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.

Shredded.

My life is exhausting.

Not in the soccer-mom-who-has-have-overscheduled-herself-run-all-over-the-universe kind of way.
Or the I-make-stuff-up-to-do-and-stay-busy-every-minute-of-every-day way either.

It is more like the there-is-always-something-to-be-done-and-no-time-to-do-it-all-by-any-human-being-with-a-sound-mind way.

The past week has been a non-stop path of developing a plan filled with landmines, then recalculating another plan filled with roadblocks followed by, ahh, recalcuating yet another plan.  All on the fly.

This week brings a nasty bug circling our house.  My husband is leveled for three days with this junk and it starts searching for its next victim.  I dread that I am going to get this and, worse, I fear our sweet vulnerable boys getting hit.  As it turns out, at least so far, I am the handed the sick baton.  Great.

This germ descends on me just as my husband is starting his busy season, a time when our lives consist of lonely, gray days and long dark nights of winter.  This work season is a tough time for our family.  The boys constantly ask for him because they so crave his time and attention.  It's particularly difficult for me because my best friend is buried in his work.  He leaves the house as we are starting our days and arrives home at all hours of the evening.  It's unpredictable and tiresome for everyone.  We are constantly challenged to juggle my husband's intense work schedule and the typical things that life flings at us.

The start of a week usually brings a clean house.  Well, although the house has been cleaned tip top to basement bottom, it appears as though it was never cleaned with the torrent of toys littered all over, the superheros neighboring the matchbox cars and the shiny red and yellow building blocks mixed among the wooden train pieces.  Along with a "clean" house, I also typically kick the week off scrambling to get to my pilates class while a friend watches the boys.  It's the only hour of sanity that I have in my week and I spent it torturing my abs.  In this particular week, I spend the better part of a day shoveling out of 4 inches of snow from a blustery Great Lakes storm.  And this is just the start of the week.  I am already mentally fatigued and I know that I am feeling run down since a dull, back ache and sinus congestion started days previously.  But this turns ugly.

A sinus headache to rival all sinus headaches.  Ever.  By mid-week, I start feeling it's wrath.  I begin questioning if I have had a stroke and if I need to go to an emergency room.  An intense, throbbing headache that feels like a thousand little elves in my head swinging 10 ton hammers at the interior of my skull.  These little guys will take a lunch break for a few minutes, but then get right back to work.  They have no mercy.  The pain stabs me with the strength and power of a wrecking ball at times, shooting down the back right side of my neck.  I gag down two horse pills of maximum strength decongestant and a glass of water.

An hour or so later, I realize that maybe a hot shower will rid my head of some of this congestion.  I leave my two sweet little boys playing in Dylan's room.  Dylan laying in his bed while Michael pretends to be the parent, reading a book to Dylan.  Aww, so cute.  It really strikes me as a genuine brotherly moment.  "Remember," I remind Michael, "if there is big BIG trouble, come get mommy.  I will be in the shower."

And with this last syllable still hanging in the air, I whisk away for a hot shower.  My terrible night's sleep combined with this brutal congestion leaves me barely functional.

I never have the opportunity to take long showers.  That's simply a luxury.  As I fumble with the shampoo and soap and let the scalding hot water pour over my sinuses, I think about how I am finally in a place in my life that I actually can shower.  Those who are parents with babies or small toddlers can relate.

As I turn the water off, I see Michael's blurry image through the frosted glass of the shower bounding into the bathroom.  "Mommy, we got big trouble in the office.  C'mon.  It's Dy-dy," he says.  I throw on my robe and hurry with him asking a flurry of questions concerned that Dylan is hurt.  Dylan darts out of the office as we approach.  Once I walk through the threshold of the door, I am greeted by a toppled Papasan chair whose parts have been thrown around.  But the headline act is the paper shredder has been opened and overturned.  Mounds of shredded paper are discarded all over the carpet with the tiniest pieces embedded in the carpet's nylon fibers.  I am seething mad.  I feel lousy and my kids won't even let me have the satisfaction of an uninterrupted shower.  Why should I be surprised?  My boys play together, of course, they find trouble together.

I send both boys to their rooms and defeated I start the clean up the mess.  Once I am done vacuuming, I head to Michael's room and discuss the seriousness of the offense, even if it was Dylan's fault.  Then, together we head into Dylan's room to relieve him from his time out.  Not surprisingly, we find a box of baby wipes has been torn into bits and strewn all over his room.  Does it ever end?!  I genuinely feel like I am a failure and somehow I am the only mom in America dealing with such absurdity.

Two days later, I am splayed on the floor of the bathroom as my husband walks out the door to head to work.  A brilliant combination of a likely sinus infection paired nicely with some sort of stomach ailment (either a flu or quite possibly taking those stupid horse pills on an empty stomach as the culprit) is how I find myself here.   My husband has no choice but to leave, since there is an important meeting at work.  I can tell by the sadness in his eyes that he hates to leave me this sick.  "I will try to get home after the meeting in late afternoon so I can help with the kids."  He kisses my forehead.

It is a day that there is no help.  It's simply the reality of being a mom.  Moms just aren't allowed to be sick.

I just need rest.  I cope all morning through a series of tears and black emotion.  Somehow I get the required 'mom' things done.  I feed the kids, even though I have no idea what is on the plates and am guessing it is food.  And I get through their critical CF treatments only because my hands have done it a few thousand times.  Otherwise, I barely move from the couch under a cozy throw.

Chills and then sweats.

"Mommy!"  Dylan stands staring in my face at eye level with his dark brooding eyes, as I lay on the couch.  He demands something in 2-year-old-'languagese' that I can't quite make out.  "In a minute..." I weakly respond and he waddles off.

Chills and then sweats.

Michael is yelling from the basement for help with his Wii game.  I drag my body of the couch.

My only window for hope is when Michael goes to school in the afternoon and Dylan is napping.  My ONLY hope to rest.

As time passes and I feed them the simplest lunch possible of cereal and bananas and yogurt, it is time to start getting ready to leave for school.  I get their shoes and socks on while they are eating.  Coats, hats, mittens and Michael's school bag are all laid out and ready for the "out the door blitz" filled with lots of winter fleece, puffy materials, and plenty of struggling and arguing that happens when we go anywhere in the winter.

I go outside and start the car to warm it up.  I have a rental car currently since my car is in the body shop (See December Blog "The Lottery."), and the rental car company decides to give me a hulking tank of a car that doesn't even fit in my garage, so it sits on my tundra of a driveway.  I cannot conceive of driving this monstrosity every day.  I am stuck with it.

Once Michael finishes his meal he starts to put his coat on and then stops abruptly, "I need to go potty!"  He sprints for the bathroom.  Typical.  I am willing myself to get this kid to his school.  He demands that I take off his pants entirely for his business, which means off come the shoes that I had put on already.  I digress further from actually getting these kids in the car.  Once he is finished, we race to get the heavy winter coats and hats on and lace the shoes that a Chicago winter requires.  I scoop Dylan up and Michael is on my heels as we head out the door.

When we get to the car, I pull the handle to our beast of a car.

It doesn't budge.

I pull again.

It won't open.

I frantically grab another door handle.

Yep.  Locked, too.

I didn't press the lock on the remote or inside the car.  HOW IS THIS POSSIBLE?  I am locked out of my rental car with it running in my driveway.

I convince myself that this is the work of a mechanism inside the car meant to protect the car if it is running for more than, say 10 minutes, because clearly this was not my doing.  Clearly.  I feel the hot, stinging tears roll down my icy cold cheeks.  The lunatic in me starting to emerge.

I run into my house and let out a scream.  Completely responsible parenting sometimes includes mania. I still stand behind this act for reasons of insanity.  I am so drained of all energy I just don't have it in me to deal with anything else.  I snatch the phone off the cradle and punch each number in to dial the rental car company muttering under my breath.  I ask about a spare set of keys and, big surprise, of course they don't have spare sets.  Makes sense to the rational person, but I am not rational at this point.  I have lost all civility and I become verbally combative with the poor associate at the rental car company who is delicately trying to tell me that there is no such mechanism to lock an idling car as protection (although I am still not convinced) and suggesting that accidents do in fact happen.  "Ohhh, so this is my fault?!," I stammer.  Wow, I am not in good shape.  I fully explain the situation that I MUST get my kid to school and he meets me with "You probably are going to have to call Roadside Assistance and have someone come out.  And, yes, you will likely have to pay for it."  Oh snap.

I hang up sobbing as I call this 800 number to Roadside Assistance.  Michael keeps interjecting sweetly, "Mommy, did you talk to the cup-any?  Did you talk to dem?  Mommy?"  He puts his miniature hand on my leg to comfort me.

On the other end of the phone line, I get this woman with a southern drawl who is as sweet as ice cream.  I start spilling my whole story.  "I have been puking all morning...  I need my kid to go to school today...  I feel like death...  the keys are locked in the car...  no, not the kids, the KEYS are locked in the car..."

I have heard that hope is when it's truly dark enough, you can see the stars.

Betty or Susie, whatever her name is puts me on hold and comes back.  "Ma'am, there is some light on the horizon for you.  This vehicle is equipped with On Star service, so they may be able to unlock your car remotely and not have to send some one out.  Give me a minute to contact On Star and see what we can do."  The line goes silent.  My sniffles and sobs slow.  Michael watches me slowly and controlled wondering what in the world crazy Mommy will do next.

I realize how hilarious this call would sound as one of those On Star commercials.  "Yes, this is On Star."  "Hello, I have a hysterical mother on the line who insists she has to send her kid to school and locked her keys in her car.  She is verbally assaultive, so let's try and get this insane woman on her way and off my phone."

The nice representative comes back and suggests I go out and try opening the car doors.  And ta-DAA!  They open.  She also tells me that the local rental location should be able to waive the $57 fee they charge for the remote unlock service.  It is a miracle.  And I am now a believer in On Star.  I profoundly thank the lady and hang up.  Back inside the house, I throw the phone onto the kitchen counter with a bang and grab Dylan.

It is action-mode.  I scramble to get the kids in the car and we speed off to Michael's preschool.

For anyone, being sick is no day at the park, especially when there is a lot going on.  I recall the times when I was working full-time and the biggest concern when I was sick was calling in for a conference call during my ailment.  Big deal.  For most stay-at-home-moms who are under the weather, it's a whole other level of patience, endurance, and will.  It's like making dinner in a pressure cooker in a furnace...  blind.  You can't rest or take care of yourself because you are caring for your kids first.

There are the good days and the bad ones.  There are the highs and the lows.  On a good day, I am tired, possibly exhausted.  On a bad day, well, some times there are just no words.  At my sickest during these days, I would still look around and see all the things that need to be done.  My brain floats with all the stress of constantly reacting to two very smart, active boys along with household bills, medical bills, meals, medical equipment, laundry, projects, classes, playdates, etc.  And all of this doesn't stop when I am sick.  I usually dodge it and deal with it with less focus and care, but it still gnaws at me.

I realize that my couple days spent in the black hole of sickness filled with moaning, mishaps and miracles doesn't even come CLOSE to my boys' experience of falling ill and what they have to endure.  It is in this thought that I am humbled.  And I don't really care about all that stuff that just has to get done.

Instead, I choose to look up in wonderment at the stars.

First.

Everyone loves New Year's Eve and the first day of the new year.  Personally, I think they are both pretty anticlimactic.

In contrast, I think the 2nd of January is actually quite neglected.  And for that matter, so are the other days of January.  I don't understand why everyone feels that the first day of the new year is so shiny and different.

Let's be honest.  Nothing is really different on the first of January.  Nor does it yet challenge you on your new year's resolutions, but it's the subsequent days...  when the fat calories have finally settled into your waistline and the alcohol from celebrating has worn off.  It's the later days of January that are the meaningful ones.

I choose to do my reflecting on the less appreciated days of January in hopes that it will give me better insight and reflection as I head into the start of 2011.

Every year I put together a hard cover picture album of our family's year.  A pictorial memoir of the year's most precious and funny moments.  Or the little things that I know I will miss when the boys have grown up and are not the sweet little kids they are today.

I enjoy taking on large projects and always have a vision.  But this is a cumbersome project that I sigh my way through with each click of the mouse.  As I sift through and organize all 780 pictures, I have stumbled through a treasure trove of beautiful moments.  Unforgettable scenes.  Places and people that we want to remember.  I CHOOSE to replay for our special pictorial.  I explore and relive a series of firsts for our family.

A first birthday...  where everyone is sick and exhausted, but still has cake and party hats.

A first haircut...  with the thrill and excitement of a sweet, sticky red lollipop.


A first trainride...  to downtown Chicago on a cold December day to meet Santa for the first time.

A first garden...  to teach the beauty of nature, the wonder of growth, and the rewards of commitment.

A first day of school...  with a vibrant red shirt and twinkling eyes filled with wonderment.


I am taken back with other moments as I inhale the chlorine at the glistening aqua pool where the boys are splashing.  I hear the drone of the lawn mower with Michael cutting the grass behind Daddy for the first time in the misty spring air.  I feel the sweltering heat of summer during a super soaker stand-off in Lake Geneva.  I smell the cool autumn air at the pumpkin patch. Then,

I stop.

I stare at an image that is definitely a defining point in our year.  Most certainly, this is a first.

A first hospitalization...  to treat the first pulmonary exacerbation.

I see Michael sleeping in his hospital bed at Children's Memorial Hospital.  Dots of colors mix together on my computer screen to show my sweet sleeping angel in a hospital bed wearing his beloved Batman shirt...  an emblem of a superhero.  Awe, sadness, and healing all strike me at the same time.

I am completely stumped.  Humph.  This one picture sends me into a flurry of digital images.  Flashes of moments across my computer screen of another life, the CF life that has been lived in 2010.

Other memories.  The very real impatience boiling over by a three and half-year-old after five days living on the 9th floor in a 12 by 12 foot room of Children's Memorial Hospital?  Ungodly fluorescent lighting.  Electronic numbers crawling across screens.  Beeps from machines.  Glaringly ugly hospital floor tile.  The iconic Chicago skyline out our window.

Do I pretend that we have this picture perfect life that, with a little editing and cropping, doesn't involve weeks of antibiotics, days in the hospital, and hours and hours of breathing treatments?

My husband's proud smile shaking hands with our esteemed Representative in her Washington DC office on Capitol Hill.  Their locked eyes deep in discussion on legislation that would help thousands of CF patients and those with chronic disorders.  A father fighting for the best for his sons.  The Capitol building on a gray March day.

Do I put these on the pages that mark our lives for 2010?  Our continued fight and advocating our story to those who vote on the Senate and House of Representatives floors of the greatest country in the world.

The vibrant blue sky against Chicago's shimmering lakefront for the Cystic Fibrosis Foundation's annual walk to raise money for a cure.  Where our family and friends gather to reflect on where this ugly disease has been and how we can band together to better Michael and Dylan's days.  The kids playing on the lawn of famous Soldier Field, home of the Chicago Bears.  The balloons.  The food.  The music.  The fun.  The heartache.  And the healing.

Is it possible to *not* include these images?  This is who we are.

Forgetting to include these images is like a missing part of DNA in our lives and our history as a family.  Huh.  DNA.

The images flick through my mind as I sift through the highs and lows of the new year already.  We are only days into the new year and there are already some firsts of 2011, reminding me of the very real fight that we are in as we battle CF every day.

Last night brings us the first middle-of-the-night CF belly ache of the year.  I know parents all around the world wake up with their sick kids in the wee hours of the night.  This is not a headline.  But these late night belly aches are different, they are regular, and they are unwelcome.  As a parent, this is the disease creeping in.  It interrupts my sweet little boy's rest.  And I hate it.

Probably a score of times, Michael has woken up in his very young life to a irreparable stomach ache.  He bursts into our bedroom crying for us and heartbreakingly sharing that his tummy hurts.  I look at the clock.  It is 11:42.  I groggily roll over as my husband walks him back into his room.  We know the drill.  We take shifts to soothe and console him.  He writhes and groans a bit and tries to fall back to sleep in his battle stance whenever this happens.  He lays rolled up into a tight ball, his knees and legs firmly tucked under his belly with his head buried in his pillow.  Comfort is an impossibility.

My first time into his room, he is laying on his side shifted a bit from his ball position.  His eyes slightly crack when I come into his room.  "My belly hurts," he whispers.  I sit beside his bed and stroke his creamy cheek.  His sweet little pink mouth and closed eyes are still.  His nose is so perfect, he looks like a porcelain sculpted doll.  How can a sweet child deal with such discomfort, and so gracefully?

My longest shift is for an hour laying in his bed with him.  I rub his back and we whisper, "I love you's" back and forth periodically.  I try to convince him to take a Tums to try to help the acid churning in his stomach.  He bucks my attempts for a while but finally gives in.  He settles down back into his comfort position with his favorite blanket on his bare stomach hoping that the healing powers of his "blankie" will make it all better.  I ask him how he feels and he replies, "Almo better."  I think he tells me this for me to feel better, not him.

I stay with him as we listen to a lullabye version of Coldplay's greatest hits.  And when I think he is calm and quieted, I slip out after explaining that if he needs us to come get us or go into the bathroom and we would help him. 

It is 2:38 when he bounds into our room screaming that he is going to get sick.  FINALLY.  He is nervous and talking loudly.  But perhaps most welcomed "first" is that this little trooper makes it all the way to the bathroom and gets sick into the toilet successfully, which makes the clean up for Mommy and Daddy in the late night hours as simple as the push of a lever.  There have too many nights to count where we have stripped sheets and are performing a HAZMAT mission through our groggy states.  When he is done, he takes some small sips of cold water and climbs back into bed.  He calls on us periodically and we continue to check in on him until somewhere around 3 am where he finally falls asleep.

This is normal in our house.  And it stinks.  There is no explanation.  No stomach flu.  No food poisoning.  Nothing.  It's just the lurking evil of CF.

Another first, a frankly devastating first, to ring in the New Year is the announcement this week that a drug we had been following since Michael was diagnosed has failed Phase 3 Clinical Trials.  POOF!  This is one of the drugs in the "cure" category that was to fix the problems in CF lungs.  This is the drug that Michael had been part of the study prior to heading into the hospital in November.  This is the drug that all the experts we knew were nearly buying stock in... it was that close.  Medical executives with CF believed our boys would ultimately benefit from.  And we learn that the final results are in the best of terms, disappointing.  The drug performs almost the same as the placebo in the second Phase 3 study.  Furthermore, the company backing the drug has to drop it altogether with no more additional support or considerable follow up research in order to avoid bankruptcy.  There goes another miracle.  So close.  And it's the first missed shot that I have experienced in this waged war against CF.

I believe that ringing in a new year is less about new beginnings which can be tantalizing and attractive.  New beginnings are deceiving and rare if they happen truly at all.  Rather a new year is about learning from every experience from the previous year.  Every first.  Every last.  And every single one along the way for that matter.

While I struggle to balance our days with CF hanging around, I finally decide to include those pictures in our 2010 family album.  Afterall, they will tell a truly remarkable, wait, a truly miraculous story some day.