100

The gloomy days of late winter put me in a foul mood.  I just can't peak out from under the blanket of gray that covers everything these days.  And while it is a very chic Benjamin Moore paint swatch, it isn't the color I want outside my kitchen window day after day.

Michael's ongoing fight against Pseudemonas lingers.  After he wraps his 28-day cycle of inhaled antibiotics and 14-day flight of oral antibiotics we find ourselves in February.  And ready for to have him "recultured" to see what might be lurking in the recesses of the tiny airways of his lungs.  And the positive culture, slaps us in the face and confirms that we must continue additional therapies to control the lung infection.

Then, Michael gets sick on top of his positive culture.  The afternoon before his special Valentine's Day party, he complains that his ear hurts.  Our pediatrician whisks us in and confirms a raging, pussing ear infection.  Groan.  Aaaaand back on oral antibiotics on top of the inhaled antibiotics.   My only relief is that we catch it and start treating it quickly so that he is able to enjoy his school's Valentine's exchange.  Two years ago, he wasn't so fortunate.  The smothering weight of that ugly winter blanket sits on top of me.  A big heap of blah.

Somewhere under the blah, Valentine's Day comes and goes with lots of adorable red construction paper heart projects from Kindergarten and preschool.  The many ways our boys tell us that they love us.  My favorite expression of love is one of the many times Dylan asks the question, "Mommy, you know how much I love you?"  I play along.  "How much?"  He pounces on the end of my last syllable in his deep, lispy voice without missing a beat. "All the way."  Yeah, me too buddy.

Love you.

All.  The.  Way.

A few days later, Michael marks another celebratory day in Kindergarten -- the 100th Day of School.  I realize this is a big day.  He reminds me before he heads out the door that morning, "Mommy, it is HALF-WAY to first grade, you know."  I chuckle at the gravity of his tone.  I am in charge of snacks for the party, where we send baggies of goldfish with the kids and a poem marking that they are "O-fish-ally" 100 days smart.  It's fun but it's also a marker for them on all their time spent learning and exploring in Kindergarten.

Later that day at the bus stop, Michael is charged with energy when his feet hit the pavement off the bus.  His eyes are dancing against the blue sky.  He and I do our same hug as any other day as we walk up our front yard.  We tumble through the front door as the dog is doing her welcome home mambo as she whines and cries that Michael has arrived home.  Dylan is a chatter box trying to explain to Michael all that he has done in his day so far.

Michael says nothing, plops his bag down with urgency and hurriedly unzips his bag.  After shuffling through this bag he tells me that there is something he must share with me.  "Look, Mommy!  I drew something for you at school today."  He shoves a worksheet with a drawing toward me.

I take it in my hands and see a red crayon stick figure with a beaming smile on its face holding a brown crayon cane.  The assignment title at the top of the page, "This is what I will look like when I am 100 years old."  My eyes well with tears.  I start crying and cannot stop.

100 years old.

Old age.  That's old for any person, but for someone with CF (where today's average life expectancy is 38 years), well, that's a miracle.

My tears stream down my face.  Michael's face wrinkles and he aims his confused expression at me.  "Mommy, why are you crying?  It is because I am such a good draw-er, isn't it?"  I laugh as I am crying.  "Yes, Michael that's exactly why I am crying."

Sure enough a few days later like all moms can attest to...  my other kiddo starts with his own version of sniffles.  A fever that lingers.  And lingers.  And five days later still LINGERS.  I finally take Dylan to the pediatrician to find out that he has a yuck nose and looming sinus infection.  We agree that something might be brewing and with a negative flu test and a negative strep test, she hands me another script.  She and I both concur that waiting might be a good idea, but this way he is covered if it turns ugly.  Let's see if he can tackle this.  So we wait.

But not long.  The very next day we lounge around as a family.  More gray outside.  So we enjoy a cozy day at home inside.  My husband and I have the same thought that a nice family dinner out would be the perfect end to the day.  Something to get us out of the house and some good hot food.

We all get ready late afternoon.  A hot shower, a little eyeliner, and diva black mascara help me feel a bit better.  It won't erridicate the gloom, but at least I look, er, brighter.

After some bickering with Michael, he agrees to put on the dress clothes and we head downstairs to get Dylan dressed.  We find him slumped at the kitchen breakfast bar fast asleep.  We realize he is really sick and not quite himself.  Fever and fatigue.  I head out to fill a script that had been safely in my purse knowing we'd cross this bridge.  So much for a family dinner out.

As Dylan starts improving and his cough that has emerged with this round of illness begins fading a bit, I settle into the week.  Within days, I realize that I am also getting sick.  Standard.  By Sunday morning I find myself at an urgent care center with a prescription for antibiotics in hand.   The upcoming week we are expecting my husband's parents, Papa and Nonna, to come into town for a visit and to watch the boys for a couple days so we can attend the Cystic Fibrosis Foundation's National Volunteer Leadership Conference.  After starting to rebound from feeling lousy and a canceled flight because of a storm making life difficult, they arrive safely in New Jersey.  We are thankful for a little time with them and by evening, we make our exit to head to the conference in DC.

My husband and I head off into the night through a chilly mix of rain and snow.  In between the squeaks of the windshield wipers, we reflect on our boys' journey with CF and anticipate the two days ahead...  seeing old friends who are also fighting the same CF fight in their homes...  raising money to help find a cure for their loved ones...  hearing medical updates, advocacy strategies, marketing insights and more.  What is it they say...  ?  "Knowledge is Power."  It sure is.  Especially in fighting a chronic, devastating disease.

The conference is an emotional one, but filled with love and hope.  And remarkable science.  It becomes clear as the Chief Medical Officer and the Chief Executive Officer/President share the medical update that there is tremendous progress. They spend considerable time explaining the state of CF today as a disease and the expectation of where we are heading to a CURE.   The massive screens in the ballroom reveal a bar graph that shows a trajectory of medications treating 95% of the CF population to control and potentially CURE CF by 2017.  95%. Completely and totally astounding.  My brain almost can't process it.  2017.

I begin processing the genetics and the medicine.  My eyes slowly track each bar and adjacent note.  One bar, then the next.  And it hits me.  Our boys are in the remaining 5%.  The 5% NOT on the bar graph.  Here's the catch.  We have always suspected that the drugs would help our boys because in theory the CF protein is broken for the same reason (or a similar reason) as one of the most common mutations.  But the reality slams into my brain.  The truth is WE JUST DON'T KNOW.  The anticipated medications might not help them or might help them considerably.  Michael and Dylan are a rare group in an already rare disease.  (To read just how remarkable their gene story with CF is, read blogpost "Cracking the Code").  There aren't enough patients, or possibly any patients in the world, with their exact genetic match to research these amazing medications on the horizon.

My hands shake under the table as I realize the magnitude.  I shift in my seat reeling from my conclusion.  My cynical voice snorts inside my head, "5%.  Right, of course we're the 5%".  But my trust and experience with this amazing, results-driven organization shouts in my head, "Keep listening.  Don't freak out just yet."  And I am glad that I take pause and force my heart to be still.

The bar graph disappears and another slide emerges, "GOAL:  100%  We must not stop until ALL mutations are treated with success!"

Got it.  100.

100 PERCENT.

No wonder 100 is a milestone.  100 days of Kindergarten.  100 Years Old.  Of course, 100%.

My hope, my trust, my belief in this journey do not fade.  My heart swells as my brain mulls this over.  I find peace and would find promise in my subsequent conversations with the Chief Medical Officer and the CEO/President about our boys over the following day.  Terms like "personalized medicine" and "methods of individual testing" are discussed.  But the most amazing part of all this...  they are BEING DISCUSSED.  To know that we are close to a cure or controlling CF is one thing.  But to be discussing individuals' experiences with life-saving medications and possibly in the next four years, this is the miracle in and of itself.

The people fighting for this cure...  The volunteers in this room...  The friends and family, co-workers and neighbors raising money to find a cure...  The scientists in the lab...  The leadership of the CF Foundation.  They get it and they are absolutely behind us.

Or as the salty boys would say...

ALL THE WAY.

Questions and Coffee.

A reliable, steaming mug of coffee gives me comfort.

I love when tan, creamy coffee is fresh and greets me in the morning.  I never end up making it all the way to the bottom of a cup of coffee, since it usually gets set down in my distraction and goes cold.  Icy, disrespectful coffee is my nemesis.  There are also the times that I brew a cup of coffee in our Kuerig, only to forget about it entirely.  I easily average making 3 cups of coffee daily, but I am lucky to drink one whole cup.  I just have too much I am juggling these days.

For whatever reason, this is a morning that I can actually sit down with my dependable friend and watch the morning's headlines.  With a sigh, I flip on the TV.  The kids are eating breakfast pleasantly at the kitchen table.  Our morning is already upside down, but I figure we'll rearrange our routine and get right back on track.

We normally greet the boys every morning in the same fashion.  Dylan flings his door open and if we haven't heard the thud of this act, we usually hear his sweet toddler voice call for us.  He stands at his gate with his favorite thumbie blanket, "monkey, and his two pacifiers, his "boppies".  We enter his room, first with a diaper change, then gift him a cup of juice spiked with Miralax, and we collectively crawl back into our bed with the melodies and spinning scenes of a kiddie show.

Next, Michael will usually stroll into our bedroom, now as dark as a cave, with bed head.  Not just a little disheveled, but completely messy hair in all directions.  Michael's azure eyes blink slowly.  Dylan yells in a perky tone, "Hi, Mike!"  Michael rubs his eyes and climbs into our bed.  Our family together, every morning.

Usually, our immediate laze is soon contrasted by a flurry of CF treatments and medications.  There are nebulizers and the airway clearance sessions, but not until Michael and Dylan have had their first medications of the day like antacids, appetite stimulants, steroids, digestion aids to help move food through the stomach.  Then there is a barrage during breakfast of vitamins and probiotics.  I have to constantly run through the checklist of all that needs to be done, and more cumbersome, and when it needs to happen.

*   *   *

It is Friday night and one of my best friends from college comes to visit.  My husband picks her up at the airport and once she walks through the door, it is just like old times.  A chatty catch-up paired with beers (now Blue Moon, not stale keg beers served in Solo cups).  My taste has improved a little since our days of 5 cent beers at our favorite bar where bands played.  We are happy.  You'd think we are 21 again.  Well, except for my two sleeping angels upstairs tucked their slumbers.

The next morning I shove my husband out of bed to go deal with the kids.  He is always good about letting me sleep in and this morning, honestly, the few beers are having fun trampling on my tired brain.

After a short while, I roll out of bed and stumble upon the kitchen.  The loud whir of the medical machines in the next room advise me that the boys are doing their morning round of CF treatments. My friend is sipping her cup of coffee, and my husband is task master for the morning's to-do's already starting breakfast for the kiddos.  I take a prepared breakfast casserole out of the refrigerator and set it down with a plunk! on the counter.  I turn oven on and brew a hot cup of coffee to help me wake up.  There is nothing like a good talk over coffee, or beers for that matter, with an long-time friend.

As the day progresses, my dear friend witnesses all that has been weighing on me.  As we go along our routine, she presents really good questions.  Questions that I have never been asked.  I have never had someone who isn't already intimately familiar with our drill spend almost 24 hours in our house to see all that we do.  She wants to know so much...  why we do certain things, how we do them.  I am really touched by her curiosity and her heartfelt sadness.  From my good friend who is also a mother, I can also read what she wasn't saying aloud.  I don't think she has realized how CF dominates every aspect of our lives.  Completely.  Small children require lots of care, of course, all mothers can relate.  We just have a crazy amount of extra steps.  There is simply a lot that goes on in one day in our home and I have become desensitized.  Her sparkling eyes and inquisitive sentiments got me thinking...

What would it be like to be able to wake up and not think this way all day?  My brain has been completely hard-wired to think differently.

I have no idea what it is like to simply hand food to my kids without pills or without thinking.  Without thinking... anything.  Normally feeding my kids is a mental exercise.

I am constantly doing the medicine math in my head...       How many pills does he need with this?...
When was the last time he took enzymes?...      I swiftly grab the box of you-name-it and study the fat content...      How much fat is in this?...      What is a serving size?...      How much will he probably eat?...      When was the last time he took his digestive medications?  Is he on schedule so his hunger will peak now?...      If he has a huge snack now (applause!), then will he eat his meal later?...

I actually have moments when I wonder if I have taken my enzymes before I eat something because it that ingrained in my brain that this task precedes eating.

Besides some thoughtful questions from a close friend, it is also happens to be a natural time of year when I reflect on this journey since we are on the brink of fundraising for our annual walk in May.  The coming two months mean preparing, planning, creating, educating and fundraising.  It is a time of reflection and insight into our lives and not just for our circle of supporters, but also for our ourselves.  What are doing and why are we doing it?

I relive Michael's diagnosis.  I remember it vividly.  It's a bright Friday afternoon and I have arrived home from Children's Memorial Hospital where we had brought baby Michael for a test.  He is now quietly napping in his crib after the exhaustion of the morning.  I am standing in my kitchen, summer sunlight flooding through our windows when the phone rings.  I grab the phone and quickly glance look at the caller ID and see it is the pediatrician's office.  "Hello?"  I am confused since we weren't expecting a call until after the weekend.  The senior pediatrician introduces herself since we have never met in person.  She clears her throat, "We just got a call from Children's Memorial with Michael's sweat test results.  They were 112 and 110.  This indicates that he most definitely has CF.  I just spoke with the director of the CF center and she is prepared to talk to you right now and even see Michael this afternoon."  There is urgency in her voice.  Silence on my end of the line is broken by sobbing.  I brace my weight with my hand against the kitchen counter.  And the phones starts to slip from my hand.

I also experience the remarkable highs of this journey with all other individuals, families, friends, and supporters of advances with treating Cystic Fibrosis.  Last week, I am laying in bed for once before the boys wake up and I am scrolling through apps on my phone.  I see the headline breakthrough on my social network news feed from my mobile phone.  I dive out of bed and hurry to the blaring white light of our computer.  "Announced positive results from Phase 3 Clinical Trials...  improved lung function...  fewer pulmonary exacerbations... weight gain..."  A drug that we have been watching like a hawk since Michael was diagnosed four years ago has achieved favorable results in the final Phase 3 trials before it will go to the FDA for approval.  Wait, not only favorable, but OVERACHIEVED expectations.  This oral pill, over a significant duration of almost a year, helped CF patients' key markers that define CF are all notably improved.  Even the sodium chloride in their sweat shifted significantly toward a more normal range...  translation:  patients are less salty when they sweat!

A miracle.

I start crying.  My heart swells into my throat.  Then an email pops up from my brother-in-law about the CF drug and the company's stock is trading up.  We exchange emails and I then share the news broadly with friends and family.  While this drug alone will not cure Michael and Dylan because of their genetic code, this pill combined with another one in Phase 2 Clinical Trials are hoped will be the key.  The key to fewer questions in my days, better health for my boys, and overall a better quality of life.

Our fundraising journey and creating awareness about CF is often met with questions.  Questions that I am always, unabashedly, glad to answer.  If I don't keep telling our story, no one will for us.  I think of all the other parents before me who continued their vigilance in sharing their kids' stories.  It was these pioneers who have brought us to a remarkable place in medicine.  A pill that alters the body's cells to CORRECT the dysfunctional CF protein.  I silently thank these men, women and children who have changed the course of days for my two sweet children.

I take a long, controlled sip my coffee.  It's hot and burns as it rolls down and warms my dancing soul and my busy brain.  "Mom!" Michael shouts abruptly from the other room.  I set the cup down on the table and walk away to see what today's adventure may bring.

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.