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.

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.

Houdini and Oz

Houdini was a magician.  An escapologist.  A stunt performer.  An aviator.  A near contortionist.  An illusionist.  He was someone who very deliberately would hide in the shadows and darkness to bring forth an impossible stunt.

Ironically, Houdini was also a skeptic.  He sought to expose those who were frauds and those who preyed upon people's hopes and wishes with loved ones believed to be in the spiritual world.  And with this, Houdini brought many things to light.

In so many ways, my boys are little Houdinis.

I wake up and dart out of bed, scrambling to actually squeeze in a hot shower before the day gets going.  It's been a storm of a week, last night being the first in days we are able to sleep at home with a working furnace.  And now the very first morning waking in our own beds we are having to run out the door to deal with the stresses of CF clinic.

I pack a bag with some snacks and load the kids in their car seats still in their pajamas and head out the door.  Sun pouring into the windshield I route my best course against miserable Chicagoland traffic and so that I can stop for a reliable, hot cup of coffee and a take-out breakfast for the kids to eat during the lengthy clinic.

When we arrive, it is a full-waiting area at the CF clinic.  This is highly unusual as the staff is extraordinarily diligent about getting CF kids ushered into their rooms quickly.  This is because individuals with CF can host dangerous germs and in theory pass on those germs to others who are vulnerable (like fellow CFers).  I am struggling to juggle everything like the bags, the breakfast, and my two little brutes.  I don't want them running around the other kids in the waiting room, some of whom have paper masks covering their noses and mouths, some without.  As I contemplate how I am going to grab the two paper masks to put on Michael and Dylan, I see our nurse.  And SIGH OF RELIEF.  She escorts us back to our exam room.  My husband's brother, "Uncle T", is stopping in this clinic to help give me a hand.  Let's be honest, this is not a one-person job.

After wrapping up the paperwork with the front office staff, we get the boys settled with their food.  A bagel slathered in stawberry cream cheese, donut holes, a breakfast sandwich oozing with cheese and salty ham all for the boys and a coffee for me.  Cream only.

The battle begins earlier than normal at this clinic visit.  The first few minutes are always spent getting the boys' vital signs...  height...  weight...  pulse ox (oxygen levels in the blood)...  temperature...  blood pressure.  Normally a breeze.  But not today.  Michael and Dylan are having no part of this visit.  Everything is a test in patience with them.  Dylan is bull-headedly focused on eating and Michael is determined to argue his way out of everything we ask.  My own blood pressure is rising.  Maybe they need to hook one of those machines up and check me.

Only after a "Child Life" Associate comes with toys and bubbles to visit our room, does the mood change a bit.  I toss the strewn pieces of donut holes left behind and the remaining crumbs of Dylan's sandwich in the garbage.  I look down and see Michael's bagel with one petite bite taken out.  His breakfast is virtually untouched.

Our favorite nurse breezes in and busts out laughing.  She always knows that our family brings a lot of, er, energy to our visits.  All the staff can usually do with us is throw their hands up and, well, laugh.  I share with her how the heat has been out at home, how we've been staying with family, and how it's been a 'run-and-gun' life in recent weeks.  Then we start discussing the boys' health.  "Let's start with Michael since we are already chatting about him..."

I begin to explain that he has had more severe belly aches in recent weeks and some troubling potty issues.  "Yeah, we'll talk about that," she says casually.  "Michael has lost weight."  She coolly focuses on the computer as she makes the statement.  I know she is doing her best not to set off my insane mom alarm.

I am stunned.  I have taken a slug to my stomach and the room closes in around me.

The commotion around me fades.  So does the chatter and the boys' hysterics about bubbles.
I can no longer hear the muffled voices in the hallway.

The world stops.  And for once in my life, I am speechless.

MICHAEL LOST WEIGHT?

No, no, no.
Not my boys.
Not possible.

I don't know if you realize, they are different.  THEY ARE DIFFERENT.  These two little boys are different.  We're the exception.  They are different!  These boys defy the odds.  I want to scream.

We are the weird CF family to the rest of the world.  And we are the weird family within the CF world because our kids don't have problems with weight.  They are different in every way.  These boys defy the odds.  Don't you know?  Not possible.

They.  Just.  Don't.  LOSE.  Weight.

I shift uncomfortably where I am sitting and take a long, almost painful swig of my coffee.  I let my inner hysteria happen.  But I work to stay composed on the outside.  I straighten my posture tensing all my muscles awaiting the impact of the coming conversation.

"He grew over an inch and lost over a pound," she explains.  I do the math in my head.  His weight went from an astounding 87% BMI last time to 42% BMI today.  It's been only two months since our last visit.  We discuss how something is up with Michael and we dissect what is going on.  We cover all aspects of his medications, his belly, and his cough.  When I wrap up with her, she gives me a look of warmth.  She knows I am freaking out.  It will be okay, she tells me with no spoken words.  All in one look.

I spend some time next with the Nutritionist.  She explains how incredibly important the growth in his height is.  It is really GOOD that he is growing taller.  We begin to address Michael's chronic stomach aches along with the weight loss.  It becomes all too real.  His belly aches were a bigtime symptom that his meds were off and they will be adjusting the enzyme pills he takes every time he eats.  On all accounts everyone believes he is malabsorbing his food.

Basically, imagine eating a meal and afterward your have a miserable stomach ache.  Some, not all, but only some of the nutrients and fuel are absorbed.  Your body cannot process or digest all the nourishment it's taking in because it doesn't have the right tools.  Then you feel a wretched stomach ache.  You feel this way after every time you eat.   You begin losing weight since your body doesn't get all the good stuff out of the food you are eating.  And because you no longer have an appetite because your stomach hurts, you don't eat.  Your body begins losing precious calories and you aren't putting enough back in to refuel.  That is what has been going on with Michael.

No wonder he has had a stomach ache.  No wonder.  I am sick.  I feel my own stomach take a turn.

We discuss new medications for Michael.  New ways to add calories.  New foods to make.  I am starting to feel this ugly disease creep into my already insane brain.  It's almost too much to handle.

As I wrap up with the Nutitionist, someone cracks the door open to give me a message.  That's when the escape happens.  Out the door like a flash, Dylan is gone.  He has disappeared into the hallways of the Children's Hospital Building.  I dart out of the room chasing after him.  He passes all the exam rooms and is all out laughing at me.  Dylan has no mask on, because clearly there is no time for a mask during a great escape and, oh by the way, it's way too appropriate for a CF clinic and waiting room.  He loves the chase.  I am not anywhere close to grabbing him when he jukes to the right, then a hard left, and heads out into the bustling waiting area again.  His little legs are a flurry, he turns left and starts to head to toward the front of the building where we entered.

I am in good shape, but this kid is FAST.  I actually have a momentary glimmer of promise to catch him.  I thrust my arms forward with all my force and yank him back into my arms.  I am able to grab and scoop him up.  All the while he is laughing at his stunt and kicking his legs hurriedly in my arms.  Oh Lord, Dylan is going to be the death of me.

I am panting as I retrace our path back to our exam room.  As we walk past, other parents and clinicians are snickering having witnessed Dylan's sprint performance.  I am just glad that he didn't make it outside and get on the tollway, which with his speed, is completely possible.

Just as I near our exam room, a door cracks open from across the hall.  One of our good friends whose son also has CF happens to be at clinic this morning.  He pops his head out the door of their room and grins.  "Hey, you wanna ride down to the gala tonight?"  Catching my breath, I respond, "That would be great."  The door closes, and I head back into our room with my little Houdini in tow.

The boys' physician with whom we have a great relationship with and I trust both professionally and personally walks into the room.  She takes one look at me and says, "You're going to need some good concealer tonight, honey."  It's just been that kind of week.  It's written across my face.  My dark mood and lack of rest is exceedingly obvious, especially without a stitch of make up.  Clearly, she is trying to lighten the mood.  We both laugh, discuss the gala which she will also be attending, and we agree that cosmetics are the easy solution to an easy problem.  We move forward to talking about the more complicated problems around the disease I hate.

Nearly four hours start to finish and after a battery of blood work and chest x-rays , we are finally packed into the car heading home.  Both boys  immediately are passed out asleep.  They are drained.  And so am I.  But I have to get ready for this gala tonight.  The next hours I spend trying to navigate nail painting, CF breathing treatments, feeding the kids, applying make up, cleaning up dog puke, and getting out the door.

As I ride into the beautiful city of Chicago with my friends and I tell them about the snags we have had in recent weeks the response is, "What are you doing in our car?  You are a bad luck charm."  We all bust out laughing.  I really need to have some fun tonight and to take the edge off the upsetting news about Michael's weight and the stress from having no heat this week.  Then my phone rings.

"I don't have my tuxedo shirt buttons.  They are at home.  What should I do?"

Seriously???  This can't be happening.  My husband is getting dressed for the gala at his office and has no buttons for his shirt.  I am not surprised.  It's just the way of my world.  He decides to McGyver his shirt together with some engineering of binder clips.  One his tie and vest are on they inconspicuously hide the lack of buttons on his shirt.  Talk about an illusion.  Guess you can call my son Houdini and my husband Copperfield.

The regal event is a fundraiser for Cystic Fibrosis where esteemed chefs from all over come and create tasty delicacies.  It is a black tie affair and I am really looking forward to tonight.  There is a lengthy cocktail hour with delights to satisfy the utmost foodies in the room, a full dinner and plenty of fundraising efforts with a silent and live auction with the proceeds going to the CF Foundation.  Finally, along with awards for the preferred chefs of the evening voted by the gala's attendees, they also present the "Bid for a Cure" where attendees can bid during a live auction to make a donation.  Our family as well as the others seated at our table are highlighted in the special video production that is aired before they start the bidding.

The theme of the spectacular evening is "The Emerald City".  There's no place like home, there's no place like home.  You and me both, Dorothy.

The evening overflows with fun and positivity.  However, the reason we are all gathered together does not go unnoticed.  My best friend is working the event because she is a charitable soul.  A lifelong friend.  Someone who is in the trenches with our family.  Someone who wants the cure as badly for her sweet Godson as much as we do.  And I love her for this.  Completely selfless, she is one in a million.

We spend time with the other families who have kids with CF too.  We have grown close to a special few of these families over the years.  We are each others support.  They are the friends who, well, 'get it' when no one else really does.  We talk about CF treatments, endless medications, balancing life and disease, and fundraising together.  We cry together and we collectively see the light on the horizon together.  We stand arm in arm in this battle against CF for our children.

We mingle with such remarkable adults living with CF who inspire me every step of the way.  Their valiant fights leave me hopeful and their undying optimism humbles me.  I am almost nervous in their presence because I so admire these amazing individuals.

There are the volunteers and employees of the Cystic Fibrosis Foundation who are working tirelessly to raise money that supports a cure.  They serve up a lovely evening filled with food, fun, and whimsy.  Most importantly, they overachieve on a night of fundraising to find a cure.

The night is filled with hope, love, and good things.  I make new connections, rekindle old ones, and smile all along the way.  But there are moments in the evening, lulls, where my heart aches.  The disease lingers.  I can now relate to the 'weight maintenance' conversations around the room.  I can also share our "hospital story", since most everyone has one.

I most want to pull back that curtain and understand all of why this terrible disease destroys so much.  It was simply a man behind a curtain operating levers and buttons in Oz, I want to understand how a minuscule malfunctioning protein can produce such grandiose effects with CF.  I want to pull back that curtain and see the dark places, the light hope and every single shadow in between.  I want nothing more than to know everything I must to care for my sweet angels.

I am so overwhelmed with the day, it's ironic that at such an elitist food event, I can't bring myself to really eat.  Seriously, it's not the Spanx under my dress holding my belly in either.  It's the adrenaline pumping from the early morning hours of clinic visit, to the stresses that weigh on my heart about Michael, to the giddiness of arriving at the gala, to the airing of the video and seeing my sad self on all the giant screens in the banquet hall.  It's also the true sorrow in my stomach for the reason we even gather tonight with all of these amazing folks.  I just can't eat.  It's just too much.

I would pay later for my surging emotions, too much red wine, and no food in my stomach as I politely ask the limo driver to pull our stretch limo over off the tollway so I can get sick properly on the side of the road.  Completely classy, I realize this.  And still in my designer gown and heels of course.

What's life without adventure?  What's life without the unexpected formal-ware purge?  What's life without an escape attempt with my Houdini every so often?  What's life without a little challenge even if it is a weight gain challenge?

There would be no stunts at which to marvel and no flair to keep our interest.
There would be no darks, no lights, and no shadows.
There would be no mystery, no adventure, no intrigue, no applause, and no thrills.
There would be no wonderment, and most of all,
there would be no journey. 

If all shall be revealed, then what's the point?

Apparently, the Wizard in the Emerald City and Harry Houdini were both on to something really grand.

Putting on the holiday pounds

I have a profound respect for fat babies.  Truly.

In a way that very few moms do.  Sure fat babies are cute.  Everyone loves them.  With the Stay Puffed Marshmallow Man arms.  The chunky monkey thighs.  The tubby bellies.  But my respect runs far deeper than that.

Clearly, I am not endorsing obesity...  no, no.  It's not right for everyone.  And, let's be honest, it's the holidays.  We are all overindulging and will pay for it at the gym later in January.  (Groan)

Let me adjust the lens a bit.  Many individuals with CF have trouble maintaining a healthy weight.  And many CF clinicians believe that there is a correlation between nutritional status and lung health.  It goes for anybody... you eat well, you are well.  So to speak.  It's a little more intense with CF hanging around.  While their are different schools of thought on the matter, the directive is clear.  HIGH CALORIE, HIGH PROTEIN, HIGH SODIUM DIET.

As the rest of the world deals with the run-and-gun of the holidays... the fast-food shopping meals, the extra slice of pumpkin pie, the creamy egg nog, and the Christmas candy galore.  Before you know it, the skinny jeans are, well, extra skinny jeans.

How about a 600-calorie shake with Haagen Daas ice cream?  I can't even fathom drinking one.  These are encouraged for my kids.  We live in a totally different world.  I am always trying to figure out, "how can I add calories to that?" if it's something my kids like.  The cookie eating binges are legendary in our house.

Today on the way to a friend's house, in the car, the boys are chowing dried fruit.  Eating handfuls of it... instead of content that my kids are enjoying a natural, healthy snack, instead I wonder, what can I do to these to make these even higher calorie?

Basically, someone with CF often doesn't fully absorb all the calories their body needs.  But on top of that, they are burning calories at a greater rate because of continuous inflammation in the lungs and always warding off infection.  The body just isn't getting enough fuel and is always burning through it at warp speed.  My boys will some day need calories like Michael Phelps.  No joke.  We know many individuals with a g-tube (a gastrointestinal or 'feeding' tube so calories can be put directly into the stomach, often while the person is sleeping) is a reality.  Literally, some kids just don't get enough calories in during the waking hours, so they get calories while they sleep.

At plenty of tables across America, moms are focused on what their kids eat.  What types of foods are their children eating?  How much are they eating?  How can they eliminate sugar or sodium?  And we all know there are rules with eating with families... the "clean your plate" rule.  Or the "no thank you" bite.  Or mine was growing up, one glass of milk before anything else to drink at meals.

But my brain is re-calibrated.  I think of food differently (which, believe me, is not good for my own waistline).  Some recent examples...  I wonder if I can add half-and-half to that?  I can melt butter on that, and he'd never know.  I can spread butter *under* the cream cheese.  Honey, do you want to dip that in Cool Whip?  Do you want another custard yogurt?  Do you want a second avocado?

Leading up to Michael's hospitalization in early November, he isn't eating.  For a kid that has always been an eater, he isn't eating.  At a doctor's visit, they warn me that my son, who was a massive bowling ball of baby two years ago, has a growth chart that was now considered 'AT-RISK'.  It is the first time I hear these words.  Nutritional status.  At risk?

Okay, fair enough, he is a preschooler.  All kids his age go through eating jags.  But THIS IS DIFFERENT.  And before long, we learn how SICK he really is... and he is admitted to the hospital because of the dangerous lurking junk clogging his airways and the Staph infection doing its dirty work.  It is now evident why he isn't eating.

He barely eats in the hospital.  He barely eats the few days we got home and started the IV's at home.  He.  just.  isn't.  eating.  Not that I am paying attention anyway.

Once the medications and his little immune system aggressively start waging war on the Staph, it takes some time for the pink to return to his fair cheeks.  For the dark circles to disappear from under his eyes.  About five days after discharge from the hospital, Michael starts asking to eat.  Asking for snacks.  Asking when dinner will be ready.  Asking for another yogurt.  Another handful of chips.  Whatever it is, I am delighted that he is interested in food and I hear him ask for more.

So, as I amping up for this clinic visit, I keep thinking about how this all translates to his weight.  And what it means for his cough that blasts him first thing he wakes up.  Basically, clinic is a very lengthy, highly complicated "check-up".  I am quite sure that our CF Care Team braces itself when we descend on our clinic appointment, and takes a deep, wild sigh once we walk out the doors.  It is three long hours of dizzying information, my toddlers scaling the walls, and an exercise in patience that I can't even really do justice.  A glimpse is that Dylan punches the pulmonologist.  Twice.  Nice.  Real nice.

But it is an opportunity to review with a crew of caregivers who we almost consider family.  Review my kids' coughs, review their growth charts, review the medications and dosing, and review my sanity.  However, the last part couldn't even be confirmed as present during the visit.

This year, putting on some pounds at the holidays has a very different meaning.  Inside, my emotions are nervous, almost frantic...  And then the good news.  Michael for the first time in six months, gained about a half pound.  Oh the happiness!  And Dylan, I am proud to say is in scientific terms a big, ol' meatball.

While there is a lot more of the fallout from our clinic visit, this is wonderful news.

Ahh... the holidays.  A time for gathering.  A time for joy.  A time for gifts.  AND A TIME FOR FOOD.

And this Christmas, when you see that pudgy little baby at your family gathering, or you take an extra handful of chocolate sweets, please, smile for me.

Michael says to me today, "I want marshmawoahs."
I reply, "Marshmallows?"
Thoughtfully, looking up and nodding he responds, "Yes, I think we should ask Santa for marshmawoahs."

Now, if only can Santa figure out a way to add extra calories to marshmallows...  Hmmm...