Wednesday, January 14, 2015


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.