Guest Bartender

This was the question slash compliment from the cashier at Publix this morning.

“Thank you, yes they are, and so are the wrinkles.” I answered; covering up my inability to take a compliment by my self-deprecating humor.

It was not the first time I had that question but I am always surprised to hear it. After-all, I look through my eyes not at them.

Shopping this morning, my hair was in a ponytail, I was in a T-shirt, shorts and flip flops, not a speck of make-up on, and I had just taken off all my acrylic nails. You want to talk about a perfect disguise, it’s me unplugged.

I believe we all have a public side, the one we share with our children’s teachers, a potential boss during an interview, a first date. Who wouldn’t put their best foot forward?

Then there’s our personal side, the one our spouse sees, our kids, and our best friends. They are the ones who have seen me like this, along with witnessing my emotional breakdowns, many times and amazingly, they love me the same.

“You’re so real, so raw…” is another compliment I have heard once people read my book, Beyond Breathing. If they could see the real, raw me now…oh, the horror!

The funny thing is about being a writer, I can be brutally honest with words, but be completely out of my comfort zone under the scrutiny of the public eye or a HD camera zooming in for a close-up.

I think we all can relate, one time or another, to misconceptions and perceptions of what is assumed of us and what is real.

This is real.

My 43 year old blue eyes wear -4.0 strength, clear daily contacts for Astigmatism. Eye doc says I’m not a good candidate for Lasik surgery due to fluctuating muscle spasms in my eyes.

I have a hole in my heart, not the figurative hole that Jena left when she moved up to heaven, but an actual PFO, patent foramen ovale.

A little history, awhile back I had a transient ischemic attack (TIA) which is like a mini-stroke. Through series of tests with Neurologists and Cardiologists, it was determined that I had a blood clot that went to my brain (TIA) due to the (PFO) a.k.a. hole in my heart, and as it turns out, I also have hypertension for which I take blood thinners and beta-blockers.

My dermatologist has taken off 3 superficial basal cell carcinomas (a type of skin cancer) from my skin due to childhood sunburns. She says she’s impressed how calm I am as she cuts into my skin like swiss cheese. We have a standing date every 6 months.

I have had a complete lumpectomy and reconstruction in one breast due to multiple abnormal needle biopsies that concluded with a removal of a massive irregular fibroadenoma. I won’t tell you which one was done, as that is only for my husband, my oncologist, and my plastic surgeon to know. I’m just thankful I do not have breast cancer and both ‘girls’ got a lift in the process.

After a few visits to the ER for excruciating leg & back pain, the MRI concluded that I have severe central spinal stenosis, which my bone doc jokingly calls, “old lady back.” Damn whipper-snapper.

I have Celiac’s disease and am lactose intolerant. I don’t do gluten and I deal with dairy.

I eat healthy and work-out daily because I am tired of co-payments and doctor’s visits.

I absolutely love my family and friends, and have forgiven those who hurt my heart.

I’ll never be able to comprehend the loss of my daughter to Cystic Fibrosis and I continue to live in the purest sense of awe I have for my son.

The strength I have is equal to the love and support that I am blessed with in my life, especially my husband Marc.

I wish I didn’t know hospitals, panic attacks, or funeral homes as well as I do. I work very hard at choosing to be positive, seeing beauty in life, and loving with all my heart.

I write for therapy.
I laugh for sanity.
I cry for necessity.

I doubt you’ll ever see me as the Publix cashier did today, but if you do…I know you’ll know what’s behind my wrinkled, contact-wearing blue eyes.

Me.

There are always two sides, what you see and what is real, and both make you whole.

I remember once crying myself to sleep thinking I was never going to be “good enough” at ____ (fill in the blank). Then, through trial and error, I learned that by being raw and being real…I was and am…good enough.

We all are.

Well, yeah, they’re right.

Truth be told, I’m also broken.

Life is fragile and precious and it never quite turns out the way you originally planned.

21 years ago I married the love of my life and together we had two incredible children who, as parents would expect, taught us how to LOVE far beyond what we could have ever imagined.

The unexpected was having two kids born with Cystic Fibrosis and the excruciatingly painful lesson of how unbearable life can be when you bury your child because of it.

I’m forever broken.

I’m forever crazy.

I’m forever strong.

As most of you know, Jena was 13 when she moved up to heaven in 2006.  Jena has graced me by leaving her heart in my soul. Her infectious smiling spirit remains alive and well and that keeps me broken… crazy… and strong.

My son Eric has a ‘Pain is not a valid reason for stopping’ tattoo which honors his sister and is a constant reminder to me.

But sometimes I want to stop.

Sometimes it’s so very hard not to throw in the towel and say ‘I just can’t do this anymore!’

This past month Eric had some dreadfully serious complications regarding Cystic Fibrosis.  After the immediate crisis was over, it was all I could do to just breathe.

I was not strong. I was far from being in control.  Fear once again invaded my thoughts and heart. I cried for hours and hours on end.  All I could think was,  I can’t lose him too!

As a mother we do all we can for our children, it’s what we do, and pain is not a valid reason for stopping.  Either is fear.

So I cried, I yelled, I prayed…

and I cried some more.

Then, when I could…I got back up.

I can’t stop.

Pain and fear do not stand a chance against the power of LOVE.

I may be permanently broken but unlike all the King’s horsemen who failed to put Humpty Dumpty together, I’m held together by remarkable friends and family, loving generous hearts, and God’s grace.

I may be cracked but that’s ok.

I’m full of (Jena) pennies from heaven…♥♥♥

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

…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

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. 

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.

Margarete will speaking at At the Verizon Wireless Amphitheater in Alpharetta, GA

Purchase Tickets for Shamrockin Here

Even if you can’t make this trip, you can still make a difference and SHAMROCKIN FOR THE CURE? please click here

Today is “Macy’s National BELIEVE DAY”

Today Macy’s is granting 55 nationwide “wishes” in conjunction with  The Make-A-Wish Foundation

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?” 

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.

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.

…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.