Monday, November 19, 2012

Bus Stop

The dog days of summer turn into the the back-to-school frenzy that all American families know all too well.  We scramble for the right supplies.  We juggle new routines.  We read books that ready the boys for the school days ahead.

As we gear up for school we discuss manners and using polite words.  Sometimes, boys will be boys, and 'polite' isn't always part of the vernacular.

My angst is considerable.  Michael is starting Kindergarten and I have become a disheveled ball of frayed nerves.  There is no start to the ball and no end.  Much like a string of Christmas lights that has been buried at the bottom of a box for 11 months.  You look and look but there is no outlet anywhere or any sign of a useful place to start.  The more you shift the cords and run your thumb along to find a beginning or an end, you get huffy and frustrated.  You decide to drop the damn thing back in the box and move on to other decorations.  My emotions are a tangled mess.  I don't even want to deal.

I remember thinking how far off it would be before Michael was walking, talking, and doing this own thing.  Now he asks super thoughtful questions, artfully negotiates, and can play a mean game of chess.

Yes.  The time has come.

Soon he will be getting on a big yellow school bus and for the first time ever I have to trust that he has the skills to go into the big wide world...  well, to go to Kindergarten anyway.

The planning for him just to go to school is considerable since he has special medical needs from his Cystic Fibrosis.  It is a delicate process of preparation and discussion with the school administration and the school nurse where Michael will be attending.  My brain takes slow, nervous pauses as I have the conversations with the school nurse and staff.  For those parents with 'special needs kids' whatever those needs might be, you know that the words you choose to describe your child's diagnosis, care, and your approach can incite a broad range of reactions -- from sympathy and pity all the way to 'get in line...  every kid has special needs today'.  I have no idea how to prepare for what the school's reaction might be.  I choose my words thoughtfully like "just a different routine" and "we normalize things" but also emphasize serious messages like "potential hospitalizations" and "critical medicines just to eat".

From the instant I spoke with the elementary school nurse 8 months ago, I was put at ease that she is someone who 'gets it'.  She is thoughtful in her listening and her planning for Michael's arrival in the fall.  Before school even wraps up in the spring, the nurse decides to float a preliminary 'heads up' to all staff members about Michael and what Cystic Fibrosis is for the upcoming school year.  She figures there's no harm in early education for the staff at the school about CF.


In the summer, I also speak with the school district's transportation team to understand where Michael's bus stop will be located.  Michael's morning routine is going to be a challenge.  I know lots of good ol' all American families who struggle with getting any kid out the door on time...  With two kids with Cystic Fibrosis, now add on another hour 45 minutes for morning treatments among the typical mix of breakfast complaints, fashion arguments, lunch box packing, and sock-and-shoe-search-and-rescues.  The director of transportation assures me that he will take a look at the bus routes and the timing closely.  He is confident that the bus stop is either in front of our house our one house over.  And we are likely toward the end of the route anyway so Michael won't kill his morning riding a bus along 10 more stops before school.

SIGH OF RELIEF.  Things are actually shaping up.

Also, in the late summer weeks, I tackle writing Michael's 504 Plan to attend school.  A 504 Plan is a written plan that supports children with medical needs in public schools and helps these children to fully participate to every possible extent.  It often lists accommodations related to the child’s disability or illness that are required so that the child may participate in the general classroom setting and educational programs.  504 Plans are imperative for children with CF.  They are a tool used to educate teachers, administration and staff about specific issues like hand-washing, illness at school, unlimited bathroom use (because of digestive issues), dosing medication at school to eat or if inhalers are needed to name a few.

For any family, back to school paperwork is daunting.  Generally a massive stack of different colored forms, reminders and informational pamphlets.  And for families creating 504 plans, you can think about lopping on a an inch thick worth of paperwork onto the pile. 

But I am pleasantly surprised that when the rubber meets the road, writing Michael's official 504 care plan is relatively painless because we have great support with the school nurse.  But I'm not gonna lie... it still is a TON of extra work.  It is a fine orchestration on my part of getting the CF Care Team's formal letter with Michael's needs, ensuring forms are signed and a reviewing of all of Michael's needs thoroughly.

Does this form need to be signed?...  Do I need to worry about this?...  What about if he is hospitalized, did I include info. about extended absences?...  Oh, and I have to fax this one to the CF Team in New York...  I am mentally fatigued.

I spend HOURS reading and reviewing everything.  It's a fine line of providing too much detail which might overwhelm school staff against ensuring that Michael's needs are met.  But in the final days before school we have completed all forms and the nurse and I are in agreement about everything.  Michael's CF Care Team has completed everything from their side...  all i's are dotted and t's are crossed.  All the signatures are penned.

Once we are all set, I don't quite hold my breath.  And sure glad I don't because in typical fashion, I receive a letter from the School District Transportation Department.  I open the form letter that breaks the news Michael's bus stop will actually be instead 10 houses down the street, which on our street is a looong walk with no sidewalks.  I give a long deep sigh.  GREAT.  Our mornings are going to be a disaster.  I should just accept that I will be driving him to school most days since he will be late.

The ink is barely dry on the final permission forms for Michael's medical needs when the nurse decides in the last  days before school starts that she will do a presentation on Cystic Fibrosis to the school staff and administration.  She wants them to understand that CF is a big deal.  Handwashing is a big deal.  Any symptoms they might see from Michael is a big deal.  I don't know quite how I feel about this...  it might be weird that everyone knows everything to do with Michael's CF.  Will the adults think differently of him?  Will they treat him differently?  The flutter of concern halts when I initially answer my own question...  of course they will treat him differently.  Duh.  Isn't that the point of a 504 Plan?!  And it strikes me with shot of sadness that, yes, he will be treated differently.  Whether the School Nurse does an informative presentation or not.  He is different.

And then I also remind myself that our family has always towed the line of awareness is the key to understanding (and finding a cure).  When I am done wrestling with my inner-mom struggle, I quickly land again in the place of...


She is on a mission to do all she can for Michael.  And knowledgeable grown-ups are part of that formula.  After the last conversation with the nurse before school begins, my phone rings (exasperated sigh) again.  It's the Director of Transportation wanting to follow up with me.  He apologizes that we received a notice with Michael's bus stop down the street...  in error.  He "certainly didn't forget about us".  He states that there is a correction for Michael's bus stop and that the bus will pick him up in front of our house.  Finally, I am completely relieved.  I feel my shoulders release and fall a little.  It's the little things that can life easier make a family struggling with chronic illness.  The warm tears well up in my eyes.  OH THANK YOU GOD!

I go to sleep knowing that in a few short days, I will put my son on the bus and let him head out into the world.  And all the better that he will be on time.

The remaining few days preparing for the start of school are typically filled with ranting lectures from Michael directed to Dylan about how he is going to big kid school.  Michael bats his hands in the air to mark the importance, "Yeah, Dylan, because I am a big boy and I am starting Kindergarten.  You still go to preschool."  Michael's hands add colorful punctuation in the air along with his condescending tone.  His eyeroll emphasizes the word "preschool".  There are continued gentle reminders about feelings and what it is like to have hurt feelings and to have a good heart.

Snap, snap, snap.  I take pictures of the boys on Michael's first day.  Our front porch in New Jersey has become our favorite spot for pictures.  Nondescript and simple.  I can capture the important things.  The excitement in their eyes.  The adoration between brothers.  I just can't quite capture the flutter in my stomach.  Or the pounding of my heart.  I have him hold up a sign commemorating his first day of Kindergarten.  The sign shares the date and explains he wants to be a "paleontologist" when he grows up.  His word, not mine.

Michael is wearing his favorite orange robot shirt.  His smile is glowing.  Not knowing which side of the street the bus will pick up on, we wait anxiously on the walk of our front stoop.  Our hands are intertwined as my hand clutches his little hand.  He grasps mine right back.

As the CF story goes, in the 1950's there were many children whose battle ended very early, often before even attending elementary school.  The CF Foundation was started in the 1950's by parents who wanted more for their children.  Who wanted a better life.  There were many medical advancements still undiscovered.  I think of how blessed we are.  I think of all those families, those pioneers in the CF history, who fought for this very thing.  I silently say a prayer of 'thanks' to them.  In this moment, I stand here holding Michael's hand, ready to put him on the bus for his first day of Kindergarten.  We are here because of those amazing fighters and those visionary parents so many years ago.  I am humbled.  I am grateful.  I am proud.

I look down at our hands.  And pause.  I love this little boy and am so proud of his courage.  Every day.  Especially on days like this. Especially when being different can be hard.

I realize that down the street the kids are waiting for the bus across the street.  So, Michael and I walk across the street to continue waiting patiently.

After a few more minutes, the bus roars up and comes to a jarring stop.  Michael lets go of my hand and climbs up.  He turns around smiles brightly and waves, "Bye Mom!"  My voice whimpers back, "Bye honey."  Michael disappears into the bus.  The nice bus driver waves me back across the street.  I stand in our front yard and wave all smiles to send Michael off on his first day.

The wheels to the massive school bus start to turn and the roar emerges again as the bus accelerates and starts to head off.  I swiftly turn my face away and cannot watch as it disappears around the bend.  I whisk my hand to my eyes catch my rush of tears.  For a brief second, I start sobbing.  I feel my insides lurch with every rapid sob.  Then, slowly, I draw air into my lungs and force myself to stop.

As I exhale with my eyes close, I envision that bolt of a confident smile he gave me.  It gives me so much comfort.  For him, it's simple.  It's a new adventure awaiting and he is thrilled.  For me it's not so simple.  There is a whole lotta love intertwined with heartache in this moment.  We begin our next chapter on this piece of pavement.  At this bus stop.

It is this spot that would continue to mark our days as some of the most special and simplest of times together.  The bus stop.  In this case, the stop is really in fact the start...

Friday, November 16, 2012


In the deep of summer and its unrelenting excessive heat, once again our air-conditioning is caput.  Our landlord is great about getting an A/C company out to remedy the problem as soon as possible, but time marches slowly over the days of sweltering heat.  I wonder if time stands still the heat is so unbearable.  During those days, our home often would reach temperatures that exceed the heat outside.  One day, the boys are at camp all morning and then we spend all afternoon at a friend's pool.  We are there until the evening hours and the boys are so drained from the heat, they both pass out in the first minute of being in an air-conditioned car.  I would come to refer to our house as "the inferno" during these few days.  Case in point, that night at 11 o'clock the house would still hover around 86 degrees.

We get through three days and nights of the discomfort and on the evening of the fourth day, our house is starting to finally cool off.  82 degrees never felt so good.

Nine o'clock and both boys are finally in bed and the house is a chilly 73 degrees.    I hang up the telephone with my brother for a mid-week catch up, nicety, 'how are you?' talk, when something catches my eye on Pinterest.

First, an admission.  I am a Pinterest junkie.  I pin and repin and well repin.  The “what if’s…  the “some day” home…  the idyllic childhood crafts that the perfect mommy is doing with her kids…  The superfood recipes and the junk food game-day recipes…  a treasure trove of the “I wish’s” and the “If I were a better mom” ideas.  Or the “Only if I had time” ideas.  Pinterest in itself is an addiction… it oozes visual delights and reflects on self-improvement.  It is all things that busy moms need and love.  A virtual bulletin board of the best and the brightest.  But let’s be honest here, my life boards are piles of magazine cut-outs, notes from the schools, junk mail that needs to be shredded and scribbled unchecked to-do lists.

On this occasion, it's not the multimillion dollar interior of a great room that captivates me or an adorable artsy craft that seems so simple and a great idea in concept...  instead it's a "The 20 Things No One Ever Told Us About Raising a Boy:  And Every One Is True".  I am curious and instantly am taken.  Okay, people if you know me, I am not an "email forward" type of person.  I am not a chainletter person.  I once in a great while read the political comics of a weekly news magazine, but I rarely believe sharing around those adorable puppies or that story supposedly from so-and-so's cousin.  I believe that an article a “Top List" of anything can not sum it up.  At least not for me.

I am intrigued and compelled to click through.  The first one on the list that I click through to is "The Penis Comparisons Start Early".  I start laughing thinking of my boys.  And all products of the Y gene for that matter.  After I read the comical, albeit true, blurb I continue to click through the list...   

  • "Star Wars Takes Over Earlier Than You Expect" (You can say that again, check out my thoughts on Star Wars here)...
  • "Matchbox cars and trucks will multiply on their own in your home" (yep, step on ‘em every day)...
  • "You Will Revise Your Wedding Fantasies -- And Be Fine With It" (my greatest fear come true)... 
  • "Rough housing is Innate...  it's normal and experts say it's healthy" (I break up brawls daily in my house)...
  • "Boys Love Their Moms" (I smile.  That really says it.)

Faint tears well in my eyes.  I feel my self giggle as I lift my tired body up the stairs to bed.  As I crawl in, I begin telling my husband about the list and we laugh at the humor.  “It’s all so real…  So true,” I tell him.  “You must read this article.”

The next morning my bed feels icy.  I love it.  I stretch and roll over.  I can barely lift my dull head.  I don't know if body is in recovery mode after the marathon of heat, but I linger in bed for some more time.  The rushing of water in the shower tells me that my husband is getting ready to leave for work.  I hear the boys playing downstairs.  Laughter and hysterical shouting fills the house on the bright summer morning.  I want to stay in my ice box bed all day.  The cold sheets encircling me and my lazy head sinks down in my pillow.

I stretch and roll out and greet my husband.  He tells me that I should really go check on the boys.  I feel like telling him that he can.  But instead I slowly drag myself up and then fling my feet over the side of the bed and drop my weight onto my feet.  I walk halfway down the stairs and peer down to see the boys wrestling on the floor of the foyer.  I smirk and remember the article...  "Roughhousing is normal and even healthy."

I am snapped into a new dimension of boy insanity, as the most unbelievable event happens right before my eyes.  The boys don't even realize that I am watching.  Dylan stands up before I can even comprehend what's going on as he hurls a fluffy, white object at Michael's head.  I rub my eyes, still trying to wake up and be sure that I am seeing the scene accurately.  The object smacks Michael squarely in the face and explodes.  LITERALLY, EXPLODES into a million tiny pieces.  I can't really make out what it is, but the large object gives the appearance that it's a sack of flour dulling slamming into Michael’s face and raining tiny white particles everywhere.

Next, I see the remaining object that wasn't decimated sink from Michael's face to the ground with an exhausted thud.  I react immediately since Dylan threw it with such menace, and the residual mess is now undeniably decorating my foyer.  As I run down the stairs, Dylan laughs his mischievous snickers.  Michael is frozen in his place completely stunned.  His expression still in a state shock.  He doesn't know whether to laugh at his brother's antics or to start wailing out of anger.  I begin yelling as I approach and Dylan throws his hands over his ears.

Roughhousing, yeah right.

Matters only get worse when I identify the weapon of mass destruction.  A diaper.  A fully-loaded pee-soaked diaper that Dylan had been wearing overnight.  No mistake.  Size 6.  Heavy in mass and large enough to hit a target like his brother.  I don’t know if this kid is insane or brilliant.

The particles that are now all over Michael's hair, his shirt, the wood floor, our throw rugs and frankly the entire foyer are the gel beads of a diaper.  These weird spongy gel beads absorb the urine and its yuk smell.  You might never know they are present in the high-tech diapers of today, unless, frankly, your three year old lobs one at his brother.

My GAG reflex is emerging.

Only my boys.  And, to think, for once I was going to let the roughhousing go...  Normal and healthy...  I snort at the thought.

Dylan is now (clearly) pants-less, Michael is coming to, and my husband is late for work.  I am in a fit yelling in tongues.  Somehow, I am able to communicate to my husband that Michael needs to be bathed and Michael heads upstairs to get cleaned up.

Dylan is sent to the "thinking spot", which is our version of time out.  How politically correct of us.  I feel myself sneer as I send him to the “thinking spot”.  The term, thinking spot, doesn't exactly carry the "heavy-hitter" weight to underscore how truly upset I am.  Something like "the drama dungeon" or the "smarty pants asylum"...  anything else might have more zest or umph where they can wait out their issues.

I refocus.  This is not just a mess, it is downright UNSANITARY.  GAG again.  I wonder where my mom HAZMAT suit is at this moment as I envision a urine cloud over the area that I am trying to conceive of cleaning.  Might it take a mushroom cloud appearance?  Or more of a stealth odorless, tasteless WMD that we are dealing with?  I had no idea years ago that moms also earn a degree in chemical or biological weaponry.

I try to vacuum the gel beads with the hose of the vacuum.  Only half of the beads give way and are swept up.  The other half remains on the floor further provoking me after a pass with the vacuum attachment.  The gel material is sticky enough that it doesn’t immediately pull into the suction of the vacuum.   I concede and try the vacuum in the upright position.  None of the gel beads move.  I try wiping it with wet paper towels and the gel beads bounce around in all different directions taunting me.  They pull against the paper towel and do not cooperatively sweep up or disappear.  Finally, I try sweeping these suckers up with a broom and pan.  They bounce, stick, and pull with traction against the flow of the bristles of the broom.  I am livid.  HOW THE HELL AM I GOING TO CLEAN THIS?!

I excuse Dylan from the thinking spot and direct him to come and help me clean the mess.  Like a lengthy question on a final exam, I mentally answer out my answer the best of my options.  Dylan stands there and stares at me as I try to gather my thoughts on the multiple choice Mommy exam.

“If you were a mom, and your kid obliterated a diaper, how would you clean the mess?”
A)   A vacuum that only works moderately
B)   Wet papertowels which does a mediocre job of catching the loose material
C)   A Broom that spreads the mess around
D)   Leave the house running and screaming down the street
E)    D is not an option.

With few options, I grab the vacuum and tediously begin cleaning with the attachment.  I have to pass and repass the same spot a couple times to clean up the disgusting gel beads.  I make Dylan help me with the clean up.  My husband has bathed Michael and heads out the door.  As he walks toward the door, frankly with freedom in view (lucky guy!), Dylan is frantic and upset.  He begins begging Daddy to stay.  After quite a few hugs, high fives, fist pumps, blowing kisses, waves, Dylan runs out the door after my husband.  I see his bare bottom head out the back sliding glass door, his little feet moving frantically and his voice wailing.  I run out after him and my husband sees pants-less Dylan running toward the car.

Daddy scoops him up and brings him back into the house. We get Dylan in a pair of underwear so he is no longer baring it all.   Now on the third try, my husband successfully makes it out the door.  The boys and I sit on the front porch and wave at him as we do every morning as his car pulls out of the drive way.  The boys shout their send-offs to Daddy for the day.  “Daddy, tonight I will read you THREE stories!” Dylan yells.  Michael projects, “I love you, I will tell you stories tonight, Daddy.”

Undeniably, there is the truth staring every parent of boys in the face...  the things that occur when you raise boys.  The ones you wish you knew before you even considered having kids.  The ones you wish you were prepared for.  And the ones that there is no conceivable way you CAN prepare for.  To say the least, I would’ve never believed that one morning I’d watch my own toddler son squarely nail his brother in the face with a soppy diaper.  To raise boys takes will, guts and tenacity.  To raise my boys, well that’s a whole other level. 

And off we go.  Another day at the races and I haven’t even had my cup of coffee.

Sunday, August 26, 2012


Scenic Chicago.  On this day, I don't think I have ever seen it so gorgeous.  I have lived my whole life in the suburbs and even worked at a Michigan Avenue address for seven years.  But for some reason the sky is bluer, the skyline more defined, and the view more astounding than ever before.

To the right, turquoise sparkling waters where crisp white silhouettes of sailboats mark the waters.  Straight ahead in the distance the iconic Sears Tower (to those Chicago natives it will never be Willis Tower, sorry).  Two long white spindles above the land.   To the immediate left, I am passing the Field Museum.  A building of treasures that glitter and glimmer and also ones that are dark and dusty.  Each artifact telling a story of amazement and wonder.  Just two days ago, we brought met my brother and neice to spend the day ooh-ing and ahh-ing at Sue the T. Rex, the most complete T. Rex skeleton on earth.  Dylan walked into the dinosaur exhibit and exclaimed over and over (for the whole room to hear), "Oh.  My.  GOSH!"  pause for 10 seconds and repeat.  "Oh.  My.  GOSH!"  This would go on a good five or so times.

I follow the path where the flowers are tumbling out of the planters and the shade is so inviting on this May afternoon, folks are stopping along the way to sit.  Tomorrow we shall embark on our 12 hour looooooooong journey back home.  Two kiddos, a Labrador Retriever, and a hard-top luggage carrier.  I don't which I will need more tomorrow at 6 am...  a shot of espresso or a shot of whiskey.  Either way, we will soon be heading back to our own beds.

But not until we have finished one last mission.

Great Strides.  Our annual walk to cure Cystic Fibrosis.  Where each step is for a cure.  For our beautiful sons.  And so many others.

The scene is something to behold.  Each year I see this scene and have my quiet moment.  I don't share it with anyone.   I keep it deep in my heart and keep a smile across my face to mask my feelings.  Our friends, our supporters, our army gathers at the white tent where our banners hang proudly.  There is mingling and laughter.  But deep inside, I want to cry.  For the good in people and for the reason we are all here today.  I look around and see the same thing at so many other tents...  just different colored t-shirts and different stories about battles with this insidious disease.  Our friends and their little girl in the green shirts.  Our friends in the grey for their little boy.  Our friends in the blue shirts for the memory of their sweet son.  All the colors paint a Monet with movement and vibrance.  Dots of strength.  Dots of grief.  Dots of joy.  And many dots of love.  I can never fully take in the art.  Sometimes it's just too much.

I am yanked out of my moment by military helicopters zooming loudly overhead.  Luck would have it that our nation's President is passing by.  He has been in Chicago for fundraising for his upcoming campaign and his helicopters slice through the piercing blue skies directly over our heads.  The boys are entranced as the behemoth choppers power overhead.  A fourth helicopter follows the original three.  They head out over Lake Michigan and turn south toward Soldier Field.

I refocus after the thundering whir of the choppers has passed.  I find my grit and my hope.  There is more chatting and running after Dylan.  An appropriate family welcome to a new puppy as my brother-in-law and sister-in-law arrive.  The lovable pooch has floppy ears and big paws and she is the bell of the Great Strides ball at our tent.  Everyone adores her.  Then a bigger welcome as our new nephew, only ten-weeks-old also arrives with Mommy and Daddy.  Adorable and blinking away the light through his shaded stroller.  My heart swells with love and sunshine as more family and friends descend on our tent.

We head out after our mingling and the pooling tears in my eyes have faded.  Our family and friends break up and throughout the crowd of other Great Strides walkers and we are on a mission.  In stride with our loved ones we juggle the stroller where Dylan relaxes.  My husband is on the path minutes behind walking with Michael.

I inhale the warm breeze and eye the bobbing sailboats on Lake Michigan.  The walk is enjoyable, and I pan across the amazing skyline to the left as we walk north.  Time passes, and we turn south to return to our tent.  As we are nearing our last third of our journey, I am yanked out of my nostalgic gaze and thoughtful conversation with my best friend from college when psychotic screaming in the distance is now approaching quickly.  My eyes lock in on a cyclist who is yelling at the top of her lungs, "You IDIOTS.  Move outta the way!  You IDIOTS!  WHAT THE HELL?!  BIKE COMING THROUGH.  IDIOOOOTS!"  She is coming toward us on the bike path, riding the opposite way our crowd is walking.  And as we had been trying to for the duration of the walk, we try our best to move to the side...  That is, without stepping into the oncoming traffic of, um, LAKESHORE DRIVE.  I keep shaking my head.  What.  A.  Fool.

I halt my daydream of stopping my stroller, diving in front of her bike, and reading her a scathing lecture in humanity.  "Hey, lady, I know you are trying to go for a bike ride, but we are trying to save my boys' lives.  YOU IDIOOOOOT!"

Wow.  There is a whole lotta attitude in this world.  Even barreling through a charitable walk where to put it simply we are trying to help others BREATHE AND LIVE.  This insane woman has punctuated my experience in a remarkable way.  I tell myself that she is just a dot.  She is JUST A DOT in the whole picture.

Sometimes it's not easy to see the good in the world.  It's often a challenge to step back and see the amazement and beauty of the Monet, instead of the specific dots of color.  I don't ever want to get caught up seeing only the brushstrokes and missing the dazzling entirety of painting.

Sunday, July 8, 2012


The lazy days of summer seem not so lazy.  At least in our house.  After a busy morning of swim lessons for Michael and a trip to the pool, we still have more flurry left for our day.  Thankfully, crabby Dylan has stayed away most of the day with a blessed long nap.  He is plopped on the couch wedged between a pillow and his favorite brown fleece blanket as we visit with our friends over dinner and good conversation.  Michael watches his favorite show to pass the time with grown-ups gabbing and baby brother snoozing.  As the sun begins to dive behind neighborhood homes and our company departs, we decide to meet up with friends at the local Family Fun night.  We know the boys have had a jam-packed day and they are exhausted, but we could use a little summer fun.

If you have ever been to a festival in anywhere USA, you know parking is the worst of the situation.  It is an aggravating, forehead vein-popping experience for a simple family outing.  We circle the festival and then the surrounding neighborhoods for a prime spot.  After about 15 minutes, score!  We throw the SUV in park and the kiddos hurriedly start unbuckling themselves.

As we approach the festivities, we pass a bunch of ponies.  Well, more accurately ponies' tails swatting flies away.  Grrrrrreat.  Then, I spot the the vendor packing up the petting zoo and the pony rides.  I let out a sigh of relief.  Oh, thank God!  They are on their way out.  I am not the biggest fan of my boys petting filthy animals in searing heat.  To say the least, I am not a nature person.  My Labrador Retriever is about as wild as it gets in our house.

Inflatable slides, bounce houses and festival games.  The boys eyes take in the thrills that scream primary colors.  I don't think I have ever seen so much red, blue and yellow in my life.  Little feet start to walk faster and then break into a run to arrive at one of the festival attractions...  an inflatable obstacle course.  They stop and stare with their mouths agape.  They are respectful and pause almost in prayer at the The Holy Grail of festival attractions...  Then Michael breaks the moment of silence and shouts "American Ninja Warrior!"  He is ready to become the next warrior.  His body jumps up and down to illustrate his undeniable excitement.  After the fourth trip through the line and conquering the obstacle course, the boys have achieved ninja status.

We head with our friends to the tikes train ride.  The boys and Michael's bestie, climb onto the train as they shove handfuls of popcorn in their mouths.  White puffs spill all over their laps and onto the ground.  They don't care.  They ride the little train around the parking lot pointing to the sky and shouting different things they see.  Their glow necklaces are glowing as brightly as their smiles.

Darkness has fallen and we settle in on our blanket next to our friends.  Dylan goes back and forth between their blanket and ours.  He keeps sitting with our friends, whose oldest son babysits for Michael and Dylan on occasion.  The boys are dancing and playing as never before when an expected ear-rattling explosion sounds.  BOOM!  There is a warning firework in the sky prompting everyone to take their seats for the patriotic performance ahead.

We sit excitedly anticipating the fireworks.  Dylan wiggles with excitement.  He flings his glow necklace around, whipping it in a circle hurriedly.  I am just waiting for him to slap someone with this fun toy turned torturous whip.  He hops up and dances with his glow necklace wrapped around his ankle.  The lighted glow necklace becomes a blur with how fast his feet are moving.  The 80's hit, Maniac, plays in my intra-head audio system.  I pull him back into my arms.  Then the dancing night lights begin painting the sky.

I look at Michael's face, his eyes large and twinkling.  His clear blue eyes reflect every explosion of light, shimmering and glittering with each pop.  His sweet expression etched in awe and wonderment.  He blurts out sounds expressed with oohs and aahs, but also little boy growls.  His sounds put me in his little imagination of some amazing firefight in outer space between two alien space crafts or laser-emitting dinosaurs.  A little boy's play-by-play of the dynamite...  expressive, animated and angry with every BOOM and every spark of light in the inky sky.

I can't stop looking at his face.  I adore the wonder in his expression as red and blue watercolors splash across his porcelain face.

Conversely, Dylan is trembling with fear with every firework.  It's not the sparkling glitter in the night sky, rather the audible BOOMS and BANGS that mark his experience of the evening.  His hands cupped tightly over his ears, he presses into me.  He reassures me, "I wike dem.  All of dem.  Just not the booms."  Then he yells for me to wrap my arms around him.  I shift uncomfortably from my contorted position of holding him on my lap leaning back, but with no support from my arms behind me.  I change positions and he quickly grabs my arm and wraps it around his waste.  His naked ear is finally rejoined with the cup of his protective little hand.

My husband and I are completely impressed with the show, which offers four 'fake out' grand finales.  Every time we start to believe the show has wrapped up and even one time we start to get up, the pops of color reappear.  We all dreamily resume our positions and continue gazing upward.

The boys have never seen fireworks this close and have never experienced the intensity of the thunderous pops and booms.  And they respond so markedly different.  Michael gazes up into the sky with a smile on his face, his little mouth parted in awe.  Dylan scrunches down into my body with his hands clasped tightly over his ears, partly enjoying and partly hating the display.

Yes, they are different in so many ways, these two brothers.  But they also clash like explosions when they argue.  They color my world every day with their light.  And they are loud even when they whisper.  And in these ways they are very much alike.

I will never forget this moment sitting and looking up with my beloved family.  I smile watching my husband that I love so much and the boys that I adore endlessly, while sitting with friends that have become our New Jersey crew.

Sometimes it's these moments, you know, the ones you will carry on with you in life.  The ones where your heart bursts with fulness.  The ones where the colors and the glitter are sometimes unspeakably brilliant.  And the only way you can describe these most amazing, memorable moments is, well...


Thursday, June 7, 2012

The Dark Side.

Somewhere between the LEGO madness, the birthday cake and the droning exhaustion of the days of late April, we had an cataclysmic encounter with the Dark Side.

I am not one to talk smack of epic sci-fi bad*sses, but in this case, only Darth Vader himself could've caused the drama that landed at my front door.  My brother decides to send The evil Lord Vader's mask to our home to Michael for his 5th birthday.  As time ticks away on the big day, I notice that the package has not yet arrived. I called my brother to check in on its whereabouts.  We chalk it up to a late delivery and my brother suspects that the mask won't arrive until the next day.  I explain to him that the UPS guy often comes very late in the evenings, so it is totally possible that it could arrive tonight.  I look at the clock.  It's 7:30.  Almost bedtime.  Maybe it won't make it after all.

Sure enough, the boys are hooked up to their evening treatments at 8 pm when the doorbell rings.  I am greeted by a very large, boring brown cardboard box sitting on our front stoop.  I shuffle it in discretely past the boys and bring it into our dining room to dismantle the massive box.  I unload the magnificent Darth Vader mask.  The shiny black helmet radiates an aura that I can't do justice.  I swear I can hear the eery rhythmic breathing coming from the menacing helmet.  It looks awfully big.  Huh.  I shrug.

Then I unload a second mask...  Iron Man.  The gold and maroon mask looks smaller in size, lights up and has sound effects.  Aww, Uncle thought of baby brother Dylan on Michael's birthday.  He didn't want Dylan to be left out.

I know Michael is going to be thrilled with the Darth Vader mask.  The child is enchanted with all things Star Wars.  I wait until their treatment machines have whirred to a halt and their show has ended.  Then I parade in the masks demanding both boys keep their eyes closed.

Daddy and I unveil the super coolest, most bad*ss gift a five-year-old could receive.  Michael opens his eyes.  He blinks and then his eyes become wide as his little mind tries to grasp what is in front of him.


He smiles and then realizes that he has received a special gift from his Uncle.  Dylan gets excited that he hasn't been left out.  Daddy opens the boxes and we present the Vader mask to Michael.  He looks hesitant at first, but then puts it on his head.  My husband and I can barely breathe we are laughing so hard.  A teeny body with a gigantic helmet.  A life-size Darth Vader bobble head in my family room.  I am waiting for the helmet to start wobbling as if it's on a coil.  All we need is a wood platform for him to stand on engraved with "Darth Vader" to make it complete.

Swiftly, Michael removes it with a firm grimace.  While he remains steadfast in his respect for Lord Vader, a slight intimidation (or perhaps fear) overtakes his emotions after removing the helmet. At this point, he finds little humor (or joy for that matter) in the mask.  Michael shifts his eyes to Dylan where he sees Iron Man in a full heroic pursuit while screaming and fighting imaginary bad guys.

Disaster now ensues.  With no disrespect to Vader, he would prefer a mask that talks and flashes lights, like baby brother's Iron Man mask. His crying quickly moves into full-blown wailing and his face flushes red.  We try all tactics.  We each try the mask on and diligently try to convince Michael that it's a really awesome gift and that he would have a ton of fun playing with it.  I place it on my head.  Gosh, it's even big on me.

I hand the helmet to Daddy who puts it on his head.  We realize that the mammoth mask was sent mistakenly and must be an adult version.  It's big on my husband.  My brother had in fact ordered one for a five-year-old and we received a life-size version. 

Michael quakes.  "It scares me!  I want an Iron Man mask wike Dywan!!!!!"  Actually, I can't blame the kid...  it sort of scares me too.  My husband and I lock eyes and do everything we can not to laugh.  We are thinking the same thing...  No good deed goes unpunished.  Michael's wailing and Dylan's yelling only catalyze each other as they now fight over the single Iron Man mask.  We are fighting our laughter in this seemingly traumatic birthday event for Michael.  Sometimes laughter is the only course of action.  However, the magnitude and the duration and VOLUME of the sobbing throws us into Parenting Reactive Course 101:  We need a "barreling-out-of-an-airplane-and-my-ripcord-isn't-working" plan.  STAT.

We frantically search online for the nearest toy store and my husband hurriedly heads in an attempt to exchange the Darth Vader mask for another Iron Man mask.  The store is about to close in 30 minutes.

*  *  *

On one particular day recently, I become unhinged.  A very different Dark Side creeps in and I cry a lot.  Far more than my typical vanilla  day.

It's pure and simple.  I hate this Cystic Fibrosis.  I hate it.  I hate it.  There are very few days I let myself hate CF and let the Dark Side creep in, but on this particular occasion, the black becomes an emotional suck from my brain.

I rattle through my mental bullet point list of all the dark it brings.  I don't mean to get all Debbie Downer, but sometimes it just comes with the territory.


I hate washing and sterilizing the nebulizers every day...       I hate calling medical supply companies to exchange the compressors or the nebulizers when they break (which it seems they often do)...    I hate arguing with insurance companies...    I hate being handcuffed to CF which impedes spontaneity to just run out the door somewhere without thinking about the rest of our day...     I hate the ultimatums and the demands for the boys to take their pills with every meal or finding a stray pill that has fallen on the floor because my three-year-old is too busy to sit still...      I hate the mental log of how long it's been since they started eating, how much they have actually eaten and if they have enough digestive enzymes so they won't get a stomach ache...    I hate begging the boys for more bites during a meal, trying to coax them with different things to eat, and the panic that fills me when they don't eat...     I hate the bellyaches and coughing...     I hate trying to console my boys with no real good answers when the belly aches or coughing arrive...     I hate the germ vigilance which is an ORANGE alert on a good day...     I hate watching my boys struggle with fatigue during their evening treatments, when all they want is to crawl in their beds and rest. Like watching  Dylan's little head bob back and forth fighting sleep through the shaking and rattling of his treatments...   I hate that Michael looked at me recently and said, "I hate vest and mask" when I explain it's time to do treatments...  and I hate the daily grind of it all.


Most days I power through and have an upbeat attitude.  But there are the occasions where it's just very overwhelming or just frustrating.  There are the moments where I wish it were easier and we didn't have to take so much time out of our lives focusing on CF.

We head to NYC for our regular clinic visit.  A normal clinic could take a couple hours.  This particular one takes seven hours from doorstep to doorstep.  Minus the drive time to the a appointment, we are talking 5 hours, yes, FIVE HOURS, sitting with medical professionals reviewing the boys' every detail.  What the boys are eating, what medications they are taking, what their activities are, how their digestion is doing, how they are growing, if they are coughing...  the list goes on.

We start our day off start our day with a GI doctor to discuss Dylan's belly woes.  For the past two weeks he had chronically complained, "My tummy hurts."  With no diagnosis that Mommy MD can make, I have to go through every detail with the doctor.  She is a kind doctor who listens and reciprocates.  She dialogues and engages.  I like her.

Dylan is completely disagreeable.  He refuses to get on the scale for weight or height.  Shocking.  I tense.  There is a loooong haul ahead and this is not a good way to start.  We move on to Michael whose meds and stomach have been relatively well balanced lately.  Michael is cooperative and gets on the scale...  calculations minutes later reveal that he has gained almost two pounds!  Yee haw.  After Dylan gets over his standoff about getting his weight and height taken, he finally agrees.  Both boys have gained weight.  I feel my shoulders relax.  We decide to adjust Dylan's meds and stay the course for Michael in terms of his dietary meds.  I realize as we leave the office with the GI doctor, that the blows could've been much worse.  Hey, that wasn't so bad.

I meet with the social worker to discuss Michael's plan for Kindergarten next year.  While shorter than the other sessions with other CF team members, I scribble furiously and take everything in that I can.  Will the school provide an aide to help him...?  right, got it.   When will the bus pick him up for school...  will he have time to complete his treatments?  right got it.  Will he have a buddy to walk with him to the nurse's office...?  right got it.  My pen writes and my brain tries to keep up.

We move on to meeting with the physical therapist (our old clinic called it a "respiratory therapist") to discuss the children's lung health and what we do regularly to keep them -- clear.  This means what are we doing to keep the thick, sticky mucus out of their lungs to avoid lung infections.  The therapist is nice and super engaging with the boys.  Frankly, I am sure they think she is pretty and are excited that she has 'toys'.  Bubbles for blowing.  Jump ropes and hula hoops to be active.  She has great bags of goodies for them that are all tools to help in being active and to support breathing activities for their lung health.  So these boys are like putty in her hands.  Although, Michael becomes shy when she asks him to show his skills at coughing, huffing (google it) and deep, forceful breathing.  She works through to understand his knowledge of effective ways of clearing the junk that forms in his lungs.  Since he is five, it is evident that we are, well, still working on it.

We move on to meet with the dietician.  This is the homma-jomma meeting.  I like our dietician.  She listens and is supportive.  She is likable and works with me.  This is the one where she and I lay it all out on the table together, like two skilled architects laying out the blueprints for a towering skyscraper.  We develop a few new ideas for eating and nutritional supplements and move on.

Then time with the pulmonologist.  He asks specific questions about the medications each boy is on and their dosing.  Then we go through an abbreviated list of what's been going on.  There is a lot of head nodding and clicking on his computer.  Then he examines the boys and there is small talk in between the eyes...  the ears...  the nose...  listening to their chests and their tummies.  He inspects their fingers (because CF can cause clubbing - google it).  We start to wrap and pack the bags we have gathered for our clinic journey.  And then the doc hits me with the reminder...  "Oh, we almost forgot cultures."  Oh crap.  Both boys hate having their throats swabbed.  We do it swiftly and it takes almost all three adults to hold Dylan down...  Michael on the other hand complains but is a really good boy.  His experience has taught him that although it sucks, it doesn't last for more than a second.  I breathe a sigh of relief and we are on our way.

I hate that we have this drill every two or three months.  Days like this are exhausting and overwhelming and a clear reminder that much of what we do is not normal.  And IT TAKES A LOT OF TIME OUT OF OUR LIVES.  I hate much of it, but weirdly, I wouldn't have it any other way.  After all, things are pretty good.  Just maybe it's that Force underneath it all and maybe I am more of a skilled Jedi than I realized.  Thanks, Yoda.

*  *  *

Dylan is fast asleep in his toddler bed.  I notice a massive bump to his right and draw back the covers.  I see he has tucked himself into his itty-bitty bed with his prized Iron Man mask at his side.

I chuckle when I see the image and head to collapse into bed.  The house is quiet and I am laying in bed watching junk TV...  My husband arrives home with a second Iron Man mask and looks weary. His exchange mission was a success, but barely. He explains that he got the last one in the store, which was hidden behind a different mask.  And not shockingly, just as the store was closing.  He places the mask on Michael's bed so he will find it the next morning when he wakes up.

We wake the next morning to thundering footsteps in the hallway and the mechanical repeating sound of "I am IRON MAN....Take them down Iron Man".  Followed by loud, rapid gunfire.  But the fund quickly halts and we hear Michael complain that we didn't get him the "right" Iron Man mask because the color of the LCD light inside his mask is slightly different than the one Dylan has.  The Dark Side.  We press Mike to understand that he should be grateful, not critical.

*  *  *

Weeks later, I am shuffling through my evening.  I pick up random toys around the family room and ones that have made their way onto the kitchen counter and dump them in a bin.  My thoughts race to the Dark Side of CF.  Often hidden, but lurking.  And most times, I am equipped to handle it with my Mommy light-saber.  As I chuck a toy into the bin, I realize I have been holding my breath, lost in my thoughts about the boys recent periodic coughs and lack of eating.  I make myself exhale.  I wonder what adventures await tomorrow.

I pour a glass of wine among my tidying the house and enjoy the quiet minute.  My husband is at work and the kiddos are fast asleep.  I walk outside to pick up mail as dusk falls on this evening.  It smells like summer approaching.  I notice something on the stoop out of the corner of my eye.  A brown unassuming box.

I drag it in.  I strike the tape on the box with scissors and rip it open with a pop!  As if to taunt me, there he is - again - staring me in the face.  I can't stop laughing at Lord Vader's head in the brown box.  My brother had sent another mask to us.  In good fun.  And to give me a proper laugh.  It worked and it is greatly needed.

The Dark Side is always around.  But sometimes it takes a Jedi with a sense of humor to triumph over evil.  I put Lord Vader in his place.  Literally and figuratively.  The menacing helmet of one of the most feared villains in cinematic history stares at us daily, sitting atop our television.  His lordly presence is a constant reminder that it is, in fact, possible to strike down the bad and find the good.  Especially one laugh at a time.

"When you look at the dark side, careful you must be ... for the dark side looks back." 
- Yoda, Dark Rendezvous

Wednesday, May 9, 2012

Building Blocks.

Little red, yellow, white and blue bricks.  Orange and green bricks too.  One stacked neatly on top of each other.  Each depending on the next.  All working together harmoniously to create one stunning masterpiece.  One missing piece or one misplaced block alters the perfect outcome.  Sequence is critical and the meticulous detail is a skill.

Sounds like a self-improvement workshop.  Or some show on National Geographic.

As we near Michael's 5th birthday, I become keenly aware of building blocks.  Especially since LEGOs have trickled all over our lives...  and my floor.  I mutter four-letter words every time I step on one for a middle-of-the-night bathroom run.  Or when I see them creeping around the baseboards.  Or in neat little piles on my breakfast bar.  We are fast approaching full-throttle addiction.  The minute Michael gets a new set of LEGOs he runs in the house and, PLUNK!, plops the box down ready to go to work.  We notice he is precise and laser-focused.

My brilliant brain decides that this LEGO obsession is a good thing.  We have moved away from action-packed heroes that induce aggressive chest-thumping boy behavior and, instead, moved on to something that is quiet, thoughtful and creative.  I watch as he hurriedly flips the pages of the manual of instructions.  Michael calls this a "menu".  His creation takes less time than if I built the same project.  When he is done, he holds up the re-engineered car, he cheerily exclaims, "Wook, Mommy!  Wook!" and holds up the spaceship or car with a sparkle in his bright eyes.

For his birthday, we celebrate with a few friends and all things LEGO.  There was the LEGO Cake and the LEGO cookies.

And don't forget the gifts including Michael's own personalized LEGO lab with color sorting bins and a LEGO table.  (Ideas pages noted at bottom with links.)  Let's be honest here, people, these were also partly for my own selfish, organizing self.  This LEGO lab is meant to avoid the 3 am scorpion LEGO attack and the orphaned LEGOs that have found a new home on the floor near the dog's water bowl.  This super cool new lab is just as much for me and Daddy as it is for him.

All the of the birthday excitement for Michael became two straight days of unapologetic LEGO science.  He was like a mad scientist seeking a new potion.  Concentration of a heart surgeon.   Detective work of a sleuth to locate the right brick even Sherlock himself would be proud of.

I watch him doing his treatments while creating something new and different.  He passes the long arduous treatments lost in these tiny building bricks.  They are simply his mental therapy.  I watch as the vest he is wearing that fills with air and pressure.  It rattles and shakes him as he works hard to find a tiny piece in his bin.  I watch intently as his mask steams.  The medication billowing out of the holes of his mask and occasionally getting in his eyes as he shifts around searching for the next brick.

This amazing little boy is not detoured with all the vibration, noise, and distraction.  He is more focused than ever.

Lately, bedtime books have been replaced by an extra few minutes of building.  Michael's intense eyes dilate and refocus as he draws a tiny brick to the project.  He fumbles to get the right angle and then, 'click', the brick secures into place.  I silently look on and understand those building blocks he is putting together support his own delightful creations.  Uncharted adventures of his imagination.  New games and ways he likes to play.  These LEGOS are enchanting, each brightly colored and individual, yet each contributing to a greater vision.  His vision.

It is the night after Michael's LEGOmania birthday and he decides to go on an organizing binge.  A discarded, hopeless LEGO project that has sat broken and scattered for months now has new life.  Ironically, Michael is completely excited to demolish and properly store the pathetic Star Wars LEGO set (that he has rebuilt twice already.)  Apparently, now this kid understands the benefit of placing each one in its proper bin so he can find it again when builds something new.  Even though it is two hours past his bedtime, Michael is determined to finish his clean up.  Who am I to argue?

I watch as Michael concentrates as he takes apart each section and ushers it in the correct bin.  I realize as I watch his little hands struggle to break some of the tiniest, most stubborn bricks apart that his LEGO hobby is developing tremendous coordination and strength in his little hands too.  In this observation, a realization lands on me.  He's five years old.  A willful, thoughtful individual.  And whose hands are not as little as they once used to be.

I am a crazy lady about details, organizing, and proper order.  Beyond the fact, so I am told, that he is an exact mini boy replica of me, the DNA personality link materializes right before my eyes.   I chuckle as I watch his determination to clean up and put all his LEGOs in their proper places.  He is just like me.  He must finish.  Stopping is not an option.  It is considerably past bedtime, and my own organization instincts are fully supportive.  But my mommy instincts tell me, "This kid's got to go to bed!"

Michael negotiates repeatedly for "just one more pile of bwocks".  And then he goes for more.  "One more, Mom"...  "No, wait, just one more"...  And "For weal.  For weal.  This time, Mom.  I mean it, this is it"...  He grabs a handful of white, black and grey bricks and holds them behind his back.  He looks me firmly in the eye from across the room to make his case.  I can't help but laugh at the seriousness in his expression.  As I laugh, I see him break a smile.  It's like the world is going to end if we don't clean up every LEGO in the world.  And he loves every minute of it.  His determination is that of an army general heading to battle who wants all his men in their precise place.  He expects no less.

I finally have to intervene and tell him it's time to brush teeth and get into bed.  "The LEGOs will be here tomorrow and you have school tomorrow and need rest," I direct his attention to the bathroom.  He begrudgingly goes, but not before his shifts his attention back to the half dismantled project.  Michael lowers his head in Charlie Brown style and goes to brush his teeth.

I head downstairs and after a short period of silence, I begin hear rattles and clunks of Lego bricks well past his bedtime. It only lasts a couple minutes.  It stops.  I am guessing that he must've needed to finish a few more to have the right stopping point.  I wait another half an hour and things are serene and quiet in my house.  I tip-toe upstairs to find him asleep in his LEGO dreamland.

The next morning, I awake from my groggy haze hearing clunk! rattle...  clunk! rattle...  clunk! rattle. I stumble into his room in my pre-coffee fog.  The kid is at his clean-up best.  "Wook, Mommy.  Ta DAAA!  All done!"  He is proud that he is caring for his LEGOs in such a grown-up way.  All neat.  All tidy.  This kid is good!  I am impressed and pretty certain that this is the first time in life he has shown interest in cleaning up...  anything, that is.

Those tiny blocks are also our life lessons.  Built brick upon brick, and then broken apart they can be recreated in a new and different way.  Each in a pile is no more than a mess on the floor of a family room.  But individual bricks in their perfect and thoughtful spots create the harmony of a larger masterpiece.  A miniature engineering project of life.

I add another brick atop my most recent creation in my life...  As I step back and take inventory of the project, I find the perfect spot to place it.  As I snap it into place, I feel my stomach drop and my heart stop just as it did five years ago in that one moment I saw Michael for the first time when we welcomed him into this world.  Pure adoration and complete awe.  He is five and now building his own path ahead.

As for my own building, it's another memory and another moment, I won't ever quite forget.

*   *   *   *   *

 *I was able to create these ideas courtesy of some pioneers before me (i.e. some pretty crafty fellow bloggers in cyberspace).  Check out these great stops if you are interested in creating similar things:

Cookies -- I didn't follow this tutorial, but it's a great one.

Cake --

DIY Lego Table -- Ikea Lack Side Table, 4 Lego baseplates, contact cement, and some patience.  You can do an online search for "DIY Lego Table" and you'll find a variety of different ways.

Lego Organizing for Our Lego Lab -- at

Friday, April 13, 2012

Sweet Tooth.

Spring Break.  A collective sigh from all school children.  A departure from the classroom monotony and lessons.  Fun.  Sun.  And, for the lucky kids, a trip somewhere with family.

Spring Break for the parents of preschool age children is feared.  All moms who adore their sweet little toddlers are quaking with nervousness as the time approaches.  An entire week with my kids -- now, what to do?!  How will I keep them occupied?  One answer.

Doctors appointments.

Well a couple appointments anyways.  We kick the week off with some fun RAST testing for Dylan's food allergies.  It's almost an ironic reminder leading into a holiday weekend of the seriousness and regard for Dylan's food allergies.  I sometimes forget the whole food allergy thing...  seriously.  It may sound insane.  We have Epi-Pens and the whole sha-bang.  But my brain has hardwired CF to the top of the list.  I run everything through the "CF filter" so to speak.  So the annual trip to allergist to be reminded of how much more diligent I should be in is definitely just what I need.  (Laying sarcasm on heavily here.)

The new allergist is located in New York City at Mt. Sinai on 5th Avenue off of Madison Avenue.  Funny how years ago, 5th Avenue and Madison Avenue had very different meaning for my young, shoppaholic self.  A lifetime ago.  A wardrobe ago.

My entire morning starting at 6 am battling New York bound traffic over the GW bridge... obliterated.  The allergy test results prove what we already knew.  Yep.  Allergies.  You bet.  Stay focused.  Read labels.  And be vigilant.  Repeat.  My heart sinks and my hope for another year of peanut butter gluttony has - poof! - disappeared.

The remaining days leading up to Easter weekend are spent with my boys building forts inside and playing in the yard outside, when they are not in fist-fights and screaming matches, that is.  Well, until Friday, more specifically Good Friday.  Weeks back I scheduled the boys' regular dentist visit for the week of Spring Break.  We had been needing to find dental care in New Jersey, but other things have trumped seeing the dentist.  But now it is time.  When scheduling the appointment, I guess that I didn't connect the dots that I had scheduled the appointment on Good Friday leading into Easter weekend.

With my husband off work, it is ideal.  On this day, the parent to kid ratio is 2 to 2.  Thankfully.  We are game on with our man-to-man defense.  Our family walks into the beautifully decorated family dental practice.  Lovely ivory wainscoting paneled walls.  State of the art gold digital frames on the wall cycle kid's artwork they have gifted the office.  The reception area has a museum feel to it, but warmer and more inviting.  There are bright red mod sofas and a TV with kids shows.  I sit down at a funky white table and coordinating chairs to begin sifting through the pile of paperwork and my pen scribbles furiously.

NAME.  DOB.  ADDRESS.  INSURANCE.  BLAH BLAH BLAH.  I wish I had a dollar for every piece of medical paperwork I have filled out in my life.  I'd be rich.  The next thing...   LIST ALL MEDICATIONS OF PATIENT.  Ha ha.  They must be joking.  I didn't even think of it since we were at a dental office...  not a traditional doctor's office.  I should just carry around a medication list so I never need to scribble furiously again.  My hand begins cramping from my wrist to the heel and through my palm.  As I continue through the sheets of information, I realize I have to write everything all over...  TWICE.  Groan.

As we are waiting in the brightly lit, immaculate office, Dylan loudly asks for COOKIES.  Then he demands FRUIT SNACKS even louder.  He makes his wants clear in such a billowy voice, the message reverberates harshly off the dark wood floor and the walls.  I could swear I heard an echo.  Completely awesome.  My kid in a dental office, meeting a new dentist for the first time, is DEMANDING sugary cookies and candy.  My husband I laugh and tell him no, not now, he has to visit the dentist then we will think about it.  It's a superhuman feat, but I finish with the necessary forms and hand them over to the receptionist.

After some time, my husband steps out for a work conference call.  Now it's the dreaded Zone Defense.  The dentist comes out greets us and walks us into his office to talk first.  We discuss the boys' Cystic Fibrosis in-depth and my keen awareness about the need for critical dental care.

You see, CF medications and nebulized treatments can sit on teeth and cause greater risk for staining teeth.  They can also erode surfaces of teeth and create an ideal environment for cavities and tooth decay.  Layer on top of all of that the CF high-calorie diet including milk products that can sit on teeth, the sugary "crap" calories just to pack some calories in finicky tots, and the super busy schedule "it's easy to forget the morning brushing ritual".  Those little mouths are a cavity's dreamland.

Dylan and Michael play with the dentist's calculator and shiny silver lamp while we talk.  I can't help but shake the Willy Wonka images that are floating in and out of my head as the dentist scans the paperwork.  Monstrous rainbow lollipops.  He reviews the medication list gently tracking each one with his index finger.  Gooey taffy gum drops.  He looks up through his glasses, smiles tautly, and looks back down at more family history.  A chocolate river.  He finishes reviewing their lives in black and white medical paperwork as I rub my jaw anxiously.

My husband meets up with us again as we arrive at a room with an empty dental chair.  Michael pleasantly hops up in the chair and listens to all the directions from the dentist.  He kicks back with his feet crossed casually at his ankles and watches TV while the dentist works away to clean and examine his teeth.  Dylan climbs around the room and plays with the stuffed animals.  He glances over at Michael occasionally.  Then Dylan tries reaching for things on the counter.  It's a close call as I grab for his little hand trying to reach into the 'hazardous materials' garbage hole in the counter.  He is anxious, bored, and trying to find anything to entertain himself.  My husband and I look at each other knowing that Dylan's turn is coming next.

And it won't be pretty.

When Michael finishes, he hops out of the chair and into my lap.  My husband tries coaxing Dylan into the seat.  "Look at the cool TV you can watch"...  "Look at the monkey on the dentist's lamp"...  "You can hold the lady bug"...  You can hold Mommy's necklace..."  All to no avail.  Dylan begins to resist when Daddy tries to pick him up and put him in the chair.  He goes limp.  Then he slides off the chair.  Then he hits, kicks, whatever he can even the dental assistant.  The topper is when he starts crying and throwing a full-blown tantrum.  He screams and begs for fruit snacks.  Or cookies.  Or both.  "I want froo nacks.  Froo nacks.  Cookies!!  I want Mommy!  Froo nacks!!"  These were often used for bribes to get the boys to stand on the scale at the Pulmonologist's office to get weighed.  It has come full circle to embarrass me in the dentist's office.  I can feel myself flush and I hug Michael.

It takes the strength of my husband and some delicate work by the dentist to get an abbreviated flouride treatment in Dylan's little mouth.  Poor kid is still screaming for fruit snacks through the entire 4 minutes.  The scene is laughable and insane.  As hard as it is, the dentist tries to console me as my face is contorted probably conveying a freaked out mom expression.  He explains Dylan is not the first with this reaction and unfortunately there are certain cases where they stop and others where they proceed.  Clearly, in Dylan's situation it's best to proceed.  Let him experience a dental visit once to understand he won't be hurt, it isn't that scary and he'll then have some time to process it.  I can't tell if it's scarier for sweet Dylan.  Or me.

As tough as it is, I know that the dentist is quite possibly right.  As we leave, Dylan is heap of tears and frustration.  A consolation prize of a tooth sticker is just not acceptable.

*  *  *

Two days later, I wake up Easter morning to use the washroom.  I am groggy and stumble out the door into my dark bedroom.  I see Michael's light turn on.  I peak through the crack of my bedroom door and watch him appear at his bedroom door.  He is standing on the verge of his Easter morning adventure in the doorway to the hall.   His messy hair is standing straight up on one side and he is staring down at the floor.  I can tell he sees them.  He looks back and forth and smiles.  His amazement becomes clear across his face.  I bolt into bed so he won't see me.  He bounds into our room.  "He came!  There are tracks on the fwoor.  Come see!"  I grab my camera and head out with him.  My husband right behind us.  I start snapping pictures as he follows the trail of tiny white powdery rabbit prints.

He beams a beautiful smile that would make any dentist proud when the tracks lead him to two brightly colored empty Easter baskets.  This four-year-old knows exactly what to do.  He starts right to work searching for his treasured eggs.

After Michael has located all of his eggs and then some, he helps smiley, groggy Dylan to find all of his.

Michael points and excitedly shouts, "Wook there Dyl!  Wook there!"  and "Aww, siwee Bunny.  That one is tricky.  Wook.  He hid one there!"  In no time, a collection of plastic eggs litters the floor with goodies, coins and toys.

It is a day of a full-on assault of sugar.  A candy bonanza of the Easter Bunny's doing.  A family tradition of Fannie May Chocolate Foil Wrapped Eggs and Bunnies.  Followed by Sweetarts.  Skittles.  Starburst (or as Dylan calls them, "StarZurst").  Tic Tacs.  LolliPops.  Mentos.  And who knows what else.  A pastel mosaic of bubble gum pinks, lemony yellows, spring greens, blissful blues, and pleasant purples.  What that bunny thinking?!  By 8 am I make both of them brush their teeth from the onslaught of sugar already in a tepid bath in their kid mouths.

All throughout the day, Dylan hoists himself up onto the counter to retrieve his bowl o' candy.  This child needs no help.  Just plants his hands on the counter above his head, engages his core strength, and pulls himself up and onto the counter.  His strength and agility have always astounded me.  We discourage him from doing this but it doesn't matter.  The treasure chest on the black granite counter is just too tempting.

Every holiday I dump the boys' candy into a bowl (or two)... this goes for all the kid-sacred holidays.  Halloween, Christmas, Valentine's, Easter...  This way, I can monitor how much they are eating and when.  With chocolate and other high-fat goodies, I need to give them enzymes beforehand so they don't get belly-aches.  With peanut and nut allergies lurking, all candy monitoring in the kitchen is a must.  And while we are liberal with candy dispensing and eating, I do want some sort of control over knowing what they are putting in their mouths.  That Damn Easter Bunny.

By the end of Easter night, bedtime has been delayed a good hour.  Treatments take longer to get underway and I haphazardly turn on a new Backyardigans show...  Michael points out that the show is really long.  I check the DVR and realize that I teed up an hour long Easter special.  So I let them enjoy the rest of Easter night and stay up a bit later than usual watching their show.  The machines roar and they listen intently through their headphones.  I watch the show with no sound, just the whirr of the machines helping my boys with clearing their lungs.

It is bedtime and the whole family is exhausted.  Time to brush teeth one last time...

The boys are sporting their new pajamas, quite possibly the only practical gift left in Easter baskets and are ready to brush their teeth.  They discuss the colorful dragons that adorn their new jams.  I gently help Dylan scrub all his teeth as he sings octaves, higher and higher of "ah.  Ah.  aH.  AH!!"  I remind him to spit.  Same old story.  He swallows and then blows a raspberry into the sink.  I shake my head and laugh.  I know that some day, not very far off, I will miss his inability to spit.  It's only a matter of time.

Afterwards, I ask the boys to take a photo together to commemorate the day together.  Dylan cheerily agrees, Michael has different thoughts.  We spend time disagreeing about taking a simple photo.  He digs in and doesn't back down.  He's like a teenager that just doesn't want to cooperate.

After a total disagreement and then a Mommy-Michael make-up of hugs and "I'm sorry's", all is right as the boys settle into bed on Easter night.

I collapse into bed.  I am feeling exhausted and not surprisingly, I feel like I am coming down with something.  I realize that I haven't yet brushed my teeth.  Bah!  That Easter Bunny.  My mind slows.  I get distracted thinking about that Easter Bunny and all the magic of the day.  Michael's smiles and their cheers.  The excitement of each colored egg and the treasure revealed each time.  The hustle and bustle of the week.  And I try to settle into my bed brain with the same blessed perspective of our lives.

Before I know it, I am drifting off in a pleasant slumber.  The last thoughts stroll through my head before I fully fade away...  Yeah, pretty sure I didn't brush my teeth...  Damn Easter Bunny and tooth decay...  Well, at the very least the boys brushed theirs...

Even with the food allergies.  And the tantrums.  And the doctor appointments.  Even with the arguments.  And the regimen of CF treatments.  And the stressful spring break week.  And all the insanity of each sunrise and sunset.  Even with a likely few cavities along the way...

Most days, being a parent is a pretty sweet deal.
This much I know.

Sunday, March 25, 2012

Tick tock.

Countless times through out the day, I hear my sweet little boy sing off-key...  "Gwick, gwock, goes da cwock, time to put our work away..."  Dylan's little musical tune from school got me today.  Tick, tock goes the clock, time to put our work away...

I am sitting at the computer mentally logging how we are going to motivate, rally and cheer on friends and family to raise money yet another year to find a cure for our boys.  I tap-tap-tap on the keyboard working to find the right words to express my heartfelt emotion.  Awe.  Inspiration.  Heartache.  Moments of my boys' reality swirl together with words like "hope", "life expectancy" and "better days ahead".  As the writing and thoughts take hold, my mind clutches all the images in a day...

Every day feels like a grind.

Because it's just life, I sometimes forget what an actual grind it is.  The medical equipment.

The repeated, daily sterilizing of said medical equipment.

The loads of medications.  Oh, the medications.

The mountain of insurance paperwork.

The doctor's calls.  The stress every time I see Dylan lick something that could potentially make him very ill...  he has no idea.

And the listening.  Listening very intently for illness.  Listening for coughs and how they sound.  And in this house...  which kid was the one coughing?

I think about how Michael's congestion has worsened over recent days.  I walk up to Michael's door in the early hours of the night to check on my sleeping angel.  Before I can even begin to crack the door, I hear his gurgled breathing.  It is loud and sounds downright uncomfortable.  A sea of smothering snot is audible and there is very little I can do to help him.

My shoulders shrink up as I cringe.  I close my eyes and gently touch his sweaty forehead.  He is not feverish, thankfully.  Just too many covers on this unseasonably warm spring night.  His brightly colored plaid quilt is shoved at his feet, but his blanket and sheet are cinched up to his chin.  I gently loosen them and pull them to his hips, so Michael can cool off.  His favorite Bumblebee Transformer pajamas shirt is revealed.  Yellow and black.  A good superhero fighting evil against the clock.  To save the world.

I remember what it was like to be a kid and have a cold at bedtime.  I have always hated going to sleep with a cold as a kid and as an adult.  The pounding sinus pressure and the shifting of the congestion from one compartment of the sinus cavity to another.  As a miserable allergy sufferer in the spring, I distinctly recall even on cool summer nights having an awful stuffy nose and not being able to comfortably breathe.  But honestly, I can't imagine what it's like to have my sinuses and lungs filled with extreme congestion.

Friends who are adults with CF have equated it to breathing through a straw.  Or never truly feeling satisfied when they breathe in.  Searching for a deep breath, they no longer know what the sensation is any more.

Michael's eyes are closed.  He is peaceful in the sounds of snorting, sniffing, and bubbling.  I can only hope that he is peaceful all night and gets much needed rest.

The morning greets me with Dylan announcing "Mornin' time.  Mornin' time."  I crack my heavy eyes and look at the clock.  Humph.  5:51.  He climbs into bed with me and demands juice and wants to watch shows.  Poor kid needs a diaper change beyond words.  Groan.  My husband is out of town on this morning and so Dylan plants himself comfortably on my husband's side of the bed with no complaints.  I make him lay quietly with me for another few minutes.  Even if for principle's sake to get the clock to pass 6:00 am.  I cannot justify getting up with my kids before 6 am.

After some time, he trumps.  It's now 6:31.  After I have changed him and offered him a sippy cup of diluted juice filled to the "tippy top", he is satisfied.  I crawl back into bed and try to slip back into my groggy light sleep.

Minutes later I hear it...  Deep.  Chesty.  And breaking.

Michael is awake and coughing in his bed.  I pause and stay very still listening.  I zero in with my ultra-high-tech mom radar listening device by fading down the Backyardigans music coming from the TV and the grumbling, stammering dog.  Little footsteps, metal clicking, footsteps coming closer.  More coughing that is getting louder.

Michael arrives in bed with me and Dylan and he works to curb his coughing.  I can hear the crud lodged in the tiniest recesses of his sweet little lungs.  At least with the coughs I know he is moving it around, which is part of the battle.  Then there is the "getting it out" and the controlling impending infection.  Translation:  Calling the doc for meds.  He is pleasant and cuddly.  I feel him shift downward firmly and settle into laying at the foot of the bed.

Once the next show has wrapped up, the vibrant green numbers on the clock report, 7:08.

We all hop out of bed and head downstairs and begin our day with respiratory vests and nebulized medications.  Same morning drill.  Same grind.  On this morning, the gears in my head calculate the timing of the day to get in extra treatments.  It is imperative that we break up that cough.

In my reflection of the morning at the computer, I glance at my watch.  Oh no!  It's time to go get Michael from school.  I bolt up from my daydream.  It's now a race to get Dylan in the car and strapped into his carseat to make it on time for Michael's pick up.  The next day he would start antibiotics for the continued sinus trouble and cough that is now plaguing him.

Days later, we find ourselves on a lazy Sunday evening embarking on a family walk.  Our bellies full of dinner, (honestly, the boys' bellies full of high fat custard-style yogurt, but never-the-less full), we decide a walk together would do us good.  We start off awkward and fragmented.  Pausing for the boys to look at goregous spring flowers like dandelions and then again for the dog to do her business, we can't seem to find a fluid stride.

It isn't until the boys are super wild and distracted that I decide to walk ahead with the dog and Michael.  I leave my husband back to wrangle Dylan, and propose to Mike that we have a good run the rest of the way home.  He is argumentative and finding excuses, no matter, I begin hastening my stride.  He starts to run too.  The dog is loving the jog and soon enough we are a pack fully running together.

Michael slows and complains that he is tired.  But I know better.  I challenge him we run a bit farther and then I suggest we make it to the bend where we turn onto our street.  We race all the way to the street sign.  I am listening again.  He sounds clear.  He seems good.  His words say he is tired, but all indications are that this boy is doing good with the exercise.

We finally arrive at the narrative street signs and we pause to look a back and search for Daddy and Dylan.  I suggest to Mikey that we can turn onto our street to walk home since I know he is tired.  "No, Mommy.  Why don't we run?!" he exclaims.  I smile and say, "Well, I know you are a GREAT runner, but it seems to me that you were saying you were tired, so maybe we should walk."  His blue eyes dance against the gray overcast sky.  There is a sparkle and his lips curl up with a sweet smile.  "No, let's run again."  And so we do.

We begin down the long street in a good even pace.  We discuss how he trick-or-treated at these same houses months ago in October.  "I think I got ten hundred candy that night," he recollects.  I myself remember the family of deer we saw as we slowed and crouched to watch them pass, just maybe a 100 feet from us.

Then suddenly Michael says, "Mommy, look!  We have only a minute and twenty seconds!  I am watching my timer on my phone.  They are catching up we better hurry if we are going to win the race."  I start laughing in my faster, airy breath as we jog.  This kid is challenging himself.  He is keeping his own timer.  He continues to give me status reports all the way down the street on his imaginary stopwatch - sometimes the time even ticking backwards.  At four, he loves math and time, but is still learning the concepts fully.  Whatever the case, I am loving the energy, excitement and enthusiasm of his appreciation of the jog together.  It is pure joy.

My running mate, trusty pup, and I all arrive at our driveway.  Michael exclaims, "We won the gold medal!  And we beat Daddy and Dylan."  I remind him about being a good friend and about sportsmanship.  We are not spent, but feel great at getting our blood pumping.  We ran the last stretch, probably a good 5 minutes - a long way uninterrupted for a 4 year old.  Back all the way to our driveway.  My radar detected no coughing.  No complaining.  I can't believe it.

As the days pass, the grind is exhausting.  On all of us.  In many ways, the grind keeps us going.  And yes, the clock is indeed ticking.  In my private moments, I can see through the lenses that remind me that each day is precious.  Each breath is so irreplaceable.  There are the moments where I feel like the sands are slipping through the hourglass as scientists in the lab try to work and rework that cure for my boys we so desperately need.

But in this run, I find something new.  Alive.  And beautiful.  My son's stopwatch is ticking.  Is it ever.  It becomes clear to me that he is running his own race.  On his on time.  He is setting his own pace.

And winning.

Every day.