Monday, November 11, 2013


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.