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.

HELLO?!  HOW DID WE GET SO LUCKY IN THE LOTTERY OF SCHOOL NURSES???!

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...

HOW DID WE GET SO LUCKY IN THE LOTTERY OF SCHOOL NURSES???!

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...

Christmas Magic.

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

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

"Michael has pink eye."

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

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

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

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

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

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

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

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

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

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

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

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

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

Tis the Season.  GROAN.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Christmas magic.  And Sneaky Santa.

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

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

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

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

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

Pennies and Change

Giving thanks isn't as easy or as frequent as it should be.  When I stop completely, hold my breath, and be very still, I can pause.  It is then that I can recognize all the blessings that I have.  Each year I have a better, deeper, more profound understanding of "giving thanks".  Maybe it's just part of the progression of life, of growing up.  You just don't have the same perspective when you are in your youth or even your 20's.  And the most important to-do of the day is figuring out where you're meeting up with friends after work for cocktails.

Throughout the year I add the metaphorical pennies to my "thanks jar".

Thanks for the food that is in our refrigerator.  Even the stinky leftovers.  Tink!
Thanks for a warm, safe home.  And that it held power through a hurricane and historic snowstorm this year.  Tink!
Thanks for a wonderful, supportive husband.  My rock.  Tink!

And for the simpler wishes of thanks.

Oh, thank God the boys are sharing!  Tink!
It's strangely quiet.  Ahh, it's nice.  It will change soon, but for now it's good.  Tink!
Mmmmmm this  cup of coffee  glass of wine tastes great.  Tink!
Massive sigh of relief as I grab the back of Dylan's hooded sweatshirt as he runs into the street.  I am yank him back and pull him onto the safe sidewalk with me.  Oh thank GOD he didn't just get hit by a car.  TINK!

I never understood as a kid how my mom's answer could be the same every year when I would ask her what she wanted for Christmas.  Same response.  "World peace."  I would crinkle my face in a dumbfounded stupor and try to figure out the best sweater or scarf I could get her, certainly not understanding what she meant.  And as I got older, I would get annoyed and roll my eyes, knowing that I couldn't wrap up "world peace" nicely and neatly with a bow.  It was aggravating.  Now with each year of wisdom and each passing day of life, I get it.  I understand what she was saying, because I am starting the feel the same way.  The things that I want, you can't really give.  And now whenever someone asks me...  what would you like for Christmas? I draw a blank.  There are times I am close to saying, "world peace" for lack of a better answer.

This time of year is not about getting, as you believe when you are a child, but about giving.  As we approach the recognized day of giving thanks, I absolutely know there is much to be thankful for.  But mostly this year I am thankful for

Progress.  (Tink!, Tink!, Tink!)

After dropping Michael off at school, I load Dylan back in the car and head to a routine doctor's visit for (shockingly!) myself with Dylan in tow.  I typically prefer not to bring him along, but I know that the appointment will be brief.  It is my only option these days.  He is sound a asleep in his carseat, his little eyes closed and very still.  His head slumps to one side and his long eyelashes rest gently.  I am relieved that he will get a snooze in before getting into the doctor's office.  I arrive at the medical building, find a parking spot, and park the car.  The windshield wipers whisk back and forth as the cool November rain drizzles and patters on the car.  It is a dreary, gray day.  I call my mother to catch up and then fiddle around with my phone for a bit to let Dylan nap.  I stare out the windshield and notice the pretty fall leaves have crumpled and decayed all over the parking lot.  They litter cars and landscaping all around.  The afternoon puts me in a cold mood.  The prettiest part of the autumn is now gone.

Once Dylan has napped nearly an hour it is time to head into the doctor's office.  I gently stir Dylan and pick him up.  His weight is significant and I nearly drop him twice carrying him into the building.  But in his sweet, child-like way, he wants me to hold him.  And while he is physically pushing the limits of my carrying him, it is awfully hard for a mother to say no to holding her groggy child who just awoke from a nap.  I power through.

We arrive at the boring doctor's office that could be anywhere USA.  Ugly wallpaper, insane green carpeting and a laminate counter with a sliding window that cuts the office staff off from the rest of the world with one swipe of left-to-right.  Once in the waiting area of the office, Dylan's sweetness and agreeable responses turn vile.

Nowwwww, the complaining and tantrum starts.  Great.  "Bad Mommy," he repeats over and over again, his tone and voice getting louder.

Just as the tantrum escalates, the doctor calls my name and I scoop wiggling Dylan up into my arms.  A nice woman waiting helps me hands me my soaking umbrella fell to the floor during Dylan's tantrum.  "I have three.  I know how it is."  She smiles kindly.

We are quickly escorted (probably a smart move for the other waiting patients' sanity) by the doctor to a vanilla exam room with non-descript muted blue conference room chairs, exam table and desk.  While Dylan throws his tantrum, the doctor and I discuss a few things.  As he eventually calms down and the doctor and I strike a conversation.  I mention something about CF and she stops in a dead pause.  She flips the chart over and reads her past notes and then tells me that she had forgotten that I had mentioned my boys have Cystic Fibrosis.  She is a nice, older woman, tiny in stature, and firm in her listening the two times that I have met her.  She has a kindness but isn't much for lengthy chatter.

However, this time the small talk flows more naturally with Dylan in the room.  I think that she is stunned that he has CF.  She is interested and engaged.  I remember the last time I had an appointment with her and CF had come up, she said, "They have made great strides, you know."  Funny, "great strides" is symbolic and important phrase in the CF World.  It is the name for the the annual walk to raise money for CF by the Cystic Fibrosis Foundation.  Her choice of words stayed with me.  Maybe luck coincidental, but her words made me believe she followed CF, at least from the periphery.

In my experience, doctors are almost floored to meet a person with CF, since I am guessing it is part of every medical book, but in fact is pretty rare.  It is estimated that only one thousand babies are born with CF in the US each year.  I am guessing that meeting a real life, healthy person with CF is like seeing a myth in the flesh.  CF used to be such a sad prognosis.  And I am sure that chapter on recessive genetic disorders where CF is usually discussed obviously stuck with many clinicians.  Decades ago they read that mortality was something like 5 to 10 years.  For some, it's impossible to remove the decades of CF's reputation with clinicians.  They immediately digress to the CF of the 50's.  Not the CF of today.

"He looks great," she states with mild astonishment.  I smile and tell her that we work really hard at it, but that we are lucky.  Michael and Dylan have been healthy along the way.

"I just read something in the New England Journal of Medicine..." she prompts.  Obviously, she is very progressive and "in the know" on the latest CF news.  Or at the very least, she is keeping up with medicine in general.  I know exactly what she is talking about... a drug that we have followed closely since July 13, 2007 (the day Michael was diagnosed) recently made national headlines.  An article was indeed written in the same periodical she mentions.

The drug was shown to improve the cellular problem of CF.  It essentially appears to fix the broken CF protein in the body that interferes with the delicate balance of salt and water.  We are realists and know that the boys need another drug along with this one, which needs a considerable amount more data.  And that it needs to be researched in kids.  But I don't care.

It is groundbreaking.

It is remarkable.

It is now real.

And it's application for approval in now in the FDA's hands.  I acknowledge the news and share with her that we are completely hopeful and we do all we can to help make a difference.   We are advocates and raise money every year.  Clearly, we believe it is a worthy cause.

Suddenly, I see some nostalgia in her face.  I am surprised at my own intuition on this.  I am validated when she says next, "Be glad that they were born when they were."

Her comment is rooted in progress.

She smiles tautly, then she looks down heavy-hearted at my chart to avoid my eyes.  She continues partly deep in her thoughts, "I'll never forget a boy in my school when I was little."  She shakes her head while still looking down.  She jolts away from her thought and writes down a note that I need for follow up and my paperwork to settle up with her receptionist.

Dylan is smacking the grape Mike and Ikes that I have bribed him with so he will be cooperative and polite.  As the doctor wraps up with us, she hands me my papers, starts to walk by us heading for the door.  Dylan is flustered.  I can tell he wants to say something but between his previous agitation and chomping on the candy, he can't get his thoughts out.  "Do you want something?" I ask him.  I can tell he wants to say something to the doctor, so I make it easier for him since he is furiously chewing.  "Do you want to give Dr. a high-five?"  He nods.

Dylan puts his sticky, little hand out and gently pats the doctor's hand.  Her face glows for a moment and says, "Aww, that just made my day."

To see progress is to watch your kids grow up.
To promote progress is to help someone see something in a new way.
To truly advance progress is to make a difference each day.

For us that difference is a cure.  I give thanks toward the remarkable progress that has been made and is being made every day to find a cure for my boys.

Each Thanksgiving, I add new things to my metaphorical thankful jar.  I believe that all parents do.  I don't know at what point the jar fills up or is overflowing...  maybe it never can be too full.  Let's be honest, we can never be thankful enough.

This year, I drop a couple thanks pennies in for the sparkle in Michael's eye as he proudly holds up his schoolwork where he has neatly written his own name.  They hit the glass jar bottom with a rattle and clank.  Next, I toss in a penny for my thankful moments of Dylan's oratory reading of "The Very Hungry Caterpillar" to me at bedtime and one more penny his rendition of "Twinkle, Twinkle"...

Of course, my jar wouldn't be complete without a handful of pennies that tumble into the jar and create a symphony of clanking music.  These are for my thanks every night for the boys' sweet, deep rhythmic breathing as I kiss them goodnight before going to bed, observing how big they have gotten in the past days, weeks, months, year.  Of course, not before noticing what they have brought into bed with them on any particular night.

Progress means a continuum of change and individual moments of breakthrough.  This Thanksgiving I can't help but be thankful for all that progress brings.

Those pennies in a jar
that change that sweetly rattles around every day
are the wealth of a lifetime.

Who's got your back?

My recent months have been a rollercoaster of emotion.  No stability and certainly no consistency except one thing - support.

Because of our quarantine in recent weeks, since Michael's doctor suggested avoiding large group settings (most places in the world) and highly trafficked places (and all other possible places in the world) we have no choice but to stay in lock down at the house.  While this sounds extreme, it isn't.  In our minds, it's simply smart decision making right now.  And we are adhering to the doctor's advice...  if it's not necessary, we just don't go out.  And while obviously we are not ones to lick the handle of a shopping cart or rub our eyes after getting of the Metra commuter train, there are germs everywhere even with best practices like hand sanitizer or good handwashing.

I know some unknowing parents look at us like we are crazy when we Clorox wipe restaurant tables regularly without the kids being visibly sick.  Or when I have a hand sanitzer bottle in every purse, diaper bag and a pump container of it my car.  I am not just a crazy mother, people.  I need to be crazy.  It's necessity.  So, keep staring and keep rolling your eyes at me in those stores and restaurants.  I am the better person, because, I know better.

Moral of the germ story is that we are just hanging at home until Michael gets over the hump of this most recent sickness.

I won't lie that it has been insane and overwhelming being at home with the boys nonstop.  They are stir-crazy as am I.  But these little guys get through the cabin fever with each other's help.  "C'mon Dy Dy," Michael prompts and grabs Dylan's hand as they run off to the basement to play.  Dylan turns around and fiercely looks at me.  As he is running off with his big brother, he shouts around his obstructive pacifier in his mouth at me.  I can easily translate his fervent demand to play Wii boxing in his mini dictator tone.

Dylan is dressed in a white t-shirt, a diaper, and a royal blue pacifier in his mouth.  He gathers himself for the big fight.  Michael's cheers his brother on in the boxing ring, "Punch him, Dy.  Punch him right in the face!"  And Dylan, clutching the white plastic Wii remote in his little tot hands and sucking firmly on his pacie, rapidly flutters his arms up and down back and forth.  He growls at the large screen TV, "GET.  GET.  GET."  Then he dramatically collapses onto the floor for effect.  Michael hurriedly shouts for him to get back up since the match isn't over.  Michael won't let his brother down that way.  He will cheer him to get up until the very end.  Very moving.

Ahh, my boys help each other out.  I see it in all ways, not just the rough and tough stuff either.

It's also in the sweet unassuming moments like when Michael excitedly puts in Dylan's favorite movie, Baby Einstein Shapes, for his breathing treatments.  Michael shuffles around our bazillion DVD's, locates the correct one and delicately pops the DVD out of the cover.  He loads the disc and waits anxiously to hit the play button and cue up the movie for his baby brother.  There are also the times when an airway clearance session has finished on the respiratory vest, Michael gently unhooks the tubes and unsnaps the buckles.  "All done?  Dy, you all done?", he prompts his baby brother.  Or even when Michael "helps" Dylan out by doing his chest therapies (this one we'll say is a little more pretending and acting out than actually doing).

But all of these are amazing illustrations of how these two little ones are bonded, deeply and inexplicably.  They are brothers and they are each other's pillars.

It has been lonely and surprisingly quiet for me at times during our lock-down.  Many friends and family have reached out to see how we are all doing or to lend help.  One of my best friends brings a warm dinner and we dish about more than food.  We catch up about all things life.  We do the math and realize that it has, shockingly, been months since we have seen each other.  She and I have a remarkable connection that I plan to memorialize in a book some day.

We met on a CTA bus eleven years ago commuting along the same train line from the suburbs into the city of Chicago.  We delivered babies on the same day with the same doctor (yes, keep scratching your head).  We left work in demanding sales careers at the same time.  We both have roots in West Virginia.  We both know what it's like to lose a parent at a young age.  We have both married our high school sweethearts, who are by the way both the middle sons of three boys.  We both planned our high school reunions.  We were in some bizarre way, lost souls that were looking for each other's completion.

We even sat licking our baby boys together weeks after they were born to see if they tasted salty.  Turns out that mine were salty.  Hers were not.  CF has had an all too real presence in her husband's family.  She is a wonderful friend who I admire greatly.  She has her own hands full with 3 little boys and a fourth baby on the way.  I am lucky to have her.  Our catch-up session over Mexican food at my kitchen table leaves me feeling normal.  Always like old times.  And in some weird way, things are as they have always been.  Because she's got my back.

Another one of my best friends, my college roommate and Dylan's Godmother, brings me dinner and puts in my freezer and tells me that she is coming to help me this week.  She knows that I am overwhelmed and knows that I don't even have a good minute to run to the grocery store or consider doing something like (sigh) a manicure these days.  She gives up a day of her freedom from her own kids to relieve me for an hour or two to get out and run much-needed errands.  I am continually humbled by her selflessness over the years.  We joke that our friendship was sealed the first week of classes at Indiana University. We met in an advanced Spanish class and strangely a few days later, 150 miles away in a different Big Ten city, I spot her standing on a street corner as I drive past.  We lock eyes stunned, me in the passenger seat of the car in disbelief pointing at her and she on the street corner her mouth agape pointing at the slow moving car I am in.  From that moment on, we are friends.

I clearly remember losing my voice on spring break in Cancun and she was my voice.  I cannot forget her considerate offers to watch Michael so I could go to my maternity appointments when I was pregnant with Dylan.  And I have vivid memories of our late night talks in our college apartments while slamming a Pizza Express pizza and bread sticks.  She has been there for me over the years.  I am so grateful to have her friendship and unwavering support.

I have received calls from my lifelong best friend a few times checking in.  I suspect she wants to hear my voice and I know that I too need to hear hers.  And my cell phone voicemail comes alive with my girls, my mother, and my mother-in-law.  All who have a sixth sense that life is beating me down.  Even my former high school friends who so thoughtfully send me a kind note and a Starbucks gift card, because they just know that I can use a pick-me-up.  Should I feel so loved and supported.  These are my women.  There are many days that I wonder why everyone is doing that for me.

* * *

It is a casual gathering in a room somewhere in middle of Chicago suburbia.  A private room at the top of the dramatic, winding staircase and to the right.  Images of the black and white checkered floor and bustling tables drift by as I near the room framed with massive velvet drapery.  We are not spies or some secret sisterhood.

Two of my friends and I duck around the velvet and enter the room with a volume ceiling and art deco touches.  We see our friend who planned this lovely evening.  As we hug and greet each other, more women fill the space with laughter and light.

The mood is comfortable and easy.  We settle in as though we have known each for many years.  A halo of indescribable warmth radiates around each of us.  The tables with classic white restaurant linens are dotted with miniature bud vases with single red roses.  A single word defines each vase stands on its own, but it's the trio that carries the weight of the meaning.

Couldn't have said it better for dinner with these women.

Different ages.

Different backgrounds.

Different appearances.

Same cause.

We fight the same fight in our homes.  We know the struggles each other face every morning we wake up.  We share the same hope every night we go to sleep.  We come together to share our grief and healing.  "So, when was he diagnosed?"  We trade our common challenges and disruptions.  "How did you get her to stop throwing up at night?  What did you change?"  We compare our surprise that even those close our community often don't even 'get it'.   "And could you believe the nerve of that social worker saying that?!"

Time fades away as we gab through our stories.  As we look at our watches, we realize another evening together has passed.  Slowly, we trickle out of the private room in the restaurant where the heavy velvet drape has kept us in a safe cocoon for hours.

These special dinners grace our calendars only a few times a year.  They are therapeutic and remind us that we are never alone on this journey.  I recall at one of these dinners a server once asked us, "So, how do you know each other?"  And we all looked around the tables, and with a collective smirk said, "I guess we are kind of a support group."

GASP!  Dare we call ourselves a support group.  That is stuffy and cliche.  And that's just not us.

We are detectives, project managers, problem solvers, lay physicians, referees, negotiators, culinary experts, germ specialists, and respiratory therapists.  Many of us are also mothers.  But the best title we can claim around these tables are 'friends'.  With no other way to explain how this ensemble of amazing women would have otherwise come together, it's the only easy way to share our deeply profound connection of fighting this terrible disease.

We can't always predict what life has in store for each us.  I would not have any of these strong and beautiful women in my life if not for chance.  Chance to meet that girl on the bus, or chance that I passed that classmate on a street in another city, or chance that my beautiful boys have CF.

I see it with my boys and how they lift each other up every day.  Every pill.  Every treatment.  Every time they play together.  They living together, laughing constantly and loving always.  They hold hands when they run off to find an adventure and they hug before bedtime every night.  One of my favorite pictures of all time was when I looked down at the boys in the stroller while walking through a shopping center and saw Michael clutching sweet baby Dylan's hand who was no more than five months old.

It's the moments when Michael gently kisses Dylan's forehead goodnight and they use their little hands to sign "I love you".  These little guys support each other in every way.

To truly live, to hysterically laugh and to deeply love is most rewarding when you are supported along the way.  And to those that support me, every day, I tip my hat.  Because, sisters, I got your backs.

Raindrops Keep Fallin' On My Head

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

When it rains, it pours.

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

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

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

The metaphorical thunder clouds begin to gather ominously around me.

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

Wait.  Just.  A.  Minute.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here comes the heaviest gusts of rain...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

At least until tomorrow when the coming clouds reappear.

Because the rain clouds always roll back in.

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

As if thanks isn't enough...

So, there's never a dull moment around here.  Why should the holidays be any different?

We are thrilled Thanksgiving Eve, when the nurse comes to remove Michael's PICC.  He barely winces...  I am told most toddlers freak out at the sight of the scissors to remove the stitches, but the process itself of removing the PICC line is fast and painless.  Actually I have even heard it tickles (I know, weird).  It's just that there are 2 or 3 stitches that need to be removed...  with scissors.  Not surprisingly, Michael is upset, but handles himself like a brave kid.  Within seconds, something that has drained on us for so many days is GONE.

POOF.

GONE.

You think our world changes?  Of course not.  Energy just redirects.  Series of events to follow the PICC removal...  Nurse leaves.  Take dog potty outside.  Then dog tracks potty on her paws in the house.  All over the house.  Then Michael has an accident.  Same exact time.  No carpet cleaner in the house.  Seriously?!  Prescription needs to picked up at the pharmacy before it closes.  I still have to make the Bacon Cornbread Stuffing for Thanksgiving tomorrow...

This is it.  Between searing tears and belly laughter, I am truly thankful.

Thanksgiving is a blur, always an absurd affair.  I find myself at one point leaving our Uncle's house to go home for a change of clean pants for Michael.  Because Michael has two accidents, not one, because I had been prepared for that...  but two.  One would've been too easy to handle.  Thank you, Cosmos, for throwing 2 messes on Thanksgiving Day.  And so I roll with it.

Now that the holiday weekend is drawing to a close, I look back on the thanks that this weekend has brought, but also on the wonderment.

It's tradition in our family (of my own doing) to lug out our Christmas ornaments and holiday decor the morning after Thanksgiving.  And this year is no exception.  While I swore I wouldn't be one of those suckers at the mall at 4 am.  It turns out I am.  Not for any other reason than I wake up and can't sleep.  At 4:19 am.  So why not shop?

I hop out of bed, throw on my cutest hat with my yoga clothes and scurry out the door to Target to see what kind of deals I can find.  Incredibly, I can't believe the parking lot.  I have to park in the lot of the adjacent grocery store.  As I walk in, folks are already walking out with their treasures and blankets where they had been camped out before the store opened.  I am trying to process this as I walk into the brightly fluorescent-lit store that screams its iconic red bulls-eyes at me.

Chaos.  People grabbing at the electronics boxes.  Mayhem.  Tag-teams rummaging through the DVD displays.  What am I doing here?  My brain throbs.  I head to the toys, grab the few items that I saw in the ad that we had agreed would be perfect for the kids and I head to one last area of the store.

The Christmas trees.  So, every year we have the picture perfect designer tree.  We have all the matching ornaments...  pretty burgundy, rich scarlet, and shimmering gold globes.  Spiced fruit, apples, pears, grapes.  Every year since we've been married, we have chosen a few sentimental ornaments and hung them.  But certainly our tree has had no, uh, personality.

I have a thought that a scrawny little one might become our new special tradition.  I want a cheap one to load all my childhood ornaments on.  To add ornaments each year that the boys make.

A tree of the past.
A tree of the present.
And a tree of hope... a tree of the future.

I turn upon the deserted aisle, since everyone else is in a frenzy at the electronics and the toys.  Or at least that's what I think.  But then it dawns on me.  The real reason no one is here in this department for the deals on the Christmas trees was...  there are none.  All gone.  What a disappointment.

I hang my head and move on.  As I see a sales associate in another department, I ask if they have any trees left, thinking it was a crazy proposal.  She is friendly and offers to check.  And sure enough, to my delight they have one.  As I load it in my cart and head to get in line to pay, everyone keeps asking me where I had found it.  Score!  And in the spirit of the holidays, I hope and would later found out that my comrades asking about the tree also would get one.

The LINE.  It wraps from the back corner of the store to the other back corner, then it snakes its way, zigzagging, back and forth, back and forth, EVERY aisle all the way to the front of the store.  I wait an entire hour just to pay.  It is unreal.  It is a line at an amusement park.

At 6 am sharp, I walk through my door and drop my purse on the counter top with a loud THUD.  Exasperated, look at the damage on the bill.  And think about a cup of coffee.  My husband greets me and we hide the new treasures for the boys.  Within no time the boys are up playing and our day starts.

But herein lies the amazing thing.  Through my gray exhaustion, Michael asks about the Christmas decorations we are going to hang today.  The light in his sparkling eyes dance with excitement.

I put up the small tree I had just purchased.  Michael and I keep calling it our 'special tree'.  And it was worth my ridiculous shopping trip.  Every ornament that I take out he inspects closely with wonder.  His sweet, pink finger tips glide over shiny Santa ornaments, and sparkling snowmen, and delicate angels.  I haven't seen these ornaments in over a decade.  All from my youth and are part of my Christmas memoirs.  And here is my beautiful son, appreciating each ornament, taking it all in.

We continue our decorating, Michael full of questions.  The longest conversation stemming from how Santa comes into our house.  I explain in detail that Santa lands on our roof, and SWOOP!, comes down our chimney into our fireplace.  His eyes are wide.  And focused.  He would later explain it to back to me in detail.

The day passes.  Other than getting up the other Christmas tree and decorations, rather uneventfully.  During CF treatments before bedtime, we watch the animated "Grinch who Stole Christmas".  Michael saying he likes little Cindy Loo Who because he thinks she's cute.  And I explaining that Christmas is about love, not about presents.  The irony still makes me laugh.

As he falls asleep we put on the Charlie Brown Christmas music for him.  You see, he is a Charlie Brown kid.  Part intellectual, part humor, Charlie Brown hits the sweet spot as Michael's ideal entertainment.  So now we have been through The Great Pumpkin, and a Charlie Brown Thanksgiving, it's natural to move on to the next in the holiday specials.

Last year, when he was two years old, he knew every word to "Hark! The Herald Angels Sing" because that is how the Charlie Brown Christmas special ends...  with all the Peanuts singing that song around the pathetic, but miraculously beautiful tree.  We even recorded him singing every complex word in his two-year-old vocals.  It was that unbelievable, we had to record it for all of history.

So this year, at the close of a lovely day, we play the whole Vince Guaraldi Trio music from that TV special in his CD player.  He settles in.  And then...  Two times, Michael calls us into his room on song #10, asking for "repeat".  Since I am not understanding what he is trying to say, I start the entire CD of music over.  Upon the third time, he calls us into his dimly lit room again, it is on song #9...  We find Michael emotional and crying.  Weeping actually.  We realize the song "Hark!  The Herald Angels Sing" is playing and is song #9.  Aha!  He had wanted THAT song on repeat.  He had remembered it from Christmas past.  He is so moved by it, he is crying, but refuses to let us turn it off.  He asks again to have that song played on repeat.  He falls asleep to the joyous, special song that he sang verbatim a year before.

As the night closes, the boys snuggled in their beds, I am content.  Satisfied that I have started a memorable holiday season for Michael.  The next morning, he wakes up with joy across his face and confidently asks, "Did Santa come last night?"  It took some explaining for him to understand that Christmas morning is still weeks away and that we are getting ready for Christmas.  In the meantime, we will get to enjoy the decorations, the lights, the music he loves so much.

Later in the day, Michael goes ice-skating for the first time this weekend and loves it.  He exclaims to his daddy and uncle, "Mommy is going to be so proud of me!"

He's right.  And that doesn't even begin to describe how I feel about this amazing, little boy.