Thursday, December 30, 2010

9Volt Battery

So, as I sit here stuffing chocolate covered pretzels and my mother's untouchable, delectable chocolate fudge in my mouth oblivious to the crumbs on my shirt, I am nostalgic with the love and joy of the season.  I am also relieved it is over.

I swear I have been very close to ringing that fat jolly old elf's neck on many occasions recently.  Let's see, one night the heat goes out and the tally is an icy 59 degrees by 7 am before the tech can come out and fix it -- with a full house of guests.

Another episode includes our chocolate Labrador Retriever eating a whole hot dog off of our kitchen counter during dinner.  And finally since our hotel is full at capacity, no vacancy in this house, every bedtime includes a battle with our sons since they refuse to sleep in the same room.  Dylan trains for the Olympic Gymnastics Team by tumbling off the giant air mattress in his room all the while Michael reprimands him.

And in the days leading up to Christmas, Santa keeps hearing contradictory requests from Michael.  Seriously, he's had all year to drum up his wish list and he has been deliberate about wanting an orange remote controlled car.  Then in the final days he starts underscoring his wish for a blue remote controlled car, a red remote controlled car, a yellow remote controlled car!  Each day is a new color added to the rainbow of desired motorized cars.  Ugh!  Believe me, it takes some re-convincing Michael that since he has asked Santa for an *orange* remote controlled car, Santa is probably working on it even though he kept changing his mind on the color of the treasure he desired.  Blue?  Red?  "No, no," we assure Michael, "it is probably orange and if you keep changing your mind you might be disappointed."  Sigh.

Hustle bustling, emotions overflowing, delicacy creating, and Christmas spirit transpiring.

But there is also love.

We are lucky that we have family from all over, near and far, celebrating with us this year.  My family from West Virginia  make the trip to Chicago.  All the way from the Appalachian mountains whose supernatural beauty keep you intrigued from day well into the vast sky of stars at night as you gaze across their landscape.  We were also joined by my family from bright California where surfing and warm sun is life.  Our family nearby, even down the street, join us to celebrate Christmas day.  For this we are blessed.  Even in all the craziness.  I will fold up this Christmas with all its moments and tuck it away in my mental treasury.

Among the typical ongoing CF treatments for the boys and the scramble that Christmas always brings, there are moments to cherish.  The kids playing touch football in the basement with Uncles.  The first time my nephew from Los Angeles sees and plays in snow.  The smell of my family's traditional Christmas coffee cake on Christmas Eve, fragrant throughout the house.  There are so many special moments.

We have a Christmas Eve for the memory books...  filled with dancing white flakes all day from the gray Chicago sky.  I love white Christmas's and this one didn't disappoint.  Late morning on Christmas Eve, the kids and the biggest kids (the adults) go sledding across the street at the park.

The adventurers bound through the door with stories and laughter.  The kids' hands are icy and their noses and cheeks are magenta.  Hot chocolate is the request...  and I deliver warm, steaming mugs around the kitchen table.

Without a pause, we move on to cookie decorating under the warm glow of the kitchen lights.  There is creamy Betty Crocker frosting and sprinkles of every kind.  The kids design all types of cookies, from sinister snow man sugar cookie creations to pretty, decorative Christmas trees.  All in preparation of the big man's visit down that chimney that night.

Child-like giggles and booming voices plume through my house.  I watch the concentration on Michael's face as he adorns his white frosted tree sugar cookie and the sweet, delicate smile of my niece as she creatively places black stripes on her sugar cookie candy cane.  My nephew flashes his bright smile as he recalls his sledding experience and gets a little help from his dad with his cookie creations.  My mother looks on with joy, and I imagine her heart bursting with the love only a grandmother can feel with all four of her grandkids boisterously chatty around the project.

Then we decide to check the iPhone app that tracks Santa's every GPS movement through India and China.  As the evening wears on, the kids keep insisting that I check on his geolocation so there is no room for doubt that he is on his way.  I knew I shouldn't have purchased that app.  It becomes a nag.

Soon the evening winds down, the appetizers are put away, and the lights are dimmed.  It is time for little heads to hit their little pillows.  Once the kids are all tucked in their beds, the magic begins.  But even magic has its flaws.  Like the massive train set that doesn't fit any table in our house, but still  requires Santa to set it up before the kiddies awake in the morning.  Great.  Didn't see that one coming.  A train set too large to set up on anything else than my dining room table.  But the certified train engineers, Daddy and Uncle, together work diligently to crack the code and build a train set up that is worthy of a medal...  just minus a few pieces.  I glaze the final frosting on the cinnamon coffee cake and head to bed.

Christmas morning is a surprisingly even paced morning for gift opening.  No frenzy here.  Michael wakes up first, and gently and respectfully whispers, "Daddy...  Daddy!"  The loudest hissy whisper gets our attention but thankfully leaves everyone else still in slumber.  Michael's eyes are flickering with light and rapidly scan everything as he hurries down the foyer stairs.  He passes the train set that Santa has left for Dylan and heads into the family room.  There he sees presents wrapped in candy cane and peppermint paper.  His eyes grow big.  He goes through his stocking with care.  Michael meticulously lines up each prized candy cane as he removes it delicately from the magic stocking.

Next, he rips into his neatly wrapped gifts, crunching the paper and discarding it on the floor.  We watch Michael's thrill receiving his space ship and his orange remote controlled car, his requests from Santa  "Open it, open it!"  I am floored that he hasn't woken up Dylan yet or my nephew.  Then we realize as Daddy opens the car's packaging...

Santa didn't get a 9Volt battery.

Santa was told by his elves doing reconnaissance work at Toys R Us that this particular car already had a specialty battery included.  But it turns out that, nope, it doesn't take a specialty battery and, nope, a 9Volt battery is most certainly not included.  Seriously?!  Christmas morning and we don't have a 9Volt anywhere in the house.  I am calculating my options, the best-sounding one right now includes taking a battery out of our smoke detectors.  It's almost that panicked.  Then we realize if we can track down an old dumpy toy, last year's remote controlled car (yes, completely ridiculous) then we can get the newly delivered car from Santa to work.  The frenzy to find the damn battery ensues.  As Michael's whining and impatience continues, the other kids actually make their way downstairs one at a time...  receiving the gifts they wished for.  Dylan is totally disinterested in the gifts and goes the entire day without opening one gift, although Michael gladly opens all of Dylan's presents.  Instead, Dylan plays with his favorite bowling pins he has been focused on for weeks.  Standard.

AHa!  We find the 9Volt battery and load it up into the prized new toy.  And VROOM!  It scurries across my foyer floor.  Slam!  Right into the wall, nicking the buff wall paint with a charcoal streak.  Awesome.  Wouldn't be Christmas without more damage to the house.  We exchange gifts with our family and Michael adores his presents.  "Cool!" he exclaims at his new calendar from his Gigi (my mother).  He is constantly asking me about what day it is and now he can figure it out all by himself with his very own calendar.  He is unrelenting about opening it and wanting to put it together, which we continue to redirect his attention to other things since the calendar has at least a million pieces likely to meet their fate in the bottom of a garbage bag of discarded wrapping paper if we are not careful.  The calendar is the perfect project for the new year...  when he is quiet and well-mannered, not shouting, "more, more presents!" while jumping up and down.

The day continues with a visit to my husband's family, with more breakfast and gifts.  More love to go around.  We have another lovely brunch and the boys receive other treasures including new sleds, games, and even toy golf clubs from their Nonna and Papa (my husband's parents).  Other than bowling, Dylan just loves golfing.  He will find any utensil in a stick form and something resembling a ball and play 18 holes around our house on any given day.

The clubs also come with their risks.  Even though they are padded for safety, my boys find the one way to use these for injury.  Just yesterday Dylan hits Michael in the head with the one non-foam portion of the club.  Immediately a large egg swells on Michael's blonde head.  Thankfully, I am able to intervene as I see Michael drawing his club back to retaliate.  My quick reflexes get me their just in time before there is further harm to either kid.  Fantastic.  I hope that this isn't the trend.

To cap off our Christmas Day, we have an Open House to celebrate with our extended family.  My kitchen swirls with energy.  And a buffet of unimaginable tasty delights lines my counters and tables.  Sweet food.  Hot food.  Hearty food.  Finger food.  Dessert food.  You name it.  We have it.  As I look around at the feast, I can only imagine the volume of leftovers that will be crammed into my fridge when it's all said and done.  I take a swig of my Cabernet.  And I certainly do not need these calorie-packed treats for my waistline as I stare down the barrel of 2011.  But the mingling and the warmth around my house, reminds me how very lucky I am.  The adults bantering and the kids playing are the authentic reminders that this is what it's all about.

It's about the joy, the wonder, and yes, it is also about the panic, the worry,  the scrambling around for a 9Volt battery, and of course, it's about the EXCESS.

It's a lot.  A lot of food.  A lot of gifts.  A lot of stress.  A lot to handle. And day filled with a lot of family.

Family near.
Family far.
Family in heaven.
Family who can't be with you but are in your heart.
Family that are friends by definition but in your heart you know are also your family.

It's about taking that family and taking these moments into the new year to embark on unseen adventures, to create new memories and and to find more love.

As I notice and wipe the chocolate crumbs off my shirt, while gazing at the twinkling tree lights, I know it just wouldn't be Christmas without it.  All of it.

Thursday, December 16, 2010

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.


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?

Sunday, December 12, 2010

The lottery.

It all began with a lovely date night with my husband on the eve of my birthday.  His company's holiday party, filled with friendly conversation and plenty of martini glasses filled with, uh, cheer.  We had a great time, wrapped up the evening with a gourmet pizza, prosciutto, and olives at a posh Italian restaurant in downtown Chicago, and rested our spirit-filled heads at an oasis in the city.  End scene.

December 11.  My birthday.

I awake in the hotel, no insanity, no headache, no kids yelling my name or demanding things as I emerge from my slumber.  Instead peace and quiet with the love of my life.

Nice.  And.  Quiet.

We take our time stirring, indulge in the custom-order breakfast with compliments of the hotel, and call to check in with our family who are watching the boys.

After our laze, we get ready and head out into the gray Chicago morning to meet up with family and pick up the boys so we can head over to a friends' house for brunch.  As we meet up with the boys, Mikey's little sparkling blue eyes peer over the descending window.  He and Dylan are bundled up in their car-seats.  "Happy birthday, Mommy!"  Michael flashes a broad smile like he has just opened a gift.

After some quick chit-chat, I hop in the car.  And I get the report from Uncle...  Michael refused to wear his cheery red sweater.  Standard.  I can't wait to see what's ahead for the day.  We shove off to the party.

We arrive at our brunch and friends start arriving.  To my delight, I see that Michael is wearing his festive, prep sweater.  I ask Lou how he managed that negotiation so seamlessly, since we have both agreed that Michael is an expert negotiator.  "Actually, Michael was really good about it.  He put it right on when I asked him."  Really?!  My child?  Refused something and then pleasantly agreed?  Clearly, this is not my child.  Or better this is not my life.  I am just waiting for the Ghost of Christmas Past to appear.

The boys are playing and visiting with the other tots.  The adults are enjoying some laughs and the lovely gathering of friends that span decades.  What a great birthday, I observe, watching the pleasantries.  We all have some laughs about Michael and Dylan's slow-motion boxing matches.  Dylan's acting performance, one of my good friends observes, can earn him an Oscar.  Michael's deliberate right uppercut sends Dylan slowly crumpling into a heap on the floor.  Emotionless defeat in the toddler's face.  He slumps and doesn't move.  All the adults are in an uproar laughing.  Yes, these are my boys.  Full of life, funny as hell, and the center of the party.

In my brain, I decide that going home and throwing on my yoga pants and take-out from my favorite Italian restaurant with my husband would be the topper for the day.  Fun, relaxed, and a perfect way to welcome my mid-thirties.

After 3 hours, the kids are melting down as evidenced by Dylan's tantrum once he spots my holding his pint-size dress shoes.  He dramatically throws himself on the floor kicking and screaming.  Writhing around on the floor, he is verbally assaulting me in his own incomprehensible two-year-language and a right jab into my jaw.  After some wrestling and reprimanding, I am exhausted.  But the boys are bundled, ready to head out in the cold, dreary rain that has started to fall from the heavens.

Safe in the car, and my husband in his car caravanning behind us, we begin our trek home.  We hop on a busy street in northwest Chicago, heading for the highway to take us back out the burbs.  Pelting rain and a slushy mess, the conditions are worsening.  But the roads are surprisingly moving.  Maybe we will outrun the worst of the storm.


Screeching metal, my halting SUV hard-lines left toward another lane of traffic.  I recover the car, break and pull over out of the way of other bustling traffic just past a stoplight.  Michael starts screaming and Dylan is dazed and confused.  I start swearing.  I am yelling loudly and shaking frantically.  My brain scurries through a thousand thoughts, all hopeful we are all okay and that the car isn't insanely damaged.  The most prominent next thought is about my husband...  is he okay?  What the hell happened?  I am past being concerned when I see him pull his car over directly in front of my car, and get of his car, his feet landing firmly on the pavement.  Lou and I are both scowling and muttering as we get out of our respective cars trying to compare notes on what happened.

Since Lou had been in his car behind me, he had seen the entire collision.  It was simple.  Another driver had pulled out and hit my car.  I was in the flow of traffic going 30 mph, no turn signal on, no foot on the break pedal, nothing.  Just driving straight behind another car, and Lou's car behind mine.  This driver just pulled out into on-coming traffic.  That on-coming traffic being, Me.  Some birthday.

I stand in the pouring, icy rain as the man walks over.  He is visibly shaken.  He swiftly pulls out his wallet and tugs at his driver's license and insurance card.  He hands them to me and says, "I thought you were stopping to let me pull out."  WHAT?!  I am beyond annoyed at this point.

The passenger door of my car firmly resists as I open it to find a pen and start taking down this young man's information.  Great.  The damage to our car is considerable.  Just ask my passenger side door.  Michael is now crying and Dylan is screaming as I start to scramble for a piece of paper.  I explain to Michael that everyone is safe, everything is okay, but that we will a be few minutes to figure things out after our accident.  I ask for his patience.  He is a good boy, completely confused, but he continues crying.  Dylan, not understanding any of it, is still screaming.

Agitated, I begin writing down all of the other driver's information while Lou call the Chicago Police Department from his cell phone.   The cold rain is unrelenting and it is obvious that we are not going to get anywhere with the state of affairs.  The Chicago Police suggest we head over the nearest station to file the report.  I jot down frantically scraps of information as my shocked brain can digest them.

Name...  "Mikey, everything is fine."

Address...  somewhere in Maryland...  "Mikey, don't repeat the naughty words mommy said."

License plate number...  "Lou, 4560 Pulaski?  Is that the closest police station?"

The rain is blotting my hair and dripping in my eyes.  And then pen stops DEAD in my right hand.

I focus and refocus on his drivers' license.  No way.  I don't believe it.  His birthday.

December 11.  Today.

I snicker slightly at the absurdity.  I realize in that instant that this is fate's way of checking in with me.  A gentle reminder that all is okay with the world.  That there is a plan for me.  A plan for us.  Beyond what I can even fathom.

A collision's timing so unbelievable, you couldn't write it to be more ironic.

I lean out of my car and say, "Hey, man, it's my birthday too."  He responds, "Aww, no way, really?"

We hurriedly wrap up the business, give the young man the address of the Chicago PD, and we drive off headed for Chicago's Finest.  I learn that the other driver will not be able to come to the station immediately as his car will not budge from the spot where we crashed.  Stuck, he sits and waits for someone to pick him up.

I ponder this as I stand in the sterile, cold police station filing the report.  The officer is coolly pleasant.  I say to her, "It's my birthday."  She looks up and looks back down to keep writing the report.  "And, it is the other driver's birthday too."  She looks up again.  Not realizing fully what I said, I underscore, "both of our birthdays...  today."  Now, she smiles at me and laughs.  "You should go play the lottery."

Only 1,000 babies are born each year with CF in the United States.  Every time 2 carriers of the CF gene have a child together, there is only a 25% chance the child will have CF.  I would take 75% odds to Vegas.  The point is that the odds are against me and my husband having kids with CF.  For that matter, odds support that CF is rare.  But we had not one sweet angel with CF, but two.  And with the absurdity, I have often joked with people to not bother talking to me about odds...  that we already won the lottery in our house, the genetic lottery.  And one of our kids with CF also has food allergies.  And the odds keep me baffled.  How these things are possible are beyond me.  But it is simply part of my family's reality.

So, as the officer quips about the lottery, I start racking my brain for the possibilities of today.  The consequences of today.  The other driver and his path after today.  And what this all means.

Finally, the officer finishes scribbling, she hastily tears off my carbon copy proof the accident and shoves it across the counter.  Well, of course, proof beyond the undeniable gouge in my car's bumper and audible groan from my car door.  I get in the car as Lou hops out and the boys are dreaming sweetly, angelically in their car-seats.

Our cars pull out and we head off to battle the bumper to bumper traffic on Illinois' esteemed Kennedy tollway.  I am surprisingly lonely in the crawling traffic.  The thick, charcoal clouds and ruthless precipitation make the idling car void of any warmth, both literally and emotionally.  The searing red brake lights are irritating.  It is quiet except the pattering of the rain and the squeaking sweep of my windshield wipers.  My birthday.

My cell phone rings breaking the monotony.  The other driver on the other end of the phone explains that he is almost at the police station.  He asks me for my information, and I quickly counter that the police have everything he needs.  "And, oh," I laugh, "Happy Birthday."  You can hear the smile on his face on the other end of the line, "Oh yeah, you too.  Happy Birthday."  I hang up.

It is another hour before we swing open the door to our home, where the warm, glowing Christmas trees greet us.  And our insane chocolate labs keeps crying with joy that we have arrived home.

Quick decisions take shape for the two crabby boys to eat, do their breathing treatments, and snuggle into bed.  I want nothing to do with my designer boots or dress cloths.  Comfort is the prescription for me.  I rummage through a laundry basket and, score!, find my trusty yoga pants and favorite grubby top.  My husband leaves to pick up some reliable take-out from our choice restaurant, since clearly I am in no mood to make a meal.

I sit down.  No TV.  No iPhone.  No children.  No distractions.  Just like my quiet morning, my evening finds a serene moment, which is a rarity in my life.  Today's insanity was about pause.  I have my health.  I have a beautiful, healthy family.  I have food, a safe home, and warm clothes.  I have loved ones, family, friends, and wonderful support.  These peaceful thoughts envelope me.

It is in the this calm that I realize on my birthday that I have indeed won the lottery.

Tuesday, December 7, 2010

Door Number 6.

The hustle and bustle of the season throws me into a constant reactive, can-never-get-enough-done in a day mode.

I feel this way all the time, just the way that I am a guess.  What do they call it?  Personality Type A?  I hate that label.  But it's true.  I answer the phone on the first ring (or at least I used to before I had kids), I live by a planner (yes, even as a mommy), and I go go go.

But during the holidays, it's amplified.   I am totally overwhelmed.  Piles of junk mail.  Mounds of laundry.  Stacks of unaddressed Christmas cards.  Countless small items to be cleaned or sterilized.  Loads of emotional baggage...

Just last week, I am making the boys' lunches and sterilizing their nebulizers for breathing treatments in a huge pot of boiling water.

Two seemingly simple tasks while the boys run around playing.  Within seconds, the timer is announcing that the nebs need to be taken out of the scalding bath, the dog is losing her mind barking at her nemesis (the UPS guy), Michael has an accident, and TINK!, I hear a loud, indiscernible noise.  But my gut tells me that this is not good.

I hurry amid the other commotion in the kitchen into the foyer to find that Dylan has teed up a burgundy glass globe ornament with a makeshift golfclub.  There is now burgundy and gold dust littering my foyer and study near our large Christmas tree.

First thought.  What do I deal with first?  Pee can wait.  Dog is just nuts.  Water can keep boiling.  Ornament.  Broken ornament.  Broken glass.  Glass is dangerous.  A ha!  Clean up the ornament.  My thought process.  All.  Day.  Long.

My job is constantly putting out fires.  Correcting mishaps.  Teaching and reteaching.  And picking up, clearing out clutter.  Go to bed.  Repeat.  I used to wonder what stay at home moms actually did.  I figured they had a 'cupcake' life.  How nice.  An idyllic thought.  And when I was working full-time and traveling to exotic places like Minneapolis and Green Bay, it seemed a lovely thought to be at home with kids some day.

There are some days I swear, as parents we don't even know our own names.  And the weariness catches up with us.  Not the cupcake life I had envisioned.

So, yes, we are an Elf on the Shelf house.  (Boo, hiss)  I know.  I felt a few years ago it was a great idea.  Now it is very mainstream.  And even cliche, but it really works for a disagreeable tot.  So Michael believes this sweet little elf, which he named Peter Elf, flies to the North Pole and gives Santa a dissertation on Michael's manners and Dylans's white-hot temper.  And if they have been good, every morning they will find candy in their little Advent Calendar and will find Peter Elf in a new location in the house continuing to judge if the boys are going to make the 'nice' list this year.

So, our mornings lately, look a little like this.  Mikey bursts out of his room at 6 am throwing his door wide open, bolting the 10 steps over to the wood Advent Calendar House.  He then calls for us and tells us what door we open that morning (An Advent Calendar can really sharpen those counting skills since kids really want to get it right to get their treasure).

After Michael snags his candy treats, Dylan hears the pandemonium and wants in on the action.  He flings his door open saying, "Wauwee, wauwee!".  In Dylan language that is "Lolli, lolli!" Then they go on the hunt around the house for Peter Elf.

But yesterday was an example of how parents' exhaustion and holidays collide.

So, typically every evening before I call it night (or even if I have forgotten I will wake up at 2 am and), I help Peter Elf fly to a new location and stock the one door on the house with 2 candy Lifesavers.  They are always the same color, because who wants a peppermint candy followed by green apple candy?  Gross.  And I of course leave a lollipop on the table next to the house for Dylan.  Flavor not pre-planned.

Then off to bed and my brain checks out.

Night before last was different.  Exhaustion set in and I asked Daddy to handle the holiday magic.  And being the amazing husband that he is, he did.

Yesterday morning, same deal.  Michael wakes up.  Rattle, rattle, bam. Tip toe tip toe tip toe.  "Mommy, Daddy?  Where are the treats?"  I roll out of bed and meet Michael in front of the house with his mouth agape.  Stunned that there are no treats behind door number 6.  I am trying to see through my groggy, sleepy eyes what we have missed.  I search around the miniature cubby hole behind door 6.  Humph.

How to explain this one to a 3 year old?  I am sure Daddy put the candy in the door...  I heard him rustling through the treat bags and the open and close of the tiny door last night before I drifted off to sleep.

So, I coolly explain that maybe Peter Elf was mistaken and we start searching the other doors.  And Ta-Daaa!  Game show contestant finds the treats behind Door Number 7.  Michael looks at the candies and looks back at me, completely flabbergasted.  "Mommy, they are not the same."  I look a the cello-wrapped Lifesavers in his hand.  One peppermint and one green apple.

I chuckle.  "Michael, Peter Elf mixes things up some times.  He wants to see if you are paying attention.  And I'll bet he was tired last night.  It's not easy for an elf to fly all the way to the North Pole every night and back."  Yeah, I'll say.

My husband and I would later laugh countless times over the coming days recounting how Michael was shocked that Peter Elf could get the door wrong.  And to add insult to injury, that the candy was mismatched.

So, I decide smartly that I will make tomorrow more along Michael's more acceptable terms.  I choose to put two Wintergreen Lifesavers in Door Number 7.  Of course, two of the same flavor, but a new flavor for him to enjoy...   He likes Peppermint, so Peter Elf should be scoring some big points with the Wintergreen.  Content, I head off to bed.

The next morning, Michael wakes up, flings his door open, and bounds over to the house as evidenced by his heavy, hurried steps.  He doesn't wait for us and is thrilled to find two treats waiting neatly in the right spot.  Lou meets him by the house, and together they crawl into bed with me.  Michael laughs recalling how yesterday Peter Elf had made a mistake yesterday morning.  "How dilly!"  (His three-year-old linguistics haven't quite perfected s's, "How silly!")  He looks at his white Lifesavers.  Rips one open and places it in his mouth.  Smacking the Lifesaver to the roof of his mouth over and over and his eyes searching the ceiling, he frowns.  He keeps smacking on the candy, but clearly disappointed and distrustful of the new flavor.  After working it around and thinking it through, he proclaims, "I don't like this, Daddy."

So much for smarty pants Mommy getting things back on track.  Michael is so disgusted with the new candy options from Peter Elf, he leaves the unopened Wintergreen Lifesaver on our dresser before spitting the other one out in the trash.

Well, I guess there is always Door Number 8.

The real question in the sanity check this holiday season, who is keeping who on their toes?

Wednesday, December 1, 2010

Putting on the holiday pounds

I have a profound respect for fat babies.  Truly.

In a way that very few moms do.  Sure fat babies are cute.  Everyone loves them.  With the Stay Puffed Marshmallow Man arms.  The chunky monkey thighs.  The tubby bellies.  But my respect runs far deeper than that.

Clearly, I am not endorsing obesity...  no, no.  It's not right for everyone.  And, let's be honest, it's the holidays.  We are all overindulging and will pay for it at the gym later in January.  (Groan)

Let me adjust the lens a bit.  Many individuals with CF have trouble maintaining a healthy weight.  And many CF clinicians believe that there is a correlation between nutritional status and lung health.  It goes for anybody... you eat well, you are well.  So to speak.  It's a little more intense with CF hanging around.  While their are different schools of thought on the matter, the directive is clear.  HIGH CALORIE, HIGH PROTEIN, HIGH SODIUM DIET.

As the rest of the world deals with the run-and-gun of the holidays... the fast-food shopping meals, the extra slice of pumpkin pie, the creamy egg nog, and the Christmas candy galore.  Before you know it, the skinny jeans are, well, extra skinny jeans.

How about a 600-calorie shake with Haagen Daas ice cream?  I can't even fathom drinking one.  These are encouraged for my kids.  We live in a totally different world.  I am always trying to figure out, "how can I add calories to that?" if it's something my kids like.  The cookie eating binges are legendary in our house.

Today on the way to a friend's house, in the car, the boys are chowing dried fruit.  Eating handfuls of it... instead of content that my kids are enjoying a natural, healthy snack, instead I wonder, what can I do to these to make these even higher calorie?

Basically, someone with CF often doesn't fully absorb all the calories their body needs.  But on top of that, they are burning calories at a greater rate because of continuous inflammation in the lungs and always warding off infection.  The body just isn't getting enough fuel and is always burning through it at warp speed.  My boys will some day need calories like Michael Phelps.  No joke.  We know many individuals with a g-tube (a gastrointestinal or 'feeding' tube so calories can be put directly into the stomach, often while the person is sleeping) is a reality.  Literally, some kids just don't get enough calories in during the waking hours, so they get calories while they sleep.

At plenty of tables across America, moms are focused on what their kids eat.  What types of foods are their children eating?  How much are they eating?  How can they eliminate sugar or sodium?  And we all know there are rules with eating with families... the "clean your plate" rule.  Or the "no thank you" bite.  Or mine was growing up, one glass of milk before anything else to drink at meals.

But my brain is re-calibrated.  I think of food differently (which, believe me, is not good for my own waistline).  Some recent examples...  I wonder if I can add half-and-half to that?  I can melt butter on that, and he'd never know.  I can spread butter *under* the cream cheese.  Honey, do you want to dip that in Cool Whip?  Do you want another custard yogurt?  Do you want a second avocado?

Leading up to Michael's hospitalization in early November, he isn't eating.  For a kid that has always been an eater, he isn't eating.  At a doctor's visit, they warn me that my son, who was a massive bowling ball of baby two years ago, has a growth chart that was now considered 'AT-RISK'.  It is the first time I hear these words.  Nutritional status.  At risk?

Okay, fair enough, he is a preschooler.  All kids his age go through eating jags.  But THIS IS DIFFERENT.  And before long, we learn how SICK he really is... and he is admitted to the hospital because of the dangerous lurking junk clogging his airways and the Staph infection doing its dirty work.  It is now evident why he isn't eating.

He barely eats in the hospital.  He barely eats the few days we got home and started the IV's at home.  He.  just.  isn't.  eating.  Not that I am paying attention anyway.

Once the medications and his little immune system aggressively start waging war on the Staph, it takes some time for the pink to return to his fair cheeks.  For the dark circles to disappear from under his eyes.  About five days after discharge from the hospital, Michael starts asking to eat.  Asking for snacks.  Asking when dinner will be ready.  Asking for another yogurt.  Another handful of chips.  Whatever it is, I am delighted that he is interested in food and I hear him ask for more.

So, as I amping up for this clinic visit, I keep thinking about how this all translates to his weight.  And what it means for his cough that blasts him first thing he wakes up.  Basically, clinic is a very lengthy, highly complicated "check-up".  I am quite sure that our CF Care Team braces itself when we descend on our clinic appointment, and takes a deep, wild sigh once we walk out the doors.  It is three long hours of dizzying information, my toddlers scaling the walls, and an exercise in patience that I can't even really do justice.  A glimpse is that Dylan punches the pulmonologist.  Twice.  Nice.  Real nice.

But it is an opportunity to review with a crew of caregivers who we almost consider family.  Review my kids' coughs, review their growth charts, review the medications and dosing, and review my sanity.  However, the last part couldn't even be confirmed as present during the visit.

This year, putting on some pounds at the holidays has a very different meaning.  Inside, my emotions are nervous, almost frantic...  And then the good news.  Michael for the first time in six months, gained about a half pound.  Oh the happiness!  And Dylan, I am proud to say is in scientific terms a big, ol' meatball.

While there is a lot more of the fallout from our clinic visit, this is wonderful news.

Ahh... the holidays.  A time for gathering.  A time for joy.  A time for gifts.  AND A TIME FOR FOOD.

And this Christmas, when you see that pudgy little baby at your family gathering, or you take an extra handful of chocolate sweets, please, smile for me.

Michael says to me today, "I want marshmawoahs."
I reply, "Marshmallows?"
Thoughtfully, looking up and nodding he responds, "Yes, I think we should ask Santa for marshmawoahs."

Now, if only can Santa figure out a way to add extra calories to marshmallows...  Hmmm...

Sunday, November 28, 2010

As if thanks isn't enough...

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

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



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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, November 22, 2010

Objects in the Mirror are Closer than they Appear

Look out your rearview mirror.  What do you see?

I am not talking your year books from high school, or your life novel you've been meaning to write...  your rearview mirror.  Your most recent few weeks.  Mine are filled with some surreal images that give me a heavy heart that quickly, inexplicably shifts to gratitude and joy so completely overwhelming.  My heart spontaneously bursts with joy and I crumble weeping.  Michael will look at me and say "Mommy, why are you sad?  Don't be sad."  But what his sweet little heart doesn't yet understand, is that I am crying because I am so HAPPY.

So, as I gaze at the speeding rearview mirror, I see the images shrinking.  Not fading, shrinking.

The hospital room with fluorescent lighting.
The yellow gowns and face masks of the doctors and nurses where only their eyes tell the truths when they are talking.
The red firetrucks on Michael's pillowcase.

The suitcases spilling over with clothes and artifacts from home.
The Styrofoam containers (boo! to the non-ecofriendly packaging) from our take-out.
The balloons, signs, and cards our loved ones sent.
The beautiful Chicago skyline out of our 9West window where so many babies, kids, and teenagers spend time at Children's Memorial Hospital.

The goofy hospital clowns freaking out the kids and adults alike.
The kind nurse to show us how to deliver IVs to Michael in the warm glow of our comfortable family room.
The syringes with the white caps.  The syringes with the blue caps.
The round medicine ball attached to Michael every 8 hours...  for 3 weeks.

They will all but disappear soon when I blink.  Or when I am busy.  Or when I become distracted.  For now they linger, as I count down the IV's left to do until Wedsnesday at 4 pm.  I don't know if I want these images to go away and never come back or if I have lived and learned a lifetime in just weeks.

I have learned how truly blessed I am.  When I hang my head at grace on Thursday, I will be thinking about all those images in my rearview mirror.  And the other truths that will be in my heart.

I know of families and children who will be spending Thanksgiving in the hospital.
I know of a young woman who is in the ICU having just received her gifted new set of lungs to help her take a full, satisfying breath.
I know of families who are gathering for the first Thanksgiving since losing a child.
I know of those who are fighting the sick of heart, sick of mind, and sick of body.

But we are here together.  Each day with a new view in that mirror and each mile further along on our journey.

While I am thankful for all the wonders and love we have experienced in the recent weeks, and all the BIG grown-up things, I am sure for Michael it will be much simpler.  Much sweeter.  He will be most thankful for the PICC being removed on the Eve of Thanksgiving.  And to be able to go back on being, well, a kid.

He has been such a good boy, but he does firmly plant the question every day.  When is my PICC coming out?  I had promised him last week.  When is my cough going to go away?  I have to tell him 'soon', because that's what I am hoping.  And these continue to be the images flying by my mirror these days.  But not the only ones.

Michael to Dylan yesterday morning, "Punch me, punch me right in the face, Dylan."  And Dylan's response in his limited 22-month vocabulary, "FIGHT!"

This told me things had resumed our normalcy.  We will move on to the next mile down on the life highway.  And soon the images will disappear, but we are all the wiser knowing where the road has taken us.

And I am most thankful that my boys are fighters.

Friday, November 19, 2010


You obviously know a little about our story if you found this blog.  But I thought I would polish up many of the details for some of you who don't quite 'get' my Facebook posts or my random comments in conversation.  I hope to give you a peak into our lives with a chronic life-threatening disorder.

Boy meets girl.  Boy and girl fall in love, get married, work a lot, then have a baby.  And work A LOT MORE.  True for all young families welcoming babies...  A LOT OF WORK.  Bottles.  Diapers.  Sleepless nights.  PAUSE.  But right about here, insert this... Boy and girl also find out about about this little thing that lies on Chromosome 7, these two little genes that together create...  well, a little interference.  A genetic glitch, well sort of, that will change their kid's life and their own lives' forever.  What's next for boy and girl...?

Good question.

This is our story.  And there is so much more to it.  Boy and Girl decide to activate.  No, not like Twin Powers Activate...  rather, actively change our life path.  I believe our approach, honesty and perspective has set our course of changing this, well, genetic code.  Two words.


Two silent genes in both of our families landed *SMACK* in our laps.  Actually, our baby's lap.  And would change the course of our family's future.

CF creates digestive problems.
CF creates breathing problems.
CF creates organ problems.
CF creates bodily infections.
CF wreaks havoc on every cell, by INTERFERING with a critical bodily protein from working to properly balance (in the most basic terms) salt and water in the body. 

We believe there are medications that are 'cure-like' that are being tested and researched to correct this "glitch".  However, we are realists.  And while we are involved and seeking a cure today, it simply doesn't change the reality that this blip of genetic data on Chromosome 7 creates a massive amount of work simply to stay healthy.  EVERY.  SINGLE.  DAY.

Improving quality of life.  Sounds like a pretty cliche phrase used all the time.  Maybe you have seen it recently in a direct mail piece you received from a drug store.  Or on the billboard of your new smart phone.  But here it is in our world.  Let me break it down for you...

I dole out roughly 59 pills or medications a day between my two sons.  Try keeping that straight at 7 am when you haven't had a cup of coffee...

And Michael right now is doing ONE HOUR and 45 MINUTES a day of lung therapies a day to keep his lungs clear of lurking dangerous mucus because of a lack natural hydration in his lungs...

And I am playing chef to two highly picky eaters who require a (get this!) HIGH-PROTEIN, HIGH-CALORIE, HIGH-SALT diet...  my trips to the grocery stores are legendary in my quest for dodging the low-fat, lite, low-calorie items that the rest of the world seeks.  Let's just say that I am fervently boycotting this government mission to take sodium out of foods.  I know, totally counter to the rest of society....

And when there is a pause in my day, there really isn't.  My hands are busy washing medical equipment (nebulizers) and sterilizing them for breathing treatments.  Or sanitizing the most used surfaces in my house.  There is always something to tackle...  I could go on.


I am not griping.  Not complaining.  Sure, it's tough.  But I am one very lucky gal.

What?  What is she talking about?

In the 1950's, kids with CF didn't live long enough to attend elementary school.  And we now live a time where individuals with CF are living into their late 30's, and it's believed that babies born today will live even longer.  Because of those scientists.  Because of those parents who wouldn't quit searching for a better life for their kids in the decades previously.  Because of those donors who are helping to fund a cure.  And because of the will of these amazing kids and adults to fight every day and live life to it's fullest.

I have been told by folks who are really "in the know" that we are close.  I have read it in research articles from the scientists in the lab.  "The Man on the Moon" for medicine.  The "Medical Miracle of the 21st Century".  And you know what?

I believe we are.

Thursday, November 18, 2010

I thought the day would never come...

Ok, folks, I have done it.  It's official.  I have started a blog for the whole entire world to peak under the tent at the chaotic circus attraction that is MY LIFE.

Come one, come all.  So it begins...  put your seatbealts on...

Two Salty Boys will keep you laughing, crying and above all keeping the faith.

Keep it real.  Ciao for now.