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."

Limit.

June and July are a blur in the world of the Salty Boys.

I nearly can't see straight.

The dog leaves me in a fog of care and rehab with her torn doggie ACL and the final days of school and our life in New Jersey nears an end.  We take long strolls together down our block in the flood of the evening setting sun.  The boys run ahead as I walk our chocolate lab who is pulling ahead wanting to keep pace with the boys even with her miserable limp.  I am convinced she thinks she is a kid herself.

The street lights hum their low tone of summer as they cast a coral iradescent light above.  It mixes with the pinks, purples and lilacs of the sky above of the setting sun.

I try to cherish these slow moments as there usually aren't many in my life.

Michael and Dylan play chase ahead and they pause to explore a rolly-polly bug on the sidewalk.  I watch as they bend down and examine the creature.  I watch their shapes, crouching and thoughtful.  I wish I could keep them curious and interested forever.  The dog huffs and puffs to pull me forward faster with her ailing leg.

We say our good-byes to our friends who have become our New Jersey family.  Through the tears and the uncertainty, our family made a life here in the suburbs of the Big Apple.  We will miss our friends that we spent holidays with and hot summer days.  The friends we cried with and celebrated with and speculated our next life's steps together.

The hardest for me is saying good-bye to our friends who accepted us as, well, US.  The CF stories.  The shoulder the lean on.  The new adventures like the hurricanes (Irene AND Sandy) and the memories scattered about the New Jersey landscape meld together.

The move is stressful, but for our summer before us, it certainly wouldn't be the grand headline.

Our time wrapping in New Jersey concludes with Michael's last day of school, or as he'll point out, not really the last day of school.  We had to do some serious parent manuvering and with a negotiated LEGO set later, Michael is willing to accept that he won't be able to attend the *very last* day at his beloved school.  Our family meets Michael at the front of the precious elementary school where we say our thanks to a staff and final good-byes.  The principal who knew my son by name, says good-bye to our family.  She was a rock star principal, and as I understand it, she greeted each classroom every day of the school year.  I won't forget how she shared stories with me about Michael.  The school nurse who opened her heart to our family and understood the CF story.  She was cool and compassionate and always available.  I always knew that Michael was in good hands.  And his teacher who was thoughtful, engaging, encouraging and helped him find his voice in Kindergarten.

With many tears, we head to our home for the last two years and clear out our final belongings.  It takes some manipulating to get everything to fit in the car that the moving van has left behind.  The enormous box of meds (that, mind you, are temperature sensitive and it's summer!), the machines that are an integral part of the boys' care every day, the luggage with our essentials for the next few days, and even the recovering dog.  She stands in the empty house and cocks her head to the side with intent focus trying to understand the confusion.

Then in the final hour of the move, she decides to plant herself at the back door on the porch, partly stubborn, partly confused as to why every single thing has been removed from the house.  The dog crosses her front paws as she is laying as if to say, "Nope, I am quite comfortable.  You go ahead."  She is refusing to get in the car.  Then I realize that this member of our family has claimed this as her home.

It takes my husband to physically lift her up and guide her into the car for her to comply with the new direction our family course is going.

We say our good-byes to the place we called home for two years and slowly pull out of the driveway and head to I-80 for our trip west.  Even the boys are reflective as they say "good-bye" out loud to our home.  We depart around 3 pm, far later than we had originally planned, to make the trek back to Chicago.  We pile in the car, total lunacy and all, and we head out on our way.

Well into our 13-hour drive we realize we are exhausted.  Utterly exhausted.  From the tactical planning to the organizing to the wrapping our lives and saying the good-byes, we are completely and totally drained.  We spontaneously decide to book a hotel room and stay overnight in Cleveland.  With sleep in sight, we listen over the radio to our beloved Blackhawks win the Stanley Cup as we drive under the inky black sky and scattered flickering stars above.  We stumble into the hotel room at midnight and all collapse onto the beds.  The dog pouts on the sofa of the pet-friendly hotel room.  She already misses her familiar spots at our home in New Jersey.

The next morning we are a bit more refreshed to finish our trip.  A few quick stale bagels and bad coffees in hand for the grown-ups and the kiddos hooked up to the iPads, we shove off.  I know that I am maxed out.  My bones ache and the car steers due west, the rising sun behind us, on the road again.

That's when we spot the police car.  My husband presses the break with ease trying to disguise that we are over the limit.  Nabbed.  Too late.

My husband is baffled, "What is the speed limit here?"  I crinkle my forehead and take my thumb and forefinger to rub my eyebrows straight.  The boys begin asking a million questions about the speed limit and is daddy going to get arrested.

I continue rubbing my head as our car slows and stops in the shoulder of the road.  The officer walks up to the car and informs us that the limit is 60 and we were going 78, thinking that the speed limit was in fact 70 like most of Ohio highways.  We are stunned as we are on an interstate that is 6 lanes across and we just saw a sign for 65.  However, we mentally break and back-track to realize that we just exited from that highway and had just started driving on this highway.  The darn speed limit had changed.  We would also later find out that the speed limit on this very same highway would change days later with a new law at the end of the month up to 65 mph.

We.  just.  want.  to.  get.  home.

We accept the ticket begrudgingly and carry on.  This final trip of our lives in New Jersey back to Chicago proved to be the toughest.  In the final two hours, we dodge a tantrum because a six-year-old's non-answer to if he wants Gatorade at a pitstop and a four-year-old having to pee roadside when push comes to shove.

We arrive in Chicagoland with an aching exhaustion, a Stanley Cup under our belts, and a little wiser about the interstate speed limits in the state of Ohio.

What is shocking, is the speed in which our stuff arrives back in Chicago.  When we had moved to the East Coast, the movers took a full eight days to arrive.  We stayed in a hotel for 7 of those days with two little ones and our pooch.  Yes, SEVEN days with two tots and a dog.  This time around, we are praying for a similar journey giving us more time to ease into our house and tackle some projects while the house is completely empty and clean.

No such luck.  The moving van pulls up less than 48-hours after we arrive in Chicago.


The next week and half is a scramble to get our stuff in the four walls of our house and still get the boys CF treatments in each day.  Everywhere we drive, Michael chirps from the backseat, "Mommy, the speed limit is 45, how fast are you going?"  I sigh deeply and report to my six-year-old backseat driver that I am well under the limit.  As if the move and my newly monitored driving skills weren't enough, the summer wouldn't go quietly for our family.  Finally when some of our belongings are out of boxes and have made their way into the closets, I officially hit my own personal limit.

Right when I thought things would slow down...  Right when our days are filled with sunshine and swimming at our pool...  Right when I thought there would be a pause and time for a break...

I will never forget the minor incident that would create a major heap of trouble.

I am standing in our kitchen just a day or two after a fun Fourth of July celebration with family and friends.  It is good to be back in our hometown.  Familiar and fun and yet foreign and new things all at the same time.  We are basking in being back.

The sun is already warming the summer morning and we are moving slow.  The boys are starting their morning with breakfast at the kitchen table when I hear Dylan make an unusual sound at the table.  It is an "ack - ack - ack" ing sound.  I can't quite figure the sound out at first pass.  I look over and he is panicked with his mouth agape.  I run to him and tell him to "drink-drink-DRINK!".

I now know immediately what has happened from his look of distress on frozen on his face.  He must have been swallowing his digestive enzymes pills to eat his breakfast and most certainly he didn't wash them down with water.  From my best assessment one got lodged or stuck in his throat.  After he drinks and drinks and DRINKS, he is wide-eyed and starts to cry.  He is raging upset and I do what is counter to all my mothering instincts -- I don't console him.  I actually push him to swallow the rest of his pills so he can eat.  I don't want to make a bigger deal out of the frightening experience than needs to be.

You know when a toddler falls and hits the ground really hard for the first time, they often look to the grown-ups around before they react.  And that was my M.O.  Don't cry.  Don't panic.  Just get the rest of his pills to go down.

I know instinctively that HE MUST GET THE PILLS DOWN HIS THROAT IMMEDIATELY with a positive experience as soon as possible before time and fear takes us down a path of disaster...

But my fear is already under way...  The pills never get down his throat.

He shakes his head.  He outright refuses to take his pills.  He refuses to eat as a means to avoid taking his pills.  This awful experience in the morning and carries into the night.

No pill swallowing = no eating

The next day my husband and I begin to stress as he doesn't eat any foods unless they don't have fat...  you see, the digestive enyzmes are taken with nearly everything to help the boys digest fat and protein since their pancreases doesn't work to release these enzymes like most other people.  But they eat fruit, pretzels and other non-fat foods without the pills.  However, our salty boys needs a CRAZY amount of calories.  Fruit and pretzels won't cut it.

Our boys have taken literally handfuls of these pills since they were each 21 months old.  They were little itty-bitties slamming pills back.  It was remarkable awe-inspiring to watch.  Your brain couldn't process watching these young children swallowing handfuls of pills with such ease and skill like they did.  I remember Michael taking nine pills without blinking when he was two-years-old.

And here I stand at my kitchen counter feeling our world get yanked back.  HARD.

This smart little four-year-old goes into survival mode.  Dylan's fear overrides the THOUSANDS of times he had swallowed them in his life.  Over the subsequent days, he perpetually asks about every snack if there is fat.  He self-limits his diet to non-fat foods to avoid taking his pills.  My heart is shattered at a friend's birthday pool party when he is so hungry and he has purple rings under his eyes.  His tiny hand reaches for mine as we are all done singing "Happy Birthday".  I lean down to hear his whisper sweetly in my ear, "Mommy, do they have any fat-free cupcakes?"

Heart.  Broken.  Instantly.

Every day that passes becomes excruciating as I realize the calories he is missing in his little body.  These kids require 150-200% more calories to maintain a normal weight and grow like their peers.  This little "hiccup" of not eating and the fallout has effectively slashed his diet to NONEXISTENT.  The consequences could be considerable to his weight and his overall health.  And there is no navigating the landmines and mindgames that come with this episode.

Do we feed him a million nonfat calories that do very little to nourish his body?!  Or do we dig in and require him to take his pills, which on a larger scale is the most important message...  compliance with care in a CF household is of the utmost important.  CF is unrelenting and the last thing we want to teach this precious little boy is that he can choose to take his pills or not to.  We have raised them to understand that there is no choice.  They need to make good choices in their lives especially around how they care for their bodies.  This is an exact manifestation of this very idea.

Our care team advises we get tough with him and that he is trying to manipulate as kids do.  It's just a phase and he'll come around.  They coach us to withhold food until he takes his pills.  No negotiating and no food unless he takes at least on enzyme.  He can take it in soft food like applesauce (like they did when they were infants).  Fat or no fat, doesn't matter, he must take his pills.

Dylan's response?  Nope.  No way.  He shakes his head.

I take him to the store and we try different applesauces...  We try yogurt...  We try swallowing smaller pills...  We try Michael coaching him with taking his pills...  We try watching videos of kids (and even himself) taking pills...  We try practicing with teeny cake sprinkles, but nothing is working and he is now eating nothing...  NOTHING!  He shakes his head over and over and over.  He cries.  He is so confused as to why he just can't eat something.

But his will is ironclad.  He won't take the pills.  And I am unraveling with each passing hour.

Imagine putting a plate of food in front of your child and only letting them eat once they did something that they were terrified of doing.  Imagine your little one crying, PLEADING, for you to let him eat food and you can't allow it until he swallows a handful of pills.  That is a handful of pills that he believes will cause him to choke.  It is the WORST.  I officially had hit my limit as a mother.  It is agonizing not being able to feed your child.  It's like an invisible roadblock preventing them from eating the food they so desperately want.

For three days on a popsicle-and-Gatorade only diet and now pushing over a week of low calorie foods in his fuel tank, we are out of ideas.  I try to tow the tough love line, but it all falls apart when I arrive at the top of the stairs and I find Dylan splayed on the floor of the hallway.  He is lethargic and slow moving.  I freak out.

Typically, Dylan climbs all over the couch when he watches TV.  He never sits still.  He walks around our table at dinner.  He is a mover and a shaker.  I have never seen this little boy like this.

I go to pick him up and cradle him in my arms.  He is on FIRE with  FEVER.  I just wish in this moment that this kid would eat.  Whatever happened to the days of handing our son his pills and a plate of food?  It's a far-gone memory.  Our world has revolved around the Dylan food strike for the last seven days.  And now the world comes to a grinding halt with him being beyond sick.  I have little left in my tank too.

My husband and I rush him to the pediatrician's office.  When we walk in, they hurry us to a room and he motions that he is going to vomit.  The staff gets him a bucket.  I whimper under my breath with sadness knowing that he is throwing up his only calories for the day a la cherry popsicles and orange Gatorade.

The pediatrician takes one look at him and then us.  She is forward and plays no games.  "He is healthy.  He is fine.  He just has a virus.  He is okay."  As she examines him, he has a 103.6 fever and lies on the table in a pathetic state.

I stammer, "But, but how is he fine?  he hasn't been eating.  For over a week!"  My brain is screaming...  "Can't you see that he is NOT fine?!"

In some small way, I am reassured that she is collected even in my complete mothering meltdown.  She gives no indication of concern in her voice.  "I would tell you if you should have a reason to worry.  I am telling you not to worry."  My husband and I share the recent days with her and the different strategies around how to handle Dylan refusing to take his meds and, thus, refusing to eat.  She listens intently and then delivers her assessment.  "Kids will do things like this.  CF or no CF.  When he is ready he will swallow them and eat.  Let him eat the foods he wants in the meantime.  If the food requires that he needs enzymes, let him make the decision."

Her words have logic and reason.  But I am an irrational, under-rested mother.  Nothing at this point has logic or reason.

Dylan is miserable and lets out a groan that sounds like "go home".  My husband offers to get him ready to take him to the car.  I am left behind in the office with the doctor.  I look at her with blurry tears in my eyes and blurt out, "This is the hardest thing we have had to parent through."  She smiles and says, "This will not be the hardest thing you will ever face as parents."

REALLY?!!!  I can't make sense of her words.  She gives me the name of a good therapist scribbled on a piece of paper as I leave the office.  I am frazzled and don't know how to proceed.

The next days are a blur of phone calls to close friends, specialists and our CF care team trying to get Dylan in to see a good speech pathologist who could work with him on his phagophobia (fear of swallowing or choking).  I would do anything, ANYTHING, to help this sweet little boy.  He is exhausted, confused, and just plain hungry.  What's worse than a mother who can't feed her child?  Especially when she wants to and the child thinks that she is starving him.  He literally thinks we are not feeding him.  It is heartbreaking for us as parents.  No, wait, devastating for us as parents.

After navigating schedules and who's who, it is evident that it will be at best two full weeks of not eating before he will even get to see the specialist who can help him.   Two weeks sounds like not a big deal, but when your child isn't eating anything, it feels like an eternity.

My eyes hurt and are swollen from crying and I literally ache for him to feel better and feel like himself again.  I myself am not eating very much.  Sort of a mom thing I guess.  Your kid can't eat, so you don't eat.

My limit.  Every mom has her limit.  I have officially met mine.  I feel like I am sitting in the driver's seat facing the officer at my window with stern eyes and knowing that I can't change the circumstances.  I just need to deal with the fall out and do my best.

I hop out of bed the morning we are supposed to meet with the specialist.  Maybe I am too optimistic, but the reality is that ANYTHING is better than where we are.  The promise that we can try a new something today gives me hope.

When the time comes to meet the specialist, I am finally at peace.  She is warm, funny and embraces Dylan's gregarious personality.  She teases Dylan and laughs a lot.  She immediately builds credibility and trust with him.  He is laughing and being silly, but I observe as she "explores" foods and textures with him.  She moves swiftly and stealthy.  She is skilled and I am utterly impressed.  I am stunned the moment she gets him to swallow his pills in yogurt.  At that moment, it doesn't matter to me if I must carry yogurt around in 100 degree weather all summer and if it's the only way he'll swallow his pills and eat, it's good enough for me!  She accomplishes more in 60 minutes than we could do in 14 days.  I am humbled and profoundly thankful.  She even pokes fun at Dylan's New Jersey accent.  When I ask if she's kidding, she laughs at me, "No, I am serious."  She is after all a speech pathologist.

That night, I sleep better than I had in the previous month.  It would be a long road and two more appointments with "Miss Cathy" before he would outright swallow his pills.  And still it would take another two months before he finally was willing to do it on his own at home.  One random afternoon, I ask if he wants to try swallowing his pills as he once did.  He carefully negotiates and accepts an agreement of an hour on the iPad playing Angry Birds before he settles back into taking his medications casually again.  I laugh at the absurdity of it taking an offer of an hour of playing Angry Birds to breakthrough.

But it really wasn't about an hour of playing on the iPad, was it?

It occurs to me...  maybe somewhere along the line, he had hit his limit.  Potty training.  Leaving the only place he could call home.  Leaving his school, his friends, his bedroom, his backyard.  Maybe the prospect of a new life and losing control of everything he had known and thrown him into a tough place for a four-year-old.  He was dealing with a lot.  Pretty heavy stuff for a preschooler.  Maybe he had reached his limit.  We all have one.

Weeks later, he recounts the whole debacle to me and family that "my brain needed to relearn to take my sprinkles."  He is four years old and sometimes I feel like he has had more to deal with than so many adults do in a lifetime.  And often he says it more directly and eloquently than most adults too.

The limit.

We may not even be aware or have a good handle of our own limits.  But on this journey, in one the toughest of times of my experience of parenting, I knew I had found my own limit.  It's also these stressful life moments that lend clarity.

Along the way, under all the mountain of emotions and endless problem-solving to help Dylan, I learned a profound lesson -- there is NO LIMIT to a mother's love.

Christmas Magic.

Somewhere between my thankful Thanksgiving and my sinus-busting winter cold, I performed a motherly miracle.  I believe that every mother manages a few miracles at some point in her earthly life.  I am not being sarcastic or snarky.  Honestly.  I realize that those truly holy miracle-workers and the saints are on an entirely other level, but the every-day mothers of this world also have their small miracles or at the very least, magic.  And sometimes these special instances are just so necessary.  This one is mine.

Thanksgiving definitely just our speed...  a lovely conjunctivitis bug floating around, which would later visit the house weeks later again.  But this first round of "pink eye" brings nothing but the typical holiday commotion.  Monday morning of the week of Thanksgiving, I wake up a tad later than usual.  My husband is kind enough to get up with the boys and get the day underway before he needs to head out.  I greet the favorite men of my life at the breakfast bar where the two littlest ones are sloshing cereal around, some of it actually getting into their littlest mouths.  Their pajamas have a spattering of liquid where the milk has dribbled onto their chests.  My husband is brewing a cups of coffee for us.  I rub my eyes and yawn.  As I refocus, I notice Michael has one eye that is considerably bloodshot.  A waive of ruination comes over me.  "Oh no," I gasp as I lean in to examine his eye more closely.  Smooth mom move, I know.  I sometimes have a hard time with subtlety.  Especially at 8 am and no coffee.

"Michael has pink eye."

My husband, a professional skeptic replies, "That's not pink eye."  He shrugs.

Pffft.  Like he knows.  His doubt aggravates me.  His words hang in the air over me.  I know he is wrong and I am right.  I punctuate my opinion with a sip of my fresh cup of coffee with an warning eyebrow raised above it.  I send him off on his day wishing him a good one.  I know I am calling the pediatrician's office as soon as they open.  This is not the way Michael's eye normally looks at this time of day or any time of the day for that matter.  Surely I am not willing to mess around with highly contagious pink eye and visitors arriving this afternoon!

Our friends are making the long trek from Chicago and are scheduled to arrive by late afternoon to celebrate thanksgiving with us.  They have a three-year-old daughter and I just know that pink eye is the LAST THING we need in this house.  I think through the ways I can locate HAZMAT suits before they arrive.  Or more a possibility than that, if I can get the coveted antibiotic eye drops in this kid immediately he will be fine.

I call the doctor's office at 8:30 am SHARP.  I explain the situation to the receptionist and am told politely that a nurse will be calling me shortly.  The time passes.  It's excruciating.  I clearly explain to Michael that he cannot share toys with Dylan and should either stay in his room playing or sit nicely on the couch and can watch a movie.  He is a really good little boy and understands the nature of "contagiousness".  He follows my directions.  "No, no, Dylan.  I cannot play with you.  You can't play with my toys.  I have PINK EYE."  Michael wags his finger at Dylan as if a stern warning.  He is loving this authority.

As time passes, both of Michael's are now bloodshot.  Worse yet, both eyes are now starting to shed goop.  I am panicking.  Two hours later, I still have not heard from the nurses at the doctor's office, so I decide to call again.  I explain the situation, again, and ask that they call in a prescription as soon as possible.  I am politely told a nurse will call me.

By 11:30 am, I am full-blown anxious.  I call again, knowing that they will be going on lunchbreak soon.  If so, then I am COMPLETELY screwed and Thanksgiving will be a total mess (as if it isn't already?!).  I am transferred to someone I assume is a nurse.  Instead they take the information down and tell me they will call me.

I am frayed by this point.  I look at Michael and his eyes are swollen and red.  There are rings under his eyes that are red, and the are streams of green ooze creeping onto his cheeks.  I wipe, rewipe and wash my hands diligently with soap.  REPEAT.  Over and over.

FINALLY, I get the call that eye drops are being called in at the pharmacy.  Like a maniac, I throw the boys in the car and tear over to the drive-thru pharmacy.  Dylan has fallen asleep and now I am racing to get home and get these drops in Michael's eyes.  I can't bear the wait.

I pull over in a Starbucks parking lot, throw the car in park, and get out.  I rip the medicine out of the bag, out of the box and tear off the seal.  I explain to Michael gently to tilt his head just so and to not rub his eyes.  He is brave.  The eagle has landed.  The kids is medicated.  But not in the 24-hour window that I had hoped so he wouldn't be "contagious" and now can't attend his Thanksgiving feast tomorrow at school with his friends.

Our visitors arrive and Michael looks like a total and complete mess.  But we are so happy to see them and have a ton of fun and laughter.  Oh and some jolly good handwashing too.  My hands are cracking from the insane handwashing.  But the kid is medicated.

Within days, our friend's little girl's eye is swelling and she starts with medicated eye drops.  We are all staring slowly at each other through out the days, waiting to catch a glimpse of the next victim.  There are countless comments...  "Here look at this."  "Does this look red to you?"  "I think my eye is itching."  And my favorite, "Don't touch your eye."

Thanksgiving itself is fun.  A good meal with good food and good friends. We are grateful to be with them and that they made the 12-hour journey to visit us.  We say our blessings for our family and friends near and far.  And one last prayer of thanks that we haven't had a complete breakout of the contagion for the Thanksgiving holiday, just a minor one.

The time passes much too quickly.  Our friends depart the day following Thanksgiving.  Just in time for Dylan's sweet little eye to start swelling.  By 4 pm, it looks at though he has been punched in the eye by a heavy-weight boxer.  His eye is tearing, bloodshot, and starting to goop.  Oh great.  And here I thought we dodged a bullet with only one of them getting pink eye.

Tis the Season.  GROAN.

While many others decide to raid the stores for Black Friday and the weekend, I find myself in bed.  I feel cruddy, exhausted.  No pink eye for me...  instead, I start a sore throat that is evil and wretched.  My husband gives me the rest I need and handles the busy boys through the weekend.  But Monday comes and slams me in the face.  It is a painful reality, when my husband heads out the door for work and and I feel like roadkill.  I probably look like it too.  And to make matters worse he is leaving town for three days.

With all that comes, it too goes.  At least Michael returns to school after the holiday, too.  So in theory I can get a bit of rest while he is at school.  Only problem is that Dylan doesn't nap.  This two-year-old has argued and fought naps for months.  He is exhausted and either collapses at 4 pm doing his CF treatments or he is wired and can't fall asleep until late at night, in which case is he is a total mess.  To get my sweet little boy to nap, is a delicate, complex set of variables, usually which is never quite the right balance.  I am convinced he has very hard time turning off his brain to rest...  more over, it's hard for him to sit still.  Usually when he does, that's when he'll pass out.

In my sick state, Michael excitedly lectures me on getting all the Christmas decor up.  I battle through and try to enjoy the time hanging up the shiny ornaments and the sparkling stars with him.  I really love Christmas, I only wish that I could feel better.

Upon Michael's return to school, there is a day a thought occurs to me, even in my gray haze.   I know that I have a limited window of Christmas shopping with my husband's travels and as awful as I feel, I think, "Well, at least I will be out of the house.  I haven't left the house in days..."  I know that I can drop Michael off at school and get to Toys R Us for a quick trip with Dylan.  Heavens knows, I refuse to go within 5 miles of that store during the busiest hours.  I have dodged the Black Friday crazies and hope to avoid the working parents shopping after they wrap up business at their offices.

I figure that even if I don't actually make purchases at least this way I can peruse options.  Thankfully, Dylan is not a gift kid.  He is not a whiner, he really could care less about getting something new at a store.  I figure at the very least, I can tell him no, but can get my bearings for Santa's treasures.

As I pull away from the school, I watch Dylan's heavy, drowsy expression.  His little eyes blink slowly fighting off Mr. Sandman.  His blinking becomes longer each time until his eyes don't reopen.  Great, my inner monologue snorts.  Now, what I am going to do?  Again, I figure I can put him in the stroller and take inventory of gift options.

I head off to the toy store.  A cool nasty drizzle comes in drifts and I just know Dylan is going to wake up when I take him out of his car seat.  As I park the car, I hop out and grab the stroller and set it up.  I rustle around the back of my SUV looking for the visor.  It is nowhere to be found.  If I am going to put him in the stroller, I don't have the one major prop that I need to shield him from the misty rain.  Cars whoosh past and horns honk in the distance.  Dylan doesn't stir.  I slowly hold my breath, and unsnap the buckles to his carseat.  Then I jostle his arms loose of the harness and carefully lift him out of the seat.  As I set him in the stroller, flecks of rain land on his forehead, his nose and his cheeks.  He doesn't even flinch.  Huh.

A car flies by on the busy mall road and stirs a loud sloshing sound of rainy pavement.  Dylan doesn't move.  I let my breath out that I was still unintentionally holding.  No point.  Nothing is waking this kid up.

I quickly shove the stroller into "go" mode and head into the store.  I am met with the glaring overhead warehouse lighting and the Christmas mania of Toys R Us.  Every kind of toy within view.  The first few displays are bustling.  Red and green paint the shelves and the toys.  I see hula hoops, LEGOs, boardgames, and stocking stuffers.  My brain is on overload.  I see dolls, cars, trucks, blocks and more.  Since 75% of my brain power is being sucked up by this nasty virus and my sinuses are my worst enemies, I have very little cognition to work with.  I fight the visual overload, press my thumb into my throbbing forehead, and grab a hand basket.  It is a precarious exercise a juggling my hold on the basket, lugging my purse on my shoulder and steering my 37 pound child in the stroller with requires both hands.

Dylan is slumped and laying back in the stroller in dreamland.  His mouth is open and his eyes locked shut.  I start the mission.  Go!

I head to the LEGOs I reason through in my brain what sets are appropriate, I do the mental math of the buy one get one half off deal of the day.  Turns out it is the same that would go on every day until Christmas, so I am no fool.  I re-evaluate what is on Michael's wishlist.  I grab a couple small boxes and then  I head to the other goodies.  I find a couple interesting puzzles for Dylan.  I mentally scan the options and review the puzzles Dylan already has.  I quickly grab 3 and shove them in my basket.  I then turn to go to the display for the toys Michael has set his heart on this Christmas.  His beloved Star Wars action figures.  I had researched and found an age appropriate version of the Star Wars famed Millennium Falcon and action figures.  As I stroll up, I am greeted by an empty shelf.  WHAT????

The preschool version of the Star Wars toys are all gone.  I don't think there was a deal on them and have no clue that they were popular.  Or maybe I am just unlucky.  Probably the latter.  I take a deep sigh and realize that I need to head back to the front of the store to talk with someone at the customer service desk.  As I wheel the stroller around I am met with countless other parents whose kids are presumably at school and are loading up their carts or coming right at me.  I just love going against the incoming traffic of other carts.  I dodge and swoop past them.  They got nothing on these stroller moves.

As I make my way to the front of the store and Dylan is still sound asleep, other parents laugh and snicker as we pass.  They know that I am pulling off a daring attempt at a holiday task...  a three-year-old asleep in a toy store, while Mom is doing the stealth Christmas shopping.  They make eye contact with me and chuckle or turn to each other and comment and point.  I realize in my haste that they think this is really funny.  And it is, I just don't have time to think about it.  I am frantic to have it be over.  I just want to wrap up and get out of here.

I firmly push forward on my mission.  The hour-glass is fading and I am certain he will wake up.  I am now in it up to my eyeballs and there's no turning back.  I am officially putting things in this basket and if he wakes up the magic will be lost.  The well-being of Christmas's future for our family hangs in the balance.  All could be lost.  I cannot have my last born never truly believe at Christmas time, because I am a schmuck of a mom and ruined it for him when he was two years old.  I am greeted by a line at the customer service counter.  I feel myself self start sweating from the stress and panic.  A trickle of sweat drips down my neck.

A little girl is sitting quietly in a cart in front of us with her mother next to the cart.  She is probably about four years old and has a prominent frown across her face.  She is sulking.  The little girl spots Dylan sleeping in the stroller and decided to yell something indiscernible at him.  My heart seizes and I glance with fear at her mother.  Her mother smiles at me firmly and whispers something to hush the girl.  I shift hard and try to wipe the sweat that is forming along my brown with some body part.  I don't know which one since my hands are holding toys, my purse and still navigating my sleep angel.

When it's our turn we arrive at the counter where a young girl greets us.  She is immediately helpful, spying Dylan and realizing the coup that is taking place.  She calls to the stock room to locate the toys I am looking for.  I feel the Santa inside me giggle.  I just might be able to make this happen.

Within minutes a teenage boy plunks a nondescript box down near the counter.  He rips the box open and places it directly in front of me.  Jackpot!  I shuffle through the figures nd I find the large spaceship that I am certain Michael will love along with the important characters.  As I dump the  items in my hand basket, my arm starts to quiver and shake.  The toys are piled up and even though I have strategically placed them in the basket they are sliding and starting to fall all over the place.  I whisk the overflowing basket with the Star Wars toys and shove the stroller to the check out aisles right next to the customer service desk where I am standing.  I wheel over and, begin dropping scattered toys on the counter.  I walk back to the customer service desk where a few items had fallen on the floor.

The cashier rings me up swiftly.  I am shaking I am so worked up.  My heart rate is racing and I can barely scribble my signature on the receipt.  Dylan is still fast asleep.  I know that I am close to victory.  So close...

As we walk outside, the ground is still wet and rainy, but there is now a tiny break in the clouds and the sun is beaming through.  The rays are directly on Dylan's face as I unload the packages into the car.  I heft him out of the stroller and place him gently in the carseat.  Like me, he is sweating uncontrollably.  I unzip his jacket and slip it off.  As I start to buckle him into his carseat, he opens his eyes and looks right at me.  He blinks away the sun with a grimace.  I fear the tantrum is coming.  But I am fine with it.  He has never been a happy child after napping.  Usually after a minute of sweetness he tantrums through is groggy fog after nap...  which is lucky these days since at least he got the nap.  This kid NEVER sleeps naps anymore.  So I will take a nap followed by a tantrum any day over no nap.

After I strap Dylan snugly into his car seat and pile the loot in the back under a blanket, I hop in the car and peer back at him.  He is angry, but still staring blankly into space.  I am shocked when I see his droopy gaze soften and then slowly blink back into a slumber.  He is asleep again as I rev the car and pull out of the parking lot.  I am stunned.  I am not getting caught afterall!!  I have accomplished the impossible.

Christmas magic.  And Sneaky Santa.

I laugh quietly and turn on Christmas music.  I am humming along with the jazzy tunes softly...  "Santa Claus is comin' to town..."  My stomach growls loudly over the music.  I realize in all my Christmas spirit, miracle Christmas shopping and brutal headcold, I have forgotten to eat lunch.

I am starving.  Minutes later, I find myself slamming a Wendy's combo meal and slugging the Biggie Coke down.  Crumbs adorn my shirt and the fizz from the soda is somehow reassuring.  I begin laughing as I look back and Dylan is still in a sweet toddler slumber.  The sunlight floods the car as he continues his long rest.

I would later have to stir Dylan and wake him up when I picked Michael up from school.  Dylan tallied a grand total of a two and a half hour nap all considered.  I couldn't have planned that if I tried.  Had I just gone home chances are he would have toddled around, played, cuddled with me and then been a disaster by bedtime.

This, well, I have no idea how I just pulled that one off.  The only explanation of the feat is a Christmas shopping miracle.  A miracle that only a mother can pull off...  filled with jittery nerves, sweat, the right touch, and a little bit of magic.  The kind of magic that only happens this time of year.

I just know Santa would be proud.  Now, next mission... to figure out how to make them go to sleep on Christmas Eve.  Where did I put that magic Elf pixie dust?  I know I laid it around somewhere...

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.

Raindrops Keep Fallin' On My Head

Merriam Webster defines "cliche" as a "trite phrase or expression".  While I can use a cliche to describe my recent days, weirdly enough the events themselves are anything but cliche.

When it rains, it pours.

We all know the expression, some of us more intimately than others.  Most certainly, there are plenty of folks that have hit tougher times than me.  I am not going to lie though.  The hits just keep on comin'.  (And yet there is another cliche).  I cringe when friends continue to say "Well, it can't get worse, can it?"  Don't even put this cliche question out in the universe.  Yes, it can get worse.  Don't even tempt the wrath of the Gods of Luck.

My car is finally repaired from the infamous birthday car accident (See blog "The Lottery") and to get my car back means a little piece of my life resumes to normalcy.  And to get this back, it requires picking up my car on the coldest day of the year.  More accurately, below zero temperatures.  Awesome, perfect conditions to switch two bulky, awkward car seats from the rental car back into my car.  No problem.  It is an engineering project that requires strategy and patience, so that both boys are safe and buckled in so that at any given point they can't dart into dangerous traffic on the busy road only yards from the body shop.  During the 20 minute arduous task, the kids are screaming and crying with a stream of clear liquid running from their little noses from the icy air.  Their sweet breaths are visible hanging in the frigid air with every emotional exhale.  Michael is yelling that Dylan is stinky.  I am just asking for the strength to get through this.  Then, I detect a messy diaper too.  So, I check in my diaper bag.  No diapers. Great, this is sooo not ideal.  I have to ditch the next stop to the grocery store, a trip for groceries and items that we need badly.  I head home with the kids sniffling and complaining the whole way home.

I throw the door open to the house, and I rush Dylan upstairs to deal with an impending diaper disaster.   I turn the corner into the kitchen, where my eyes adjust to an unexpected mess.  There are multicolored cake crumbs scattered all over my floor and stove top.  It takes a second to digest what has transpired.  The dog has snacked on a baking tin of 12 cupcakes that was sitting on my stove top.  Five cupcakes are missing in action and evidently, she ate them right out of the baking sheet.  How is this not surprising at this point?  I am laughing and crying all the while muttering naughty words under my breath while cleaning up the mess.  The kicker is that Dylan does not in fact need a diaper change.

The metaphorical thunder clouds begin to gather ominously around me.

Two mornings later, I feel a chill.  I am buried under my covers in bed Sunday morning and a coolness washes over me as I wake.  Strange, I think, since the last time I had this same sensation, a few weeks back at Christmas our heat went out.  Vividly, the memory hits me.  No heat with a house full of guests.  Hmm.  What a minute.

Wait.  Just.  A.  Minute.

I bolt out of bed before anyone else is up in the house and I say to my husband who is starting to stir, "I bet the heat is out again."  I hurry down to check the thermostat and it reads 64 degrees.  I am reeling from this thought since we just had a tech out again to replace and fix a couple things in the furnace this week.  He had advised that there is a chance we might need a new furnace altogether.  Pretty insightful.  Thanks, guy.

Late January in Chicago with no heat.  It is immediately evident that we have to leave the house for a warmer Sunday with our family.  We pack a few bags for the kids.  But it's not so simple.  Clothes.  Pajamas.  Diapers.  Socks.  Pull-ups.  Check check check.  But also Enzyme pills, vitamins, probiotic, Miralax, reflux medication...  check check check.  I tally through everything hoping that I have left nothing behind.  All this, though we are only planning to stay 24 hours away from home.  Just packing an 'overnight' bag is an absurd undertaking.

At least the rest of my day should get better.  A prospective afternoon including a gourmet bread making class and then an appointment to sample bridesmaids dresses with family.  I am looking forward to my few hours out for the sheer mental break.  Instead, Sunday shapes up to be a barrage of juggling and running against the clock.  Some enjoyable, relaxing Sunday afternoon.

After breakfast at Papa and Nonna's house (the affectionate names my boys have for my husband's parents), I head off to my culinary class.  I am exasperated and my head is spinning with stress.  Artisan breads.  Humph.  It sounds lovely.  Somehow I am trying to fit this "Aristan Breads" puzzle piece into my day's "No Furnace" puzzle.  It's not quite fitting.

A warm, gold hue fills the culinary classroom as I land in my chair.  Clean tables with neat, little glass bowls with various ingredients portioned out.  The massive viking appliances emit a gentle, calming lull throughout the kitchen.  My heartrate slows.  I focus on the bread and try to relax with friends.  The chef takes us through the 'easy' and approachable process of making bread.

"Making bread shouldn't intimidate you," the chef starts...  We have no heat in our house.

Chef jabbers on about proofing yeast...  We have no heat at the house.  It is January.  Freaking January.

"This dough doesn't own you" Chef continues as she shakes a blob of dough at us...  I glance at the ticking clock.  I have to get to the bridal shop to try on dresses.

"A sponge is a living thing.  Some bakeries have sponges that are hundreds of years old."...  I realize this class was supposed to wrap up at 3.

As the chef continues on, something about putting ice cubes in the oven to give bread a crispy crust, it is full-blown obvious now.  I am going to be late to try on dresses.  Or I am not going to get to finish the class or eat all the gourmet delights.  Wow, shocking, that I don't get to enjoy the best part of something.

The class breaks off into groups to start to make our breads.  Another mom and I are making Ciabatta with an olive tapenade.  We dive into the thoughtful process donning our aprons and flour on our hands.  Once the dough is done rising and just as it is going into the oven, I have to leave.  May I suggest for those wishing to learn the fine art of breads, don't plan on doing it in 2 hours or less.  Even if that's what the class schedule says.  I have to bolt and leave the trail of comforting, delicious smells behind.  I bid my friends good-bye and head for the door to try to make the bridesmaid dress appointment.

I am scattered, but make it on-time and we power through trying on different dresses, trading the styles back and forth.  We debate and analyze every stitch of the two favorite gowns.  After some time, we are in agreement on a couple options and head on our way.  I wish I could relax and take in all the special moments.

Some bridesmaid I'll be.  I am certain months from now, I will be chasing two screaming kids around the church during the ceremony.  I can just see it now.  Not unlike another family in recent memory wedding where Michael was the ring bearer.  My best friend had to rush him out of the church since he freaked out and started screaming "Daddy!" when my husband, the best man, left Michael's side to walk down the aisle.  My friend damaged both of her knees in the scramble.  Looking back, I feel terrible about her injuries.  She is amazing and laughs it off.  But maybe in the three decades she has been my closest friend, she has learned to expect this insanity.  As I leave the bridal salon, I would love to go crawl in bed, but clearly I have to head back to Papa and Nonna's home to our nomadic situation and troubleshoot other things.

As the week continues, we are still not in our home for any length of time since all the various remedies for the sputtering furnace are short lived. We are in between our home and my husband's parents' home with this ongoing situation.  Finally by Tuesday one of the techs explains to me as he points his flashlight on the furnace that it is done.  There is condensation dripping all throughout the electrical work of the furnace.  Shut 'er down.  We now have a full-on safety hazard on our hands.  We have no hope but to spend a cool few thousand bucks for a new furnace.

The second wave of sheeting rain starts pelting my heart, my endurance, and my spirit.

Here comes the heaviest gusts of rain...

One night Michael is sick.  Not himself at all.  He has been complaining about a stomach for a day or so and we are still staying at Papa and Nonna's house.  I lay with him on the sofa.  He is definitely not himself.  Clutching his stomach and groaning in pain.  He whimpers softly and cries out periodically for me.  I can't eat the take-out that Papa has picked up for us.  I am too upset and concerned.  We are displaced from home and now with a little boy who is clearly under the weather.  His eyes have dark circles under them, almost with a red hue.  I rub his back slowly and gently.  Back and forth.

Dylan is wandering around playing with various toys that Nonna and Papa have for the kids.  He walks over and says right in Michael's face, "Mike?  Mike?...  Mike!", showing Michael the brightly colored balls he tossing around the room.  Dylan scurries away.  Grrrrroan.  Michael is so uncomfortable.  He whispers, "You are a good Mommy.  I love you."  He gives me the sign language sign of "I love you."  Then he blows me a kiss even though I am laying right next to him.  I can barely contain my sadness.  I smile weakly at him adverting my eyes so he can't see the tears welling up.  I continue rubbing his back.

When I realize he is running a 102 fever, I leave Michael in Papa's comfort and Dylan still waddling around playing.  I slam my car door with a hurried bang and start the frigid car to go to the store for Ibuprofen.  I troll the shelves with my index finger searching for the right box.  Bingo!  I yank it off the shelf.  As I head to the check out, a Snoopy doll that plays the Peanuts song catches my eye (see Previous Blogs with Charlie Brown).  I swiftly lift if off the display.

When I arrive, Michael has fallen asleep on the couch.  He whimpers and talks in his sleep.  He is not restful.  It is getting late, but I don't want to disturb him if he is quiet and comfortable.  After I tuck Dylan into bed, I join Michael on the sofa.  He is now awake and I give him a dose of Ibuprophen to handle the fever.  Within minutes he is really upset crying to use the bathroom.  We hurry him to the bathroom just in time for him to get sick.  Only minutes later, he is playing cars and chipper like he is a new child.  Virus?  CF stomach stuff?  Who knows.  I am just thankful that for now, whatever it was has passed.  That night he falls asleep with Snoopy in his arms.

The storm re-surges.  The waves of icy rain are slamming against me.

Two mornings later, Michael feeling better, we still have no heat.  I find myself rushing out the door coffee-less with two kiddos along for the trip back to our chilly house.  Since we have nothing to do but kill time waiting for the crew to arrive to install the new furnace, I decide to run Michael on his respiratory vest.  He has started a nasty cough, clearly hasn't been feeling well, and with all the commotion between staying with family and trying to keep my head above water, the kids treatments are suffering.  This special respiratory vest is a medical device where he puts on an inflatable vest that hooks up and plugs into a machine that alters speeds, frequencies and pressures through the vest against his chest.  It is a form of airway clearance to help him break up the dangerous mucus that forms in his lungs.  A typical session takes over 30 minutes where he intermittently coughs and tries to clear his lungs.  He usually watches a favorite show or movie during his time.

I press the buttons on the machine to start his therapy and I press the final button to start the treatment.  The vest starts going and then abruptly stops.  ERROR 6.  CALL FOR SERVICE.  That's weird.  I unplug the large device sitting on our coffee table and replug it in.  Same drill, boot him up, he's ready to roll.  Press the button and the vest begins only to shut off again.  ERROR 6.  CALL FOR SERVICE.  Can't I catch a break?  And a third time I go through the drill only to be greeted by the same annoying message on the screen.  ERROR 6.  CALL FOR SERVICE.

Ok.  No heat.  No sanity.  No vest for CF treatments, too?!  I am close to cracking.

As Nonna arrives to help watch Michael and wait for the furnace crew, I leave to take Dylan to his allergist's office for testing for allergies on some specific foods.  Surprisingly, he is an angel.  He sits nicely for the uncomfortable scratch tests on his back.  Thankfully everything comes back negative and the retest for his nut and peanut allergies we decide to do with a panel of bloodwork at the boys' CF clinic tomorrow.  The appointment is relatively uneventful.  There is a word you don't hear often around here.  Uneventful.

The rain continues its torrential downpour.  I can't see through the unrelenting precipitation.

Then my phone rings.  It is Nonna informing me that there is a big problem that the furnace installers found.  The coil that sits in the furnace and connects into the air conditioning condenser is melted, completely destroyed.  It means that the new air conditioner installed two years ago is defunct and destroyed our furnace.  This news alone is defeating.  We are now replacing the furnace as a result of a problem with our new air conditioner, which is possibly a problem too.

I now realize that the melting coil has probably been burning through our house and air ducts.  Great.  Just what I need with two boys with Cystic Fibrosis.  And now I have to digest this too.  I am exhausted, juggling a thousand balls in the air, but this is almost too much.  The installer can replace the furnace and momentarily, that's all I care about.  At least, we will have heat.  And we need to resolve the bigger issues later.

As the tech wraps up the installation, we realize that the new furnace is going to emit a smoke and funky smell.  Clearly, two boys with CF shouldn't be exposed to this.  But one more thing life flings at my already-complicated life.  Nonna takes the boys back to her house as a precaution.  After the furnace installers leave and the house is starting to warm up, I leave for Nonna and Papa's where I find Nonna is making some food for the boys.  I am so thankful for their help, hospitality, and endurance.

I am certain our entire family, near and far, has truly been holding the umbrellas for us through this storm.  My mother, "Gigi" is her sweet nickname to the boys, listens to my sobbing phone calls and calming my frayed nerves.  My closest friends listen to me rant or get heated text messages from me and responding with unconditional support.  My brother texts me to check on me, "Are you alive?"  Everyone is weathering this storm with us.  In this way, we are lucky.  And we are not alone.

I sit down and start scarfing the tasty food that Nonna has made.  When I am stressed I don't eat, so I have to make sure that I do in stressful times.  As the night proceeds, we have to strategize picking up my husband's new tuxedo (which is getting alterations), packing up our belongings, medications, and all, and getting the already exhausted boys home and in bed.

The week has been taxing only to stumble into our home, where it is FINALLY warm.  I have become all too thoughtful in the recent days of those who are homeless or in conditions where they have no heat.  In the bitter Midwest cold, heat is not a luxury, but a necessity.  I am thankful as we bound through the door to our home and the blast of warmth hits us.  My husband and I hurry the boys to bed and completely fatigued, I too collapse into the comfort of my bed that I have missed so much this week.

The clouds begin to dissipate.  And in some form, the rain passes.

At least until tomorrow when the coming clouds reappear.

Because the rain clouds always roll back in.

Until the next storm, I hope for a ray of sunshine.