Building Blocks.

Little red, yellow, white and blue bricks.  Orange and green bricks too.  One stacked neatly on top of each other.  Each depending on the next.  All working together harmoniously to create one stunning masterpiece.  One missing piece or one misplaced block alters the perfect outcome.  Sequence is critical and the meticulous detail is a skill.

Sounds like a self-improvement workshop.  Or some show on National Geographic.

As we near Michael's 5th birthday, I become keenly aware of building blocks.  Especially since LEGOs have trickled all over our lives...  and my floor.  I mutter four-letter words every time I step on one for a middle-of-the-night bathroom run.  Or when I see them creeping around the baseboards.  Or in neat little piles on my breakfast bar.  We are fast approaching full-throttle addiction.  The minute Michael gets a new set of LEGOs he runs in the house and, PLUNK!, plops the box down ready to go to work.  We notice he is precise and laser-focused.

My brilliant brain decides that this LEGO obsession is a good thing.  We have moved away from action-packed heroes that induce aggressive chest-thumping boy behavior and, instead, moved on to something that is quiet, thoughtful and creative.  I watch as he hurriedly flips the pages of the manual of instructions.  Michael calls this a "menu".  His creation takes less time than if I built the same project.  When he is done, he holds up the re-engineered car, he cheerily exclaims, "Wook, Mommy!  Wook!" and holds up the spaceship or car with a sparkle in his bright eyes.

For his birthday, we celebrate with a few friends and all things LEGO.  There was the LEGO Cake and the LEGO cookies.

And don't forget the gifts including Michael's own personalized LEGO lab with color sorting bins and a LEGO table.  (Ideas pages noted at bottom with links.)  Let's be honest here, people, these were also partly for my own selfish, organizing self.  This LEGO lab is meant to avoid the 3 am scorpion LEGO attack and the orphaned LEGOs that have found a new home on the floor near the dog's water bowl.  This super cool new lab is just as much for me and Daddy as it is for him.

All the of the birthday excitement for Michael became two straight days of unapologetic LEGO science.  He was like a mad scientist seeking a new potion.  Concentration of a heart surgeon.   Detective work of a sleuth to locate the right brick even Sherlock himself would be proud of.

I watch him doing his treatments while creating something new and different.  He passes the long arduous treatments lost in these tiny building bricks.  They are simply his mental therapy.  I watch as the vest he is wearing that fills with air and pressure.  It rattles and shakes him as he works hard to find a tiny piece in his bin.  I watch intently as his mask steams.  The medication billowing out of the holes of his mask and occasionally getting in his eyes as he shifts around searching for the next brick.

This amazing little boy is not detoured with all the vibration, noise, and distraction.  He is more focused than ever.

Lately, bedtime books have been replaced by an extra few minutes of building.  Michael's intense eyes dilate and refocus as he draws a tiny brick to the project.  He fumbles to get the right angle and then, 'click', the brick secures into place.  I silently look on and understand those building blocks he is putting together support his own delightful creations.  Uncharted adventures of his imagination.  New games and ways he likes to play.  These LEGOS are enchanting, each brightly colored and individual, yet each contributing to a greater vision.  His vision.

It is the night after Michael's LEGOmania birthday and he decides to go on an organizing binge.  A discarded, hopeless LEGO project that has sat broken and scattered for months now has new life.  Ironically, Michael is completely excited to demolish and properly store the pathetic Star Wars LEGO set (that he has rebuilt twice already.)  Apparently, now this kid understands the benefit of placing each one in its proper bin so he can find it again when builds something new.  Even though it is two hours past his bedtime, Michael is determined to finish his clean up.  Who am I to argue?

I watch as Michael concentrates as he takes apart each section and ushers it in the correct bin.  I realize as I watch his little hands struggle to break some of the tiniest, most stubborn bricks apart that his LEGO hobby is developing tremendous coordination and strength in his little hands too.  In this observation, a realization lands on me.  He's five years old.  A willful, thoughtful individual.  And whose hands are not as little as they once used to be.

I am a crazy lady about details, organizing, and proper order.  Beyond the fact, so I am told, that he is an exact mini boy replica of me, the DNA personality link materializes right before my eyes.   I chuckle as I watch his determination to clean up and put all his LEGOs in their proper places.  He is just like me.  He must finish.  Stopping is not an option.  It is considerably past bedtime, and my own organization instincts are fully supportive.  But my mommy instincts tell me, "This kid's got to go to bed!"

Michael negotiates repeatedly for "just one more pile of bwocks".  And then he goes for more.  "One more, Mom"...  "No, wait, just one more"...  And "For weal.  For weal.  This time, Mom.  I mean it, this is it"...  He grabs a handful of white, black and grey bricks and holds them behind his back.  He looks me firmly in the eye from across the room to make his case.  I can't help but laugh at the seriousness in his expression.  As I laugh, I see him break a smile.  It's like the world is going to end if we don't clean up every LEGO in the world.  And he loves every minute of it.  His determination is that of an army general heading to battle who wants all his men in their precise place.  He expects no less.

I finally have to intervene and tell him it's time to brush teeth and get into bed.  "The LEGOs will be here tomorrow and you have school tomorrow and need rest," I direct his attention to the bathroom.  He begrudgingly goes, but not before his shifts his attention back to the half dismantled project.  Michael lowers his head in Charlie Brown style and goes to brush his teeth.

I head downstairs and after a short period of silence, I begin hear rattles and clunks of Lego bricks well past his bedtime. It only lasts a couple minutes.  It stops.  I am guessing that he must've needed to finish a few more to have the right stopping point.  I wait another half an hour and things are serene and quiet in my house.  I tip-toe upstairs to find him asleep in his LEGO dreamland.

The next morning, I awake from my groggy haze hearing clunk! rattle...  clunk! rattle...  clunk! rattle. I stumble into his room in my pre-coffee fog.  The kid is at his clean-up best.  "Wook, Mommy.  Ta DAAA!  All done!"  He is proud that he is caring for his LEGOs in such a grown-up way.  All neat.  All tidy.  This kid is good!  I am impressed and pretty certain that this is the first time in life he has shown interest in cleaning up...  anything, that is.

Those tiny blocks are also our life lessons.  Built brick upon brick, and then broken apart they can be recreated in a new and different way.  Each in a pile is no more than a mess on the floor of a family room.  But individual bricks in their perfect and thoughtful spots create the harmony of a larger masterpiece.  A miniature engineering project of life.

I add another brick atop my most recent creation in my life...  As I step back and take inventory of the project, I find the perfect spot to place it.  As I snap it into place, I feel my stomach drop and my heart stop just as it did five years ago in that one moment I saw Michael for the first time when we welcomed him into this world.  Pure adoration and complete awe.  He is five and now building his own path ahead.

As for my own building, it's another memory and another moment, I won't ever quite forget.

*   *   *   *   *

 *I was able to create these ideas courtesy of some pioneers before me (i.e. some pretty crafty fellow bloggers in cyberspace).  Check out these great stops if you are interested in creating similar things:

Cookies -- I didn't follow this tutorial, but it's a great one.  http://www.sweetsugarbelle.com/blog/2012/02/easy-lego-cookies/

Cake -- http://www.bettycrocker.com/recipes/building-blocks-cakes/ca36541e-624c-48af-ab78-68ef256e8903

DIY Lego Table -- Ikea Lack Side Table, 4 Lego baseplates, contact cement, and some patience.  You can do an online search for "DIY Lego Table" and you'll find a variety of different ways.

Lego Organizing for Our Lego Lab -- at iheartorganizing.blogspot.com

Tick tock.

Countless times through out the day, I hear my sweet little boy sing off-key...  "Gwick, gwock, goes da cwock, time to put our work away..."  Dylan's little musical tune from school got me today.  Tick, tock goes the clock, time to put our work away...

I am sitting at the computer mentally logging how we are going to motivate, rally and cheer on friends and family to raise money yet another year to find a cure for our boys.  I tap-tap-tap on the keyboard working to find the right words to express my heartfelt emotion.  Awe.  Inspiration.  Heartache.  Moments of my boys' reality swirl together with words like "hope", "life expectancy" and "better days ahead".  As the writing and thoughts take hold, my mind clutches all the images in a day...

Every day feels like a grind.

Because it's just life, I sometimes forget what an actual grind it is.  The medical equipment.

The repeated, daily sterilizing of said medical equipment.

The loads of medications.  Oh, the medications.

The mountain of insurance paperwork.

The doctor's calls.  The stress every time I see Dylan lick something that could potentially make him very ill...  he has no idea.

And the listening.  Listening very intently for illness.  Listening for coughs and how they sound.  And in this house...  which kid was the one coughing?

I think about how Michael's congestion has worsened over recent days.  I walk up to Michael's door in the early hours of the night to check on my sleeping angel.  Before I can even begin to crack the door, I hear his gurgled breathing.  It is loud and sounds downright uncomfortable.  A sea of smothering snot is audible and there is very little I can do to help him.

My shoulders shrink up as I cringe.  I close my eyes and gently touch his sweaty forehead.  He is not feverish, thankfully.  Just too many covers on this unseasonably warm spring night.  His brightly colored plaid quilt is shoved at his feet, but his blanket and sheet are cinched up to his chin.  I gently loosen them and pull them to his hips, so Michael can cool off.  His favorite Bumblebee Transformer pajamas shirt is revealed.  Yellow and black.  A good superhero fighting evil against the clock.  To save the world.

I remember what it was like to be a kid and have a cold at bedtime.  I have always hated going to sleep with a cold as a kid and as an adult.  The pounding sinus pressure and the shifting of the congestion from one compartment of the sinus cavity to another.  As a miserable allergy sufferer in the spring, I distinctly recall even on cool summer nights having an awful stuffy nose and not being able to comfortably breathe.  But honestly, I can't imagine what it's like to have my sinuses and lungs filled with extreme congestion.

Friends who are adults with CF have equated it to breathing through a straw.  Or never truly feeling satisfied when they breathe in.  Searching for a deep breath, they no longer know what the sensation is any more.

Michael's eyes are closed.  He is peaceful in the sounds of snorting, sniffing, and bubbling.  I can only hope that he is peaceful all night and gets much needed rest.

The morning greets me with Dylan announcing "Mornin' time.  Mornin' time."  I crack my heavy eyes and look at the clock.  Humph.  5:51.  He climbs into bed with me and demands juice and wants to watch shows.  Poor kid needs a diaper change beyond words.  Groan.  My husband is out of town on this morning and so Dylan plants himself comfortably on my husband's side of the bed with no complaints.  I make him lay quietly with me for another few minutes.  Even if for principle's sake to get the clock to pass 6:00 am.  I cannot justify getting up with my kids before 6 am.

After some time, he trumps.  It's now 6:31.  After I have changed him and offered him a sippy cup of diluted juice filled to the "tippy top", he is satisfied.  I crawl back into bed and try to slip back into my groggy light sleep.

Minutes later I hear it...  Deep.  Chesty.  And breaking.

Michael is awake and coughing in his bed.  I pause and stay very still listening.  I zero in with my ultra-high-tech mom radar listening device by fading down the Backyardigans music coming from the TV and the grumbling, stammering dog.  Little footsteps, metal clicking, footsteps coming closer.  More coughing that is getting louder.

Michael arrives in bed with me and Dylan and he works to curb his coughing.  I can hear the crud lodged in the tiniest recesses of his sweet little lungs.  At least with the coughs I know he is moving it around, which is part of the battle.  Then there is the "getting it out" and the controlling impending infection.  Translation:  Calling the doc for meds.  He is pleasant and cuddly.  I feel him shift downward firmly and settle into laying at the foot of the bed.

Once the next show has wrapped up, the vibrant green numbers on the clock report, 7:08.

We all hop out of bed and head downstairs and begin our day with respiratory vests and nebulized medications.  Same morning drill.  Same grind.  On this morning, the gears in my head calculate the timing of the day to get in extra treatments.  It is imperative that we break up that cough.

In my reflection of the morning at the computer, I glance at my watch.  Oh no!  It's time to go get Michael from school.  I bolt up from my daydream.  It's now a race to get Dylan in the car and strapped into his carseat to make it on time for Michael's pick up.  The next day he would start antibiotics for the continued sinus trouble and cough that is now plaguing him.

Days later, we find ourselves on a lazy Sunday evening embarking on a family walk.  Our bellies full of dinner, (honestly, the boys' bellies full of high fat custard-style yogurt, but never-the-less full), we decide a walk together would do us good.  We start off awkward and fragmented.  Pausing for the boys to look at goregous spring flowers like dandelions and then again for the dog to do her business, we can't seem to find a fluid stride.

It isn't until the boys are super wild and distracted that I decide to walk ahead with the dog and Michael.  I leave my husband back to wrangle Dylan, and propose to Mike that we have a good run the rest of the way home.  He is argumentative and finding excuses, no matter, I begin hastening my stride.  He starts to run too.  The dog is loving the jog and soon enough we are a pack fully running together.

Michael slows and complains that he is tired.  But I know better.  I challenge him we run a bit farther and then I suggest we make it to the bend where we turn onto our street.  We race all the way to the street sign.  I am listening again.  He sounds clear.  He seems good.  His words say he is tired, but all indications are that this boy is doing good with the exercise.

We finally arrive at the narrative street signs and we pause to look a back and search for Daddy and Dylan.  I suggest to Mikey that we can turn onto our street to walk home since I know he is tired.  "No, Mommy.  Why don't we run?!" he exclaims.  I smile and say, "Well, I know you are a GREAT runner, but it seems to me that you were saying you were tired, so maybe we should walk."  His blue eyes dance against the gray overcast sky.  There is a sparkle and his lips curl up with a sweet smile.  "No, let's run again."  And so we do.

We begin down the long street in a good even pace.  We discuss how he trick-or-treated at these same houses months ago in October.  "I think I got ten hundred candy that night," he recollects.  I myself remember the family of deer we saw as we slowed and crouched to watch them pass, just maybe a 100 feet from us.

Then suddenly Michael says, "Mommy, look!  We have only a minute and twenty seconds!  I am watching my timer on my phone.  They are catching up we better hurry if we are going to win the race."  I start laughing in my faster, airy breath as we jog.  This kid is challenging himself.  He is keeping his own timer.  He continues to give me status reports all the way down the street on his imaginary stopwatch - sometimes the time even ticking backwards.  At four, he loves math and time, but is still learning the concepts fully.  Whatever the case, I am loving the energy, excitement and enthusiasm of his appreciation of the jog together.  It is pure joy.

My running mate, trusty pup, and I all arrive at our driveway.  Michael exclaims, "We won the gold medal!  And we beat Daddy and Dylan."  I remind him about being a good friend and about sportsmanship.  We are not spent, but feel great at getting our blood pumping.  We ran the last stretch, probably a good 5 minutes - a long way uninterrupted for a 4 year old.  Back all the way to our driveway.  My radar detected no coughing.  No complaining.  I can't believe it.

As the days pass, the grind is exhausting.  On all of us.  In many ways, the grind keeps us going.  And yes, the clock is indeed ticking.  In my private moments, I can see through the lenses that remind me that each day is precious.  Each breath is so irreplaceable.  There are the moments where I feel like the sands are slipping through the hourglass as scientists in the lab try to work and rework that cure for my boys we so desperately need.

But in this run, I find something new.  Alive.  And beautiful.  My son's stopwatch is ticking.  Is it ever.  It becomes clear to me that he is running his own race.  On his on time.  He is setting his own pace.

And winning.

Every day.

21,000

21,000 times a day.

You do this 21,000 times every day and are generally unaware of it.  But for some, it isn't so easy.

You BREATHE.

Let me explain...  next time you grab for your Big Gulp, take a moment to pull the straw out and try breathing through it.  Now breathe through it for 30 seconds.  Next try breathing through it all day.  Then consider what it's like to do this -- every day.  Imagine 21,000 breaths like that.

If you frequent Two Salty Boys, you know that both of our sons have Cystic Fibrosis.  CF is genetic disorder where two little genes create a LOT of problems.

Our boys spend a couple hours, yes you read that right, A COUPLE HOURS every day doing breathing treatments with special inhaled medications.  They also do chest physiotherapy to clear their lungs of sticky mucus that is a magnet for dangerous bacteria and life-threatening lung infections.  These lung infections are the culprit of progressive lung damage and lung decline.  IV antibiotics are a given in the CF world.  Not a matter of "if" they will have IV's, but "when".  Treatments are labor-intensive and time-consuming.  And they are 2 or 3x...  EVERY DAY.  That's approximately 2 months of their lives each year working hard to breathe.

They also take a regimen spanning 60 pills a day and countless medications to help them eat, digest food properly, and grow normally.  Every time they eat or even simply drink a glass of milk, they are forced to take a handful of pills.  Belly aches are a state of normal for them.  Oh, and they need 150-200% more calories just to maintain weight and grow like other kids.

The hardest part for me is knowing that the clock is ticking...  And every breath is precious.  If you have made it this far, you probably aren't taking your 21,000 breaths for granted now.

My plea is a challenge to YOU, Two Salty Boys fans.

$21.

A buck for every 1,000 breaths you will breathe today to help my boys breathe easier.
And the catch is that you then SHARE this with all your friends with the same request -- $21.

That's 14 big gulps, if you're counting.
Or 4 coffees at a gourmet coffee shop.
Or 2 cocktails out on the town.

It's simple.
$21 and SHARE this with all your friends over email, Facebook, and Twitter
and ask them to donate $21.
And ask them to ask all their friends to donate.  Just $21.
 Pay it forward again.  $21.
And so on.

Donate $21 TODAY at...

TwentyOneThousand.com

And pay it forward to help someone else BREATHE.

Wouldn't it be a miracle if we could get 21,000 people to donate $21?   Let's see just how big we can take this.

"Life is not measured by the number of breaths we take, but the moments that take our breath away."  ~Anonymous

Salty and Sweet.

Autumn air and sunshine fill my afternoons driving Michael and Dylan to Michael's preschool most days of the week.  We talk about the pretty landscape and play games calling out "Leaf!" when we see a leaf drifting to the ground.  I just love hearing Dylan say to me, "Wook, the weaves are dancing, Mommy.  Dey are dancing," pointing to the leaves blowing along the street from a breeze and passing cars.

We have more nature in two weeks than one can really take in.  A flock of wild turkeys crosses a busy road near our neighborhood.  I literally have to slow the car because two of them are starting to cross but decide to draw back and continue to reside on someone's front yard.  We would see the same flock a week or so later.  A massive, neon green grasshopper greets me on the windshield of my car.  We spot an inching gray and black caterpillar trying to find a home near our patio.  The boys play caterpillars for days after this sighting.

And deer.  Oh the deer.  They are in our front yard, our neighbor's yard, they are crossing the busy street to Michael's school.  They are eating.  They are staring.  They are everywhere.  I am still stunned when I drive down our neighborhood street and see six of them hanging out.  Ahh, nature all around us.  Funny how nature is at the very root of everything.

Even more routine than our wild life sightings around suburban New Jersey are the busy morning Cystic Fibrosis treatments that jump start our days. Around 7 am, I rev the boys' machines up and the unmistakable thrum of the orchestra begins.   The decibel level has skyrocketed since the arrival of Michael's new nebulizer compressor.  It is hospital grade and it is a bad-ass machine.  His other compressors just couldn't survive with the demands of daily treatments.  The increased volume in our home has become typical and the boys have learned to accept watching TV on volume 100, no joke.  I, too, have had to accept it.

I fumble around awkwardly brewing a cup of Keurig coffee in the kitchen while the ear-deafening sounds of Nick Jr. throttle the family room .  Now, this machine was made for me, I am certain.  My Keurig is simple, it is brainless, it makes a great cup of coffee.  And it is QUIET.

I say a morning prayer for my gratitude for my boys' health, the machines and the meds that keep them that way.  As I sip my steaming hot cup of coffee, I peer into the family room where the boys are shaking from their vest airway clearance treatments and their nebulizers are steaming away.  This morning's prayer is for the medicine misting through Dylan's mask and Michael's mouthpiece at this moment.  And it is not what you might expect.  It is simply salt water.

Something so basic.  So earthly, it's ridiculous.  No super crazy science (well, I am sure there was some that went into it), but no chemical compounds or medicinal discovery...  salt water.

Isak Dinesen, a literary legend, once wrote,

"The cure for everything is salt water -- sweat, tears, or the sea."

In the case of Cystic Fibrosis, I am convinced this quote couldn't be more true.

The sterile salt water is the hydration that their little lungs so need.  Because Cystic Fibrosis interferes with the fine balance of salt and water in the body, the boys' lungs, intestines, pancreas, and sinuses, and other "tubes" of the body become dry.  Fluids that normally flow through these areas of the body are replaced with dryness and a sludge that clogs the organs and passageways in the body.

So I have heard, this special salt water called "Hypertonic Saline" was discovered by a pulmonologist in Australia.  Whether it is truth or myth, the story goes that he began to notice that a subset of his patients were markedly healthier than his others.  And when he began to do some digging on the underlying reason why he realized that that those patients that were surfers tended to have better lung health.  The theory was that the natural conditions of the salt water from the ocean in combination with the cardio activity helped those patients with better lung hydration and better clearance in their airways of those sluggish secretions that form.  Supposedly, he began to wonder since there was noticeably better lung health for his surfing patients going into the ocean, was there a way to bring the benefits of the ocean to patients?

I set my coffee mug down and continue to watch the steam swirling out of the holes in Dylan's mask and Michael's mouthpiece valve.  Salt water.

I believe that this drug, Hypertonic Saline, which the boys breathe in twice a day for about 20 minutes is incredible.  I really am banking on this drug in the worst of the cold season this year.  I feel good knowing that both boys are treated with it every day.

Imagine needing to clean your kitchen and having a damp sponge...  the cleaning possibilities are endless!  There is so much a wet sponge can tackle.  But take a dry sponge, hard and almost rigid.  It is scratchy and menacing, certainly not pleasant and in no way up for the cleaning task.

Now imagine the value of adding just a little water to one side of the sponge... what happens?  The sponge will continue to soak the water up drawing it further and further in, practically seeking more water.  Saturate the entire sponge and what next?  You can wring out the water after cleaning with the sponge easily and disposing of the yuk water you no longer need.  This is basically how I envision Hypertonic Saline to work and I believe there is immense value in it's daily treatment for the boys.

Their lungs soak up the salt water up because they need it.  And once their are hydrated that can more easily "wring" out their lungs and dispose of the sludge and yuk stuff that is hanging out in their airways.

I am startled out of my daze while picturing just how this medicine is getting down into their lungs.  Dylan is yelling over the machines, over the TV and through his mask that his mask is "Swippin".  Translation his mask is falling off, it is slipping.  I dart into the other room to help him.  And so our day begins.

By bedtime, everyone is exhausted after our post-school treatments, dinner, bath, books and bed.  There are so many parents who feel my exhaustion right along with me.  By 6 pm you are just ready to pass out.  On this night both boys are in their beds by 7:30 and the house is silent for some time.  They are tucked in and I believe have fallen to sleep.  My husband is still at work, so I decide to take a minute on the couch to catch the days headlines on the news.

I jump when I hear Dylan begin whining loudly and I head up to his room.  I can't get up to his room fast enough.  He says loudly in his deep toddler voice, "Mommy, you didn't come, I called you and you didn't come.  I scared somebody take me."  He is anxious and unsettled.  I help him back into his wee toddler bed, and he scrunches down under his covers.

He is so tired as he is blinking his eyes close.  I think for a moment he is playing a joke since his blinking is so exaggerated.  I gently stroke his hand and he quietly smacks his mouth and opens his eyes wearily at me.  He pats my hand closes his eyes.  He whispers something inaudible and pushes my hand.  "What, Dylan?" I gently ask.  He is almost an actor out of a Hollywood drama.  My little boy whispers, with his eyes still closed, "Go, Mom."  He is nearly asleep and restful.  I am in awe.  He needed one last comfort from me and was ready to drift off in slumber.  The drama of his performance is almost Oscar worthy. 

I exit the brief scene, which I plan to submit to the Academy first thing in the morning and I head downstairs to brew another cup of coffee.  Exhausted and pondering what next as I wait for the speedy brew to finish.  Easy answer.  I pop a sea salt caramel in my mouth.  I chew it slowly enjoying the salty bite and the contrasting sugary sweetness.  The punch of the salty crunch curbs the gooey chocolate caramel.  I love these.  These are a bite of therapy.

I feel the corners of my mouth curl up and I fight the grin that emerges.

Sea.

Salt.

Caramel.

Guess that vast ocean really can be the cure for everything.

Darwinism.

I find myself with one foot stuck in the thick muddy tasks of every day life and the other foot in the rapidly swirling, rushing waters of the impending move to-do's that are ever mounting.

One weekday afternoon, I am standing at my kitchen sink, day-dreaming over countless plastic pieces and scalding hot soapy water while washing the boys' nebulizers for their daily breathing treatments.  I am gazing into space, lost in my thoughts of how the hell we are going to get life in order.  Pretty standard for me, but on this afternoon it is a thought that is quickly ballooning larger than life.

I am startled out of my cloud when I hear Michael screaming agitatedly.  Actually, he is screaming as though an ax murderer has stormed through the front door and arrived in the kitchen.  I glance up with confusion trying to piece together what is going on.  He is standing only 15 feet in front of me having the loudest spaz attack I have ever heard.  It is deafening.

He is frozen pointing at our visitor, although it isn't an ax murderer, rather a black bird with a red stripe on it wings.  The bird is hacking nervously on one of the screens of our kitchen windows situated around our kitchen table.  Michael, who happened to be standing right in front of the windows is now beyond Level 2 Kid Panic Mode and has entered full blown Level 1, Red Alert Child Hysteria.  My brain is still not understanding his fear.  I witness veins popping out of his neck as he screams.  His face is almost scarlet red.  Then it hits me in the decibel shattering chaos...  The bird is INSIDE my house perched on the screen and pecking furiously trying to get OUTSIDE.  Now, Michael's face nears a hue of purple.

I suspect that I myself have gone to a shade of ghost white since I swear I feel the blood drain out of my body.  I know if I look down I will pass out.  The bird continues to angrily flap its wings.  The bird and I at this point are both trying to figure out how we got in this situation.  I drop the nebs and stop the rushing faucet.  I make eye contact with Michael and as calmly as I can tell him to quiet down.  I swiftly usher Michael out of the kitchen and try to focus on what to do.

What the hell...  what the hell?!!  The what hell do I do next?  Some retail stores are stuck with birds permanently because they just can't get them out the door.

I grab a magazine off of the counter and fling our back door open.  I will this stupid bird, who obviously isn't the smartest thing in the world, to leave.

Please, please, please, please leave!  Isn't this a really bad omen or something?   Who the hell besides me has a damn bird fly into their house?  I make long gliding, controlled motions from the bird to the open door.  I am whoosing air with the magazine past the bird.  As I am telepathically commanding the bird to leave, I start thinking of Darwinism.  This stupid bird surviving in the wilderness of surburban Chicago is amusing.  And likewise, this bird surviving in our home is even more ludicrous.  How did it fly into our house??

As I stand in the garbage pile that life has thrown my way, I have to believe I am paying my dues and that the storm clouds will one day part.  Or there is something more behind why these baffling things happen to me.  It defies reason that certain events happen.  In this case, it's just plain stupid.

Sometimes, I can't figure it out, even if I tilt my head to the right just a bit to view a situation from a different angle or even if I stand back to look at the forest instead of just the one damn tree.  I used to be that young professional who was polished.  I used to be a great friend who would just call to see how you are doing.  I used to have it together and spend time quietly reading my favorite novel or even oil painting.  I USED TO BE THAT PERSON.  Now, I am schoo-ing a squawking living creature away from my dinette.

Hello?! Bird, this is prison for you...  you might want to ask our dog some days.  Please, PLEASE!  The bird stretches its wings broadly after a few minor flutters and as quickly as it arrived in my kitchen, it departs.  One swoop and it is gone, but not after leaving an aftermath of poop.

Oh, the damage.

First I am off to investigate for its point of entry.  I reason through the possibilities.  We have no air-conditioning as we have been in a embattled discussion with a company who we suspect contributed to the demise of the air conditioner as caused by the death of our furnace (refer to our-furnace-outage-in-the-dead-of-winter-blog titled "Raindrops Keep Fallin' on My Head"...).  No air, means open windows...  WITH SCREENS.  And then it hits me like a semi.  The guest room.  We have family staying with us and it is the one room in the house that has no screens and gets the hottest.  Earlier I had jimmied the windows so that they were open at the top where the blinds were gathered up and blocking the opening.  It was no more than open six inches wide enough to let air pass through, but the blinds were covering the opening.  The damn bird hit an unbelievable target and pushed its way in.  What are the chances?!

I walk the first floor to find bird droppings in the family room and the kitchen, which is exactly the same decelerated path a bird would likely take from the second floor guest bedroom.  I clean the mess as I go.  I don't even have to do any more Sherlock Holmes sleuthing at this point.  There are bird droppings on the rail over looking the family room and all over the guest room.

On the carpet, on the window sills, on the linens.

Evidently, birds must poop when they are In survival mode.  YOU HAVE GOT TO BE JOKING ME?!

All I can wonder is how much bacteria has entered my house (clearly, I am not rationale at this point since obviously a home naturally has a wealth of bacteria anyways).  And what bacteria?!  After I clean this mess I will need to be dipped in a bath of bleach to feel clean again.  And I can't even consider washing the boys nebs.  I ponder if I can bleach the carpet.  Then reassure myself that, no, it is probably not a good idea.  At leas maybe the window sill???  I realize my insanity setting in.  Agh.  I feel like disease is all around me.  Damn bird.

Survival is my only mode.  I have learned that during this phase in my sweet family's life, I am responsible to react every moment of every day from sunrise and survive until another sunset.  Weeks after the bird's cameo, I wake up to the dog puking.  And minutes later find that my husband has left a pack of gum in his pocket and it went through the dryer.  And, yes, I check pockets.  He put it in a random cargo pocket.  To add insult to injury, the dryer is new.  Only a couple days old and now the drum is covered in minty, green freshness.  I spend plenty of elbow grease cleaning it so the next batch of garments aren't also plagued with gobs of pliable chewing gum.  Survival.

It's almost laughable.  Or cryable.  It's a toss up.

The boys excitement for a new adventure is apparent.  We read Mister Rogers, "Moving" and talk about our trip to the new house in New Jersey.  The bon voyage party has come and gone.  Most of the good-byes and tears are done.

Now, it's go time.  The boys spend the day at their grandparents as my husband and I are getting things orderly.  Among the boxes, he casually informs me that he also needs to get something critical completed for work by midnight two days from now.  He works best under pressure.  He really has a talent for it.  I on the other hand am a planner, but the whole bird thing is teaching me to simply react.  Planning lately is just not an option.

The frenzy of the house getting packed happens faster than a blink.  The packers descend on our house and start their drill.  I can't even sort the remaining socks and pair them.  Nope, they packed them.  The garbage bags, where are those?  I need one.  Yep, they packed those too.  Good thing for the bird that it got out.  Otherwise, it would've been packed up along with the rest of our life.  The dog pouts under the bed, angry that we are moving.  She might also be wondering if the the packers are coming for her too.

The afternoon wraps up and boxes are nearly all the remain.

The dog is clearly confused and my husband and I start to plot out what is ahead.  I leave and head to Papa and Nonna's to help put the boys to bed and relax for a while.  Bathing the boys, getting in their evening treatments, and trying to get them to settle in and sleep over at their grandparents is not an easy task list, but all are critical.  After they are finally winding down and almost asleep my husband arrives after wrapping at our house and signing off with the packing crew.

Before he starts to tackle his work, he heads up to take a quick shower.  Over a cup of coffee and conversation with Nonna, I hear him scamper down and stunned he realizes that he has no t-shirts in the bag he packed.  No shirts at all.  Yep, the movers packed those too before he could get them in the bag he had also set to the side.  See, I told ya, it's that survival thing again.  I shake my head and laugh as I sip my coffee hoping the scorch the nervous butterflies in my stomach.

He scavenges random shirts at his parents as though they are his life-line for the coming move.  Once he is satisfied with his new collection of old sports t-shirts and random fundraising shirts for his wardrobe, he hunkers down to focus on his work.  After a good hour it is a obvious that his efforts (of course) would be thwarted.  His computer is giving him trouble.  After trouble-shooting with 24-hour IT people on the phone, it is inevitable.  He has to go into work the next morning, battling rush hour traffic into downtown Chicago, to fix the glitch with his computer.  Conveniently, the moving truck will roll up promptly at the same time at the house.  We'll do what we gotta do.  Survive.  Exasperated, I yank on a lock of my hair, nervously laugh, and giving up plunk my head on the kitchen table.

The next morning, hubby hurries out the door as I ready the kids to meet the movers at the house.  Michael and I watch as Optimus Prime (the best way we could describe to Michael what the moving van would be like since he is obsessed with Transformers) arrives at our house, backing up gingerly onto our small cul-du-sac.

A wave of sadness swells in me.  The memories in this house like that damn bird are irreplaceable.  Random memories scan through my brain at warp speed like a high-res imaging computer.  Our dog first walked into our home as a puppy and the first thing she did was poop under the dining room table.  The Chicago White Sox won the World Series when we had just moved in here.  Time stopped both times with the joy of learning we were having a baby in this home.  And time stopped again when they each were diagnosed with Cystic Fibrosis.  The Christmas parties filled the walls of this house with smells of food, wine, and cinnamon.  There have been countless times we have all been sick in this house.  I think of our beloved next-door neighbors who have helped with a cup of sugar way more than I can begin to explain.  I envision the Christmas tree there and the Easter baskets over there.  I reminisce of cups of coffee with family and friends at the kitchen table.  And all the glasses of wine at the dining room table.  Weddings, parties, first birthdays, Thanksgivings, and just hanging out in comfy clothes on the couch.  The bustle of bath time every night and Dylan streaking through the upstairs hallway and rooms.  The dance parties with the boys and the music blaring in the office.  The laughter.  The drama.  The commotion, the activity, and the life.  In this house.

I wipe away a tear and stand very still watching the truck halt in front of our driveway.  It stands in its temporary spot, ready to start loading our home.

My heart gives way to thrill and new things.  New friends.  A new little red school for Michael.  A new home.  A new role for my husband at work.  A new pulmonologist, a new hospital, a new pharmacy.  Even new insurance.  New experiences at the shore as the boys see the ocean for the first time.  These too will some day be irreplaceable, I remind myself.

I pull Michael close, and together we inspect the eternally good Transformer parked in front of our home.  Optimus looks ready.  And so are we.  I grip Mikey as he stares in sci-fi fantasy at the behemoth.  Entranced with wonder, he stares at the truck waiting any second for it to transform into a three-story robot.

There is but only one way to survive this time...  laughter.  At least for now, I will survive.

The laughter continues...  stay tuned.

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.

Shooting Star.

Super Bowl Sunday is usually a casual get together in our house typically spent celebrating my wonderful husband's birthday while enjoying the game.  Chicago Italian Beef Sandwiches, some chips and dip and a cake.  Casual and chill.

In recent days, Michael has had a touch of a cough that has quickly escalated into the worst cough we have ever heard out of him.  Junky.  Deep.  Painful.  This cough has evil lurking inside of it.  It isn't the cough that is so menacing, but the struggle to recover from the coughing that is so alarming.

While everyone is with friends and family enjoying the Super Bowl, we too are with family doing the same.  However, for my sweet little boy, Super "Bowl" had a whole different meaning.  Michael has had no appetite lately.  I am freaking out with every bite or lack thereof at a meal and knowing that there is a bigger picture of his health going on.  I fear that his lungs are getting crudded up.

The ray of sunshine is that his throat culture from the last clinic visit showed 'normal' respiratory flora, in other words "nothing".  For those not in on the CF lingo, a 'culture' is usually a swab at the back of the throat.  Think of when you were a kid and had to go to the doctor for a strep test.  Basically, the thinking is that if the throat is showing a dangerous bacteria where someone is exhaling and expelling the germ through the throat, then clearly it is hanging out in the lungs.  It is certainly not fool proof.  There are the hits and the misses where something is brewing in the lung.  With the misses the little evil germ may be deep in the lower recesses of the lungs, and it's just not detected in the throat.

Cultures are a great way to take, almost preventative action against worrisome germs.  While not truly preventative in the sense of the word, it is a way to aggressively keep up on top of what is going on in the body without invasive testing.  When Michael was 2 years old, he asymptotically and incidentally cultured a nasty bug called Pseudomonas Aeruginosa (PA).  PA is a lung destroyer.  It is one of the culprits of considerable lung decline in CF patients.  And babies and tots today are treated aggressively if PA is detected.  PA's favorite home is a warm, dark, moist place where there is a break or vulnerability with a host.  Basically, a CF lung is an ideal place for PA to grow.  It is not the worst of germs, but it is certainly feared.

I once recall a social worker sharing with me that there are five grieving moments in a CF family's life.

Diagnosis of CF.
First hospitalization.
First diagnosis of PA.
Lung Transplant.
Death.

PA has that much impact on a CF family.  Often the first hospitalization and the first diagnosis of PA are the same, since an individual might obviously be hospitalized because of a PA infection.

There are other germs that do dirty work.  When Michael was hospitalized in November, it thankfully was not PA.  But it was Staph.  How crazy that I was thrilled that he ONLY HAD A STAPH INFECTION IN HIS LUNGS.  It is shocking to other people that I am so casual and so nonchalant about a serious pulmonary infection.  I am usually sad and struggling for grace in those moments.  But truly I keep it together because I know there are considerably worse news that could come with a lung infection...  So, I'll take Staph any day.

I ramble on about these germies because a culture can mean so much.  Families wait for the culture news.  They cringe when the phone rings three days after a clinic visit fearing word about a germ that has settled in.  Cultures can give a good indication of what's in the CF lung.  But all the while, they can be very deceiving since they are not all-telling.  It's the easiest indicator of what is lurking in a CF lung, but it is certainly not the best one.

And strangely enough, families also almost wish for a positive culture when the little ones just don't seem to be feeling 100%.  At least with a positive culture then they know what they need to treat.  CF can be such a complex and confusing disease.  Right when you have the answers or things are going well, you are slapped in the face by a million more questions.

Just three days ago I was telling a CF clinician that Michael's cough was improving.  And we rested our heads that night knowing that his culture came back with "normal respiratory flora".  Phew.

Normal.

And tonight, during Super Bowl XLV, Michael is hanging out on the couch when he begins coughing so hard he starts gagging.  I see the fear flash in his eyes.  I ask him frantically, "Mike, Mike, do you need to go to the bathroom?"  He nods during his torture-some coughing fit, the skin around his eyes red.  His eyes are strikingly blue against his bright, rosy pink cheeks.

I swoop him into my arms and rushed him into the bathroom.  A few hard coughs and he throws up.  I rub his back in circles, thinking "some Super Bowl".  Poor Mike is bracing himself on the "toilet bowl" as he throws up and continues coughing.  I keep rubbing his back.

His sweet, sad eyes look at me water welling in them.  One tiny tear breaks on his left eye and travels half way down his cheek.

One lonely tear.

He looks down at the toilet waiting for more waves of sickness to come.  The tear signifies his confusion at it all.  This sweet tiny tear falls, nearly suspended in the air for a moment as I watch it, into the toilet.  My heart falls with it.  Right into the toilet.

The coughing worsens through his last CF treatments of the day and it is clear that we will need to call the doctors first thing in the morning.  Dread rolls in.  Fear and frustration what is coming on the horizon.  There is something behind this intense, painful cough.  And now we might need to go deeper with our questions and with our tests.  I am hoping that the culture is right and this time did not miss something.  But my instincts are telling me something altogether different.

We need a cure for these kids.  And we need it fast.

Two days later we head to the doctor with Michael.  We opt to leave monkey Dylan with family and trek to the hospital.  "Pack a bag" our team suggested.  Translation...  Michael could very well be admitted for another hospital stay.

We do the standard round of tests upon arriving.  Michael plays pleasantly on the high exam room table with the crackling, medical paper with every shift of his weight he makes.  He pushes his Matchbox cars around and plays with his Transformers.  My husband and I sit side by side on our smart phones, frankly both too nervous to exchange dialog.

When the doctor walks in, we share his latest troubles.  He's not eating.  He's flushed.  He complains about joint pain.  His shoulder.  His elbow.  His hip.  His knee.  He is coughing.  Deep.  Rocky.  Painful and chesty.  We answer all the questions and the next course of action is changing the breathing treatments and adding more medications.  And we take another culture hoping that in the coming days we will have more direction on how to best treat Michael.  I take a deep, controlled exhale.  The ugly, bland hospital tile glares back at me angrily.

The doctor strategically helps me see the easiest way of administering the new medications without really adding too much on our plate.  We talk about the overwhelming routine for both boys.  She recognizes the stress on our family.  The weight on my shoulders is apparent.  And then she hits me with it...

No school for Michael.  No parties, no restaurants, no grocery stores, no unnecessary trips out.  No big group gatherings.  We need to try to keep him virus free for a while.  She is hoping that this can help him to recover.  Instead of Mikey continuing to get knocked down while he is trying to get back up.

No school?  How unfair!  I feel like the four-year-old.  While Michael would handle the news far better at a later time, I, on the other hand, am not handling this well at all.  My reaction then earns me the pep talk.  But that is the simple way of putting it.  Our doctor, whom we trust completely, delivers her honest observations that I need some help.  No, not the "coo-coo looney" trip or "get this girl a drink" type help.  But regular help a few days a week.

She recognizes that we have all hands on deck with family and friends.  Everyone is more than generous pitching in to help us get to a doctor's appointment or a much needed date night.  We have been greatly blessed with a support system of love, scrappiness and help.  A "make it work" crew.  But what she is talking about is to have some regularity and routine.

We leave the hospital thankful to be going home.  But are struck with the reality of our 'run and gun' days as my husband leaves the hospital heading for Midway Airport to leave for a business trip.  I pack Michael into the car and head off to pick up Dylan.

No school for Michael is a bummer.  I talk to the director of his preschool and we orchestrate a plan so he can still "exchange" Valentine's with his friends.  Also, I share my thoughts on trying to 'replicate' the activities they are doing in school so he can experience similar things from home.  I will make things as normal for my kids as possible.  I want to fill the holes that this stupid disease creates in Michael and Dylan's lives.

I decide that it would be idyllic to give away heart shaped recycled crayons for Michael's Valentine's exchange for his classmates.  Basically, you know all the broken bits of crayons that you end up trashing over time?  Well, we melt them down into new crayons.  And believe me, we have PLENTY of those broken crayons from Dylan's favorite past time of throwing crayons on the floor.  All day long.  I haven't quite understood what game he is playing, but he really likes dropping crayons on our hard tile floor.  Not a good fate for a trusty standard crayon, but great for recycling crayons.  We have done it before and it's pretty cool.  However, things were just off this time.  Michael and I spend time organizing the crayon bits into the different hearts to make spectacular color combinations.  He is stoked for this project.

BUT ONE FATAL FLAW. 

I put the silicone bake ware in the oven WITHOUT A TRADITIONAL BAKING SHEET UNDERNEATH.  As I go to remove the floppy red silicone filled with hot wax, I juggle to keep the hot molten liquid from dripping or sloshing out.  Even better yet, I have two awkward potholders that I am trying to manage.  I brilliantly decide to try to slip a baking sheet under the stupid, unstable silicone.  As I do, the crayon wax pours out toward me on the baking sheet.  It wouldn't have been so bad, except that I freak out and then all the wax starts to pour into the floor of my oven.  Romantic violet.  Rustic terracotta. Bold magenta. All swirl together taunting me.

Then, the gray smoke starts.  A steady stream of smoke starts to pour out of my oven.  There is gray smoke everywhere. 

Crap.  Crap.  Crap!  CRAP!

I yell at Michael to get out of the kitchen and to get Dylan out too.  I send them to Michael's room (in hindsight I should have sent them to the basement, HELLO!, smoke rises) and tell them to close the door.  I start running around the house freaking out, and thankfully not swearing, while I frantically open windows.  Again, this would be a fine idea except it's NEGATIVE 15 DEGREES out.  I have no choice.  I open 7 windows downstairs and 2 windows upstairs and have all fans going.

I am surprised when I run upstairs to find both kids up in Michael's room.  Michael had been an amazing little kid towing his brother swiftly upstairs to his room and closing the door.  In this moment I know, he is a survivor.  He listens very well and he has instincts.  Michael knew I was frantic but focused and dead serious when I told him to get his brother and him out of the kitchen.  Completely amazing four-year-old.  I head back down to continue the clean up.  I continue wiping the smoking liquid wax out of my oven, totally baffled on what the ultimate clean up job is going to require.

When the plume of smoke has passed and the emotional flurry is over, I look around and see an indescribable haze throughout my house.  Oh, I am totally going to win "Mom of the Year" award for this one.  Show of hands.  Who wants to nominate me?

Minutes later the rooms have cleared and the stale air is replaced by sweeter, cool air.  Mmmm fresh air.  We are able to close the windows and relax a bit.  Michael is vigilant in his quest for safety and doesn't want to leave his room.  I explain my concerns about the smoke sticking to the "glue in his lungs", but that the smoke is gone and he is safe.  He later recounts the whole explanation back to me later before bed.

It is way past both kiddos' bed time, but Michael still has treatments left to do.  As I grab his nebulizer parts and mask, I realize that these were not inside their protective container.  Even though I had spent all the time earlier today sterilizing them, they were not covered during the crayon fiasco and were exposed to the smoke.  Well, I can't really do Mikey's treatments so I run him on a vest for his airway clearance and figure we will get back on track tomorrow.  I tiredly start rewashing the nebs, which I had done only hours previously, and a pot of boiling water.  No rest for the weary.

As I am washing the tiny plastic pieces that I have so many times before, the dog stares her pathetic eyes at me.  She grumbles. She stammers backward as if scolding me.  The whirr of Michael's vest and the insane volume of the Transformers show in the other room drone out most noise, but I can still feel the dog's eyes burning through me.  My chapped hands sting under the scalding hot water as I wash the medical equipment.  I finish up the washing only to hook up the dog's leash and take her outside to do her business.

As I am standing in the frigid night, I look up to stretch my neck and for some visual relief.  I love looking up at stars on cold winter nights.  Then, I see it.  I see the most perfect, unmistakable streak of light in the black sky.  It's nearly above me as I stare up at the heavens.  It travels from my left and runs to my right, but not until it makes a slight wave up, then slightly down.  The magical omen disappears.  It is so fast.  I can't even explain how quick it crosses my cornea.  But it is undeniably there.

I make my wish.  And it's not for a clean oven.  And it's not for some amazing gadget so the dog can let herself out.  It's not even for a glimmer of sanity.  It's for my two little troopers who have more bravery and resilience than anyone else I know.  I open the door and feel the warm air hit me.  My muscles relax.  The whirr continues from Michael's vest.

Now, how the hell am I going to clean that oven?!

All I want for Christmas.

This week, the Christmas prep is underway at our home.  The lights all twinkling.  The pretty gifts starting to hide under cover of beautiful papers and magic ribbon.  And the yummy scented handsoaps are now out the bathrooms.  We no longer light candles, at least like I used to.  I fear my boys inhaling some invisible soot.  Ridiculous, I know.  But there are certain things that are just different.  I miss scented candles, so the antibacterial handsoaps will have to do.

This is also the first Christmas without nuts.  Dylan was diagnosed with nut and peanut allergies earlier in the year.  No chestnuts roasting on an open fire, around here.  Uh huh.  Nope.  No peanuts.  No almonds.  No traditional family coffee cake littered with crunchy accent pecans.  None of my mother's famous peanut butter fudge that I could eat a whole tin of as a child.  None of it.  Having to rethink traditions and navigate the holidays with a new insight...  or at least dodge the landmines.

Earlier this week, Michael helps me wrap some Christmas presents.  He is good company and in a bossy tone keeps telling his little brother who is playing a round of golf in the kitchen and family room, "No, no Dy-Dy.  This is a big boy job.  I am helping mommy with tape.  No, no Dy, you're not big enough."  If anything it does give me a good laugh.  And Dylan could care less, as he is repetitively practicing his golf swing.

But it is clear that Michael is excited at the completion of each package.  Each one wrapped in shiny gold or red striped paper.  He helps me choose the heavy fabric ribbon and tie each one on with impeccable precision.  I hold the pretty satin among my fingers, wrap over and around the first wave of ribbon, and then his little finger would, SMACK, hit the first tie of the bow to hold the ribbon in place for the final knotting tie.  He knows his job and he is going to do it with the intent of one of Santa's elves on Christmas Eve putting the final touches on toys for good children all over the world.

Then he helps me pick out the special gift tags.  I use pictures and greeting cut-outs from this year's extra personalized Christmas cards.  He is thrilled by the personal touches these add to the gift...  He continues to persist that each gift should have a picture of him...  just him.  For the record, I have never claimed that my kids are not narcissistic.  Evidently, Michael is comfortable with everyone's love for him.  Then Michael eagerly runs the package into the other room with urgency and care to place it gently with the other packages.  His joy and thrill of Christmas tasks is palpable.

Yesterday, Michael announces to me that he wants to write his wishlist.  He is intent on documenting for Santa Claus exactly what he wants...  an orange remote controlled car, a candy cane, and a space ship.  He asks that I write the words out on a separate sheet of paper so he can copy them onto his paper independently.  We sit together as he lets his wishes be know.  His letters are skillfully done and he is quite the artist by drawing the car and the candy cane he wants.  But to be sure that there is no room for Santa's misinterpretation, he asks if we can give Santa my version also, which he has adorned with Christmas ornaments along the bottom.

All of this on a day that my two sweet kids are featured in the Chicago Tribune.  Our story was shared with thousands of people.  Our fight with CF every day.  The lovely family picture of the four of us on the cover of the Pediatric Health Report still makes me laugh.  The facade.  No stains on anyone's shirt.  No one fully scowling.  And everyone looking at the camera at the same time.  A Christmas miracle in itself.

A better insight into our world is me trying to get dressed after our gift wrapping session. With the kids downstairs in the family room doing treatments while watching TV, program of choice, clearly, A Charlie Brown Christmas.  I decide to look presentable for the day...  a big deal on any given weekday.  I throw on jeans and a casual shirt and head for my unorganized make up drawer.  I shuffle items around quickly since I know the clock is ticking.  I pull out my basic black eyeliner of the drawer and delicately start to line.  POP!  Amazingly, over the ear-shattering TV volume of a Charlie Brown Christmas, I hear a tube pop off the vest and machine Michael uses airway clearance.  I run down the flight of stairs and to the family to put the tube back on.  Then, Dylan's nebulizer mask slides off his little head.  I put it back on.  Then, run back up to my bathroom.  As I rummage around the drawer for perfume...  POP!  Oh brother.  I run down replace the tube to its proper position and run back up.  Then I hear it give again.  Tubes are off of Michael's vest.  I fix them.  And this time, Dylan is pulling at his mask.  Dylan is smiling his brilliant, lovable smile with his dark glittering eyes.  "All done."  He makes the "safe" motion with the focus and certainty of a major league baseball ump.  Oh brother.  He fights me the rest of the treatment.

Then, I get the added joy of cleaning up after the dog that is eating cinnamon crumb muffins out of the trashbag.  Typical.

But a wishlist, huh?  Gosh, my Christmas wish is obvious.  Anyone who knows me wouldn't even ask the question.  The answer is there, before the words are asked.  Just spend a day with my family, actually an hour or two with us, and it is answered in kids' endurance and regimen.  It is answered in the daily struggle with what's normal and what's not because of CF.  And it is answered in my heartache.

All I want for Christmas is a cure.  A cure.

A CURE.

My head is pretty fuzzy this morning, but I awake to realize that none of our nebulizers had been sterilized last night.  32 stupid plastic pieces my boys' breathing relies on.  EVERY DAY.  I am frustrated that I can't ever truly rest my weary head.  I can't ignore that task.  Even if I am exhausted.   Most days I can barely keep up.

CF doesn't care about the nebs not being sterile.  Or an important meeting.  Or a busy day.  It's always present.  Always in the way.  It's a matter of maneuvering the best path each day.  And on top of it, dealing with, well, everything else that comes along with life.
This could be perceived as an annoying rant.  But, CF isn't about me.  I am not ranting out of selfishness.  I am ranting about much more than that.  It's about my kids who are fighters.  I am just the bystander in awe of their strength and their will.  But it *is* about the quality of life for them and for our entire family.

Yesterday, as we did evening treatments, Michael picks up a stuffed animal that he had found around the house.  Though he doesn't have a particular attachment to it, I watch him as he pretends to strap it into a vest and mask.  "Oh oh, Mommy, he has 20 more minutes..."  Then he continues, "Ah ahhh, Mommy," as he wags his finger in my face, "he forgot his sprinkles."  And then he motions as though he is delivering pills to the the furry animal.  The he hugs and cuddles it, "My baby."  He rocks it.  Outside, I smile at Michael and laugh with him that "Uh oh, he better take his medicine" and commending Michael for doing such a great job caring for his little baby.  But on the inside, my heart hurts.

It is one time that that I can see with crystal clarity that our normal is heartbreakingly NOT NORMAL.

Late yesterday, as we drive to get the boys' haircuts, Christmas music is pouring through our car.  Michael sweetly says over the melody, "Mommy, can I be you when I grow up?"

I am stunned.  I am almost unable to get a response out.  I am clearing my voice through the first words of my retort, "What?!  What do you mean?  Why do you want to be like me?"  I am expecting a contemplative answer, because that's just the kind of kid Michael is.

"I just want to be you when I grow up."  Simple.

I start crying.  A complete torrential downpour of tears.  It's the nicest compliment my kids can give me.  How sweet.  How wonderful.  And then the terror sets in...  seriously, I can never let my kids be as neurotic as me!  But what a truly special, thoughtful gift of words.  I am laughing and crying as Michael's little face shows confusion directed toward me in the rearview mirror.  "Mommy, why you cry?  Are you sad?  Why you sad?  It's okay, Mommy.  No cry, Mommy."  He continues to console me.

Although, I really want that cure this Christmas, rumor has it that I might have to wait a few years.  Possibly even a decade, but it's not that far off, at least that's what the experts say.  And I really believe that some Christmas, I will in fact get that wish.

Instead, this year, I will simply take my son's love and adoration and be thankful for all that I have.  EVERY DAY.

Oh, and if you happen to see Santa or write to him this year, would you mind putting in a good word for that cure?