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.

Tuesday, September 10, 2013

The Lasts.

The east coast spring isn't at all a nice one.  The April showers spill over into May's flowers and June's sunshine.  The days are best described as chilly and gloomy.  I wonder if the hard shift of summer will ever come with the steamy hot and sunny days.

We preoccupy our days with spring soccer.  Trips to play with friends.  There is coughing and antibiotics.  There are tulips and deer out at dusk.  And the looming reality that our lives are going to get a bit more complicated with our move back to our hometown of Chicago.

As the days continue to grow longer, our time seems to grow shorter.

Then the 'lasts' begin to creep in.  The 'lasts' have me emotional.  Knots in my stomach and confusion in my brain.  When we moved here it was all about the firsts, which were rather messy.  The first park.  The first friend.  The first trip to the new CF doctor.  The first snow.  The first rain.  The first trip to the grocery store.  And so many other firsts that have faded.  I remember feeling more often than not like a drunk, blind person bumbling around in a foreign east coast land with a Chicago accent.  Yep, that was me.

And now here I am with my mind swirling around the last moments enjoying the place we have called home for the past two years.  When did the firsts become the last?  When did this all change?  I can't quite pinpoint the monumental life shift for our family.  Somewhere along the lines of living our lives, it happened.  The lasts.

My lovely last run in our neighborhood remember where I once saw a deer and her two fawn crossing neighborhood streets...

The last time I sit in my favorite salon, my oasis, my hair covered in foils smelling of chemical therapy...

The last time at the sweet little gem of a pool where deer softly pace between yards and children laugh frolicking in the water or play tag in the grass...

The last time I will shop at our neighborhood grocery store navigating the aisles without a thought...

The last time that I will sit on our expansive back porch with a glass of wine in my hand and watch the boys play some remarkable adventure carelessly in our back yard on the swing set...

The last trip to the shore where our family spent Father's Days and Mother's Days and just sunny fun days...

The last time at our favorite pizza joint for their coveted "Penne Vodka Pie"...

The last delivery of medical equipment only two days prior to all the boxes being packed up and our lives rushing forward... 

The lasts.  They are never easy, especially when they are explicitly, well -- the last.  When you know it, your heart aches a bit.

I even find myself in near tears standing in the diaper aisle in Target realizing this is the last time in *this* Target.  Not at a Target ever, just our Target in New Jersey.   I am pathetic puddle staring at the baby soaps looking for the right Aveeno bottle that the boys use at bath time.  It was this very aisle that Dylan suddenly stood up abruptly in the cart and flipped out hitting his head on the tile.  It was a few aisles over that they threw countless temper tantrums over toys like Angry Bird Star Wars sets and LEGO building kits.  I remember the time that I was incorrectly diagnosed as a prediatbetic (which was a major misdiagnosis), but I still remember standing motionless for some time minutes staring at boxes of testing meters and strips.  All in *this* Target.

With our frequent trips to Target we sought the comfort in the smell of new merchandise.  The familiar fluorescent lighting.  The mundane shopping aisles.

Target was reassuring to us when we landed in an unfamiliar land.  And now it is reassuring to us as our place for all things life.

Over the last two years, this became our Target.

Inertia of thought.  For a long moment, I can't believe that things are about to change.

The Walgreens staff are sad to see us go because of our regular trips to their drive-thru window for antibiotics and medications.  We know them on a first name basis.  Connie and Mike were the smiles when I was bonkers and the kids didn't feel good.

The pediatrician's office around the corner was a miracle of luck for us with one of the best pediatricians we have ever known.

The preschool staff became our community.

The elementary school nurse, Michael's teacher and principal are tearful good-byes.

And we are most heartbroken to leave our closest friends who truly became our New Jersey family, our friends who we weathered many storms with together -- the metaphorical ones and the real ones (enter Hurricane Sandy).

This became our home.  We made this our home for two years.

Somehow, some way, our family navigated the uncharted waters of life on the east coast and we not only became settled, but we became sort of comfortable.  We found ourselves quiet and happy.  Always juggling of course, but miraculously we found our way.

Upon our arrival I viewed our new adventure as a means of possibilities.  Figuring things out.  What about the schools?  What about the sports and activities?  What about the doctors, the CF Team, and the pulmonologist?  I didn't even know where to begin.

And now with every moment, I reflect on a next last.

As I sit in the final moments on that back porch listening to rushing cars driving off to NYC, I take a long drawn sip of red wine.  I recross my feet propped up on another chair as the boys battle it out on the playset.  I look over at the dog, healing from her recent injury, as she smiles a dog smile and basks in the sunshine of the porch.  I sigh deeply knowing that I can't decide if the lasts are good or bad, joyful or sad.

I can't decide but I realize that one thing is certain -- without the lasts, we would never have the beautiful new firsts.

Monday, June 17, 2013

Nose bleed.

As if we don't have enough to juggle, April would bring another unfortunate unexplained injury to our family.  Our doggy tore her doggy ACL.  Yeah, I didn't know that dogs even had ACL's...  really the only association or context I ever had of it, was hearing a famous athlete injuring his ACL.  But our lovable labrador is a really active retiree of athletics.  She is in her 50's (in dog years of course) and is going gray (she has asked me for the number of a good colorist), so it never even occurred to me playing leisurely fetch in the yard one sunny afternoon would go down the history books the demise of her doggy sports career because of her torn Acute Cruciate Ligament.  Whatever that means.  Some ridiculous surgery and vet bill later, we had our pathetic pup hopping around with a massive cone on her head running into walls and refusing to eat.

I am not good with surgery.

Or blood.

With animals.

 Or with people.

So the whole experience of having two boys with CF throws me into a really messed up rollercoaster ride some times.  The blood draws.  The tests.  The explaining the complexities of the disease to a children so they can learn about it themselves.  It ain't easy for me.

I am good at yelling at the mail order pharmacy or the medical equipment idiots.  I am great at putting together our regimen and getting the boys to adhere to it.  I am good at understanding the science and the research.  But for the life of me, I just am not good with some of the boo-boo's and the band-aids that have invaded our lives with CF.  I guess, honestly, explaining an Acute Cruciate Ligament surgery to the dog is probably one of the easiest things that I could do in a day.

One spring morning, my husband and I are groggy and disheveled hearing Michael enter our bedroom and ask, "What is this brown stuff all over my face, Mommy?"  I look at Michael's confused expression as he swirls his finger around his whole face.

Oh.  My.  God.

If he weren't walking and talking, I probably would've called 9-1-1.  My sweet little boy is covered - COVERED - in crusty brown blood.  I could swear through my morning haze there is either is a really unfunny joke going on or it is a scene right out of horror show.  Probably the latter based on the survey of things.

I dart out of bed and grab Michael's face in my hands.  I poke and prod trying to find the starting point of all this mess.  He is loopy since he's still tired and not fully awake and making annoyed expressions as I tug on his skin and shift his head around in all angles.  I haul him quickly into the bathroom and start wiping the blood away with a warm washcloth.  The darker, dried blood all over his forehead, his cheeks, and his chin.  It isn't until I find fresh blood in both nostrils that I realize that it is a nosebleed.

My mind starts racing...  what could it be?!...  humph...  a nasal polyp?...  inflammation in his sinuses?...  is the Pseudemonas infection in his sinuses that is causing the bleeding?...  yesterday morning, I wiped some blood from his nose at breakfast...  agh!  THIS IS WORSE...  and now two mornings in a row.  WTH?!...  Do we do his CF treatments?...  Was this a result of last night's CF treatments?...


Then my rational side (yes, stop laughing, albeit delayed, there is in fact a rational side) quells the chatter with one simple statement. 

Everyone gets nosebleeds.

Yes... but CF.  There is so much more...  to think about...  polyps...  infection...  nebulized antibiotics...  and blood!!!...  my...  brain...  hurts...  running...  all...  the...  scenarios...

But everybody gets a nosebleed some time in their life.

I frantically get him cleaned up.  He is self-conscious and doesn't want to go to school for fear of his nose starting to bleed in class.  I don't even think before picking up the phone and dialing the school's absentee line and calling Michael in sick.  Then reality sets in...  When I explain that he won't be able to attend a friend's birthday party this afternoon since he is missing school, he changes his tune and decides he really wants to go to school.  I am uneasy about it, but agree that it's the best thing.

Later that morning, I speak with the school nurse to let her know the situation.  She gives me some comfort.  "You know, it just could be New Jersey."  She lets out a relaxed laugh.  I love her, because she is a great resource and helps me feel comfortable each day that Michael is in good hands at school.  "This time of year, quite a few kids come into my office with nosebleeds...  often just the irritants and allergies flying around."  My tension fades a bit after hearing the nurse's candor.  Soon aftewards, a cross-check phone conversation with the pediatrician who suggests adding a little allergy medication into Michael's daily drill would help, my blood pressure has finally dropped to normal since my initial morning heart attack.

It is days later as I peer into my cold cup of coffee and glance back at the clock.  I need to get moving if we are going to make it to Michael's school in time.    Dylan watches some morning TV as I primp trying to achieve a "very PTA mom" look for the big Super Kids Program at Michael's school.  I watch the clock closely as I swipe on my many coats of mascara.

The three Kindergarten classes have worked hard and rehearsed the production, which is a compilation of characters and stories from the year-long reading program culminating on stage this morning.  There are certain to be delightful songs, which Michael has practiced again and again (most notably in the bathroom at the TOP of his lungs).  There will be choreography that he has explained to me very seriously ("Mommy, there are signs and on the word 'feet', we pull the signs down").  And there is Michael's palpable excitement of a stage show and all it's logistics...  "I have three important jobs.  But I am not speaking in the microphone.  Some kids are, but I am not."  Michael shrugs as he often does when he explains things with deftness.

Dylan and I head out of the house and hop into the car on the gloomy and muggy morning.  A-Ha!  I am pleased that we have given ourselves plenty of time.  30 minutes out the door, arrive with 25 minutes to walk in and get a seat.  BOYYYYY, was I wrong.  When we arrive, there is no parking in the school lot or on the immediate street.  I snort in my head, possibly even out loud, knowing that we have park on an adjacent street and walk some distance to the school.  With a four year old.  When the skies are ready to unload torrential rain.  At any moment.

I practically tug Dylan the whole way, WILLING him to walk faster.  When we finally arrive in the school, I realize I am covered in sweat and Dylan is exhuasted.  We politely take the program that a Kindergarten student is handing out to incoming families.  And BAM!  As we enter the gym, the THICK humidity slams into me like walking into a brick wall.  Grrrrrreat.  My boys tend to sweat more than other kids.  They tend to dehydrate faster than other kids.  And Michael insisted on wearing his character's costume without edit...  he had to wear the jeans and the long-sleeve hoodie shirt.  It is the perfect storm.

Dylan and I collapse into the additional row of seating that the school's janitor has been setting up.  Actually, the last row of seating.  Funny, how I always end up with the nosebleed seats.  I am just happy to have made it and to be seeing Michael's Kindergarten stage production.  I know just how proud he is and what a HUGE deal this is for him.

The music cues up and the lights hit the stage.  The curtains pull back and there almost in the near center is Michael.  He is wiping sweat off his forehead and already looks exhausted from the heat, but he sings happily even merrily gesturing along with the other children.  The lovable voices floating through the dense humidity in the gym seem to lighten the air.  They waft into the rafters and become a rainbow of audible joy.  I try to enjoy every minute and take in all the moments.  Dylan is restless with the heat and I scurry from my way-off seat up the aisle to get a little closer for a few a pictures.

Just then, Michael spots me and we lock eyes.  Through my worry and my juggling, I am instantly put at ease.  He grins at me and waves.  He doesn't care that he is not singing along at this very second or of that he is not doing the motions.  He just wants me to see him.  His beaming expression is like none I have seen from him -- ever.  He is thrilled that I am there.  I know that this moment is locked in my heart forever.  My eyes well with tears and I couldn't be prouder.  Super Kids indeed.

Yeah, I'll think I'll take a seat in the nosebleed section any day.

Monday, April 8, 2013

Mismatched Socks.

It's something that adults take for granted.  Most kids too.  But lately around here it's a foreign concept.

Matching socks.

I saw this on Pinterest recently and it completely captured my stance on laundry.  And life.

And lately, it's become most apparent in the sock drawers around here.  Desolate, empty, echoing drawers that are unused.  Instead our socks lay in piles amongst three alternating baskets that I just shove around to find a pair for each kid as we are running out the door.  Oh joy.  The pride of the run-and-gun mommy.

But the truth is my kids' (and my own for that matter) mismatched socks gave me perspective.  No, no, not that I am trying to keep up.  And not that I am certifiably crazy.  But of solving problems.

I watch Dylan and how he plays.  He is a creative mind, constantly reinventing, reconfiguring, recalibrating.  He collects rocks and sees them as beautiful.  A filthy crumbly parking lot rock has all the beauty in the world.  A pebble on the shore is a treasure.

He collects googly eyeballs that most kiddos glue on a school project.  He keeps them in a paper cup.

After Michael has built Dylan his LEGO set, Dylan deconstructs it and rebuilds it into his own creation.  He is constantly solving new problems and seeing them in a new light.

I have lost this ability in my life and it has been miraculous to watch Dylan on a rainy morning playing with some toys and some random items out of my junk drawer in the kitchen.  He is a creative thinker.  And in the process, been a one-boy wrecking ball in my home.

Things are no longer organized.  Blocks stacked up with pencils and pebbles.  Clothespins that have been taken apart on my kitchen counter.  My kitchen sink covered in water where Dylan has explored all of water's qualities.  Beads to my a broken bracelet of mine in an Altoids box and a sock bulging with pebbles.  There is stuff everywhere -- no longer with rhyme or reason.  I aim for "tidy" these days.

As a result, we have all begun to accept the mismatched socks.  Michael no longer complains in his perfectionist, exasperated almost annoyed tone.  He has accepted that we are lucky to get two socks on his feet in the morning when he is out the door to school after two hours of scrambling for treatments, breakfast, getting dressed, confirming homework and library books are in the backpack amongst other morning drama.  Dylan could care less...  or rather he doesn't even notice.

And one day recently, it occurred to me...  The mismatched socks are simply a new solution.  Kiddies need warm and protected feet.  Two halves equal a whole.  Two socks make a pair.  Who ever said we have to conform anyway?  And frankly, the goal is keep those sweet tootsies safe.  It's no longer about overachieving.  And let's be honest, I have lowered my standards.  Or just maybe looked at life like Dylan...  with a unique and different perspective.  With a solution.

After the hustle and bustle of Easter morning, there are chocolate egg foils scattered about on our kitchen table, colorful jellybeans spilled and cascade onto the floor, and paper grass all over the house.  I sigh, and clean it up.  Our favorite Honey Baked Ham is warming in the oven and I am getting the sweet Balsamic Honey glaze ready for the carrots.  The boys have not only loosened their plaid prep ties from Easter Mass, but they have entirely discarded them as well as the dress shirts.  They sit and play in the family room with their white undershirts and khaki pants as their play uniforms.  I smile as I sip a pre-emptive Summer Shandy, wishful for the warm breeze of spring to arrive.

The boys were good at Mass, which was a feat.  Michael sat bullishly flipping through the Bible and looking up at the sunlight pouring through the church.  Dylan wiggled a lot and announced in a loud, hoarse whisper that "We have been here for HOURS, Daddy.  How much longer....?"  It had been twenty minutes.  But it was receiving Communion that was the most impressive.  Our boys were not only interested but happy to join us giving the priest a high-five.  When we sit back down and kneel, Michael tells me that when the joyous priest told him "Bless you" he responded with "Bless you" to the Father.  I laughed.  Then Dylan proclaims that he must say hello to the priest.  We calm him down and tell him that when we leave church we will find him so he could give him a proper greeting.  For Dylan, his Easter experience would not be compete with out it.

My husband and I give a sigh of relief as we leave church that we survived with our boys -- Michael, the pensive, arguer and Dylan the one-kid wrecking ball.  We say a happy hello and thank you and "Happy Easter" to the priest as we exit.  The Father responds cheerfully...  Dylan is satisfied.

I watch the boys play in the warm light of the family room.  Within minutes we are seated around our table with all the Easter goods.  As we munch and discuss our Easter blessings and the value of having a good heart in life, Dylan states loudly, "Mommy, that looks like a volcano."  I ask him what exactly he is looking at and he points to the bundled tulips in a clear cylinder vase.  Volcano?  I question him.  And he confirms, "Yes, a volcano."  I am in awe.  How does he see a volcano from prim yellow, red and pink tulips.  I sit and stare for a long time at the flowers trying to see what he is seeing.  I smile when I realize he is looking at the red streaks that form a slight pyramid in the yellow tulips.  A volcano.  At least that's what I think he is referring to.

Monday morning greets us and it's back to school and the sunshine finally breaks the gray gloom of March sedation.  Dylan and I are driving in the car.  "Mommy, four and five makes nine," he announces.  His statement is a regurgitation of Michael's math work in Kindergarten.  "Yes," I respond.  "It is.  You are a very smart little boy, Dylan."

He replies, "No, I am clever."  He lingers on the "rrrrr" sound at the end.  And I laugh knowing that this kid really is.

I drop him off at school and head to the gym.  The treadmill is a good place for me to think.  My mental clarity kicks in with the hum and rhythm When I am running 6 mph on a treadmill.  I hurry into the gym knowing I have only a short time to knock out some good time.  As I settle up at a locker and unwind my earphones, I kick off my flip flops and grab my running kicks out of my bag.  I dig around my wallet... my awkward planner...  my make up bag...  I am searching for my socks.  "Ugh.  I know I put them in here somewhere."  Yank.  I pull them out.  As I turn out the pair to put them on...  I notice.  One sock with pink stripes and one sock with purple stripes.

Clever.  Well, at least they both have stripes.

Tuesday, March 12, 2013


The gloomy days of late winter put me in a foul mood.  I just can't peak out from under the blanket of gray that covers everything these days.  And while it is a very chic Benjamin Moore paint swatch, it isn't the color I want outside my kitchen window day after day.

Michael's ongoing fight against Pseudemonas lingers.  After he wraps his 28-day cycle of inhaled antibiotics and 14-day flight of oral antibiotics we find ourselves in February.  And ready for to have him "recultured" to see what might be lurking in the recesses of the tiny airways of his lungs.  And the positive culture, slaps us in the face and confirms that we must continue additional therapies to control the lung infection.

Then, Michael gets sick on top of his positive culture.  The afternoon before his special Valentine's Day party, he complains that his ear hurts.  Our pediatrician whisks us in and confirms a raging, pussing ear infection.  Groan.  Aaaaand back on oral antibiotics on top of the inhaled antibiotics.   My only relief is that we catch it and start treating it quickly so that he is able to enjoy his school's Valentine's exchange.  Two years ago, he wasn't so fortunate.  The smothering weight of that ugly winter blanket sits on top of me.  A big heap of blah.

Somewhere under the blah, Valentine's Day comes and goes with lots of adorable red construction paper heart projects from Kindergarten and preschool.  The many ways our boys tell us that they love us.  My favorite expression of love is one of the many times Dylan asks the question, "Mommy, you know how much I love you?"  I play along.  "How much?"  He pounces on the end of my last syllable in his deep, lispy voice without missing a beat. "All the way."  Yeah, me too buddy.

Love you.

All.  The.  Way.

A few days later, Michael marks another celebratory day in Kindergarten -- the 100th Day of School.  I realize this is a big day.  He reminds me before he heads out the door that morning, "Mommy, it is HALF-WAY to first grade, you know."  I chuckle at the gravity of his tone.  I am in charge of snacks for the party, where we send baggies of goldfish with the kids and a poem marking that they are "O-fish-ally" 100 days smart.  It's fun but it's also a marker for them on all their time spent learning and exploring in Kindergarten.

Later that day at the bus stop, Michael is charged with energy when his feet hit the pavement off the bus.  His eyes are dancing against the blue sky.  He and I do our same hug as any other day as we walk up our front yard.  We tumble through the front door as the dog is doing her welcome home mambo as she whines and cries that Michael has arrived home.  Dylan is a chatter box trying to explain to Michael all that he has done in his day so far.

Michael says nothing, plops his bag down with urgency and hurriedly unzips his bag.  After shuffling through this bag he tells me that there is something he must share with me.  "Look, Mommy!  I drew something for you at school today."  He shoves a worksheet with a drawing toward me.

I take it in my hands and see a red crayon stick figure with a beaming smile on its face holding a brown crayon cane.  The assignment title at the top of the page, "This is what I will look like when I am 100 years old."  My eyes well with tears.  I start crying and cannot stop.

100 years old.

Old age.  That's old for any person, but for someone with CF (where today's average life expectancy is 38 years), well, that's a miracle.

My tears stream down my face.  Michael's face wrinkles and he aims his confused expression at me.  "Mommy, why are you crying?  It is because I am such a good draw-er, isn't it?"  I laugh as I am crying.  "Yes, Michael that's exactly why I am crying."

Sure enough a few days later like all moms can attest to...  my other kiddo starts with his own version of sniffles.  A fever that lingers.  And lingers.  And five days later still LINGERS.  I finally take Dylan to the pediatrician to find out that he has a yuck nose and looming sinus infection.  We agree that something might be brewing and with a negative flu test and a negative strep test, she hands me another script.  She and I both concur that waiting might be a good idea, but this way he is covered if it turns ugly.  Let's see if he can tackle this.  So we wait.

But not long.  The very next day we lounge around as a family.  More gray outside.  So we enjoy a cozy day at home inside.  My husband and I have the same thought that a nice family dinner out would be the perfect end to the day.  Something to get us out of the house and some good hot food.

We all get ready late afternoon.  A hot shower, a little eyeliner, and diva black mascara help me feel a bit better.  It won't erridicate the gloom, but at least I look, er, brighter.

After some bickering with Michael, he agrees to put on the dress clothes and we head downstairs to get Dylan dressed.  We find him slumped at the kitchen breakfast bar fast asleep.  We realize he is really sick and not quite himself.  Fever and fatigue.  I head out to fill a script that had been safely in my purse knowing we'd cross this bridge.  So much for a family dinner out.

As Dylan starts improving and his cough that has emerged with this round of illness begins fading a bit, I settle into the week.  Within days, I realize that I am also getting sick.  Standard.  By Sunday morning I find myself at an urgent care center with a prescription for antibiotics in hand.   The upcoming week we are expecting my husband's parents, Papa and Nonna, to come into town for a visit and to watch the boys for a couple days so we can attend the Cystic Fibrosis Foundation's National Volunteer Leadership Conference.  After starting to rebound from feeling lousy and a canceled flight because of a storm making life difficult, they arrive safely in New Jersey.  We are thankful for a little time with them and by evening, we make our exit to head to the conference in DC.

My husband and I head off into the night through a chilly mix of rain and snow.  In between the squeaks of the windshield wipers, we reflect on our boys' journey with CF and anticipate the two days ahead...  seeing old friends who are also fighting the same CF fight in their homes...  raising money to help find a cure for their loved ones...  hearing medical updates, advocacy strategies, marketing insights and more.  What is it they say...  ?  "Knowledge is Power."  It sure is.  Especially in fighting a chronic, devastating disease.

The conference is an emotional one, but filled with love and hope.  And remarkable science.  It becomes clear as the Chief Medical Officer and the Chief Executive Officer/President share the medical update that there is tremendous progress. They spend considerable time explaining the state of CF today as a disease and the expectation of where we are heading to a CURE.   The massive screens in the ballroom reveal a bar graph that shows a trajectory of medications treating 95% of the CF population to control and potentially CURE CF by 2017.  95%. Completely and totally astounding.  My brain almost can't process it.  2017.

I begin processing the genetics and the medicine.  My eyes slowly track each bar and adjacent note.  One bar, then the next.  And it hits me.  Our boys are in the remaining 5%.  The 5% NOT on the bar graph.  Here's the catch.  We have always suspected that the drugs would help our boys because in theory the CF protein is broken for the same reason (or a similar reason) as one of the most common mutations.  But the reality slams into my brain.  The truth is WE JUST DON'T KNOW.  The anticipated medications might not help them or might help them considerably.  Michael and Dylan are a rare group in an already rare disease.  (To read just how remarkable their gene story with CF is, read blogpost "Cracking the Code").  There aren't enough patients, or possibly any patients in the world, with their exact genetic match to research these amazing medications on the horizon.

My hands shake under the table as I realize the magnitude.  I shift in my seat reeling from my conclusion.  My cynical voice snorts inside my head, "5%.  Right, of course we're the 5%".  But my trust and experience with this amazing, results-driven organization shouts in my head, "Keep listening.  Don't freak out just yet."  And I am glad that I take pause and force my heart to be still.

The bar graph disappears and another slide emerges, "GOAL:  100%  We must not stop until ALL mutations are treated with success!"

Got it.  100.


No wonder 100 is a milestone.  100 days of Kindergarten.  100 Years Old.  Of course, 100%.

My hope, my trust, my belief in this journey do not fade.  My heart swells as my brain mulls this over.  I find peace and would find promise in my subsequent conversations with the Chief Medical Officer and the CEO/President about our boys over the following day.  Terms like "personalized medicine" and "methods of individual testing" are discussed.  But the most amazing part of all this...  they are BEING DISCUSSED.  To know that we are close to a cure or controlling CF is one thing.  But to be discussing individuals' experiences with life-saving medications and possibly in the next four years, this is the miracle in and of itself.

The people fighting for this cure...  The volunteers in this room...  The friends and family, co-workers and neighbors raising money to find a cure...  The scientists in the lab...  The leadership of the CF Foundation.  They get it and they are absolutely behind us.

Or as the salty boys would say...


Sunday, January 27, 2013

New Year's Party.

A new year.  A fresh new start.  And endless possibilities.  Everyone seems to celebrate with a party.

Noisemakers.  Champagne.  Silly hats.  And resolutions.

Little did I know what new possibilities would lie ahead for our family.  And our lives.  Nor did I anticipate THIS party.

December is a busy month loaded with the lovely sounds of Dylan toddling around singing "IS the season to be jo-ree" and Michael humming "Dradle, dradle, dradle, I made you out of clay" from his winter program at school.  I smile every time I hear them strike a chord.  What a blessed season.

Not too far into December, I hear coughing from both boys and place a call to their CF doctor.  I find myself in the middle of an elaborate game of phone tag that all parents of little ones struggle with on a daily basis.  I almost miss the easy days where all I had to do was answer "hello?" for the important calls where I could sit and thoughtfully listen and answer.  Now, I scramble for a ringing phone with screaming kids, a barking dog, and a pot of boiling water.  Or half the time I miss a call for whatever distraction is the topic of the day.  And if I do actually answer a call, I am usually waving off my kids who don't understand that when I am on the phone that there is a real person on the other end...  TALKING.  And I am trying to LISTEN.  Interruptions are common and 'air conversations' often take place simultaneously.  We, mamas, are good multitaskers.

Once I can actually make contact with the boys' pulmonologist and in between Dylan's many loud exclamations "Mommy!  You're never gonna be-weave this...", I wave my finger at him showing "just a minute".  I speak to the doctor in broken fragments.  "Yes, the cough is increasing.  For Michael is worsening.  No, doesn't sound good"  and "Dylan is junky.  Breaking.  Sounds rumbly".  The doctor responds with thoughtful pauses.  I can't tell if he is pausing to process my broken oral notes or to review recent tests for the boys.  I can't be quite sure but I also believe he has a smile on the other end of the line hearing my juggling act.

As he slowly begins a statement, he pauses and then has a mild startle to his voice as he says, "Huh.  [PAUSE]  It looks like Michael's last culture was lost.  Er, wait.  It says here in the notes that the lab cancelled it.  They noted it duplicate."  He pauses then adds, "huh."

Well, that's great.  My brain ticks.  I am agitated.



Gosh, that doesn't help us at all.  WTF?!

The doctor suggests putting them both on a pretty mainstream antibiotic -- one that they both have been on a number of times.  The doctor suggests that this drug would align with his previous cultures prior to the "cancelled" one.  Michael just finished a course of this same medicine about 5 weeks ago.  But I go with it.  In the CF world, antibiotics are a way of life.  Dylan chatters away about his latest creation he is waving in my face.  And while I am generally armed with a million questions for the doctor, sometimes just plain rhetorical, in this case, I am just relieved that he is calling in an antibiotic for their symptoms.  Little did I know what  looming affair was awaiting us.

Christmas blows by us.  We celebrate with our New Jersey family -- friends that we ride a life rollercoaster with...  surviving a hurricane...  our kids battling chronic disorders...  dealing with the unchartered waters of moving a family and living in a new place...  and making memories together to last a lifetime.  One night, we surprise the kiddos with a whirlwind Christmas lights tour we deem "The Minivan Express".  And have a lovely, memorable Christmas dinner at their house a few days later.

The scent of cinnamon still in our house and sweet honey ham leftovers still in the fridge, our family slows down after the flurry of Christmas.  My plans to visit my mother in the hospital in rural West Virginia have been thwarted because of a massive winter storm that hovers directly over my route to see her.  And in the following days other storms blow through on what would've impeded my trip back home to New Jersey.  I am heartbroken not to see her.  But we all realize how paralyzing the wintry weather is for the entire east coast.  So for now I stay put.

With my unexpected stay home, my husband and the boys are almost relieved that I will be along for the trek into NYC for a follow up visit with their GI doctor.  Tummy complaints and tanking growth charts have brought us to this point.

The sky is still inky with a hue of light in the east when we gently wake the boys.  From the moment the boys are awake and groggy, my husband and I hear it.  I cringe downstairs hearing Michael's coughing upstairs as he gets dressed.  A quick pit stop at the bathroom, shoes and coats, we are out the door.  We avoid the topic of food, snacks or even water.  Dylan has to fast and we play it off that it's still night that we will get food when we get to the hospital.  We subtly sip our coffees and stare ahead into the December malaise.

Daylight slowly fades in, while uncovering gray clouds and gloom.  And during the drive, we realize that Michael HASN'T STOPPED COUGHING since we got in the car.  It's airy and constricted sounding.  And CONSTANT.  My husband and I speak low to each other but both agree that Michael does not sound good and that he MUST be recultured and have the GI doctor listen to him.

In between coughing spells, Michael sleepily asks if we have passed the big bridge (the infamous George Washington Bridge) yet.  "No, not yet," we say in unison.  My eyes lock with my husband's and we smile trying to divert our thoughts.  He glances back at the road and for the first time, I am very aware of our mutual worry for Michael.  The massive suspension bridge has become a point of interest along our frequent trips to the CF doctors.   The boys gaze up through the sunroof at the wires and curved steel.  Their little mouths are agape and their eyes wide.  We point out the Hudson river to the boys on either side of the car.  "See the big buildings out Dylan's window?"  I point south and show them.  They make different observations about the buildings and the river below.  Our focus on the normal helps my brain to avoid going on random worrisome mental journies.

My husband and I gulp the rest of our coffee as we finish the ride in the car.  We are in for the long haul with this particular visit since Dylan has many tests ahead before we even meet with the doctor.  We are the only ones in the hospital's imaging waiting room.  Dylan's name is called almost immediately and we are off to an efficient start with his GI x-ray.  Quick and painless.  But then after waiting and waiting, finally we are called in for a lengthy GI ultrasound.

Dylan bravely climbs onto the exam table draped in a white sheet.  The room is very lowly lit.  A lamp sitting on a table across from us casts a warm, gold hue throughout the room.  The ultrasound tech is nice, but quiet and dutiful.  I hold Dylan's hand as he cringes and whimpers.  I try to calm his nerves by explaining it won't hurt and that they are taking pictures of his belly to help his belly aches.  After about two minutes, he starts to relax.  The tech's rolling and clicking on the key board and the gentle hum of the industrial medical ultrasound machine soothes him.  She moves the ultrasound wand across his belly.  The gel squishes as she rolls the wand to the next spot.  I watch as he stares at the ceiling.  I whisper quietly to him and we count the different colored balloon cut-outs that have been put on the ceiling to distract other little kiddies.

Whirr click click.  Whirr tap tap tap.  I see the tech type "Left Kidney".  Whirr click click.  I watch Dylan's eyes blink, his dark eyes very still in between each blink.  Each rep of his blinking shows a heaviness.  I watch him slowly fade to a calm and then fully to sleep.  My heart melts.

He is still and comfortable, even when the tech moves the ultrasound wand.  She squirts more warm gel onto the wand and places it back onto his belly.  Dylan shifts slightly to his side unaffected in his sleep.  Whirr click click.  Tap tap tap.  "Right Kidney".

Times passes.  The tech takes over 60 images of Dylan's entire gut.  I see the tech snap images of his spleen, his gall bladder, his stomach to name just a few.  Dylan is still out even after a thorough review with the radiologist and a few more images.  The session has wrapped and I scoop Dylan up and lift his heft into my arms.  I lean his head on my shoulder and carry him back to the waiting room.  He slowly starts to wake.

We all decide to get a bite to eat since we have almost 2 hours before the GI doctor appointment.  We make ourselves comfortable in the hospitals cafe area.  The boys scarf food down while I whittle down my third cup of coffee of the morning.  We all admire the titanic Christmas tree that is adorned with ornaments as large as basketballs.  Pink, turquoise, purple and gold.  In between bites we discuss ornaments that are alike and ones that are our favorites, which ones match, and which ones are unique.  To wrap, the boys gleefully trot around the tree and play a mild game of tag.

Before long, our party hikes up to the GI doctors waiting area and plant ourselves down with the 'caws' and 'grunts' of Angry Birds.  It is in this moment that I see my opportunity, I head back up to the reception desk and to have our nurse practitioner paged.  Within a couple of minutes our kind nurse meets us and we explain our concerns about the increased coughing after finishing the most recent antibiotics.  After listening thoughtfully she says, "Is he always this pale?"  I laugh nervously and we comment that yes Michael has always been the fair one and Dylan the very dark one.  But I know she is right.  He is more white than usual.  She agrees that Michael should be swabbed again to see if he cultures anything.  I walk him to an exam room.  Michael looks at me, his feet swinging as he sits high atop the exam table.  "I am brave for the swab, Mommy.  I like it.  I just don't like bloodwork or shots."  My heart sinks a bit and I reassure him that she should just swab his throat.  "It's okay.  The swab is okay."  I know how brave this kid is.  And unfortunately, how routine this has all become for him in his life.

Soon we meet with the GI doctor and get some good news - bad news.

Good news, the last appointment's growth measurements must have been a fluke.  I snicker inside...  perhaps a belated Christmas present?  Needless worry, but I am thankful.  Based on today's numbers, both kids are growing beautifully.  They both look great, the doctor and her fellow doctor confirm.  I feel the streamers and confetti float down in my mental celebration.  Oh.  Joy!

Bad news, she confirms that Michael's breathing has some crackles that are very apparent.  She suggests just to keep an eye on it and see what the culture grows.  We aren't there for a pulmonary check up anyways, so I don't think too much of the assessment.

New year, new things.  New things for sure.

We ring in the new year quietly, not quite the parties and revelery of years' past.  Quiet is good with me.

January 2nd doesn't miss a beat as my husband hustles Michael to the bus stop, hops in his car and scurries to work.  I rush out with Dylan in tow and get him to school promptly as a nod to the new year and an unspoken punctuality resolution for the new year.

I run a few meaningless errands and find myself unlocking my front door.  I jiggle the key nervously and with a sense of urgency.  The dog barks her joyous greeting and cries like I haven't been home in two weeks.  I pat her on the head as I immediately drop my white plastic bags emblazoned with a red bulls eyes on the floor.  She jumps back with startle.  I don't wait a second.  I just know a message is waiting on our machine at home.

Sometimes.  YOU.  JUST.  KNOW.

I hastily rush into our home office without removing my trusty white winter fleece jacket or my favorite new gray UGGS.  There is purpose and precision in my movement.  I lunge for the the blinking answering machine and my index finger and the silver button collide.

A robotic voice that I have heard thousands of times before says the same line...  "You. have. one. new. message."  Heartless, unemotional machine.  This message is about to unleash a tidal wave of heartache.  The least it could do is be supportive.

It is the nurse practitioner from the boys' CF care team.  She has news about Michael's culture and to please return her call.  My fingers rush to dial the number and she tells me what I have already felt that I have known - except it's even more intense than I expected.

"Has Michael ever cultured Pseudomonas before?"  An invisible force shoves me into the chair at the desk as my knees buckle.  The chair catches my weight and almost bounces with response.  She continues that Michael's throat culture shows both strains of "mucoid" and "non-mucoid" Pseudomonas.  And unfortunately, I already know what these terms mean.  I rub my forehead as we continue our conversation.  I rub so hard I make my temples ache.  My shoulders tight and rigid, I cannot process the stress that pulls my muscles taut across my neck, shoulders and upper back.  It a normal state of being for me.

You see, Pseudomonas is a bacteria.  A really nasty, dangerous bacteria.  It isn't too different that other more well-known culprits of infection like Staph, Strep, E. Coli, even MRSA...  but Pseudomonas has a different reputation in the CF community.

Pseudomonas is like the a-hole at the CF party that no one likes.  Not too soon after the shindig gets underway you are forced to toss P. Seu from the party.  But he shows back up... with more of his a-hole friends.  Mucoid Pseudemonas is when that same a-hole brings a posse of bodyguards back with him to the party and they force their way in.  You do your best with your personal bouncer to throw him and his gang out, but it becomes too hard with P. Seu's crew and street smarts.

Let's be honest, he's just a jerk.  And you learn to live with him.  So does everyone else.

The problem with our smug buddy is that he has figured out the best way to overstay his welcome and party on...  even when you're not in the mood.  There is really no making him leave because his bodyguards are unrelenting and tough (which literally speaking is a biofilm insulation that the bacteria has created to become more resistant to antibiotics).  You are forced to put up with him and more of his idiot friends staying at your place (translation:  the bacteria begins colonizing and and taking up space in the lungs).  Finally, this posse of jerks begin to DAMAGE your place from the partying and from cramming into your pad.  Holes in the walls, beer spills on the floor, and floorboards cracking beneath the party's feet.  You just want your home back!  This last aspect is the worst about your house guest.  In a CF patient's world, it means IRREVERSIBLE.  LUNG. DAMAGE.

To get this call from the CF Care Center nurse, means, we have an unwanted, uninvited house guest who has no intentions of leaving at our life party.  And it sucks.

My heart is heavy, because I know what it means.  I review with the nurse the next steps to start Michael on a course of more medications to help fight the infection.  Basically, these meds are the SWAT team and the specialty forces ready to remove P. Seu and his cohorts who have begun camping out in Michael's little lungs.

It means more yuck tasting medications.
It means waking Michael up at 6:30 am in the dark of winter to complete all of his treatments to catch the bus on time.
It means isolating him from Dylan two separate times a day to run courses of an inhaled antibiotic (since we don't want Dylan to develop resistance to the antibiotics since some day that same idiot will try to take real estate in his lungs.)
It means a LOT more juggling.
And it means less rest for Michael's already tough schedule for a five-year-old.

I begin weeping when I hang up the phone.  Frustrated with CF.  Frustrated with the brutal routine that has become our lives.  Frustrated with how much harder it will become.  Frustrated at how unfair it all is.

I glance at my watch and shake my spinning head.  I decide to climb in the cold car and gather myself as I have to pick Dylan up at preschool.  I wipe up my smeared mascara with my finger in the mirror.  Funny how I continue the facade of a normal life, when so much of what we do feels so -- abnormal.  I paint the "normal facade" onto my face.  I can still feel the sadness and anger deep inside as I touch up my eyes and slide on my favorite weathered Prada sunglasses.  A sleek black tube of mascara and a designer pair of shades can hide so much.  My facade.  I inhale deeply, force our my exhale.

As I do so, I punch the radio hard with my knuckle and my car's CD player kicks in.  LMFAO's "Party Rockers" blares as I pull out and head to the preschool.  I smile.  Every day last summer the boys and I would jam out to this song in the car on the way to the pool.  Dance party! I would try to get them moving and grooving in the safety of their carseats.

I embrace my anthem this morning.  Party, huh?  I snort, aloud.

"Every day I am shuf-shuf-shuffling..."  The bass of the music pumps against the beat in my heart.  The rhythms completely off.

Well, it's not quite the party of I was thinking of to ring in the new year.  I blink away the tears beneath my shades.  "Party Rockers in the HOUSE tonight...  Everybody have a good-good-good time."

Life's a party.

And I fully intend on kicking some ass this time around.