Odds.

When Michael and Dylan were born and diagnosed with Cystic Fibrosis, we set out on a mission to find a cure for our boys and give them the best life we possibly could.  As we look ahead to this weekend, we continue our efforts in raising money for the Cystic Fibrosis Foundation to find a cure as we walk downtown Chicago on Sunday 5/21.  AND we are equally honored this weekend to attend Make-A-Wish’s 2017 WishBall with our boys serving as Wish Ambassadors Saturday night.

MAW grants wishes to children with life-threatening medical conditions.  MAW "believes that wishes are an important part of the overall care and treatment of these children.  Each wish offers the opportunity for a joyous, life-changing experience.”

Our family has seen first-hand the power that a wish, ONE WISH, can bring a child deep in a complex medical fight.

Earlier this year, our son Michael was granted a wish by the Make-A-Wish Foundation.  Our family embarked on a remarkable trip for Michael to meet and play with his soccer idol, Riyad Mahrez, who plays for Leicester City Football Club, in Leicester, England.

Last year, LCFC made sports history by winning the English Premier League (as a 5,000 to one shot!) with Mahrez as a leading scorer.  This was a team that had just come into the English Premier League two years prior and ended up taking the biggest title of the season, even over names like Chelsea and Arsenal.  And the miraculous thing is that Michael loved and followed Riyad Marhez and LCFC’s rise to greatness the entire season.  I distinctly recall watching Michael stand in awe in our home in the Chicago suburbs, watching his idol, hoist and kiss the cup all the way on the other side of the world when they won.  I remember seeing Michael’s eyes flicker with excitement as his rosy cheeks grinned.

And in the same way LCFC battled through the Premier League game after game, the odds are often stacked against these Make A Wish kids, patients waging war on their disease.

And it’s amazing how grand it is.  5000 to one.  But that one, that ONE, can be EVERYTHING.

One wish.

One opportunity.

One special, unique experience.

One time when it’s not about pills... or medications... or machines... or IVs... or x-rays... or medical tests... or drug infusions... or breathing treatments.  It's not about doctors...  or appointments... or nutrition...  or blood sugar.
One time with it's not about CF.

One kid.

One dream.

One pro baller.

One universal language of sport.

One unique bond and passion for a game.

One chance to play.

One-on-one.

One game.

One grand entrance in a stadium of 31,000 fans.

One unforgettable experience that only the pros know.

One full heart.

One forward-looking hope.

All.  All of it.  starting with  One.  Wish.

What a gift.

And as for Michael and his story, we know that sharing about his wish journey will help so many others to understand how it can lift a kid up in a such a way that nothing else can.  A wish can help kids dream big.  A wish can fuel the passion to take their disease and medical complications head on.  A wish can give hope and inspiration and excitement.

It’s not about kids who are dying, terminal or end-stage.  Nope.  It’s about kids who are fighting battles, VERY BIG BATTLES, and battles that at times might even be invisible to others as is the case with our boys.

Instead, it’s about those kids truly LIVING and soaking up LIFE even in the face of all that their diagnosis brings.

The odds for these kids, the odds for that pro soccer team in England.

I have written about odds in our family's journey with CF before here.  CF is rare.  Our odds of having two kids with CF are crazy.  And the odds in the CF battle are pretty rough too.  So, given a chance to improve those odds, with say a wish, put simply, it’s PRICELESS.

I think of it like, for Michael to receive a such a remarkable wish, to give him leg up in his fight against Cystic Fibrosis is no different than LCFC’s roster receiving the magical Riyad Mahrez on their journey into sports history.

When we left England, Michael was more adamant than ever that he WILL some day be a pro soccer player and he WILL live in England.  Even LCFC head coach exclaimed when he met Michael and saw his foot on the ball, “this one has proper skills” as he pointed to Michael.  Later, when writing his thank you card to Coach Shakespeare, Michael wrote "I hope to one day play for your academy”.  So perhaps it’s not too far off.

I believe with all that I know about the advancements for CF patients on the horizon, all I know about Michael's battle against CF, about his love for soccer, and now after his extraordinary wish experience this spring, and with all I know about amazing people making a difference for these wish kids…  I believe he will fulfill that pro baller dream.  I, as his mom, can have that ONE hope.  With Michael on the pitch, no matter the odds, no matter how insurmountable they may seem, AFTER HIS WISH EXPERIENCE and a taste of the Pro experience in Leicester, England, all possible through the Make-A-Wish Foundation, I will put my money on Mikey any day.

Even if it is 5,000 to ONE.

This weekend our family once again continues to raise money in support of the Cystic Fibrosis Foundation.
Just as Michael continues his soccer dream fueled by an incomparable wish experience.

Thank you to our beloved Cystic Fibrosis Foundation for adding tomorrows.
And thank you to Make-A-Wish for helping him dream up what to do with all of those tomorrows.

SaveSave

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.

Organized Chaos

"Life moves pretty fast.  If you don't stop to look around once in a while, you could miss it."

- Ferris Bueller

Years ago in my other life, I was a busy sales girl at MTV Networks.  Running in heels through O'Hare to catch a flight or shuffling between meetings at conferences with clients, life often felt like a whirlwind.  Looking back, I had no idea what the true meaning of multitasking was.  I had only one person that I was in charge of - me.  And let's be honest, I even had an assistant to help with, well, me.  Nonetheless, I always kept a written planner, even when Palm Pilots and then Blackberrys were all the rage.  I never really liked clicking my computer mouse to add an appointment or scrolling around a computer screen to view my schedule.

In those days, I never got what being a mom meant.  I certainly never thought it would be busy or (eek!) completely insane.  I thought it would be a cupcake life.  Where days would be idyllic...  "What would you like for dinner?" and "Kids, why don't you go outside to play?"  Instead, I scramble to find one son's practice jersey for soccer...  is it even clean?  what pile of laundry could it be in???  Hmm, glancing around the mounds of laundry...

Further back in my college days, I was the student who was inevitably parked in the second row of the lecture hall because taking down the notes was how I learned, how I processed the material.  I am a visual person.  I have to write things down and organize them in my brain.  When I would take exams, I would also visualize the margins or notes that I had written for my answers.  I live by the things I write.  I have to write it down.  Then and now, I live by an old school planner.

Worse yet, as a kid, I would rip out a sheet of paper out of a notebook and start entirely over if my handwriting was not perfect.  The ugly truth of the matter is that I just have to make things pretty.  It's just in my nature.  What's the point if it's not pretty?  And of course, organized.  And in my pre-kids days, I had the time to do just that.  Now I struggle to do both - pretty and neat.  If anything, I typically must sacrifice one for the other to be a sane human being.  When I am planning a special party with pretty, crafty touches, my house looks like a bomb hit.  If everything is orderly and tidy, well there's no time for cuteness.  One or the other.

So here we are every day, pressed for time and strategy on how to juggle life.  We are now those people.  I have only a few minutes every day to think through everything and troubleshoot.  Usually in the car of the school pick-up line or in the lobby watching gymnastics.  American families are busy -- birthday parties, PTA meetings, vacation days, school deadlines, sports, extracirricular activities, play dates, errands, meal time, and more.  Yes, we are now those people.  Soccer mom extraorinaire right here.

Throw in a serious chronic illness for not one, but TWO kids, well it can be totally overwhelming and unmanageable.  In our house, in any given week, I hand out nearly 300 pills, arguably in varying combinations at any given time.  We handle it well enough, but honestly, plainly, it's just not easy.  There's so much juggling -- medication changes, respiratory equipment, insurance hiccups, food allergies, antibiotic allergies, symptoms, hospital stays...  I could go on.

And unlike my days at MTV, this time around I don't have an assistant.  I take that back...  I don't have a person to assist me.  But I do have something arguably far more powerful...  a different type of assistant.

That's where the Erin Condren Life Planner has been my life saver the last three years.  It is a super functional and extra-cute planner that I can't live without.  I have the say the BEST part is that every year she and her team continue to IMPROVE it, making slight tweaks, to make it even better (which I didn't know was even possible).

I use this multi-tasking weapon to tackle all things "life".  From planning parties like Thanksgiving Dinner to a family Halloween Party all the way to gift-giving lists, meal planning and keeping track of my own fitness schedule at the gym...  the uses are endless.

Knowing our family juggles so much more, I also use the EC Life Planner in innumerable ways to help manage the boys' Cystic Fibrosis.  Some ways I use it are...

• Tracking the boys' weight/BMI at every CF clinic.  Weight with CF is a big deal.  Every CF Mama knows that.  I can tell you all their last stats, but even better to have their history at my fingertips!

• Tracking the boys' medications and antibiotics.  CF Patients use antibiotics regularly and it was my mission long ago to start to log what they were using and why.

• Notes about illness and reactions to medications to help track trends and understand factors in their health.  I make notations through the days to help identify trends for illness and unusual occurences.

• Nutritional notes about high calorie ideas, meals, and supplements

• Clinic visit notes and questions for the CF Care Team 

• Phonebook for important contact information including doctors, specialists, pharmacies, medical equipment companies

I can only imagine how helpful an EC Life Planner would have been when my boys where babies with a crazy feed/sleep schedule laced with medicines all throughout the day.  Those early newborn days are tough for all moms, let alone for moms that must dispense pills every time they give a bottle or breastfeed.  Did I give him the pills at 3am when I fed him?

I know the EC Life Planner can help all moms (new mamas, soccer mamas, mamas managing chronic illness, even empty-nester babysitting grandmamas) to keep life straight.

Aaaaaaand it just keeps getting better!!  Now for the amazing additions to this year's Life Planner launching in TOMORROW June 12th...

• Coil Clips - I would always stick an event invitation or my gym's yoga schedule in the weekly view but they always fell out.  I hated to stick items like this in the back pocket or somewhere around the house for fear I'd forget.  Also, I didn't want to copy all the event information down, too timely!  DRUMROLL... Coil clips!!!!!!  They now allow you to place important things directly into the planner's binding securely.  I love this!!! Gym schedules, invitation, notecards, save-the-dates, 'we've moved' notices, etc. can just be clipped directly into the Life Planner.  Another example for our family, I often have notes for the boys' CF clinic that I hate to put on a post-it over my weekly view now I can just clip them into coil for that week we have the appointment.  Brilliant.  Finally, coil clips are great because where I track the boys' specific growth and antibiotic information across the years (see above).  Each year, however, I have had to rewrite my list into a new Life Planner.  This year, I can simply, neatly cut out the lists from my current Life Planner and clip it into my next one.  Done and done.  Love!
• See-through ruler/page marker - I could never put my finger on why I would get annoyed looking at my Thursdays, but EC knew...  I couldn't see my Thursdays because the ruler blocked my view.  This year's Life Planner solves that problem.
• Interchangeable Covers - So I mentioned that I like making things beautiful.  And now that my husband and I have made it our life mission to help cure Cystic Fibrosis, our boys are at the center of so much that we do.  I sort of love that when I am at a CFF meeting or conference, folks point to my EC Life Planner and say "What beautiful boys" or "What is that cool notebook?"  It's so much better than a black ugly portfolio, because I can see what is meaningful to me.  This year, EC's team has developed a way to switch covers out on the Life Planner allowing you to change it based on your mood, your meeting or your mission.  Love.

• Repositionable Stickers - In the previous EC Life Planners, the stickers that came with it would "stay put" and couldn't adjust as busy schedules changed or meals got rearranged for the week.  Once you placed one of those suckers in, it was staying.  So, I came up with my own solution.  I used to use mini Post-It's for appointments, dinner, or notes because I could easily remove them or move them to another day/time.  It wasn't ideal, because the post-its would get bent or wrinkled, but it was a solution that could work.  But, Erin Condren has you covered this time around.  Her 2014 Life Planner now has (say it with me) REPOSITIONABLE STICKERS!!!!  Beyond Amazing.  Problem solved.

• Perpetual Calendar - So, those who live by a written planner know the love/hate that comes with getting your new planner.  The upside, of course, you can make it neater, prettier than you did last year.  And (sigh) the idea of a new year, a clean slate.  However, (wait for it...!) you have to rewrite all the important dates and contacts.  GROAN.  DOUBLE GROAN.  Solution?  The 2014 Life Planner now comes with a Perpetual Calendar that is a one-stop shop for your important recurring life events and contacts.  BOOM!  No rewriting here.  Saves you time and is easy reference because you can keep it handy in the pocket or with the new coil clips.

Finally, I am so excited to use my planner this year to "fill in the blanks".  Where I have used it as a typical planner/organizer the last 3 years, this coming year, I plan to add my own fitness goals and personal thoughts like a diary each day.  Not just a "to do" list with check marks, but also "got it done". This way I can look back with satisfaction.  I am hoping to fill each day with "life" not just appointments and notes.

Check out the new planner at Erin Condren's Website HERE:  erincondren.com  (having trouble with my link so type this into your browser or Google Erin Condren Life Planner).  This planner is worth every penny given all it does for me/us every day of the year!

The time is TOMORROW, folks.  Mark your calendars or if you're already a fan, mark your Life Planner for the 2014 version out tomorrow!!

Life moves pretty fast - yep.  The Erin Condren Life Planner helps us to look around, so we don't miss it.  I can only imagine what the notorious Ferris Bueller might have done with a Life Planner!

Speechless.

As the dreary days of the worst winter in the last 50 years in Chicago drags on, I begin gearing up for some health maintenance.

Being the parent of two boys with Cystic Fibrosis, I tend to shove my health concerns under a dusty floor mat to worry about them another day.  Eh, I am generally healthy and try to eat well (on good days mostly organic and bad days a Chicago Portillo's Drive-thru for the kids, and let's be honest, I do more than sneak some fries).  I try to exercise (snort) and am sure to get my eight hours of sleep (well, at least I can in fact check the box on that one).

There are slight things that happen in your 30's.  You start to notice a waistline creep, or the ladies start sag, or in my case,  posture begins to slouch.  I am not worried, but take note of some things.  And yes, I will get to the gym with a personal trainer to work on that posture.  Some day.  Hopefully, some day soon.  Until then I have a good chiropractor.

Over the years, I developed vocal nodules.  They are considered a vocal injury and are from vocal, er, overuse.  There are cool people like Adele and Keith Urban who have had them because of their profession.  And not-so-cool people like stay-at-home moms (me) who have to say the same utterance like "get your coat and boots on" forty times or "You're going to be late for school!" usually escalating in volume.  Typically, the fortieth time is in a screaming or yelling sort of fashion.

The truth is I was diagnosed 11 years ago with them, and thought they had resolved at one point with treating my chronic acid reflux. (By some craziness, I was believe it or not stressed out before I had two busy boys with a chronic illness).  Life without them looking back seems pretty calm.

The nodules came back and I have been living with them for years.  Most recently, they had gotten pretty miserable.

While, on occasion, I sounded breathy and sultry, most of the time I sounded like an old lady with an severe smoking habit.  I would get winded just talking with a friend.  I was worse than raspy.  My voice would crack and crumble in a few minutes of talking.  It was actually HARD to talk and I was out of breath much of the time saying more than a few sentences.  I would also have "late onset" where I would start to say something but my words wouldn't come out on cue.  Weird, but true.  The only way I could describe it was simple that talking became effortful.

The consultation with the ENT who is highly specialized in vocal disorders was interesting...  The discussion went something like this.

Dr.:  I see here that you were in sales before you became a stay at home mother.

Me:  Yes.  I have two boys.

Dr.:  Ah, you talk a lot.  (smile)

Me:  Yes, they also have Cystic Fibrosis.  So they are on breathing treatments with machines a few times a day and often we end up yelling over the loud machines.  So that doesn't help.

Dr.:  Oh, wow.  You do talk a lot.

Me:  Yes, they also play sports and rough-house so I find that I have use my voice to get their attention.

Dr:  (Sigh a kind smile).

He becomes very politically correct when explaining the diagnosis and next steps...  " It's not that we think you should talk less..."  Translation:  You need to talk less and not yell.

Within two weeks I find myself sitting in a outpatient surgical center.  I am in a hideous hospital gown and refuse to put my hospital "cap" on my head to contain my long hair.  I have some pride here.  They forced me to wear goofy beige socks with skids on the bottom.  I will NOT put on the hospital "cap" until the last possible minute.

Hubs sits with me and we laugh all through the waiting...  We speak briefly with my vocal surgeon, who is kind and pleasant.  Given I am nervous and hate going under anesthesia for anything, I suppose it helps that he's not a whack-a-doodle.  He hurries off and we are left laughing again.  We are noticing the horrible, fading framed architectural print when the anesthesiologist arrives.  She is a funny, chatty lady who joins us briefly to talk through what's going to happen.  She starts by saying, "I hear that you have two kids with CF.  You speak and advocate on their behalf..."

How does she know all this?!

"You two are special people."  She smiles brightly.  She explains the procedure to me an my husband and explains that she will come get me in a few minutes and we'll head on back to surgery.  A few minutes later, she whisks me away to the surgical room.  As they prep me and I am laying down, the surgical assistants start doing their deal...  adjusting this, pulling that.  They do it so fast so you don't have time to BOLT out the doors.  I remember the surgeon coming in as they are all asking me questions about our boys and their Cystic Fibrosis.  They try to distract me and the last thing I recall as I drift off is the anesthesiologist saying, "You're so pretty.  You look younger than I would have thought, well, with all the stress I am sure you are under."

WHAAAAAAT?????...  Sleep takes over.

As I open my eyes, my throat is scorching.  I realize that I am crying.  I wave my hand and I hear them say, "Do you want to write something, hon?"  I weakly give a thumbs up.  They put a marker board on my chest and a dry erase marker in my hand.  The only thing I can think or get straight is right where I am always.

I scribble four words.  The only four words that I can put together in my fog.  But it is clearly everything to me.

"I love my boys."

They wheel me to recovery.  I hate this freaking sore throat, and it's unlike anything I have experienced before.  Screw those viral buggers when you get sick...  this is a painful, aching, throbbing sore throat where the back left side of my throat feels like someone put a gun to my throat and pulled the trigger.

NO TALKING.  Everyone reminds me.  NO TALKING.  No longer "hello" but "no talking" is the greeting the doctors, nurses, Hubs, and everyone says to me.  FOUR DAYS of not one single word.

Totally and utterly speechless.

It's like an awful psychological experiment.  Take a mom and shut her up for 4 straight days.  Then in an even crueler move, limited talking for the next 5 weeks.  Limited as in only a few words a day.  Talk about crazy.  I have been there.

The coming days and weeks are a blur of Charades.  I learn to clap a lot and the boys respond on cue "What MOOOM?!" or "Okay, Mom!  We hear you."  One of my best friends gives me a "No!" button to press at the boys when they misbehave or are particularly rowdy.  It's not only hilarious, but it helps so much!  It becomes a fixture in my kitchen, in easy reach to electronically shout "no!" umpteen different ways at the boys.

My husband and mother-in-law help in the immediate few days with the boys and pressing needs.  I find myself one day in Target trying to ask a Target associate a question using no words.  Try that one for fun.  Or don't.  I can tell you, it sucks.

There was another time when I was going through a fast food drive-thru to get a slushie (my post-op diet was all slushies).  I pass by the intercom and head straight to the window.  I hold up a Boogie Board (an LED writing tablet that the boys have to draw) that says, "I can't talk.  One medium cherry slushie, please."  She immediately starts signing to me.  I wave my hand and write "I don't sign".  She smiles and steps away to get my slushie.  I pay and as we exchange money, she says "May I offer that if you have a sore throat, why don't you go get some nice tea over at Starbucks" and points to the Starbucks across the parking lot.  What the hell??  Does she think I am full of crap or a crazy person or making this up?  I am not some attention-starved psycho...  I just had vocal surgery and just want a freaking SLUSHIE and I CAN'T TALK, lady!  I roll my eyes and pull away.

The next week, life begins to resume as I can utter a couple words softly at a time.  At school pick-up, Michael's teacher is one of the adults that chaperones kids safely to their cars.  She opens the door to let Michael up into the car and she says,, "Michael said you had vocal surgery?  Are you feeling okay?..."

I nod and smile.  She continues, "He said my mom had surgery because she screams at us."

Awesome, yep.  Mom of the Year.

Right here.


*****

Finding my voice in the following weeks wouldn't be easy.  Not the metaphorical finding my voice, but literally making sounds.  I am nervous every utterance I say.  I am anxious about overdoing it or falling back into back patterns.  And without the proper rest, I could permanently wreck my voice.  Maybe being a mute for life wouldn't be so bad, would it?

We muddle our way through the next two weeks with a lot of hand gesturing, pointing, clapping, stomping and eye-rolling.

I am pretty sure though that my husband and the boys are loving the fact that I can't talk.  At least not full throttle for some time.

The most striking moment of my mute experience happens when I least expect it, a typical night in our house.

The regular CF grind puts Michael over the edge.  Dylan has done treatments before Michael and falls asleep early.  And in typical fashion, Hubs is working late.  I hook Michael up to his machines, the usual drill with a nebulizer mask and a vibrating vest to dislodge the mucus in his lungs.

As we being to "suit up", he begins crying.  Not sobbing or sad but tearfully, searingly angry.

"I hate CF!  I hate it.  I hate vest and mask.  I want to be like you and Daddy.  I don't want to do this anymore.  I just hate CF."

Much of my time recovering has meant that I think through what I say before I say it, to make the most vocally with the words that I choose.  In this moment, I stay silent for what feels like forever trying to find the right words.  The time and space of my silence echos for quite some time.  These are the moments you are never quite prepared for as a parent.

I am, however, grateful that his breaking point wasn't two weeks ago when I was rendered completely speechless.  At least, here now, in this moment, I can directly respond to this smart, broken little boy.

He is destroyed.  His steely blue eyes pierce through his bloodshot tears.

"Mike, you can't let CF get the best of you.  It's hard.  It's a lot.  It's exhausting.  But we work hard to make sure you get everything in every day..."  I pause to slow my cadence down.

"You go to school with your friends.  You play soccer with your team.  You get your homework done.  You have playdates.  You do fun things..."  Pause again.

"If you don't do your CF treatments, you won't get to do all these things...  You can be angry.  It's okay to be angry.  It's okay to be tired.  But don't let CF be everything, because it is NOT everything."  I smile brightly at him and pull into my arms.  I feel his body crumble and then slouch.  I can tell he has been holding this in for a long time.  This kid is wise beyond his years and strong as they come.

I sense that he is satisfied.  He just wanted to tell his story.  He wanted to let it all out.  He wanted someone to acknowledge that the CF grind just isn't easy.

I lay with him in bed while his vest vibrates and the medicine steams.  His small hand tucked in mine.  We are quiet for the whole time because I can't yell over the machines.  Our time together profoundly doesn't need words.  I understand more of his journey than ever before.  And I think he understands my perspective.

Don't let it be everything.

When the treatments finish, he brushes his teeth and I lay with him as I watch him drift off to sleep.  His eyelashes delicate and still.

Maybe it's not how many words, the quality of words, or the volume.  No, it's not the words.

It's those few times when words are meaningless and unnecessary.  It's when silence speaks the loudest.  Strangely, it's those times that can mean the most.

Sparkle.

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

 Some might say it was a coincidence.

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

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

Champagne is for celebrations.  Duh.

It most certainly is.

Even for the unexpected and less obvious ones.

*   *   *   *   *

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

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

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

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

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

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

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

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

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

SPARKLE.

Huh?

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

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

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

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

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

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

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

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

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

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

*   *   *   *   *

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

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

As I sip the champagne, I smirk.

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

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

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

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

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

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

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

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

Sparkle is sparkle.

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

Glue.

As the summer wraps, the calendar ages and the days grow ever so slightly shorter.  The boys start their routines at their new schools respectively, and we are lucky to have the comfort of a place that we had called home years before.  Dylan's choking fiasco behind us (didn't hear about it, you can read about it here), we are excited to take on first grade and our anticipated last year of preschool for our Salty Boys.

One warm afternoon as the summer is winding down, I notice a weird mark on Michael's left shoulder.  Almost like an oozing bite that doesn't immediately resolve.  I consult the nurses in the Pediatrician's office.  "Not infected, not lyme," the doctor tells me when I take him in.  We go with the garden-variety "kid thing" or bug bite and life moves forward.

Then, about a week later an inflammed skinrash shows up on Michael's arms.  Mostly only his forearms.

He is not my allergy kid, little brother Dylan is.  I shrug my shoulders and decide to keep an eye on it.  I give him Benadryl and don't really think much more of it...  until the rash disappears and then reappears a few days later.  It comes and goes and AGAIN (sigh) we land in the pediatrician's office.  She is slightly baffled, but there isn't anything immediate to treat.  She suggests a highly specialized dermatologist if his rash doesn't dissipate.

A few short days later as the rashes are as elusive as a mother's sanity, I begin to worry when he starts having high fevers.  The fevers become predictable as an every other day occurence and usually spiking in the afternoon.  Other than visiting the pediatrician and consulting the CF team for his slight cough that comes and goes, we go with Motrin and scratch our heads.

However, it is one afternoon late August, Michael spikes the highest fever he has ever had.  At one point his fever gets as high as almost 104 degrees.  It climbs within minutes, so fast the Motrin doesn't yet have time to kick in.

Then I see Michael's lips turn a haze of blue.  I freak out.  He is a kid with respiratory problems.  AND BLUE LIPS!!!

I rush him back to pediatrician's office with his fever and no real answers.  Maybe a mild cough, but it doesn't seem to connect to a "CF thing".  You see there are "kid" things in our house and "CF" things... sometimes they are obvious, sometimes they are not.

Broken finger = kid thing

Toy stuck up the nose = duh, clearly kid thing (although those CF sinuses can be tricky)

Rash = kid thing

Belly aches = typically CF thing, unless horrid stomach virus then kid thing

Ear Ache = kid thing

Fever = both kid thing and possibly CF thing

Cough = kid thing

Continuing nasty cough = CF thing

Finally she decides no more fooling around...  he needs to start an antibiotic.  Clearly, veering into the CF thing, we must take action.  When she cannot reach the CF doctor to consult while we are in her office, she prescribes an antibiotic of choice and we head home to see if that might help.  Michael seems to respond to the antibiotic quickly.  The next day I speak with the CF Care Center nurse, who I respect and couldn't do without, who advises that about a month previously, Michael had cultured Staph in his lungs.  Well, there's the answer.  At least we know what we were dealing with.  And now the picture becomes clearer about the rashes, the fevers, and the cough.

To give you a peak under the tent of a CF family, we often test to see if the boys have any brewing bacterial infections (to read more about cultures, click here).  And while a child might test positive for a germ, we don't always treat it, unless they become symptomatic (cough, cold, signs of infection).  It's sort of like a pregnant mommy being tested for Strep B.  It's a regular test and just because mommy has it, doesn't mean she's sick.  But there are consquences for baby if left untreated.  So, too, is the deal with CF patients...  or any of us for that matter.  Just because we show a germ, doesn't mean we are sick with a germ.

But now we know that there is a germ.  And Michael is sick with it.

Thankfully, the strange rashy occurrences on his arms and the fevers do not show up after the course of antibiotics begin.  But the cough, still hangs on.  It's not an ominous cough, but it is tight and constricted sounding.  I have heard it before and I don't like it.  After some discussion, the doctors decide to extend his antibiotic for some extra coverage as school is starting soon and he just needs an extra boost to kick what's been going on.  Right when I think it's behind us and we have moved on, I am mistaken.

The excitement of first grade sets in and he is off to the races.  The prestine new schools supplies packed up and ready to go.  New markers.  New pencils.  New glue.  I take a deep inhale of the new supplies and reminisce about my childhood as I pack them all in his backpack for school.  All these tools ready for Michael's wonderful creations that await ahead.

Michael immediately makes friends with his outgoing and warm personality in his first grade class.  I begin the relationship with the school for caring for my son who has added medical needs.  I am pleased that they are communicative and willing to work with us.  I am surprised at the different process of creating Michael's 504 plan, but am open to it.  Illinois just isn't New Jersey.  Beyond the accents, the jug-handle highways, and the Shore, when it comes to getting the boys settled in school, I have to roll with the differences.  I need to relax and know that it will all be okay.

It's not easy working to build the trust instantly that had taken a year to develop with the school and it's team in New Jersey.  But with time I am happy that Michael is in good hands and I have some comfort.  It takes some adjusting and maneuvering...  there is no bus that comes right to our front door and getting out the door is a scramble.  There is more juggling in terms of advising the school when Michael needs his enzyme pills when he eats and we need to find a groove.  But there are few kinks and life moves forward.

By mid-September we are all happy with our routine and with an extra coffee boost in the morning, I am functional.  The days are busy with school pick-ups and drop-offs, with religious ed classes, soccer practices, gymnastics, playdates, and more.

Almost in sync, as the activity picks up, so does Michael's cough.  We find ourselves at our regular clinic visit with both boys at the end of September and though a routine check-up, we plan to piece together the mystery that Michael has been for us lately.  They have us cut short another round of antibiotics and steroids to test accurately again to see if there was any infection.  I am sitting with Dylan in the exam room, while Daddy is with Michael doing his PFT.

I am lost in thought as Dylan taps away at the iPad screen playing Angry Birds.  Daddy and Michael walk in with a hop in their steps.  My husband announces cheerily, "He did good.  He got an 87."

Mental freeze.

WHAAAAAAT?!

I put on the breaks and ask for clarification.  "Wait.  87???"  My husband shrugs and tilts his head a bit.  "Yes."

My brain freezes.  A PFT is a "pulmonary function test" and it helps gauge a CF patient's lung function and related health.  The patient blows into a machine with as much forced air for as long as possible.  PFTs are an important part of CF care.

Michael has always been well above 100.  Seriously, somewhere in the 110's or as high as 120.  All things considered, 100 is considered 'average' for other boys his age, including ALL boys, even without CF.  So above 100 means he is above average for all boys his age.  I sort of live by many numbers for these two kids.  This being a pretty important one.

I almost need to reaffix my jaw back on because it fell so hard I think it shatters on the medical exam room floor.

To give some perspective, I do the math and it means he has lost anywhere between 11-25% lung function in recent months.  JUST.  CAN'T.  THINK.

Daddy tries to calm my already furiously moving brain.  He is not convinced that any of these numbers are accurate since Michael is still pretty young.  Maybe he is not skilled enough of the test.  Or maybe he is still learning.  Then he tries a firm and straight tactic by saying firmly, "You can't freak out.  Get ahold of yourself."  This is a pretty typical transaction in our lives.  He is my strength.  Cool.  Collected.  And forthright.  I on the otherhand shift hard into trouble shooting "mom" mode and what this all means.

As the boys play happily on the iPad, I look at my husband and whisper, "He is going to be admitted.  I know it."

I just shake my head.  I know something is really wrong.  He has been doing this test for two years with success and always over 100.  I feel the ugly grip of this disease take hold.  I slump in my seat waiting for our nurse practitioner and doctor.

Pretty quickly, the doctor and team decide that we should see how Michael's culture goes (to see if there are any obvious infections), but that most signs point to scheduling a bronchoscopy to see what state his lungs are in and make decisions about admitting him for IV antibiotics.

The next week becomes a flurry of my cleaning our house, doing laundry with the looming reality that Michael is very likely headed for a hospital stay.  Call it, 5 days at least.  We are all ready for battle as we drive Michael in to the Children's hospital downtown Chicago in the twilight morning.  He is tired and hungry and poor kid has to fast for his bronchoscopy, but he is trooper.  I pray that they get him in right away.

Within no time, I find myself anxiously awaiting news in the waiting area.  Daddy arrives back with a coffee and bagel for me and the same for him.  We are starving since we heldfast as a troop not to eat, since Michael couldn't eat.  The coffee is less than stellar and the bagel is dry.  Frankly, nothing would taste good, but I know that this might be a long road ahead.  I force them down.

About forty minutes later, Michael's pulmonologist and a fellow doctor alongside, usher us into a consultation room.  They share with us what they found...  First, there was a "hardening plug that had formed in Michael's lower right lobe of his lungs."  I cringe.  "We helped him clear it, but it was so obstinant that it snapped back when we tried to suction it out."

They present us with a picture that is a slap in the face.

The glue.

I start crying as I clutch the picture of this whopper that had been clogging my little boy's lungs.  I can now see the damn glue that I had always known was a possibility, but we always thought we were taking all the right steps to stop it.

This string of mucus passes straight through one of his airways and then branches off into 3 more airways.  This junk was literally lodged in it's place with no where to go.

Stuck like glue.

Poor kid.  I don't see how it is possible that he could've cleared it on his own.  The doctors smile when they see me crying at the very visual reminder of what's going on deep inside the salty boys' lungs.  I am struck at the doctors' weird reaction.

They continue smiling and say, "We know it's hard, but... WE GOT IT OUT!"  They are overjoyed to know that they helped remove it for him.

Then, almost harder to handle, the lead pulmonologist then shows us a picture of the fluid they have rinsed from Michael's lungs.  The clear container is murky and brown liquid.  She shares it with us to prepare us for what might come next with the cultures and tests.  I know with certainty, there must be an evil pathogen, or many for that matter, lurking in there.  I find myself holding my breath.  But this is the very best account of what is going on in his lungs and how we can help Michael treat it.  The raw pictures and discussion leave me emotional and angry.  Then, I feel a surge of action.

I exhale firmly and we start to discuss the plan for the coming few days and hospital stay for Michael.  Terms like "intensive chest PT" and "preferred IV antibiotics" are discussed.  Daddy and I get our game faces on.

Michael is a good kid for his time in the hospital.  He is truly a trooper.

He is generally polite and happy with the nurses, the respiratory therapists and all the doctors that come in and out of his room.  His blue eyes light up as he makes conversation and he makes them laugh.  He does his respiratory therapies four times a day without a complaint.

There are the amazing friends and family who bring treats and toys.  Anything to bring a smile to a kid's face in the hospital.  Anything for our precious Michael.

He is excited to participate in Halloween Hospital Bingo.  It's a welcomed distraction since he spends six days in the confined walls of his room.  He is in "contact isolation" meaning he cannot walk freely throughout the hospital unless it's necessary.  And certainly not without a mask to cover his precious little nose and expressive smile.  Michael is the final winner in the entire children's hospital for bingo and gets to choose a Star Wars action figure.  He is quite plainly thrilled.

There are also the tough moments as his mother.  One night he reads his first book aloud to me under the hum of the florescent lights.  I am sad to realize that it wasn't in the comfort of his bed, but in a children's hospital.

Or that the only thing in the world that he wants is to be on the field with his competitive soccer team, the Lions.  All those little Lions on the soccer field Saturday morning wear purple armbands on their left arms where his PICC line is located for his IV meds in honor of this brave little boy.  Purple is the color supporting the fight against Cystic Fibrosis.  I cry because of all those parents and kids that are rallying around Michael.  It crushes Michael that he is not playing, but their warmth and compassion make it a little easier.

At least he can go to the exercise facility for kids in isolation to keep his body strong and healthy.

There are the distractions...

The hospital "selfie".

A new LEGO set.

And homework.

And sometimes the distractions are not enough for a mother.

It's tough to see your beautiful child go through all of this.

All because of this messy glue, my husband and I celebrate our 11th anniversary apart -- he with Dylan at home and me with Michael in the hospital.  You never realize what life will hand you and I wouldn't have believed that 11 years ago, this would be the picture.   But it all began with love and we continue this recent battle in the war on CF with love at the core.

Our time at Lurie Children's Hospital becomes a lengthy blur of take-out meals, blah coffee, little sleep and lots of conversations with doctors.  Upon discharge, we are relieved to learn after the tests come back and by some MIRACLE there is no bacterial infection in his lungs!  It is completely unreal and we are so incredibly thankful.  There, however, is a pesky fungus that is showing up, but it's not uncommon for CF patients.  We will treat it if he does not continue to improve.  But the doctors believe that the biggest issue was that Michael's lungs were filled with crud and inflammation likely from all the infection he had been fighting since January.  Simply, we were effectively treating the infections along the way, but his body's reaction was this buildup of mucus and inflammation (which is very typical for CF patients).  Ten months of the battles had taken its toll.  They reassure us that the course of IV's and his "clean out" during his hospital stay are critical pieces to getting him on course to get back to his best.

We are so happy to be stuck on the Ike in a sea of Chicago traffic...  Our normal grumbling when it comes to traffic is replaced with smiles and happy talk.  We are taking our little boy home!  We let Michael attend a couple half days of school with his PICC line and his at-home IVs.  We try and return some normalcy to him.  In only a short couple days at home, he sees the CF doctors and blows another PFT.  And this time he blows 103!  So long 87!!!

A 103.  YEP!  A ONE-HUNDRED-AND-THREE!!!

Immediately the doctor decides to stop his IVs at ten days.  We are all thankful and relieved.  But it wouldn't be quite the end.

When the at-home nurse comes to pull his PICC line a couple days later, Michael is super stressed out and crying, but it goes just fine.  She successfully removes the PICC line and he calms down.  As part of the routine care, she takes his vitals and notices he has a low-grade fever.  Eh, she and I chalk it up to him being worked up about the PICC line removal.

As the night grinds on, Michael has a fever that reaches above 100 and sets my fear in motion.  I call the on-call doctor to learn that if his fever gets much higher in the next day, he will need to go back to the hospital to check blood cultures to make sure that he hasn't gotten an infection from his PICC line.

Crazy how medicine can work...  You treat one bodily infection with an IV, only to get possibly another infection FROM the IV.

The next day, Motrin cannot control his temperature any longer and with a 103 fever we head straight to the children's hospital ER.  It is this time that Michael has had it.  He is overwhelmed.  He is scared.  He just doesn't feel well.  And all that he had done to keep it together and be such a good boy for those days in the hospital was just gone.  He was just plain done.  And who could blame him.

He screams when they start an IV in his hand and when they remove his bandages and examine where his PICC line had been.  All his frustration and fear finally comes to a precipice.  After some long hours into the evening, and with Michael's fever under control, they send us home with another course of antibiotics until we know more.  Michael is exhausted, but stable so he can rest at home tonight.

A quick trip through the drugstore's pharmacy drive-thru and I figure we'll be home in no time.

WRONG.

The drug they prescribed is considered a specialty antibiotic (i.e. they don't have it on hand at most pharmacies) and even if the pharmacy staff orders it now at 9:30 at night it won't come in to the pharmacy for pick up for another two days.  The helpful tech suggests that he can send the script over to a Walgreens that is 20 minutes away and if I can get there before their 10 pm close, we should be all set.

"Done!"  I hurry with my tired little guy in the car to the Walgreens.  Michael perks up when we walk in asking for a million different types of candy and drinks.  I indulge him and let him choose two things while I wait on the medication.  I realize my neck is stiff and sore.  I close my eyes standing at the counter while they mix the flavor syrup into the liquid medication so it is slightly more tolerable for Michael.  I am simply grateful that we can sleep in our own beds tonight and not at the hospital.  It is late when we leave and Michael and I collapse into bed.

Over the coming days, Michael recovers.  Color returns to his cheeks.  The PICC line scars begin to heal.  When we review the final act with the doctors, we discuss the possibility that he had a reaction to the IV antibiotics he had been on (even though it was righ at the end of his of course).  Down the road, I will have to log that drug in my mental filing system as one to reconsider when we are faced with this again.  But for now I know that Michael is doing better and all signs point up.

I am proud that he really kept up with his school work and is able to return to school again without missing a beat.  And Michael is just finally happy back to his old ways.

Seven weeks later, I find myself in the car with Michael on our way to a follow up CF care visit to see how Michael's long-term recovery has gone.  I am anxious to see what his PFT shows this time.  I am lost in thought as we drive along the Chicago artery when I hear Michael say softly from the backseat, "Mommy, some day there will be a pill that I can take and will make all the glue go away?"  I nod and explain that there are researchers and scientists in the labs every day trying to make just that happen.  I tell him that they are working hard and doing all they can.  He looks out the window and replies, "Because that would be awesome."

*   *   *   *   *

It's Thanksgiving weekend and we are engulfed in the 80's holiday hit, Home Alone.  I catch myself watching the final scene with the boys when the parents and family tumble in the front door and embrace Kevin.  Before I know it, hot tears are streaming down my face.

Thanks a lot, John Hughes.  You get me every time.

Michael stands directly in front of the TV fixated on the story that he will tell you is the Christmas movie about the kid that sets booby traps and gets the bad guys.  He loves this movie -- from the adventure all the way to the gooey ending.

Little brother looks across the room processing the feel-good ending, and he locks in on my gaze.  "Mommy, you'll never leave us, right?"

I laugh through my tears and tell him, "Nope.  Never.  You see, you're stuck with me.  Like glue."