ALL.

Now go GIVE some LOVE !

For all those who don’t understand our “Just Thursday” here’s a RECAP:

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.

(She’s at the head of the table, with my arm on her chair) 

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.  Her anniversary is my personal hell; it’s the Thanksgiving and Christmas season that she’s not a physical 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.”

3 years ago Marc and I tried something new…we cancelled Thanksgiving.

Yup.

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

Why?

I just couldn’t bare to 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 would get 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.

It worked beautifully. Jena was with us all the way and so were all my Facebook friends as I blogged about it daily.

So we did it again last year…but added 3 more days of Adventure and made it a “13-Day Adventure to Nowhere” and it was so heart warming how many of  you went along for the cyber-ride.

Hell Week was slowly being defeated.

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 6 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.

…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.

We knew we can’t run away from the pain but we rather re-framed 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.

Atlantic City

Healthview interview

Margarete will be taping Cablevision’s ‘Health View’ (airing to be in November 2012)

Topic of segment, “Cystic Fibrosis: Getting Closer to a Cure”

To get involved, please visit: The Cystic Fibrosis Foundation

Enjoy some wine and hors d’oeuvres

Thursday, September 13, 2012
6:00pm-8:00pm at The Fort Orange Club
110 Washington Avenue, Albany NY

Gentlemen please wear jackets

With remarks from:

DONNA CLARK: Executive Director,  Northeastern NY Cystic Fibrosis Foundation

and

STEVE RICH: Senior Director, Milestones II, Cystic Fibrosis Foundation National Office