Run.

Michael is a fiercely competitive kid.  He excels in math and loves it.  Reading, eh, not as much.  But he finds his way through first grade.  As the year winds down in the spring, we start to hear a cough.  It is peppered throughout his spring soccer season.  It sounds crackly where his airways are constricted.  I have heard this cough before and I don't like it.  Last time this crept up in the fall of 2013, he was admitted to the hospital for 6 days.

I notice his laugh sounds crunchy.  His exhales sound crackly.  I begin to suspect his airways are increasingly compromised with gunk and I raise the flag with the CF Care Team.  He sounds terrible and I can't deny it any more.

It's a typical spring afternoon full of errands and sunshine.  I stop by the house before walking over to pick up Michael from school.  Blink, blink.  My answering machine is blinking.  Huh.  I hurriedly punch PLAY as Dylan toddles around occupied deep in one of his imaginary "shows".

"Hi, this is Sally Walsh, the gym teacher at Goodland Elementary school..."  I feel my inner hysterical start.  Crap.  I suck in air deeply and momentarily pray that he is okay and something didn't happen when he was running the mile.  "I am happy to call and share some great news with you.  Michael ran the mile today and he had the fastest time in first grade.  He ran the mile in 8:23..."  I can't recall the rest of the message because I crumple onto the floor crying.

What an amazing moment for any parent.  It's all the more sweet when your kid has a chronic lung disorder and is regularly fighting infection and dealing with inflammation in his lungs.  Dylan walks over and kindly asks, "Mama, what's wrong?"

"Nothing.  Nothing at all."  I reply to him as I compose myself and smile up at him.

*   *   *   *   *

In June as we trade our school clothes for bathing suits, we learn that the culprit of Michael's cough is an ugly recurring nuisance.

We learn that Michael's labs are showing positive for something called Allergic Bronchopulmonary Aspergillius - aka ABPA.  It had showed up once in the fall when he was in the hospital, but at the time the doctors were not terribly concerned with it.  Given how his labs are trending in the spring we confer with the doctors to begin treating him with steroids to help manage the ABPA cough and symptoms.  It's a tricky beast since it's hard to treat and, worse, it is unpredictable.

As we move forward with the hot sunny days of summer, we also get the call after a routine clinic visit that Michael has recultured Pseudemonas.  This infection keeps rearing its ugly head.

We groan, but grateful we know so we can move forward with aggressive treatment.

There are two active lung infections in Michael's lungs.  And I am mad.

The seasons change again, summer now behind us.  School is back in session and we are still dealing with the ups and downs of Pseudeomas and ABPA.  Michael is metaphorically in the boxing ring with these two bastard infections, all while he is trying to handle all the newness that second grade throws at him...  new classmates, new teacher, new school lessons, new club soccer team, news coaches, and new teammates.  He is also forced to focus on reading and making his reading goal a priority too -- simply another pest from his perspective.

His escalating cough requires a brief check up as both pesky infections chased him right into the school year and scheduling is tight.   I receive word that Michael is no where near his reading goal on a sunny Monday afternoon as he hops in the car.  He informs me that students' goals need to be met by Thursday.  I sigh.  He also is thrilled that the mile run is this week.   It had gotten pushed from last week. "Tomorrow," he clarifies.  I know he is locked in on his goal to do well.  Frankly, not just well, but to be the fastest again.

As the week rushes forward, the gym teacher continues to push back the mile run due to various conflicts.  He is bummed but he chips away at his reading goal all while I hear his cough escalating. As with the typical back and forth scheduling that comes with doctors' offices, I finally confirm that they want him to see him Friday morning.

At Thursday pick-up, Michael slides in the car and grins.  "Mom, I hit my reading goal.  And guess what?!  We had to until NEXT Thursday to hit our reading goal.  So I did it a week early!"  I feel my heart burst with joy for him.  He is thrilled.  No sooner do I turn my head and pull the car out of the school parking lot, do I look back at him in the rearview to see him SOBBING.  He isn't breathing he is crying so hard.

"Michael, Michael, Michael.  Honey!  What's the matter??" I cry back to him.  Michael's wingman, Dylan, is silent trying to piece together what is going on.  I can barely keep my eyes on the road, totally stunned at his reaction.

"We are running the mile TOMORROW.  Tomorrow MORNING!"  He cries and moans.

I put it together...  he wanted to run the mile with his class at the very same time as his doctor appointment.  I gently navigate the land mines.  Can't you run it another time?...  Can't you run it with another class?...  Maybe Mommy or Daddy could take you over to the school and time?...

He is not having any of it.  Totally.  Completely inconsolable.  There are very few second graders I know that are destroyed because they can't be in gym class the day they run the mile.  But my son is.

We pull in our garage and all hop out of the car.  I call the school's front office and get detail on what time Michael has gym class and what time exactly he will be running the mile.  We work it out that he can get to school, run the mile, but I will need to pick him up immediately when he is done if we have any hope to make it to his appointments.

Friday morning, Michael is off to school and then I drop Dylan off at his grandma's house so I can get Michael to his appointment on time and uninterrupted.  And honestly, the more I can keep each kiddo out of doctor offices, hospitals, etc., the better.  I head home and kill some time sipping on barely warm coffee.  I pace around the house knowing full well that I can't start a new project when I have walk out the door shortly.  I am too anxious to watch some giddy morning show nonsense on the TV.  I am trying to time it perfectly to see the end of his run.

When time strikes on the clock, I jump in car and drive through the neighborhood to the school.  I pull up and see kids running around the dirt track in the field behind the school.  The second graders are running the mile.  Where my car sits I have a perfect view of the kids.  But I don't see Michael.  Where could he be?  After all this, and he is not running??!

Then I see him.  He isn't running.  Instead, he is standing on the black top of the basketball court next to the dirt track.  It take my brain a couple seconds to realize what he is doing, well, actually what he has done...  He has finished his mile run when the whole class is still running.  My eyes well up with tears with pride.  I didn't even get a chance to see him run.  I head to the front office to sign him out.  He meets me in the office with smiles and sweat beads on his forehead and nose.  "7:44," he announces when he sees me.  "Fastest time in my class."  He grins.  "Great job, kiddo."  And we leave the school.

As we drive, I feel this surreal wave of life wash over me.  It's the push and pull of living with Cystic Fibrosis in our house.  I hate it, but I love it.  The lows are lower, but it makes the wins that much sweeter.  It makes me feel that much more.

I look out the front windshield at the sunny fall highway ahead of me.  Here I am -- I am taking my kid to the doctor for tests to see how sick he is, when he just crushed a mile run.  I feel like it's like a weird juxtaposition.  Actually, no, it feels more like it's inconceivable.  Did I miss something along the way?  How does it go like this?  I shake my head and look back at Michael who is smirking out the window with satisfaction at his performance.

He does his typical battery of CF tests.  Today we learn immediately that he has incredible lung function - his FEV1 is 117 to be exact.  This metric means he has 17% better lung function than other boys his age.  Not only boys with CF, but ALL BOYS HIS AGE.  I feel *stupid* that we are even there.  What the hell brought us here any way... a cough?  I fear that the staff is scratching their heads wondering why we even had to schedule a "sick appointment" for his worsening cough.  But honest, I swear the kid is sick by his baseline standards.

Later the tests would tell us that I am not crazy.  Yes, he is still dealing with the very real drag and the annoyance of the infections.  They are present deep in his lungs.  We press ahead knowing that we must be doing something right.  We have our marching orders on the steroids and the antibiotics he is currently taking.  But I am okay with it.  I am weirdly okay with it.

*   *   *   *   *

The calendar turns and it's the new year.  On my limited free afternoons as I ring in 2015, I lace up and hit the indoor track at my gym.  Both kiddos are at school today and I resolve that I am getting back in shape.  New kicks.  And new found motivation.  Blaring Katy Perry, One Direction and the tunes roll.  Then one song hits me like a slug -- "I Lived" by OneRepublic.

I feel the tears searing in my eyes as I run.  The song's lyrics tell the story about living every day, every minute.

The song has a very profound connection to CF.  The band's video tells the visual story through the eyes of a teenager who has Cystic Fibrosis.  The opening scene leads in with him suiting up for his morning CF vest and nebulizer treatments.  The visuals of his experience are narrated by the teenager and cuts between the lyrics of the song.  The Cystic Fibrosis Foundation recently spotlighted this remarkable artistic portrayal of life with CF HERE.  OneRepublic's video spans his days in which he chooses to live fully and seeking all the thrills that life offers -- from the early days learning to ride a bike, playing hockey, skateboarding to arriving at the band's concert.  The video loops in my head as I run the track.  I lose myself in the song and my dreams for my boys.

With every beat of the song, every stomp of each foot, and every misty heavy breath, I think of Michael.  I wonder what he feels like when he runs the soccer field speeding toward a goal.

I look down at my running app on my phone, which announces that I am running my fastest 5k ever.  I look at my mile time and it's my fastest mile.  Strange, I hadn't even noticed.  And Michael's time eclipses mine.  With every pace, I am overcome by emotion as I ponder that.  I just hope the old ladies walking the track with their baby dumbbell weights don't see me crying.  Last thing I need is a scene.  I can imagine myself - a spitting, sputtering, soggy mess.  But I continue to pound it out as I reflect on the journey.

I run.  I run.  I run.  And I get it.  I get why he runs.

Keep running, Michael.  Keep running.  I will happily chase you forever.

New Year's Party.

A new year.  A fresh new start.  And endless possibilities.  Everyone seems to celebrate with a party.

Noisemakers.  Champagne.  Silly hats.  And resolutions.

Little did I know what new possibilities would lie ahead for our family.  And our lives.  Nor did I anticipate THIS party.

December is a busy month loaded with the lovely sounds of Dylan toddling around singing "IS the season to be jo-ree" and Michael humming "Dradle, dradle, dradle, I made you out of clay" from his winter program at school.  I smile every time I hear them strike a chord.  What a blessed season.

Not too far into December, I hear coughing from both boys and place a call to their CF doctor.  I find myself in the middle of an elaborate game of phone tag that all parents of little ones struggle with on a daily basis.  I almost miss the easy days where all I had to do was answer "hello?" for the important calls where I could sit and thoughtfully listen and answer.  Now, I scramble for a ringing phone with screaming kids, a barking dog, and a pot of boiling water.  Or half the time I miss a call for whatever distraction is the topic of the day.  And if I do actually answer a call, I am usually waving off my kids who don't understand that when I am on the phone that there is a real person on the other end...  TALKING.  And I am trying to LISTEN.  Interruptions are common and 'air conversations' often take place simultaneously.  We, mamas, are good multitaskers.

Once I can actually make contact with the boys' pulmonologist and in between Dylan's many loud exclamations "Mommy!  You're never gonna be-weave this...", I wave my finger at him showing "just a minute".  I speak to the doctor in broken fragments.  "Yes, the cough is increasing.  For Michael is worsening.  No, doesn't sound good"  and "Dylan is junky.  Breaking.  Sounds rumbly".  The doctor responds with thoughtful pauses.  I can't tell if he is pausing to process my broken oral notes or to review recent tests for the boys.  I can't be quite sure but I also believe he has a smile on the other end of the line hearing my juggling act.

As he slowly begins a statement, he pauses and then has a mild startle to his voice as he says, "Huh.  [PAUSE]  It looks like Michael's last culture was lost.  Er, wait.  It says here in the notes that the lab cancelled it.  They noted it duplicate."  He pauses then adds, "huh."

Well, that's great.  My brain ticks.  I am agitated.

Lost?

Cancelled?

Gosh, that doesn't help us at all.  WTF?!

The doctor suggests putting them both on a pretty mainstream antibiotic -- one that they both have been on a number of times.  The doctor suggests that this drug would align with his previous cultures prior to the "cancelled" one.  Michael just finished a course of this same medicine about 5 weeks ago.  But I go with it.  In the CF world, antibiotics are a way of life.  Dylan chatters away about his latest creation he is waving in my face.  And while I am generally armed with a million questions for the doctor, sometimes just plain rhetorical, in this case, I am just relieved that he is calling in an antibiotic for their symptoms.  Little did I know what  looming affair was awaiting us.

Christmas blows by us.  We celebrate with our New Jersey family -- friends that we ride a life rollercoaster with...  surviving a hurricane...  our kids battling chronic disorders...  dealing with the unchartered waters of moving a family and living in a new place...  and making memories together to last a lifetime.  One night, we surprise the kiddos with a whirlwind Christmas lights tour we deem "The Minivan Express".  And have a lovely, memorable Christmas dinner at their house a few days later.

The scent of cinnamon still in our house and sweet honey ham leftovers still in the fridge, our family slows down after the flurry of Christmas.  My plans to visit my mother in the hospital in rural West Virginia have been thwarted because of a massive winter storm that hovers directly over my route to see her.  And in the following days other storms blow through on what would've impeded my trip back home to New Jersey.  I am heartbroken not to see her.  But we all realize how paralyzing the wintry weather is for the entire east coast.  So for now I stay put.

With my unexpected stay home, my husband and the boys are almost relieved that I will be along for the trek into NYC for a follow up visit with their GI doctor.  Tummy complaints and tanking growth charts have brought us to this point.

The sky is still inky with a hue of light in the east when we gently wake the boys.  From the moment the boys are awake and groggy, my husband and I hear it.  I cringe downstairs hearing Michael's coughing upstairs as he gets dressed.  A quick pit stop at the bathroom, shoes and coats, we are out the door.  We avoid the topic of food, snacks or even water.  Dylan has to fast and we play it off that it's still night that we will get food when we get to the hospital.  We subtly sip our coffees and stare ahead into the December malaise.

Daylight slowly fades in, while uncovering gray clouds and gloom.  And during the drive, we realize that Michael HASN'T STOPPED COUGHING since we got in the car.  It's airy and constricted sounding.  And CONSTANT.  My husband and I speak low to each other but both agree that Michael does not sound good and that he MUST be recultured and have the GI doctor listen to him.

In between coughing spells, Michael sleepily asks if we have passed the big bridge (the infamous George Washington Bridge) yet.  "No, not yet," we say in unison.  My eyes lock with my husband's and we smile trying to divert our thoughts.  He glances back at the road and for the first time, I am very aware of our mutual worry for Michael.  The massive suspension bridge has become a point of interest along our frequent trips to the CF doctors.   The boys gaze up through the sunroof at the wires and curved steel.  Their little mouths are agape and their eyes wide.  We point out the Hudson river to the boys on either side of the car.  "See the big buildings out Dylan's window?"  I point south and show them.  They make different observations about the buildings and the river below.  Our focus on the normal helps my brain to avoid going on random worrisome mental journies.

My husband and I gulp the rest of our coffee as we finish the ride in the car.  We are in for the long haul with this particular visit since Dylan has many tests ahead before we even meet with the doctor.  We are the only ones in the hospital's imaging waiting room.  Dylan's name is called almost immediately and we are off to an efficient start with his GI x-ray.  Quick and painless.  But then after waiting and waiting, finally we are called in for a lengthy GI ultrasound.

Dylan bravely climbs onto the exam table draped in a white sheet.  The room is very lowly lit.  A lamp sitting on a table across from us casts a warm, gold hue throughout the room.  The ultrasound tech is nice, but quiet and dutiful.  I hold Dylan's hand as he cringes and whimpers.  I try to calm his nerves by explaining it won't hurt and that they are taking pictures of his belly to help his belly aches.  After about two minutes, he starts to relax.  The tech's rolling and clicking on the key board and the gentle hum of the industrial medical ultrasound machine soothes him.  She moves the ultrasound wand across his belly.  The gel squishes as she rolls the wand to the next spot.  I watch as he stares at the ceiling.  I whisper quietly to him and we count the different colored balloon cut-outs that have been put on the ceiling to distract other little kiddies.

Whirr click click.  Whirr tap tap tap.  I see the tech type "Left Kidney".  Whirr click click.  I watch Dylan's eyes blink, his dark eyes very still in between each blink.  Each rep of his blinking shows a heaviness.  I watch him slowly fade to a calm and then fully to sleep.  My heart melts.

He is still and comfortable, even when the tech moves the ultrasound wand.  She squirts more warm gel onto the wand and places it back onto his belly.  Dylan shifts slightly to his side unaffected in his sleep.  Whirr click click.  Tap tap tap.  "Right Kidney".

Times passes.  The tech takes over 60 images of Dylan's entire gut.  I see the tech snap images of his spleen, his gall bladder, his stomach to name just a few.  Dylan is still out even after a thorough review with the radiologist and a few more images.  The session has wrapped and I scoop Dylan up and lift his heft into my arms.  I lean his head on my shoulder and carry him back to the waiting room.  He slowly starts to wake.

We all decide to get a bite to eat since we have almost 2 hours before the GI doctor appointment.  We make ourselves comfortable in the hospitals cafe area.  The boys scarf food down while I whittle down my third cup of coffee of the morning.  We all admire the titanic Christmas tree that is adorned with ornaments as large as basketballs.  Pink, turquoise, purple and gold.  In between bites we discuss ornaments that are alike and ones that are our favorites, which ones match, and which ones are unique.  To wrap, the boys gleefully trot around the tree and play a mild game of tag.

Before long, our party hikes up to the GI doctors waiting area and plant ourselves down with the 'caws' and 'grunts' of Angry Birds.  It is in this moment that I see my opportunity, I head back up to the reception desk and to have our nurse practitioner paged.  Within a couple of minutes our kind nurse meets us and we explain our concerns about the increased coughing after finishing the most recent antibiotics.  After listening thoughtfully she says, "Is he always this pale?"  I laugh nervously and we comment that yes Michael has always been the fair one and Dylan the very dark one.  But I know she is right.  He is more white than usual.  She agrees that Michael should be swabbed again to see if he cultures anything.  I walk him to an exam room.  Michael looks at me, his feet swinging as he sits high atop the exam table.  "I am brave for the swab, Mommy.  I like it.  I just don't like bloodwork or shots."  My heart sinks a bit and I reassure him that she should just swab his throat.  "It's okay.  The swab is okay."  I know how brave this kid is.  And unfortunately, how routine this has all become for him in his life.

Soon we meet with the GI doctor and get some good news - bad news.

Good news, the last appointment's growth measurements must have been a fluke.  I snicker inside...  perhaps a belated Christmas present?  Needless worry, but I am thankful.  Based on today's numbers, both kids are growing beautifully.  They both look great, the doctor and her fellow doctor confirm.  I feel the streamers and confetti float down in my mental celebration.  Oh.  Joy!

Bad news, she confirms that Michael's breathing has some crackles that are very apparent.  She suggests just to keep an eye on it and see what the culture grows.  We aren't there for a pulmonary check up anyways, so I don't think too much of the assessment.

New year, new things.  New things for sure.

We ring in the new year quietly, not quite the parties and revelery of years' past.  Quiet is good with me.

January 2nd doesn't miss a beat as my husband hustles Michael to the bus stop, hops in his car and scurries to work.  I rush out with Dylan in tow and get him to school promptly as a nod to the new year and an unspoken punctuality resolution for the new year.

I run a few meaningless errands and find myself unlocking my front door.  I jiggle the key nervously and with a sense of urgency.  The dog barks her joyous greeting and cries like I haven't been home in two weeks.  I pat her on the head as I immediately drop my white plastic bags emblazoned with a red bulls eyes on the floor.  She jumps back with startle.  I don't wait a second.  I just know a message is waiting on our machine at home.

Sometimes.  YOU.  JUST.  KNOW.

I hastily rush into our home office without removing my trusty white winter fleece jacket or my favorite new gray UGGS.  There is purpose and precision in my movement.  I lunge for the the blinking answering machine and my index finger and the silver button collide.

A robotic voice that I have heard thousands of times before says the same line...  "You. have. one. new. message."  Heartless, unemotional machine.  This message is about to unleash a tidal wave of heartache.  The least it could do is be supportive.

It is the nurse practitioner from the boys' CF care team.  She has news about Michael's culture and to please return her call.  My fingers rush to dial the number and she tells me what I have already felt that I have known - except it's even more intense than I expected.

"Has Michael ever cultured Pseudomonas before?"  An invisible force shoves me into the chair at the desk as my knees buckle.  The chair catches my weight and almost bounces with response.  She continues that Michael's throat culture shows both strains of "mucoid" and "non-mucoid" Pseudomonas.  And unfortunately, I already know what these terms mean.  I rub my forehead as we continue our conversation.  I rub so hard I make my temples ache.  My shoulders tight and rigid, I cannot process the stress that pulls my muscles taut across my neck, shoulders and upper back.  It a normal state of being for me.

You see, Pseudomonas is a bacteria.  A really nasty, dangerous bacteria.  It isn't too different that other more well-known culprits of infection like Staph, Strep, E. Coli, even MRSA...  but Pseudomonas has a different reputation in the CF community.

Pseudomonas is like the a-hole at the CF party that no one likes.  Not too soon after the shindig gets underway you are forced to toss P. Seu from the party.  But he shows back up... with more of his a-hole friends.  Mucoid Pseudemonas is when that same a-hole brings a posse of bodyguards back with him to the party and they force their way in.  You do your best with your personal bouncer to throw him and his gang out, but it becomes too hard with P. Seu's crew and street smarts.

Let's be honest, he's just a jerk.  And you learn to live with him.  So does everyone else.

The problem with our smug buddy is that he has figured out the best way to overstay his welcome and party on...  even when you're not in the mood.  There is really no making him leave because his bodyguards are unrelenting and tough (which literally speaking is a biofilm insulation that the bacteria has created to become more resistant to antibiotics).  You are forced to put up with him and more of his idiot friends staying at your place (translation:  the bacteria begins colonizing and and taking up space in the lungs).  Finally, this posse of jerks begin to DAMAGE your place from the partying and from cramming into your pad.  Holes in the walls, beer spills on the floor, and floorboards cracking beneath the party's feet.  You just want your home back!  This last aspect is the worst about your house guest.  In a CF patient's world, it means IRREVERSIBLE.  LUNG. DAMAGE.

To get this call from the CF Care Center nurse, means, we have an unwanted, uninvited house guest who has no intentions of leaving at our life party.  And it sucks.

My heart is heavy, because I know what it means.  I review with the nurse the next steps to start Michael on a course of more medications to help fight the infection.  Basically, these meds are the SWAT team and the specialty forces ready to remove P. Seu and his cohorts who have begun camping out in Michael's little lungs.

It means more yuck tasting medications.
It means waking Michael up at 6:30 am in the dark of winter to complete all of his treatments to catch the bus on time.
It means isolating him from Dylan two separate times a day to run courses of an inhaled antibiotic (since we don't want Dylan to develop resistance to the antibiotics since some day that same idiot will try to take real estate in his lungs.)
It means a LOT more juggling.
And it means less rest for Michael's already tough schedule for a five-year-old.

I begin weeping when I hang up the phone.  Frustrated with CF.  Frustrated with the brutal routine that has become our lives.  Frustrated with how much harder it will become.  Frustrated at how unfair it all is.

I glance at my watch and shake my spinning head.  I decide to climb in the cold car and gather myself as I have to pick Dylan up at preschool.  I wipe up my smeared mascara with my finger in the mirror.  Funny how I continue the facade of a normal life, when so much of what we do feels so -- abnormal.  I paint the "normal facade" onto my face.  I can still feel the sadness and anger deep inside as I touch up my eyes and slide on my favorite weathered Prada sunglasses.  A sleek black tube of mascara and a designer pair of shades can hide so much.  My facade.  I inhale deeply, force our my exhale.

As I do so, I punch the radio hard with my knuckle and my car's CD player kicks in.  LMFAO's "Party Rockers" blares as I pull out and head to the preschool.  I smile.  Every day last summer the boys and I would jam out to this song in the car on the way to the pool.  Dance party! I would try to get them moving and grooving in the safety of their carseats.

I embrace my anthem this morning.  Party, huh?  I snort, aloud.

"Every day I am shuf-shuf-shuffling..."  The bass of the music pumps against the beat in my heart.  The rhythms completely off.

Well, it's not quite the party of I was thinking of to ring in the new year.  I blink away the tears beneath my shades.  "Party Rockers in the HOUSE tonight...  Everybody have a good-good-good time."

Life's a party.

And I fully intend on kicking some ass this time around.

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.

The shift.

It's five o'clock in the morning and my husband jumps out of bed to get to work early.  I am not at the top of my game at the crack of dawn and not at all attuned to things.  On this particular morning there is one thing that fully catches my attention.  Muffled by the walls of our home and blankets in bed doesn't make it any less apparent.  Michael is coughing in his bed this morning.  It doesn't last too long.  Once it's quiet again, I drift back to sleep, satisfied that he is comfortable.

I awake to some commotion and conversation in the hallway between Michael and my husband.  I hear my husband explain to sweet Michael that he has to head out to work.  Seconds later, I see sweet Michael scooped in Daddy's arms next to our bed, then Michael climbing into bed with me.  Daddy kisses each of our foreheads and departs for work.

"Can I play a game on your phone?" he asks.  Michael is the ultimate negotiator.  He capitalizes on moments in his favor.  I fumble around awkwardly with my phone on the nightstand in our dark bedroom and gently thrust it in his hand.  I am too tired to argue, so the mini litigator just won his case.  I hear him boot up "Fruit Ninja", where the primary goal is to slice and destroy as much flying fruit as possible.  Mangled pineapple.  Bleeding watermelon.  Splattered kiwi and broken bananas.  I hear the acrobatic swings of the Ninja sword as the fruit massacre ensues.

I pull the soft comfort of my covers up to the tip of my nose.  My eyes are buried beneath my tired lids.  The sounds of the fruit slaughter are dulled by the ominous cough I am hearing from Michael.  A gravely, junky cough .  Slice, whip, crack, and splosh!  Then sounds of a watermelon cracking.  Michael painfully clears his throat.  He works to gain control, but can't quite seem to stop coughing.  After a breath pause another wave of coughing overcomes him.  He begins to get frustrated since his cough is affecting his ability to decimate brightly colored, oozing fruit.

I hear Dylan's wake up call from his doorway.  "Mommy?  Ma-meeee!"  I hop out of bed and my mini fruit-hating ninja shadows me.  After a wake up diaper change, pitstop at the potty, everyone is fresh and ready for morning CF treatments.  We usually spend more time lazing around and starting everything around 7:30, but this morning we are revving up the machines an hour early because Michael's cough is very much present.

It's a cough that has been plaguing Michael and he can't quite shake.  This is the cough that ebbs and flows.  It's the one that has kept Michael at home from school for over a month.  These are the moments that those squeaky wheels grinding in my brain slow and halt altogether.  My mom brain shuts down.  I just don't know what do with this cough, or rather the shift in his cough.

It's subtle, but my ears have gotten attuned to it.  Airy and dry.  Lately airy and dry.  Sometimes infrequent, sometimes frequent, regardless always an annoyance for Michael.  Other times is becomes spasmatic and completely uncontrollable.  But it's the shift that catches my attention on this morning.  No longer airy and dry, but now wet and junky.  Clearly menacing.  Rattling.  All of this layered onto the original version.  I guess you could call it now Cough Version 2.0.  Also, layered in is constant throat clearing.  Because it was the very first thing in my senses this morning and hasn't left us for a moment, it warrants a call to the CF Team.

It's a Friday morning and I have fallen prey too many times to doubting myself on a Friday and then realizing I should call someone on the care team when it's 4 pm and the staff is ready to head home for the day.  I just hate to bother docs on the weekends if I don't need to... on this morning, I decide early that I need to reach out and get the ball rolling.  I leave a message at 7:45 a.m. strategically.  If it's nothing or they want me to hold off to monitor the cough through the weekend, they will just let me know.  But, if they want to tweak any meds before the weekend, I will have the opportunity to hit the pharmacy or make adjustments throughout the day.  Done.  Decision made.  Now to hear back...

Within the hour, I get a response from the team and assessing begins.  Details detail details.  I go through every detail of our recent days.  I have learned what seems meaningless can often be the important to the doctors.  The coughs highs.  And the coughs lows.  But I share with the nurse, the most important reason for my concern...  he is now coughing in his sleep and first things when he wakes.  Satisfied that I have covered everything, we agree that she will check in with me once she has conferred with the doctor.

I wait for the call amidst the scramble of finishing treatments and making breakfast.  This morning on the boys' breakfast menu are gooey, fragrant cinnamon rolls and salty bacon that cracks and crumbles with each bite.  The only thing I need is a good cup of coffee.  Then the phone rings with the verdict...  the doctor wants to see him...  today.  A little surprised, but also relieved, I hang up.  I unmistakably see my day shift right before my eyes.

I immediately dial Nonna to ask if I leave my other monkey with her as I plan to take Michael to the doctor.  The next phone call I must make, makes my heart sink... Michael's preschool teacher.  I have been keeping Michael at home for over a month during his continued battle with this cough.  He has fought this junk since November when he was hospitalized.  As he recovered in November and December, we tried to establish normalcy with school and through the holidays.  But it was at the January visit with his CF Care team that he had a recurrent cough and shocking weight loss.  We were told to hibernate at home avoiding germs and viruses for a while.  His overall picture of health had, very clearly, shifted.

His caring teacher had offered to visit him once a week at home to help him stay connected to his classmates and their activities.  I feel gray even with the rays of sun pouring in the house, because now the doctor's appointment is trumping a fun visit from his thoughtful teacher.  Not only is this troublesome cough preventing him from going to school with his friends, but it is now altering our Plan B for him to still have access to fun and learning with his teacher.  I have to cancel for today and try to schedule with her next week.  Just how do you explain this to a kid who doesn't really feel sick?  I catch her briefly and we agree to talk on Monday to reschedule.

The next hour is a scramble to get dressed and get on our way.  As I help Michael into his pants, Dylan grabs the potty seat, puts it on his head and runs out of the bathroom laughing.  I lock eyes with Michael.  He smirks and starts laughing.  I just shake my head and snicker under my breath.  As I finish helping Michael with his shirt, I see a flash of Dylan run by and then he slowly turns the corner around the staircase.  He begins by hanging on the banister clutching the spindles and starts walking along the unsafe side of the staircase.  Foot over foot and hand over hand.  I dart out of the bathroom seeing this, fly around the banister and grab him.  This child seeks out the most dangerous things possible and tries them.  My heart in my throat, the acrobat in my arms, I am relieved.  Then, I firmly reprimand him.

Some black eyeliner, a good pair of jeans and my favorite red trench coat cinched at the waist, and I am ready to roll.  Nonna arrives and Michael and I head out.

Typical CF clinic routine...  the paper face mask...  the hurry up and then wait...  the checking in process.  This time we must wait a few minutes before they can usher us into an exam room.  So, with no one else in the waiting room, Michael and I decide to hack open some fruit with our trusty digital ninja sword.

Once in the room, we are greeted by our favorite nurses, who immediately comment on how great Michael looks.  It is evident that he has gained weight like a rockstar.  I had noticed this week the little pudge that has formed under his chin.  His face is fuller.  He is heavier when I pick him up.  It is when he stands on the scale when the collective gasp fills the small white room.  He is 40 pounds!  What?!  40 pounds?  He can't be.  But it's true.  Here it is, before my eyes as the nurse slides the metal markers over on the clunking scale, there has been a shift.  I am bursting with joy.  I have to swallow my relief and emotions down, so as not to completely embarrass myself.  He has rebounded from his weight concerns from seven weeks ago.  My kid has porked out.  And I love it.  I fidget with the tie of my trench coat for a distraction.

We power through the remainder of the visit with the nurse and the doctor discussing the next steps with this pesky cough.  Same drill...  culture, antibiotic in the meantime, and lots of albuterol (you might recognize it from the puffer device that asthmatics use during an asthma attack).  Nearly two hours later, we have our marching orders and head for the door.

We exit the pleasant medical campus through the dull lobby.  We pass under the overhang where dark shadows live and step out into the unbroken rays of sunshine.  I welcome the light as we climb into our familiar car.  When I suggest we pick up food to bring home for lunch, Michael explains that he doesn't feel like eating.  The irony of the 40 lb. kid has had his fill of eating.  He then asks, "Can I go home and do my vest and mask?"  I pause.  I know my little negotiator is angling to watch his favorite TV show, since he knows that we let him watch his favorite show to reward him for doing his treatments.

Our day is thrown off.  The food can wait, especially since he is not hungry.  And how many times is he going to ASK to do his CF treatments?!

Of course, I agree.  Michael has been such a good kid, who overachieves every day.  I shift my thinking.  He doesn't have negotiate to win his position this time.  He's already won.