Margarete Cassalina

Waiting is the hardest part…

Margarete — Sun, 19 Feb 2012 13:58:52 +0000

The other day I was excited to meet, in person, my Facebook friend who is a young, newly engaged, inspiring woman who happens to have cystic fibrosis…and is being evaluated for a double lung transplant. We were to meet for coffee at the local Starbucks close to her home.

It never ceases to amaze me that those who have to work so hard to breathe do it with beautiful grace and smiling gusto.

I ordered my double mocha soy latte, venti of course, and waited.

…and waited

Then I got worried.

She hadn’t answered my texts.

And then, she did.

She told me she was sorry but she had a fever, was coughing up blood, and was currently getting a PICC line placed in her arm for IV antibiotics.

And she told me SHE was sorry…my word, this amazing young lady, going through ALL THAT said she was sorry for not making our coffee date.

Unfortunately, as an experienced CF mama who has seen it all, I know what her days are like. I know fevers, coughing up blood, oxygen tanks, and transplant evaluations…and I certainly know how much energy it takes to just meet out for a simple cup of coffee.

With tears in my eyes, I texted her back and told her to take care of herself, that I’d be thinking about her and by all means, no worries! After all I live by the mantra, “Plans…always subject to change at a moments notice” and told her we’d do this again when she was ready.

I took my latte with me and got back in my car and drove to the beach…I always find peace there.

I needed peace in my heart because my mind raced back to when Jena went for her lung transplant evaluation, was accepted…and then never received them.

I needed peace.
I needed to pray.
Selfishly, I needed her to be okay.

At the beach, I sat close to the water, dug my feet in the sand, and looked out at the horizon and cried. Why with so much beauty in the world, do amazing people go through so much pain?

Or is it us who are in so much pain witnessing them give all they’ve got, all the time, to simply breathe? They never seem to complain, but rather they tell us they’re sorry.

Once my pity-party-for-one was over, I thought about my Facebook friend…I’m sure she’s doing her thing, afterall it’s the life she knows. I’m sure she’s going about her “normal” life with IV and oxygen in tow because that’s what she does and I bet with a smile on her face and a loving fiancé holding her hand.

I decided to sit back and finish a book another CF friend of mine wrote. He’s 35 and it’s all about things you wanted to know, and perhaps didn’t want to know, about living with cystic fibrosis. I turn the page.

About a dozen chapters later I stop reading to give thanks for the sun, the sand, and the peace it brought me.

I am truly thankful for being so blessed; to be able to feel so deeply, to love with everything I have, and to continue to do all I can to help those with CF breathe easier.

Then I look up to see this…

And I can’t help but think 3 things…

1) Though I may fall, I’ll never stop trying to soar

2) Though I may cry, I’ll never stop finding beauty

3) And though I may not have any idea how to order anything but a double mocha soy latte, venti (Thanks Pastor T!) at Starbucks, it’ll never stop me from waiting for a friend to walk through the door.

P.S. And of course knowing Scully is never far

Get a Clue

Margarete — Thu, 16 Feb 2012 00:48:36 +0000

Remember the challenging board game: Clue?

The object of the game is for players (characters) to strategically move around the game board (a mansion), collecting clues from which to deduce which suspect murdered the game’s perpetual victim: Dr Black, and with which weapon, and in what room.

I loved the game as a kid because you had to gather information, you had to think, deduce, and render a conclusion. It seemed like a wonderful journey and adventure in mystery… I was fascinated by the whole concept. I might guess wrong, but even the wrong answers brought me closer to the correct result. I loved wondering…who did it?

Life seems to be it’s own adventure. Ask the right questions. Make an effort. You get to decide.

Many people ask me how I stay so positive. Ha! to know me is to know I work very hard at it. You think it’d be easy. But it’s a choice I make every single day.

I gather information: Do I have all the facts? Did I listen with an opened mind and heart?

I deduce: Is this worth being happy or sad about?

I conclude: I choose to be happy. I choose to not let this break me. I choose my own conclusion.

It is not what happens to us, then we’re just helpless victims. It’s what we choose to do about what happens that makes the difference in how our lives turn out.

Now mind you, this way of thinking didn’t happen over night. I’ve had enough pain in my life to live angry at the world until my last breath. But one day I sat down and wondered who am I? and where am I going?

That day I wrote a mission ‘statement’ about who I am and where I am going.

(my mission…rather long…statement)

“I will continue to grow emotionally and intellectually and enjoy the journey that is my life. I intend on doing this by reflecting on past experiences, grasping new concepts, and seeing the big picture.

My life’s adventure will continue to challenge me with possibilities and opportunities.

My book, Beyond Breathing, will be the basic catalyst with which I will utilize to help those with grief, and create more CF awareness and understanding of Cystic Fibrosis. I will actively seek to be inspired and aspire to be inspiring.

I will live with purpose and meaning. I will most certainly continue to be a dedicated volunteer to the Cystic Fibrosis Foundation as a fundraiser, advocate, and voice for those who battle this disease.

I will seek enjoyment and fulfillment in my personal life through reading thought provoking books, writing with candor and contemplation, and spending quality time in meaningful conversations with family, friends, and complete strangers.

I will continue to delight in the value of my family: my husband, our son, and all whom I define as family.

My quest is to evolve into the person I was meant to be in life. I want to be the person who has faced her childhood fears of inadequacy and now has the tenacity it takes, and has learned the skills needed to face future unknown obstacles with strength and grace.

I will strive to incorporate attributes like: passion and perseverance, inspiration and motivation, friendship and love, in my life. I will regularly focus on taking care of my mind, body, and soul while I pursue my objectives.

I will trust myself not to lose faith in my ability to overcome challenges.

My character goal is to be known for having integrity, persistence, and passion for life, knowing my most valuable commodity is my time and my most cherished possession is the ability to love.”

Yup…that’s it…me on a mission.

I believe you always have a choice on how to see life, and the one constant I found in life is that it constantly changes.

Some things I’ll choose to cry over and some things I won’t.

Some things are worth my time and some things aren’t.

Some people make dreams happen while other people make excuses.

I know I’ll make wrong choices, but they certainly won’t be because I didn’t live in love and passion.

Just think of Miss Scarlet…could she have done it in the kitchen…with a dagger…you’ll never know unless you get in the game.

Remember, it’s your life. Game on.

Now, about your life…

…if you don’t decide “Who did it?” someone will decide for you.

So, don’t sit on the sidelines…take action. Roll the dice.

Do NOT waste your life at work or on the couch…balance work and life…and have some fun, will you?

Find your mission and make your dreams come true!

Oh and here’s a clue: make the choice…and forget the bored games.

Valentine’s Day? Give me a break!

Margarete — Wed, 08 Feb 2012 03:23:02 +0000

Chocolates?

Roses?

Fine wine?

Sure those are great “gifts” for one day…One Hallmark ingeniously executed, cash cow of a marketing campaign, DAY!

But what about a random Tuesday afternoon when your sweetie is sick with the flu and the kids are screaming and you are fresh out of Calgon?

What then?

Where’s the mushy gushy lovefest?

Whether it’s one day or 72 days…be real.

Don’t let the fantasy replace the reality.

The reality is…Love is:

(quoted from a very reliable source)

“Love is patient. Love is kind. It does not envy. It does not boast. It is not proud. It does not dishonor others. It is not self-seeking. It is not easily angered. It keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always preserves. Love does not fail.”

Love is the greatest gift of all.

This year Marc and I celebrated our 21st wedding anniversary. To some of my friends, we’re still considered newlyweds, to others they question, “How on earth have you not killed each other by now?”

I tell them it’s all due to our morning coffee.

Marc asked me 21 years ago what would it take to make me happy. I half jokingly answered, “Wake me up with coffee every morning.”

Well he has and I am…happy that is.

So for the past 21 years, (mostly) each morning he brings me coffee and we spend anywhere from 15 minutes to hours on end talking about our day, reflecting on our yesterday, how we could be better parents, and, of course, how we could solve all the world’s problems if they would only listen.

Life can be hard, no doubt.

Life can hurt like hell.

Sometimes you just need a break, a coffee break that is.

The best part of waking up is…with your best friend…and ‘Folger’s in your cup.’

So this Valentine’s Day consider forgoing the box of chocolates for a cup of Joe…’it’s good to the last drop!’

and who knows, maybe that 15 minutes a day could last a lifetime.

You didn’t think I’d stop wearing red, did you?

03/10/2012 — Atlanta, GA “ShamRockin for a Cure!”

Margarete — Wed, 25 Jan 2012 15:27:21 +0000

EAT, DRINK & CURE CF!

Margarete will speaking at SHAMROCKIN FOR A CURE!

Saturday, March 10, 2012

7:00pm

At the Verizon Wireless Amphitheater in Alpharetta, GA

SHAMROCKIN FOR A CURE!

Come and enjoy some great music, food and great silent auction items!

Please support the CYSTIC FIBROSIS FOUNDATION in making CF stand for CURE FOUND!

When else do you get a chance to make a difference on a Saturday night?
Buy your tickets now! Purchase Tickets for Shamrockin Here
Even if you can’t make this trip, you can still make a difference and VOLUNTEER!

Questions about SHAMROCKIN FOR THE CURE? please click here

Believe…LOVE is what’s for Christmas

Margarete — Fri, 09 Dec 2011 15:07:00 +0000

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

Margarete — Mon, 05 Dec 2011 03:58:00 +0000

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 ENDSand 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

Margarete — Sun, 04 Dec 2011 03:04:00 +0000

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 Escaladewas 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 nothave bartenders…

Trucks are notfilled with coffee…

And alligators aren’t the onlycreatures to fear in the Florida Everglades…

I’ve shared our Jena moments with you that I thought you would enjoy but the bestmoments 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

Margarete — Sat, 03 Dec 2011 01:31:00 +0000

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

Margarete — Thu, 01 Dec 2011 13:18:00 +0000

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 touristsdo 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

Margarete — Thu, 01 Dec 2011 01:44:00 +0000

Co-Captain’s log…Stardate 11.30

Hello, Key West!

Sunset & Margaritas