Sparkle.

Champagne has become an interesting theme in my life.  The moment my husband and I wrote the check to build our first home together, a champagne bottle inexplicably broke in his parents' basement.  Not knowing what the loud BANG! was at that moment, we thought it was someone breaking into his parents' home, we called the local police.  Guns drawn, the officers came into the house and two minutes later came out laughing.  They told us it was just a champagne bottle in the basement.  We trekked down to the basement to find a dribbling soppy pool of sparkling wine all over the concrete floor.

 Some might say it was a coincidence.

I say it was an angel.  I believe my father who I lost when I was a teenager was cracking open the bubbly to celebrate our first home together.

Shortly thereafter, I was dying to buy a vintage art print of advertisement for l'instant Taittinger champagne featuring an image of Grace Kelly.  I had researched it and plainly it was just too much money.  Would you know that same week we attended a fundrasier where they had the very same print on auction donated by the same company I had wanted to buy it from?  I won the auction for it for a whole lot less and money went to a great cause.

Champagne is for celebrations.  Duh.

It most certainly is.

Even for the unexpected and less obvious ones.

*   *   *   *   *

Once upon a time, I was a sales and marketing gal with MTV Networks.  A trendsetting company and I felt lucky to be part of it.  It was pretty awesome working for the some of the biggest brands in television...  Nickelodeon, MTV, VH1, Comedy Central, I could go on.  And I got to meet some pretty cool people too.  Colleagues who were crisp and cool.  Clients who were surly and smart.  Bosses who were intriguing and inspiring.  The mix of people I collected during my years at MTV Networks is pretty special, and I am so happy that many of those folks are still part of my story years later.

That life far behind me, I can't help it lately, but I keep thinking about one particular person in my collection.  Amongst that blur of the marketing meetings and all the strategy sessions and planned pitches, it is a short two-day event that leaves an indelible mark.  I sit in small room of 1515 Broadway in the center of the world with a few colleagues and the most fascinating presentation coach ever.  Caroline is a funny, charismatic woman with a thick Scottish accent, a shaved head, and the most clear and intense eyes.  She is striking and everyone immediately pays attention when she begins to introduce herself.

Over the two days, Caroline spends her time and talent with us, a small group for two days exploring our talents, finding our true selves and ultimately our unique voices.  She just has a knack to help people achieve great things by simply and authentically being themselves.  Her coaching, her spunk, and her inspiration still grabs me today though our time together was twelve years ago.

It's the typical conference room setting, but with lower, softer lighting.  No windows, no distractions. There are about five of us and Caroline and we all go around and tell a bit about ourselves.  "Blah blah blah, My names is Mary.  Blah blah.  From the Chicago office.  Blah.  Blah.  I am getting married in a few months.  Blah blah blah."

The session moves forward.  Caroline schools us in different ways to approach sales pitches.  We develop our best argument or most persuasive story we can.  With her help, we flip those ideas upside down, shatter them apart, and begin to see at our stories differently.  And over the course of the first day and recalibrating our mindsets, there is an obvious surge in our creativity and boldness ready for the next day of work.  I become more confident in my abilities.  As we wrap the first day of sessions together, she hands each of us a list of words.

She delicately hands the folded card to each of us -- a secret between only she and each of us.  These are our unique qualities written down on a tiny scrap of paper that are meant to help us deepen our connections in the world.  Words that tap into our authentic selves.  So, you might be saying, so what?  It's a piece of paper and a corporate sales lesson.  What's the big deal?

It was during a time in my life when I was engaged, newly promoted, and building our first home.  I was a bit, er, bright-eyed, shall we say.

But for me.  For then.  Even now.  It is a big deal.  This woman commands a room.  She speaks and everyone is compelled to listen.  She has made a business about of getting the best out of people -- very successful people, no less.  So, whatever her secret formula, I am all about listening and receiving the message.

For the life of me, I cannot recall the other words on that card she hands to me, but there is one word that simply jumps off the page.

SPARKLE.

Huh?

I had worked for a handful of years in a fine jewelry department in Marshall Field's for some side money during my college years, so I know a thing or two about sparkle, but not quite in this way.  Sparkle?

Later that night, another friend in the same pitch class and I head out and grab some dinner and a drink in busy NYC.  Bustling city streets and honking taxis.  NYC was always a blur of lights and noise to me.  As the night continues, we somehow later meet up with a few other colleagues who happen to be out at a posh spot with none other than the lovely Caroline.  I recall everyone smiling and shifting to make room so we can join the table.  As the server comes over, I start to order a glass of wine.  Caroline stops me mid-sentence and says, "No. You must have a glass of champagne."  She smiles coyly at me.   I wouldn't have thought of a glass of champagne...?  What a great choice, I think.  Everyone should have a little champagne once in a while.

As conversation meanders, Caroline leans in and says quietly, "You have a very powerful voice.  I am interested to see how you use it...  And I really think you should make a toast at your wedding."

I am a little confused as to what exactly she does mean.  Powerful voice?  How I'll use it? I am pretty certain that she doesn't mean for tomorrow's final day of presenting in her class.  She has a grace and builds trust immediately with people, but even with that my inner monologue snorts, "And I am most certainly NOT making a toast at my wedding."

I never made that toast at our wedding.  There were, however, six other very memorable speeches.  Mine would have been simply superfluous.  But, looking back on that interaction with Caroline, I now wonder if she was not just intuitive, but quite possibly even psychic.

Those experiences and meeting the mystifying Caroline become crowded in a busy life.  My role at MTV evolves for seven years.  Then as technology sharpens and my sales division fades at MTV, motherhood emerges.

But that word, "sparkle"...  it lingers.  I find it sprinkled throughout my life in different ways and the theme endures.

Once we were blessed with children, we had taken the boys to one of Chicago's treasures, The Field Museum.  Dylan was just three years old and I will never forget how his dark eyes danced as his feet scurried through the famous Hall of Gems.  His feet would stop at one case and he'd point firmly at a gemstone, "Mommy, I get this 'parkly for you...  AND DIS 'PARKLY...  "AND DIS 'PARKLY..." and he'd move on to the next case.

He, of course, was the most precious gem in the exhibit that day.

And most recently, in this most drab, ugliest of Chicago winters, it is the allusive sparkle that finds me but in a notably different way.  When words like "polar vortex" and "worst recorded January" spew from the TV, I curiously notice the diamond-like glitter of each snowfall.  As I focus my attention on navigating the wintery, dangerous road, I hear Dylan pipe up from the backseat.  He has the same observation as we are running errands, "Hey Mommy, did you know that snow sparkles?"  I grin at him in the rear-view mirror.  "It does," he nods firmly as he assures me.

*   *   *   *   *

It's Friday night amidst another Chicago blizzard, and I find myself among the glitz and glamour of the Cystic Fibrosis Foundation's Grand Chef's Gala in Chicago at the Fairmont Hotel.  A black tie affair and a fun foodie night.  Some dear friends are joining us and we are thrilled to have a grown-up's night out.  My hubs looks dapper and dashing and I am painted and pinned up, dress and diamonds.

As we settle into the cocktail hour, I am particularly excited to make my donation for one of the night's raffles.  A donation in exchange for...  you guessed it -- a glass of champagne.  As part of the raffle, the flute has a tiny satin bag attached to the stem.  Supposedly, there is a little gemstone hiding inside. Most likely a crystal, but for one lucky winner of the raffle, a colorless, very valuable diamond.

As I sip the champagne, I smirk.

Weirdly, in that moment looking around the bustling cocktail hour with all the champagne bottle balloons floating overhead, I remember Caroline's words.  I realize that THIS IS EXACTLY what she meant.  It's taken years for me to get it.

My story.
My mission.
My advocacy.
My writing.
My voice.

All now aimed at finding a cure for our two beautiful sons.

I swirl the gold, shimmering liquid in my flute.  It's the perfect effervescence.  I hold in my hand some of life's ironies and inexplicable events.  Every little step along the journey, led me to just where I am right now, where I am supposed to be.

Our night would speed on including laughs with amazing friends around our table, generous donations going to a cure, and even some dancing and camaraderie by the end of the evening.  In all of the commotion and fun, I would forget to get my glittering gemstone checked by the certified gemologist at the event to confirm if it's the real deal or one of the many crystals handed out that night.

The next morning, I am groggy and hung over.  Maybe I had a little too much fun.

I sit at the edge of the hotel bed in my trusty yoga pants and dull fleece jacket.  I stare at the lively gem in my hand.  I gently roll it around in the palm of my hand to examine at it from all angles.  It catches and throws the light of the bedside lamp.

A glittering glass of champagne...  A beautiful gemstone...  Or the fire that ignites us...  Taking the light of life and recasting back into the world.  If you ask me, it's one of the things that make life beautiful.

Sparkle is sparkle.

Sometimes, it's about finding around you.  Sometimes it's about finding it within you.

Houdini and Oz

Houdini was a magician.  An escapologist.  A stunt performer.  An aviator.  A near contortionist.  An illusionist.  He was someone who very deliberately would hide in the shadows and darkness to bring forth an impossible stunt.

Ironically, Houdini was also a skeptic.  He sought to expose those who were frauds and those who preyed upon people's hopes and wishes with loved ones believed to be in the spiritual world.  And with this, Houdini brought many things to light.

In so many ways, my boys are little Houdinis.

I wake up and dart out of bed, scrambling to actually squeeze in a hot shower before the day gets going.  It's been a storm of a week, last night being the first in days we are able to sleep at home with a working furnace.  And now the very first morning waking in our own beds we are having to run out the door to deal with the stresses of CF clinic.

I pack a bag with some snacks and load the kids in their car seats still in their pajamas and head out the door.  Sun pouring into the windshield I route my best course against miserable Chicagoland traffic and so that I can stop for a reliable, hot cup of coffee and a take-out breakfast for the kids to eat during the lengthy clinic.

When we arrive, it is a full-waiting area at the CF clinic.  This is highly unusual as the staff is extraordinarily diligent about getting CF kids ushered into their rooms quickly.  This is because individuals with CF can host dangerous germs and in theory pass on those germs to others who are vulnerable (like fellow CFers).  I am struggling to juggle everything like the bags, the breakfast, and my two little brutes.  I don't want them running around the other kids in the waiting room, some of whom have paper masks covering their noses and mouths, some without.  As I contemplate how I am going to grab the two paper masks to put on Michael and Dylan, I see our nurse.  And SIGH OF RELIEF.  She escorts us back to our exam room.  My husband's brother, "Uncle T", is stopping in this clinic to help give me a hand.  Let's be honest, this is not a one-person job.

After wrapping up the paperwork with the front office staff, we get the boys settled with their food.  A bagel slathered in stawberry cream cheese, donut holes, a breakfast sandwich oozing with cheese and salty ham all for the boys and a coffee for me.  Cream only.

The battle begins earlier than normal at this clinic visit.  The first few minutes are always spent getting the boys' vital signs...  height...  weight...  pulse ox (oxygen levels in the blood)...  temperature...  blood pressure.  Normally a breeze.  But not today.  Michael and Dylan are having no part of this visit.  Everything is a test in patience with them.  Dylan is bull-headedly focused on eating and Michael is determined to argue his way out of everything we ask.  My own blood pressure is rising.  Maybe they need to hook one of those machines up and check me.

Only after a "Child Life" Associate comes with toys and bubbles to visit our room, does the mood change a bit.  I toss the strewn pieces of donut holes left behind and the remaining crumbs of Dylan's sandwich in the garbage.  I look down and see Michael's bagel with one petite bite taken out.  His breakfast is virtually untouched.

Our favorite nurse breezes in and busts out laughing.  She always knows that our family brings a lot of, er, energy to our visits.  All the staff can usually do with us is throw their hands up and, well, laugh.  I share with her how the heat has been out at home, how we've been staying with family, and how it's been a 'run-and-gun' life in recent weeks.  Then we start discussing the boys' health.  "Let's start with Michael since we are already chatting about him..."

I begin to explain that he has had more severe belly aches in recent weeks and some troubling potty issues.  "Yeah, we'll talk about that," she says casually.  "Michael has lost weight."  She coolly focuses on the computer as she makes the statement.  I know she is doing her best not to set off my insane mom alarm.

I am stunned.  I have taken a slug to my stomach and the room closes in around me.

The commotion around me fades.  So does the chatter and the boys' hysterics about bubbles.
I can no longer hear the muffled voices in the hallway.

The world stops.  And for once in my life, I am speechless.

MICHAEL LOST WEIGHT?

No, no, no.
Not my boys.
Not possible.

I don't know if you realize, they are different.  THEY ARE DIFFERENT.  These two little boys are different.  We're the exception.  They are different!  These boys defy the odds.  I want to scream.

We are the weird CF family to the rest of the world.  And we are the weird family within the CF world because our kids don't have problems with weight.  They are different in every way.  These boys defy the odds.  Don't you know?  Not possible.

They.  Just.  Don't.  LOSE.  Weight.

I shift uncomfortably where I am sitting and take a long, almost painful swig of my coffee.  I let my inner hysteria happen.  But I work to stay composed on the outside.  I straighten my posture tensing all my muscles awaiting the impact of the coming conversation.

"He grew over an inch and lost over a pound," she explains.  I do the math in my head.  His weight went from an astounding 87% BMI last time to 42% BMI today.  It's been only two months since our last visit.  We discuss how something is up with Michael and we dissect what is going on.  We cover all aspects of his medications, his belly, and his cough.  When I wrap up with her, she gives me a look of warmth.  She knows I am freaking out.  It will be okay, she tells me with no spoken words.  All in one look.

I spend some time next with the Nutritionist.  She explains how incredibly important the growth in his height is.  It is really GOOD that he is growing taller.  We begin to address Michael's chronic stomach aches along with the weight loss.  It becomes all too real.  His belly aches were a bigtime symptom that his meds were off and they will be adjusting the enzyme pills he takes every time he eats.  On all accounts everyone believes he is malabsorbing his food.

Basically, imagine eating a meal and afterward your have a miserable stomach ache.  Some, not all, but only some of the nutrients and fuel are absorbed.  Your body cannot process or digest all the nourishment it's taking in because it doesn't have the right tools.  Then you feel a wretched stomach ache.  You feel this way after every time you eat.   You begin losing weight since your body doesn't get all the good stuff out of the food you are eating.  And because you no longer have an appetite because your stomach hurts, you don't eat.  Your body begins losing precious calories and you aren't putting enough back in to refuel.  That is what has been going on with Michael.

No wonder he has had a stomach ache.  No wonder.  I am sick.  I feel my own stomach take a turn.

We discuss new medications for Michael.  New ways to add calories.  New foods to make.  I am starting to feel this ugly disease creep into my already insane brain.  It's almost too much to handle.

As I wrap up with the Nutitionist, someone cracks the door open to give me a message.  That's when the escape happens.  Out the door like a flash, Dylan is gone.  He has disappeared into the hallways of the Children's Hospital Building.  I dart out of the room chasing after him.  He passes all the exam rooms and is all out laughing at me.  Dylan has no mask on, because clearly there is no time for a mask during a great escape and, oh by the way, it's way too appropriate for a CF clinic and waiting room.  He loves the chase.  I am not anywhere close to grabbing him when he jukes to the right, then a hard left, and heads out into the bustling waiting area again.  His little legs are a flurry, he turns left and starts to head to toward the front of the building where we entered.

I am in good shape, but this kid is FAST.  I actually have a momentary glimmer of promise to catch him.  I thrust my arms forward with all my force and yank him back into my arms.  I am able to grab and scoop him up.  All the while he is laughing at his stunt and kicking his legs hurriedly in my arms.  Oh Lord, Dylan is going to be the death of me.

I am panting as I retrace our path back to our exam room.  As we walk past, other parents and clinicians are snickering having witnessed Dylan's sprint performance.  I am just glad that he didn't make it outside and get on the tollway, which with his speed, is completely possible.

Just as I near our exam room, a door cracks open from across the hall.  One of our good friends whose son also has CF happens to be at clinic this morning.  He pops his head out the door of their room and grins.  "Hey, you wanna ride down to the gala tonight?"  Catching my breath, I respond, "That would be great."  The door closes, and I head back into our room with my little Houdini in tow.

The boys' physician with whom we have a great relationship with and I trust both professionally and personally walks into the room.  She takes one look at me and says, "You're going to need some good concealer tonight, honey."  It's just been that kind of week.  It's written across my face.  My dark mood and lack of rest is exceedingly obvious, especially without a stitch of make up.  Clearly, she is trying to lighten the mood.  We both laugh, discuss the gala which she will also be attending, and we agree that cosmetics are the easy solution to an easy problem.  We move forward to talking about the more complicated problems around the disease I hate.

Nearly four hours start to finish and after a battery of blood work and chest x-rays , we are finally packed into the car heading home.  Both boys  immediately are passed out asleep.  They are drained.  And so am I.  But I have to get ready for this gala tonight.  The next hours I spend trying to navigate nail painting, CF breathing treatments, feeding the kids, applying make up, cleaning up dog puke, and getting out the door.

As I ride into the beautiful city of Chicago with my friends and I tell them about the snags we have had in recent weeks the response is, "What are you doing in our car?  You are a bad luck charm."  We all bust out laughing.  I really need to have some fun tonight and to take the edge off the upsetting news about Michael's weight and the stress from having no heat this week.  Then my phone rings.

"I don't have my tuxedo shirt buttons.  They are at home.  What should I do?"

Seriously???  This can't be happening.  My husband is getting dressed for the gala at his office and has no buttons for his shirt.  I am not surprised.  It's just the way of my world.  He decides to McGyver his shirt together with some engineering of binder clips.  One his tie and vest are on they inconspicuously hide the lack of buttons on his shirt.  Talk about an illusion.  Guess you can call my son Houdini and my husband Copperfield.

The regal event is a fundraiser for Cystic Fibrosis where esteemed chefs from all over come and create tasty delicacies.  It is a black tie affair and I am really looking forward to tonight.  There is a lengthy cocktail hour with delights to satisfy the utmost foodies in the room, a full dinner and plenty of fundraising efforts with a silent and live auction with the proceeds going to the CF Foundation.  Finally, along with awards for the preferred chefs of the evening voted by the gala's attendees, they also present the "Bid for a Cure" where attendees can bid during a live auction to make a donation.  Our family as well as the others seated at our table are highlighted in the special video production that is aired before they start the bidding.

The theme of the spectacular evening is "The Emerald City".  There's no place like home, there's no place like home.  You and me both, Dorothy.

The evening overflows with fun and positivity.  However, the reason we are all gathered together does not go unnoticed.  My best friend is working the event because she is a charitable soul.  A lifelong friend.  Someone who is in the trenches with our family.  Someone who wants the cure as badly for her sweet Godson as much as we do.  And I love her for this.  Completely selfless, she is one in a million.

We spend time with the other families who have kids with CF too.  We have grown close to a special few of these families over the years.  We are each others support.  They are the friends who, well, 'get it' when no one else really does.  We talk about CF treatments, endless medications, balancing life and disease, and fundraising together.  We cry together and we collectively see the light on the horizon together.  We stand arm in arm in this battle against CF for our children.

We mingle with such remarkable adults living with CF who inspire me every step of the way.  Their valiant fights leave me hopeful and their undying optimism humbles me.  I am almost nervous in their presence because I so admire these amazing individuals.

There are the volunteers and employees of the Cystic Fibrosis Foundation who are working tirelessly to raise money that supports a cure.  They serve up a lovely evening filled with food, fun, and whimsy.  Most importantly, they overachieve on a night of fundraising to find a cure.

The night is filled with hope, love, and good things.  I make new connections, rekindle old ones, and smile all along the way.  But there are moments in the evening, lulls, where my heart aches.  The disease lingers.  I can now relate to the 'weight maintenance' conversations around the room.  I can also share our "hospital story", since most everyone has one.

I most want to pull back that curtain and understand all of why this terrible disease destroys so much.  It was simply a man behind a curtain operating levers and buttons in Oz, I want to understand how a minuscule malfunctioning protein can produce such grandiose effects with CF.  I want to pull back that curtain and see the dark places, the light hope and every single shadow in between.  I want nothing more than to know everything I must to care for my sweet angels.

I am so overwhelmed with the day, it's ironic that at such an elitist food event, I can't bring myself to really eat.  Seriously, it's not the Spanx under my dress holding my belly in either.  It's the adrenaline pumping from the early morning hours of clinic visit, to the stresses that weigh on my heart about Michael, to the giddiness of arriving at the gala, to the airing of the video and seeing my sad self on all the giant screens in the banquet hall.  It's also the true sorrow in my stomach for the reason we even gather tonight with all of these amazing folks.  I just can't eat.  It's just too much.

I would pay later for my surging emotions, too much red wine, and no food in my stomach as I politely ask the limo driver to pull our stretch limo over off the tollway so I can get sick properly on the side of the road.  Completely classy, I realize this.  And still in my designer gown and heels of course.

What's life without adventure?  What's life without the unexpected formal-ware purge?  What's life without an escape attempt with my Houdini every so often?  What's life without a little challenge even if it is a weight gain challenge?

There would be no stunts at which to marvel and no flair to keep our interest.
There would be no darks, no lights, and no shadows.
There would be no mystery, no adventure, no intrigue, no applause, and no thrills.
There would be no wonderment, and most of all,
there would be no journey. 

If all shall be revealed, then what's the point?

Apparently, the Wizard in the Emerald City and Harry Houdini were both on to something really grand.