New Year's Party.

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

Noisemakers.  Champagne.  Silly hats.  And resolutions.

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

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

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

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

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

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

Lost?

Cancelled?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

New year, new things.  New things for sure.

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

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

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

Sometimes.  YOU.  JUST.  KNOW.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Life's a party.

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

Roughhousing.

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

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

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

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

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

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

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

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

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

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

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

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

Roughhousing, yeah right.

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

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

My GAG reflex is emerging.

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

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

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

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

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

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

“If you were a mom, and your kid obliterated a diaper, how would you clean the mess?”

A)   A vacuum that only works moderately

B)   Wet papertowels which does a mediocre job of catching the loose material

C)   A Broom that spreads the mess around

D)   Leave the house running and screaming down the street

E)    D is not an option.

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

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

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

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

Apple.

The move actually continues with what I would describe as miracle ease.  The boys are relatively well-behaved even though we have no food in the house, no television and no toys.  Our only saving grace to occupy our busy-body boys are our two iPads.  The iPads would become invaluable in our move, travels, and obstacles that lay ahead.

They sit patiently, even politely, for the opportunity to play Angry Birds and watch their favorite shows on this amazing device.  Thank you, Mr. Jobs.  I realize that you are making a ka-jillion dollars and don't need a lowly stay-at-home mother's appreciation, but this thing is worth it's weight in gold.  It really can keep kiddos quiet for a duration of time that would permit any lunatic mother to gain her composure.  I am steadfast in my belief and determination that my boys will play with real wood blocks, run outside playing sports, dig in the dirt to plant a garden (with gloves of course), and have shelves stocked with books with REAL paper pages in their bedrooms.  I want my kids to have all the tools for them to learn and be creative.  I want them to have everything they could need to explore the world around them and sharpen their senses to see and feel more in their lives.  I don't want them to form into little rigid robots that stare at a tablet screen their entire lives.  As a result, I often have felt a disdain for all these unnecessary devices that our kids laze around with these days.

However, it is now clear, Mr. Jobs that I am indebted to you for this marvel of technology.  It would keep me sane for the coming days, but ironically would also be my demise.

In our home, we generally are more liberal with television than I would like and now the boys spend more time on our iPads because of the TWO HOURS a day they spend doing breathing treatments and airway clearance.  I nearly feel a shock of guilt through me if I say no.  It is time they are forced to sit and be hooked up to machines beyond their will... every... single... day... to keep their lungs healthy.  And they have no say in the matter.  If I can at the very least provide some joy, entertainment, interest, education...  whatever can shed light on this sedentary time is, well, a blessing.

And while Michael now understands that we spend this time and do these treatments to get "the glue out of his lungs" and try to get rid of the "germies", he is happy to do his treatments time playing games he enjoys or watching shows on TV that are "special".  It is a reward to do this time with the iPad.  Same goes with Dylan.

These tools also transcend our home.  They have become a necessity when trying to sit through a 4-hour clinic visit with two little boys bouncing off the walls.  Or a distraction in a hospital ER.  Or sitting in a restaurant with the desperation to just finish a hot meal.  Mr. Jobs, let's be honest.  You own us.  And you know it.

The movers continue to usher boxes out on their backs with straps.  Hulking over-sized boxes that I could crawl into they could simply load me on the truck.  The crew is hard-working and diligent.  One dolly filled with boxes after another.  My husband arrives back from his office (yes, to repair a technical problem with his computer) with some support.  He is pleasantly surprised at the temperament and relaxed nature of the boys sitting on the couch in the family room as they swipe their little fingers across the glowing screens.  Again, no sarcasm here.  Thank you, Mr. Jobs.

I joke with one of the movers from the crew.  "Hey, have you ever had a family or someone freak out on you during a move?  You know, since you are moving their lives onto a truck?"  As he hefts a box out the door and down the front walk he responds with a laugh, "Yeah, some people freak out.  But you really feel for the old people when they have spent their whole lives in the house they are leaving."  I linger on this thought for a minute.  Yeah, I can imagine that would be difficult.  I am sure these guys have seen it all...

Michael stays entranced with the iPad with Transformers shows, and I watch the progression of the move.  Towers of boxes that stood in my dining room and study are slowly disappearing.  We stay at our base camp on the couch to avoid being in the way of the crew.  Dylan falls asleep while the iPad is still propped in front of him.  I am grateful for him to be getting a nap in on such a stressful and bustling day.  He has the comfort of the linens from his bed as he sweetly smacks on his pacifier.

Now that hours have passed, Dylan is now awake and the boys are starting to get restless.  My husband makes astute decision to take the Dyl-man on a walk around the neighborhood to get some energy out.  A walk would do him good.  I hang back with Michael since he doesn't want to leave his magic screen.  The moving crew continues pacing in and out of our open front door with more cardboard monotony.

I decide since Daddy has gotten Dylan out of the house, that I would do the same for Michael.  I suggest to Michael that we head next door to our neighbor's to visit one last time before the moving van pulls away.  We are blessed to have the most wonderful next door neighbors.  They are a couple with three grown kids and who are always there to help out in a pinch and are always busy around their home and yard.  The wife has been tremendously helpful the past year with watching the boys weekly so I can go to a Pilates class.  They are all around good people and good friends.  The boys have grown to love toddling over into their yard and playing in all seasons of Chicago weather.  We have grown close to  them over the years.  And the kind of people you want right next door.  I am saddened that we are leaving them and this neighborhood for two years.

As I make the suggestion for a visit next door, Haley perks her ears and hurriedly pops up.  I neglect to remember that she loves the neighbors' dog, a sweet-natured standard poodle.  I had not planned for her to come along, but I suppose I can't leave her behind.  As a result, the unexpected becomes the expected.  She bolts out the front door that is open for the movers and starts to head next door.  This is when I stroll over while Michael steps behind me.  I greet my sweet neighbor as she sits on her front stoop as Haley runs up.  I glance behind me and see that Michael is running through the grass with my iPad.  He is nearing a patch that is slushy, muddy and I suggest he walk over to the sidewalk (a poor decision in retrospect).

As Michael begins to redirect his path, he walks two strides on the sidewalk.  Then my senses shift to slow motion as I see him start to start to fumble with the iPad.  It slips from his small fingers and he continues to grasp and re-grasp at it.  He is starting to loose grip and the device.  Naked without a cover or any type of protection, it falls from his little hands.  It is nearly suspended in air as I watch it with each nanosecond it falls closer and closer to earth.  It hits the cement sidewalk.  I cringe as I see one of the four corners take the impact and then the path of destruction hits two more corners of the iPad as it bounces on the sidewalk.  It lands there and is still.  Ever so quickly Michael grabs it off the pavement turns his stride around and starts briskly walking in a diagonal path toward the street.  I see everything with my own eyes so I know with fact it has happened, but his swift recovery and nonchalant fleeing of the scene leads me to wonder if it did in fact happen.

The gray sky looms overhead.  I can hear the movers' voices over at my house, dull in my head.  I yell for Michael to stop walking.   I call his name but he doesn't respond.  I yell again and he continues toward the street where the moving van is parked.  I have a moment of adrenalin and complete freak out.  I can't tell if I am angry that he is ignoring me or if I am concerned that he is walking into the street.  I burst from my standing position and start running.  I grab Michael when he is not quite even a couple steps from the curb.  I begin reprimanding him, not even for the accident, but for not listening as I called for him and as he dangerously approached the street.  His face is sad and confused, but he clearly he doesn't understand the gravity of his actions.  Upon inspection of the iPad, the screen is shattered on three of the four corners.  The spidery, cracking patterns on the screen are almost more aggravating than if the whole entire thing was shattered.  I am exasperated and speechless, other than my directions to Michael that he is never to ignore me and walk towards a street.  The broken iPad, after all, was an accident.

Then I hear the unmistakable roar of the infamous brown truck turning onto our street.  I see our dog's nemesis pull up right next to the moving van.  The UPS Guy, Raul.    I am praying he is going to another house or turning around.  This is the first time in the years we have lived here that the dog has the chance to run right up to him and bark her fury at him instead of through the picture window of our dining room.  I try to greet him verbally as she charges at him.  This can only end in nightmare.  However, it is immediately apparent that Raul is a good guy and knows how to handle himself around dogs.  He doesn't react and acknowledges that his delivery is for me and he needs a signature.  Finally, Haley realizes that he is a friend and she trots around him smelling him and deciding her next move in this adventure of a day.  I sign the electronic pad while we make small talk while the dog sniffs around.  He jokes that he is going to miss stopping at our house on his route and the dog barking every time through the window...  he stops at our house regularly with brown boxes of medication or online purchases I have made.  Raul is a good guy.  He climbs in his truck and I am holding this small package that I don't have a thought to figure out what is in it.

I try to gather myself to figure out what has even transpired.  Michael is sitting with our neighbor on their stoop examining the iPad.  My head is swirling.  Where is my husband?  And Dylan?  And where is the dog for that matter.  I glance around and realize that she has continued along her path of destruction.  I witness her pooping on the one unpleasant neighbor's lawn in the neighborhood.  Leaving Michael with my neighbor and the remnants of the iPad, I run over to grab the dog's collar to usher her home.  Great, now ANOTHER literal mess to clean up.  As I approach Haley, the neighbor storms out her front door and begins shouting at me, "Your dog pooped!  Your dog pooped on my lawn."  She points and wags her finger in the direction of the mess.

I have hit the brink of madness as I retort, "We're moving.  We have a few things going on here.  SERIOUSLY?!  Do you think I am going to leave it?!  CAN'T YOU SEE WE'RE MOVING!"  I am furious.  She didn't even give me a CHANCE to clean up after the dog.  I wish this witch would get a clue.  These are the neighbors with their doors shut tight and their unhappy aura emanating from their home.  They don't answer their door on Halloween and they garden in their backyard while wearing hats with large brims to hide their expressions and lurking views of the rest of the neighborhood.  It is beyond me how they can find any joy in life.  Maybe their joy comes from making others unhappy.

The only interaction I have ever had with this woman otherwise was when she was driving away from her home with her gardening gloves on the roof of her car.  I happened to be pulling away at the same time behind her and scooped up the gloves.  I pulled up behind her at the stop sign as we both leaving the neighborhood.  I remember shoving the gearshift of my car into park and running up to her driver's side window to return her gloves to her.  I can vividly recall her stunned expression and thankless response.  I believe Karma will come full circle for people like this. 

I turn my back on this lady so there is no question about my feelings.  I huff loudly at her as I grab the dog's collar to walk away.  The collar slips off and I curse under my breath as I scramble to get it back on.  I storm off clutching the dog's collar.  I head home passing my next door neighbor who is still thoughtfully sitting with Michael on her front stoop.  She says very clearly, "Don't worry about it, hon.  I will clean it up for you."  Tears well in my eyes and my skin feels hot.  "It's okay, I got it," I reassure her.  She knows how inappropriate and infuriating this whole scene was.

I feel my face contort as I try to stave off the crying.  I shove the dog in the house and tell her firmly to stay, even though the door is open.  Where is a damn doggie bag???  I find a random one in the car hatch and with my head held up I double back to clean up the poop.  I mutter under my breath the entire time.  The witch has gone back to her wicked house.  I feel eyes on me so I am sure she is peering out of one of her windows to make sure I cleaned it up.

I stomp home along the sidewalk.  My husband, who has witnessed everything from afar at a friend's house down the street, has no idea what happened as he calls after me.  So does our friend still watching Michael.  I answer with my auto-pilot response, "It's okay.  It's okay.  It's okay..."  I trail off as I hold the swinging bag of poop in my right hand.  I realize I am shaking I am so upset.

I plunk down the bag in some now unknown location because I am starting to black out with anger.  I storm into my house and with movers all around, I realize I have no privacy.  I walk into the laundry room.  I crumple into a heap in a corner between the dryer and the laundry tub and start hysterically bawling.  I am crying so hard, I can't breathe.  The burning tears streak my face.  I am fully cracking.

Oh no.  Here it comes...

The verbal manifestation is just emerging as my husband hurries into the laundry room and tries to calm me.  I am screaming incoherent fragments he can't piece together based on the train wreck he just witnessed.

"Nothing of mine stays nice...  EVER!"...          "NOTHING!"...          "We're moving for you!  And your career.  I have nothing!"...          "That lady... She is CLUELESS.  We have never left poop ANYWHERE after our dog.  How dare she?!"...          "And brilliant timing.  Some neighbor."...         "It would have been nice for her to give me a minute, A MINUTE!, at least to clean it up.  She didn't have to yell at me!"...         "Why do we have to be THOSE people?  ALL THE TIME??!"...          "Can't we just be NORMAL?!"

He hugs me as I shout and violently shake.  He tries to quiet my rant.  I pull away and continue yelling in tongues.  I am close to an out of body experience.  I want the whole world to hear me, naughty words and all.

And in the aftermath, I am left with a broken spirit and a shattered iPad that quite appropriately had been my Mother's Day gift.  Why can't anything of mine stay nice???  Why can't I ever enjoy anything or EVER RELAX?!  I answer these in my head.  Simply, I have two small, active children and a busy family.  That's why.  There is little satisfaction in my self-answered interrogation.

My eyes are now swollen and my face is red when the tears have stopped.  I feel broken and exhausted.  I am angry and overwhelmed.  My husband leaves me to check on the boys with our trusty next door neighbor.  I try to gather myself and a lightening bolt thought enters my brain.  I am now that person who is a mess through a move...  I am THAT PERSON I had joked about with the mover only hours before.  I sneer, then break it with a snicker.  I walk out my front door to see how the boys are doing.  One of the movers walking by stops, he puts his hand on my shoulder and says, "Moving is stressful...it's alright."  He smiles and continues on.  The gray clouds are starting to leave and the sky is slowly beginning to brighten.

When I arrive next door, everyone assures me that the iPad screen isn't shattered that badly.  It is still fully operable, they assure me.  But I am sick with frustration.  We walk inside and my neighbor pours me a cup of coffee.  I sit in the comfort of her kitchen with the boys as we had many times before.  My head hurts, but I feel as though we have gotten through the worst.  I feel the tears start again and I choke them back.  Soon the last boxes will be loaded on the truck.

The move will continue.  Our lives will go on.  It is but a blip in the bigger moment.  With all the insanity that day, I would later learn some pretty invaluable lessons.

Days later, we sit in the car for an extended duration to our new home on the East Coast, I know it is behind us.  I know how special our next door neighbors are and how lucky we are to call them friends.  I know how wretched and unhappy other people can be and I will pluck those folks out of my life as I can.  I know how wonderful my husband is as he always fixes what is broken.  I am in awe that he was able to replace my iPad with a shiny new one, within a day, just before we leave from Chicago.  I know how our family can endure, even in the wake of a crazy amount of drama.

I look back at the boys during our voyage, both enthralled with the iPads.  They watch shows, play games, and are completely smitten with the activities on the devices.

The irony is that while the move was a nightmare, the 14 hour drive with two small kids and a dog is almost too easy.  It's laughable all because of this amazing technology.  I turn back around and look directly out the windshield to view what seems to be an endless Interstate 80 ahead.  And anytime my life can be a little smoother, even a fraction easier, well, these days...  I'll take it.  Thank you, Mr. Jobs, thank you.

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.

All I want for Christmas.

This week, the Christmas prep is underway at our home.  The lights all twinkling.  The pretty gifts starting to hide under cover of beautiful papers and magic ribbon.  And the yummy scented handsoaps are now out the bathrooms.  We no longer light candles, at least like I used to.  I fear my boys inhaling some invisible soot.  Ridiculous, I know.  But there are certain things that are just different.  I miss scented candles, so the antibacterial handsoaps will have to do.

This is also the first Christmas without nuts.  Dylan was diagnosed with nut and peanut allergies earlier in the year.  No chestnuts roasting on an open fire, around here.  Uh huh.  Nope.  No peanuts.  No almonds.  No traditional family coffee cake littered with crunchy accent pecans.  None of my mother's famous peanut butter fudge that I could eat a whole tin of as a child.  None of it.  Having to rethink traditions and navigate the holidays with a new insight...  or at least dodge the landmines.

Earlier this week, Michael helps me wrap some Christmas presents.  He is good company and in a bossy tone keeps telling his little brother who is playing a round of golf in the kitchen and family room, "No, no Dy-Dy.  This is a big boy job.  I am helping mommy with tape.  No, no Dy, you're not big enough."  If anything it does give me a good laugh.  And Dylan could care less, as he is repetitively practicing his golf swing.

But it is clear that Michael is excited at the completion of each package.  Each one wrapped in shiny gold or red striped paper.  He helps me choose the heavy fabric ribbon and tie each one on with impeccable precision.  I hold the pretty satin among my fingers, wrap over and around the first wave of ribbon, and then his little finger would, SMACK, hit the first tie of the bow to hold the ribbon in place for the final knotting tie.  He knows his job and he is going to do it with the intent of one of Santa's elves on Christmas Eve putting the final touches on toys for good children all over the world.

Then he helps me pick out the special gift tags.  I use pictures and greeting cut-outs from this year's extra personalized Christmas cards.  He is thrilled by the personal touches these add to the gift...  He continues to persist that each gift should have a picture of him...  just him.  For the record, I have never claimed that my kids are not narcissistic.  Evidently, Michael is comfortable with everyone's love for him.  Then Michael eagerly runs the package into the other room with urgency and care to place it gently with the other packages.  His joy and thrill of Christmas tasks is palpable.

Yesterday, Michael announces to me that he wants to write his wishlist.  He is intent on documenting for Santa Claus exactly what he wants...  an orange remote controlled car, a candy cane, and a space ship.  He asks that I write the words out on a separate sheet of paper so he can copy them onto his paper independently.  We sit together as he lets his wishes be know.  His letters are skillfully done and he is quite the artist by drawing the car and the candy cane he wants.  But to be sure that there is no room for Santa's misinterpretation, he asks if we can give Santa my version also, which he has adorned with Christmas ornaments along the bottom.

All of this on a day that my two sweet kids are featured in the Chicago Tribune.  Our story was shared with thousands of people.  Our fight with CF every day.  The lovely family picture of the four of us on the cover of the Pediatric Health Report still makes me laugh.  The facade.  No stains on anyone's shirt.  No one fully scowling.  And everyone looking at the camera at the same time.  A Christmas miracle in itself.

A better insight into our world is me trying to get dressed after our gift wrapping session. With the kids downstairs in the family room doing treatments while watching TV, program of choice, clearly, A Charlie Brown Christmas.  I decide to look presentable for the day...  a big deal on any given weekday.  I throw on jeans and a casual shirt and head for my unorganized make up drawer.  I shuffle items around quickly since I know the clock is ticking.  I pull out my basic black eyeliner of the drawer and delicately start to line.  POP!  Amazingly, over the ear-shattering TV volume of a Charlie Brown Christmas, I hear a tube pop off the vest and machine Michael uses airway clearance.  I run down the flight of stairs and to the family to put the tube back on.  Then, Dylan's nebulizer mask slides off his little head.  I put it back on.  Then, run back up to my bathroom.  As I rummage around the drawer for perfume...  POP!  Oh brother.  I run down replace the tube to its proper position and run back up.  Then I hear it give again.  Tubes are off of Michael's vest.  I fix them.  And this time, Dylan is pulling at his mask.  Dylan is smiling his brilliant, lovable smile with his dark glittering eyes.  "All done."  He makes the "safe" motion with the focus and certainty of a major league baseball ump.  Oh brother.  He fights me the rest of the treatment.

Then, I get the added joy of cleaning up after the dog that is eating cinnamon crumb muffins out of the trashbag.  Typical.

But a wishlist, huh?  Gosh, my Christmas wish is obvious.  Anyone who knows me wouldn't even ask the question.  The answer is there, before the words are asked.  Just spend a day with my family, actually an hour or two with us, and it is answered in kids' endurance and regimen.  It is answered in the daily struggle with what's normal and what's not because of CF.  And it is answered in my heartache.

All I want for Christmas is a cure.  A cure.

A CURE.

My head is pretty fuzzy this morning, but I awake to realize that none of our nebulizers had been sterilized last night.  32 stupid plastic pieces my boys' breathing relies on.  EVERY DAY.  I am frustrated that I can't ever truly rest my weary head.  I can't ignore that task.  Even if I am exhausted.   Most days I can barely keep up.

CF doesn't care about the nebs not being sterile.  Or an important meeting.  Or a busy day.  It's always present.  Always in the way.  It's a matter of maneuvering the best path each day.  And on top of it, dealing with, well, everything else that comes along with life.
This could be perceived as an annoying rant.  But, CF isn't about me.  I am not ranting out of selfishness.  I am ranting about much more than that.  It's about my kids who are fighters.  I am just the bystander in awe of their strength and their will.  But it *is* about the quality of life for them and for our entire family.

Yesterday, as we did evening treatments, Michael picks up a stuffed animal that he had found around the house.  Though he doesn't have a particular attachment to it, I watch him as he pretends to strap it into a vest and mask.  "Oh oh, Mommy, he has 20 more minutes..."  Then he continues, "Ah ahhh, Mommy," as he wags his finger in my face, "he forgot his sprinkles."  And then he motions as though he is delivering pills to the the furry animal.  The he hugs and cuddles it, "My baby."  He rocks it.  Outside, I smile at Michael and laugh with him that "Uh oh, he better take his medicine" and commending Michael for doing such a great job caring for his little baby.  But on the inside, my heart hurts.

It is one time that that I can see with crystal clarity that our normal is heartbreakingly NOT NORMAL.

Late yesterday, as we drive to get the boys' haircuts, Christmas music is pouring through our car.  Michael sweetly says over the melody, "Mommy, can I be you when I grow up?"

I am stunned.  I am almost unable to get a response out.  I am clearing my voice through the first words of my retort, "What?!  What do you mean?  Why do you want to be like me?"  I am expecting a contemplative answer, because that's just the kind of kid Michael is.

"I just want to be you when I grow up."  Simple.

I start crying.  A complete torrential downpour of tears.  It's the nicest compliment my kids can give me.  How sweet.  How wonderful.  And then the terror sets in...  seriously, I can never let my kids be as neurotic as me!  But what a truly special, thoughtful gift of words.  I am laughing and crying as Michael's little face shows confusion directed toward me in the rearview mirror.  "Mommy, why you cry?  Are you sad?  Why you sad?  It's okay, Mommy.  No cry, Mommy."  He continues to console me.

Although, I really want that cure this Christmas, rumor has it that I might have to wait a few years.  Possibly even a decade, but it's not that far off, at least that's what the experts say.  And I really believe that some Christmas, I will in fact get that wish.

Instead, this year, I will simply take my son's love and adoration and be thankful for all that I have.  EVERY DAY.

Oh, and if you happen to see Santa or write to him this year, would you mind putting in a good word for that cure?