WWAD? (What Would Allah Do?)

It's slim pickins in the pueblo when it comes to maternity garb.  Well, quite honestly, it's slim pickins when it comes to any kind of garb at all.  As far as I can tell we have three official dress shops, one of them doubling as hunting supply store during season.  Hey, it's crisis over here (pronounced kree-seize) so I guess you gotta make your buck/euro wherever you can.

Imagine the excitement when the Moroccan's wife branched out on her own and opened up a women's shop on the main avenida just a stone's throw from his souped up version of the Dollar Store.  Though I wasn't expecting to find anything too sexy from this Muslim shopkeeper, I'll admit to hopes of a flowing (and waistless) dress that might ease me into the inferno that is summer in southern Spain.   Maybe it would have a pretty floral design that would mimick a henna tatoo.  Exactly what I need floating around my rapidly expanding midsection.  Sadly, my maternity collection, though I think Liz Lange would take issue with me calling it that, from the past six years is chock full of little more than polyester pant suits, long sleeved tops and two button cardigans; telltale signs of the summer mating of the schoolteacher in hopes of springtime babies.  

<><> <><> <><>

Caption?  Are you kidding me?!?
Let's make it a game, shall we?  
Post your best caption in the comments
section because I'm at a loss.

So with visions of airy cotton dresses, I hoofed it down to the new dress shop, so new in fact it doesn't even have a name, my 20 euro note burning a hole in my pocket.  And this is who greeted me.

Isn't she, uhm, subtle?
What in the hell?
And braless to boot. 

I had never seen such, such...what do I even call them?  Okay, so let's try again.  For a shop run by the only Muslim family in the pueblo, I couldn't believe my eyes.  Were those boobs or missiles?  Holy balls those things were huge!  Maybe Moroccan women are bustier than Spanish women.  Maybe Mohamed got some kind of a discount on this mannequin seeing as her boobs are twice as large as her head.  Is there such a thing as bargain basement for mannequin shopping?  Jeez o Pete.  Those tits are ridiculous.  And how did his wife feel about such bazookas in her storefront window?  It's not exactly Jihad material but it's gotta be cuttin' it close on a few of those doctrines listed in the Qur'an.

I shook my head to clear the image and entered.  Please have something that will fit me a month, 2 months, 5 months from now.  And may it not have rhinestones or leopard print.  Please. 

I scoured that store for far longer than it was worth.  I flipped past the zebra print leggings, ignored the "I Love insert African nation of your choice" tees,  and skipped the Spanish housecoat section altogether, though it was tempting.  And finally, found this.  Not bad and I still had some change left over to accessorize.  I would walk out for under 9 euros, thank you pueblo pricing but it remains to be seen how long the fit will last.  At three months I'm well, grande.  I guess if push comes to shove I can always go for the button down shown on the gal in the window.  In fact, at a closer glance, it just may be the perfect blouse for a  lactating mom, don't you think?

SPRINGTIME IN PARIS

Yesterday was a first for me.  Against my better judgement and cloaked in my contraceptive nightware (sweatpants and a thermal long sleeved t-shirt), I called the kids into the master bedroom closet. 

"I need your help, guys.  I'm not sure what to wear to work tomorrow.  Whaddya think?"

Lola looked up at me bewildered as if  to say, "Clothes, dumbass.  Clothes,"  while Charlie ventured a bit more trepadatiously, "You mean we can pick it out?"

"Sure.  Why not?"

Lola eyed my shoe rack, eyes scrolling from summer to winter and back again as Charlie made a beeline for the pants hanging at eye level.  "Here.  These."  Nice.  My black fatties.  They hung too loose and I'd be tugging them up all day but they were far better than the alternative hanging two inches to the right.  Definitely dodged a bullet there.  Phew.  "And THAT one!"  A finger shot up to a silver sparkly top with a plunging criss cross neckline. 

"Ooooooo, " purred Lola, "I like shiny."

Conservative on the bottom and a little rock n roll on the top.  It's not like I had a choice at this point.  Besides, staying true to the rules of my Before 40 Bucket List, I would not try to sway the kids one way or another.  This was their choice.  I'd have to redeem myself at work another day.  "I like it Charlie.  Good choice.  But what about my feet?"

Charlie reached for my black pumps with the gray speck of buckle on the toe and I felt a wave of relief wash over me.  Apparently he had remembered these shoes as part of my standard "look" when wearing anything black.  That and I'm sure he was sick of the game and just wanted to get back to the pile of race cars strewn all over the living room floor.  I would go to work the next day having completed my first bucket list item and no one would be the wiser.

Well, Lola was all over that shit.  "No!  I want these."

So much for discretion.  She had selected a pair of brown strappy sandals with a wedge heel.  A mistake I had made three years ago and had forgotten to purge.  I briefly contemplated how to play this card as Charlie examined them.

Clunk. 

The pumps hit the closet floor with a hollow thud.  It was decided.  The brown sandals would be going to work with me in the morning. 

"You're gonna need some socks with those, Mama."

"Ya think so, Charlie?"  Oh boy.  Now I was starting to sweat.

"Oh yeah.  There's snow outside.  Your toes might get cold with these holes."  He wove his fingers through the straps of the open toe to emphasize his point.

"Ohhhhh, yeah.  I hadn't thought about that, good point." Shit.

He blew past me through the closet doorway and headed for the socks packed snuggly the bedroom's armoir.  Before I knew it a pair of gray ankle socks were thrust into my ribcage.  Thanking him, I managed two additional thank yous; one for the fact that he had pulled a pair with no holes and two that he had somehow, perhaps by Divine Intervention, missed the drawer full of white running socks.

And as fast as it had started, it was over.  My outfit for the the next day of work was laid out and ready to go.  The kids took off, content at having accomplished said chore so efficiently and I stood there taking inventory:

• 1 pair of black pants
• 1 silver, long sleeved shimmery top with a plunging neckline
• 1 pair of gray ankle socks
• 1 pair of strappy brown sandals on a wedge heel 

A smile crept past my lips.  And I remembered Paris, a city I have visited just four times in my lifetime and loved each time more than the previous.  The Parisian women with their silky scarves blowing behind them and their designer shoes clicking with delicate precision against the sidewalks crowded with foreign tourists in dirty tennis shoes. 

My foot.  My shoe.  My sock.
My Mission Complete.

Tomorrow I would be one of them - Parisian. 

Not in fashion but definitely, most definitely, in attitude.

HELP WANTED

By the fourth snooze, I was awake but still not willing give up those last seven minutes of warmth underneath the fluffy down duvet.  It was afterall, my day off from the gym and I was hellbent on staying in bed until the last possible moment.  Five hours of sleep does not a Pollyana make - at least not in my world.

So there, I was up.
Up before the birds.
Up before the sun.
Up even before God himself.

Joe will argue that I was born a morning person, but this is simply just not the case.  I claim 'victim of circumstance' much more readily than I do a genetic predisposition to waking up early.  My earliest childhood memories revolve around swimteam practice at an ungodly predawn hour.  Then there was the stint as a newspaper carrier back in the 80's when child abductions plagued suburbia.  I remember waking at 4AM just to ensure that there would be time enough to get the route bundled and delivered before heading to swimteam practice at 5 and then off to school by 6:30.  By the time I hit college I was so used to getting up early that it just made sense to get my classes out of the way so I could have the rest of my day free.  As my sorority (sorority girl, Moi?!?) sisters stumbled into the bathroom to get ready for the day I had already finished my third class, worked out and was getting ready to head to the coffee house on O Street.  Post graduate life was no different.  Wake up, work out, clean up, drive in...voila!  I'm done.

Am I used to this routine?  Well after 30 some odd years of it, I'd have to say yes.  Yes, I am.  But that doesn't mean I don't get tired.  As was the case this morning when I beat that alarm clock into submission. 

Once.
Twice.
Thrice.  Do people even say that word, 'thrice'?
Anyway, my point is this.  It was dark.  It was cold.  And I was tired.  I had one pissy diaper pressed up against a shoulder blade and a second one smashed up against my cheek.  Not even the 'aroma' wafting through a soggy bag of piss could rouse me.  I simply did not want to get up.

But I did.

get ready for work
let Luna out
empty the dishwasher
switch out the laundry 
set the table for dinner

And then the first one woke up...

change her diaper
give her vitamins
warm her chocolate milk
get her dressed
comb her hair
prep the nebs
hook her up & start treatment

as the second one started to rumble...

prep the bottle
lay out clothes for the day

while the third one, bless him, slept.

prep his chocolate milk
lay his clothes out for the day
empty the backpack & hang on front door
pack hat & mittens in his backpack

It was still dark.
It was still cold.
But by 6:30AM I had accomplished more than the U.S. Army.  Well, not really but it was an ego boost to think so.

Before racing out the door towards work, I would wake up Joe who had fallen asleep (again) on the couch in the basement.  He would be so grateful to me for getting up on my 'day off'' to help him get his day with the kids started. 

One treatment down meant one less 'deal with the devil' that he'd have to make that morning.  One less diaper to change would be one less wrestling match with The Prizefighter.  One less trip upstairs to pick out clothes that never match would mean a good impression at the doctor's office - important not to him but to his Type A wife.  And he would spring up from the leather couch, hoist me up in his arms and carry me up the basement stairs all the while stroking my ego with praises of "You're amazing!  I don't deserve you!"  At the front door he would pull me in tight, bend me over backwards and plant a passionate kiss worthy of a Harelequin romance novel cover "Goodbye, my love.  I'll be counting the minutes until you get home..."

Well, evidently the memo on my fantasy never went out and instead of Fabio, my descent down the basement steps was met by Al Bundy asleep like a baby amidst Hurricane Hugo's aftermath.  There lay Joe, my snoring husband face down in a small puddle of his own drool and surrounded by a crime scene.  We had been vandalized.  Again.

Every single puzzle dumped onto the floor.

Every single book off of the bookshelf.

Every single Matchbox car (of which there are roughly 4,324) strewn about.

Every single stuffed animal thrown in a heap.

Every single doll house furniture piece 'rearranged' on the floor. 

Every single dvd out of its case.

Every single inch of plastic Thomas the Train track laid out, unconnected.

Every single bandaid (yes, Band-aid!) out of its 500 count box and taped to the leather couch.

And my Fabio, our King of the Castle laid out on the couch, one hand dangling over the empty bowl of potato chips and the other just daring me to beat him to death with it, snoring away.  His only salvation: the fleeting thought back to that website reminding me that things could be so much worse for us, for him.

I stomped up the stairs, annoyed as all hell.

I cussed up a storm on my drive in to work.

I inhaled a pot of coffee and outlined the Come to Jesus Family Meeting we would have later that night.

Then, exhausted from my rant, overwhelmed at the thought of the chore that awaited at home and disappointed that my morning's efforts had gone unnoticed, unappreciated, the solution became all too obvious:  I, no, WE needed help.  We were outnumbered in need of a lifeline. 
And so I'm posting it here first, convinced that the power of the Internet will see me through.

WANTED:  WIFE

A MINX JINXED

When it comes to fashion, I am, in no uncertain terms, my own worst enemy.


Practicality trumps design every time.  Take a walk through my closet and you'll see what I mean.  If like food, clothing had an expiration date, the Department of Health would have shut my closet down eons ago.  A walk through my closet is like a walk through the history books of bad taste.  Try as I might, I have just never been able to put two and two together.  I'm like an idiot savant, always going back for more beige straight legs and v-neck knit tops.


So last weekend I decided to take a stand.  Garbage bag in one hand and visions of Milanese catwalks to guide me, I hit the master bedroom closet with a vengeance.  Goodbye elastic waist bands.  Sayonara prêt-à-porter t-shirts in eight different colors.  I would donate my fashion faux pas to the homeless of Des Moines.  Surely the guy waving the cardboard sign on the corner of 86th and Hickman would love my gray parachute pants with the baby poop stains down the right front leg.  My prized and highly coveted red Spanish rebeca from '94 study abroad was still in one piece save for the missing button and worn right elbow.  Why not pass it along to the lady on 8th and Grand who wears that tattered windbreaker from '85?  Isn't a ten year update considered an upgrade no matter what the decade?


Closet emptied, utilities paid, and credit card balance back to zero, I was now ready to take on the monutmental challenge of updating my look.  There would be only one rule by which to abide:  I would not purchase a thing, not even underwear, from any store that made shopping carts available to the general public. 


Buh-bye Target. 
auf Wiedersehen Walmart. 
Costco?  Adios, amigo.  May we never meet again.


I was going to shop like a REAL woman; in a store that sold clothing, not tires or lawn furniture.   Now, in light of the fact that I have not won any recent lottery, this was a project in-the-works so to speak.  I would set aside a small portion from each paycheck and 'invest' it in a new wardrobe piece until I had restocked the closet with items made post Y2k.  Garbage bags overflowing, I would be lucky to get this accomplished within the next 3 years but hell, I was more than willing to give it a shot.  And so it went.  I grabbed the keys to my ride - the sexy, white minivan parked out front because the garage was now a post Christmas toy lot - and then high tailed it out to the mall.


The ride over was two steps up from pleasant and bordering on euphoric.  A silent ride with no squabbling kids in the car, no Thomas the Train DVD blaring in the background...yeah, you know the ride - not well, but you know it.  Me, Myself and I set free by the closet purge and on our way to chasing down the invisible errand.  I was about to discover a whole new side of myself and in the spirit of the makeover, I swung in to Caribou for {gasp} a house coffee.  Cheers to Me!  January 2011 would be my comeback year - THE YEAR I TURNED MINX.


Well, not quite.


Parked at the mall, I threw my head back, shaking my invisible Farah Fawcett mane after that last swig of  medium roast.  Grabbing my purse--well, okay 'diaper bag' - the one bulging with wallet, 3 sets of keys, day planner, empty baby bottle, 'just in case' diapers in 2 different sizes, ziplock baggie of wet wipes and about 55 broken crayons nestled at the bottom I set out for the mall.  I'll admit, there was attitude in my walk across the parking lot.  Not quite full saunter but a definite click in the step.  Look out, Giselle I'm workin' this runway.   I was well on my way to channeling my 37 year old hottie.  While Pam Anderson still had her boobs and Botox, I had a fresh paycheck and the homeless man in post partum duds from 5 years ago as incentive.  He was NOT going to outshine me.  Pam?  Yeah, probably.  But not the guy sporting my throwaway threads. 


I'm buyin' some hipster skinny legs.  Ones with an ultra short zipper.  Oh yeah....
Gettin' a new shirt too.  With buttons down the front.  Didja' hear me?  I said BUTTONS.  Oh yeahh...
I may even get some new boots.  With a pointy, bonespur makin' heel.  Oh yeahhhhh... 

That's how I strutted into Jordan Creek Mall: completely and totally full of myself.
J.CrewBananaRepublicAnnTaylorExpressTheGapAbercrombie&Fitch...
They were all there.  Open and ready for my business.  And there I was Pam Anderson suddenly turned Hellen Keller.  A fish out of water, I was definitely out of my element.  Where were the signs marked Automotive, Pharmacy or Electronics to light my path?  Suddenly so alone I had been swallowed whole by the mall's atrium; intimidation and uncertainty washing over me like waves of nausea before diarrhea strikes.  Where in the hell was Annie Sullivan to help me navigate this misadventure?  Oy vey.


To be honest, I don't even know which store I stumbled into first - probably J. Crew given its proximity to the mall entrance.  Old habits die hard and I made a beeline for the rounders on the back wall, grabbed three pairs of skinnies off the sales rack and darted into an empty changing room.  Off with the old and on with the new but wait a minute, Whoa Tiger!  Why is the button sitting so far below my c-section scar?  Is that normal?   That scar is at least a mile to the south of my belly button, maybe even more.  Uhm Houston, we have a problem.  I gave a good tug but after about 15 seconds they slid past my little boy hips right back under the scar, the zipper ending a little too close for comfort if you know what I mean.  I then made the mistake of trying to put my shoe back on thinking somehow that shoes would right this obvious wrong.  Tilting awkwardly to my right to slip a finger in behind my heal, I shot straight up again as the waistline of the pants licked my butt crack on its way down the last half mile. 

What the hell?! 

So ass crack is the style nowadays?  Great.

Just how did Mr. J. Crew figure that I was going to be able to heft Henry on one hip, Lola on the other and wrangle Charlie by a hand with my ass hanging out in the breeze?  Would Child Protection Services be called out on me?  Last time I checked the PTA had no dresscode but postpartum rumpshaker was probably more than pushing it.


Pair number two was no better.  And three even worse.  Pissed, I kicked my leg furiously back and forth as if trying to fling steaming dog shit off the bottom of a new shoe.  Then I went to hunt down a sales clerk.

"Uhm, hi there.  Look, do you have anything with a slightly higher rise?  I think that's what you call it.  I'm just looking for something that doesn't hit me so...uhm...so...you know, so....low.  Ya' know what I mean?"


The kid just stared at me.


I tried again, "I guess I need something that's not so lowrider."


Blank stare.


Was I speaking Russian?  Did I have a unicorn horn sprouting from my brow?  Yo Gabba Gabba!  Wanna acknowledge me?


"Well, if you're looking for Women's Jeans you might wanna try the department stores."


Excuse me?
I know you're not sending me out for camel toe and 'Mom jeans'. 
Are you?


"Yeah, Dillards will probably have something more your style."


Okay.  So Pam Anderson, I'm obviously not.  But I'm also no Carol Brady either.  I had spent the better part of the last six months shaving the bulk of my muffin top off and I was not gonna leave that mall without a decent pair of pants and a label that proved that I paid too much, dammit! 

Was it my fault that my hips had no curve whatsoever to hold up the pants crafted by a Taiwanese orphan chained to his sewing machine and beaten for using too much fabric? 
I don't think so.

Was it my fault that the past 6 months worth of sit ups had done nothing for the fallen soufflé that was now my midsection?
I don't think so.

J.Crew, bite me.  I'll take the fuckin' pants.
And so it was.  $42.38. 
The price, evidently, of my pride.

A Little Faith

Two months have come and gone since Henry joined our crazy family. Now we are 5. He's the baby I always dreamed of having; rosy cheeked, easy going and a mini Buddah. Finally, a baby that looks like MY side of the family! The bond between Henry and I was instant. So much more quickly established than with either Charlie or Lola. Funny how that works, isn't it?



It's true what they say about the third child, cast to the wolves to raise. Well, not really. But it is crazy trying to juggle it all, that much I'll admit. Where Charlie had an entire website dedicated to him, Henry had a pre-op Facebook post, gone from the news feed before he could even suckle a breast. Where Lola has a binder full of cards and letters welcoming her into our life, Henry was lucky that I even got his footprints into his baby book. I fully expect that his first meal will be served on the floor. And probably in the garage, poor kid.

Yet he still smiles. He is a dream. Rolly-poly hands, a gummy smile - everything I always dreamed of. In eight short weeks it's already impossible to imagine our family without him. "Hey little fell-owe, you wanna' play cars?" invites Charlie. When he awakens it is Lola who announces to the family, "Hen-Weeeeeeee wake! Hen-weeee wake!" The Three Muskateers, that's my crew.

My cousin theorizes that his red hair shielded him from CF. Of that I'm not so sure...he still got that nasty, sonofabitch Delta F508 gene. That little speck of a gene is what I hate most about myself. Big boobs and muffin top aside, that despicable gene is my number one nemesis.

Joe called me at school the day the genetic results came back. "He's negative."

"Huh? Who's negative? Charlie? Put him in Time Out. Just make sure he doesn't get into the Costco bin of laundry detergent. Someone has been gittin' into that bin lately!"

"No, no Kel. Henry. Henry's negative. The test came back. He's just a carrier."

Just a carrier.

JUST A CARRIER.

JUST A CARRIER.

I would later tell my girlfriend of the rush of pins and needles that wooshed through my body. It was a feeling I had never known before. I couldn't explain it and I still can't. Maybe that's the same rush that a heroin addict experiences? It was overpowericng, yet brief. Gone too fast, I wanted it back.

It was I who had declined the amniocentesis. Life for us is good. The cure is on its way. I wouldn't terminate anyway, why risk it? If this baby were to have CF, we'd love him as much as we do Charlie and Lola, simple as that. I did not want to know. I remember leaning into my philosophy with Charlie and Lola; do everything I possibly can, EVERYTHING and then give the rest up to God to worry about. I couldn't second guess God, no, not this time. It was what it was, He would take care of things. I think it's the very first time in my life that I can say that I leaned into the word faith. I thought about that word more in the past 10 months than I have in my entire life. Funny how that works, isn't it?

And so the pregnancy progressed. For a while I was self conscious about being pregnant. I felt obligated to justify the pregnancy to Clinic and other CFers. This is afterall a very controversial topic in the CF community. I secretly wondered if eyeballs were rolling as I lumbered in and out of Clinic visits. But thankfully, by the time the last trimester rolled around I had just about forgotten that we still sported a 1:4 chance of having another member of club CF. It was filed away in the back of my mind; neatly set aside until further notice.

Now I'm a mom of three and it's a mad dash to keep all the balls up in the air. I've got two boys and a girl; two blonds and a red head, two tigers and a cub.   I remind myself that each sibling will share a special bond with the other and I wonder, how will it look this bond?  Will the boys be closer due to their gender?  Will Lola and Henry be closer due to their age?  Will Charlie and Lola be closer due to CF? I ponder these and other questions all throughout the course of a day.  At a red light on the way to the grocery store, between numbers 8 and 9 of the weekly spelling quiz,  while hanging laundry out on the line, these questions float around in my head.   And of course, there are no answers.


Funny how that works, isn't it?

Penny for My Thoughts

"Come on, Mama...what are YOU gonna wish for?"

A wink and a smile crossed my face, "Nuh-uhh. If I tell you Buddy, it won't come true."

Truth be known, I was a little too self conscious to share my thoughts on this question. That, and a four year old has not the time nor the patience to put up with listening to them. This was us a month ago standing in the middle of The Mall of America, our backs turned to a coin filled fountain; breeding ground of wishes, dreams and surely pseudomonas . Joe had given everybody one penny. One chance at making a wildest dream come true. Pennies were cast in hopes of that one wish granted; one lobbed haphazardly, one dropped clumsily, one thrown at rocket speed and mine...mine...mine was burning a hole in the palm of my hand as I strategized.

I can't really blame CF for ruining the moment. No, not this time. I'll take full responsibility for this one. Me and my big fat Type A personality. My parents nicknamed me Patty Perfect as an adolescent. Perfect? Ha! Far from it but the name stuck anyway, like a sticky wad of bubblegum to the bottom of a brand new shoe. Alas, in most arenas I have found this nickname to be a true fit and this moment was no exception. Think hard Patty, this wish has got to be PERFECT.

My strategy for this wish went against every grammatical fiber of my being and as a cool sweat began to bead my furrowed brow, I closed my eyes in deep concentration, willing my wish to come true.

I wish for the excellent health of my family as we live a long and peaceful life in our white washed casa amidst the rolling hills of Spanish sunflowers in the province of Andalucia where our children will recieve news that a cure for cystic fibrosis has been found before the reporters show up at our doorstep to confirm the news that we have indeed won the national lottery.

The beauty of a wish is that there are no rules - something I clearly took advantage of in that run-on sentence of a hope. Lottery, sunflowers and white washed casa aside, there was no way I could leave out good health. But CF? Damn it! How do those two dreadful letters find their way into EVERYTHING?!

Is a penny enough to grant all that AND a cure? Probably not. Maybe next time I'll pack away the Type A, keep it simple and just wish for happiness.

A Glass Half Full

Dear Blog,

Please accept my most sincere apologies. I've been absent lately, lost in life's routine of nothingness. And in this absence I have found myself thinking a lot, too much probably about The Beast lurking in the shadows: Cystic Fibrosis. Sometimes I get so annoyed, so entirely miffed at its constant presence. I've often pondered how I would describe its location to a medical team, in hopes of cutting it out of me like a random yet festering cyst; somewhere between the grisly knot in my throat and the right hand side of the crown of my skull. It bounces back and forth between these two places haphazardly, like a rogue pinball. Some days I don't feel it as much - these are usually the days I'm consumed with the busy-ness that is motherhood and a full-time career yet other days it ricochets back and forth on its own accord, laughing at me as it splits me from the inside out.

So, after a too long hiatus, I'm back and this time with a plan. I know the glass set before me is not quite full yet not quite empty either. And with that, I remind myself to make a conscious decision to look at raising 2 CFers from BOTH perspectives: Parenting CF Kids from a Glass Half Empty or Full Whatever the Case May Be.

Top 5 Cons of a Glass Half Full (Part 2 to follow next week)

#5: The "What-If" Bandit

The rules of the parenting game changed drastically way too early as far as I'm concerned. My worries about Lola getting enough breast milk and her refusal to sleep on her back like the good pediatrician ordered were cast aside instantly upon confirmation of Cystic Fibrosis. Ever since that day, I notice the physical manifestations of my worry; a few more wrinkles, a few (more?) gray hairs, and yes, even a few more pounds. There is at least one CF related worry on my mind per day, I kid you not. What if the neighbor kids get too close with their colds? What if that cough I heard in the middle of the night was more than just throat clearing: a coming cold? the arrival of The Beast? What if the teachers at school don't catch the sick kid who showed up to class because his parents had no option for daycare? What if my kids end up hating sports and instead prefer endless games of Parcheesi to a good cardio workout? Whatifwhatifwhatif...

#4: Tick Tock

Let's face it, staying on top of ANYTHING requires time and a concerted effort. CF is no different. Currently we do 30 minutes of chest clearance PT twice a day. Our CF care team has only prescribed 20 minutes for the kids but my Type A personality usually gets the best of me and I set their vests for an extra 10 minutes. Honestly, I don't know if it does any good for their lungs but those extra 600 seconds of therapy set my mind at ease, at least for that day. It wasn't until recently that we got the second vest machine. Treatment for the kids prior to the arrival of machine #2 took up to 2 hours of each day minimum. I still shudder at the thought of what it would've been like had either child been sick and needed extra vest time. Still, it was a challenge to keep a regular routine due to bedtimes, naptimes, appointments, school, work...aka LIFE.

And like many other diseases, CF is a very expensive one to manage. We are fortunate in that we have excellent health insurance coverage but even so, we are not exempt from the occasional bureaucratic "miscommunication" as was the case with the 2nd vest machine. Persistence paid off and my husband deserves ALL the credit in the world for his hours upon HOURS of waiting on hold, filling out paperwork, and writing letters to mysterious VP's so high up they don't even answer their own phones, only to being told, "No, a second vest is cost prohibitive." I often joke that not only could my husband sell ice to an Eskimo but he could get blood from a turnip...and that he did, to the tune of $16,000 (the cost of the new machine).

PT time aside, we can't complain much and spend our energy trying to keep the kids as active as possible without completely destroying the house. Not an easy feat come January when cabin fever reaches an all-time high. From late March til the first snowfall, "It's an outside day!" is my catch phrase, so much so that Charlie now greets each sunny morning with the same observation. It's great to hear those words come out of his mouth and I'd be lying if I didn't admit to feeling my chest puff up when he runs after the big boys of the block but still I wonder, what would we be doing together if we had those extra couple of hours to piddle away together every day?

#3: DENIAL. IT'S NOT JUST A RIVER IN EGYPT.

"Well, as far as I'm concerned, they don't have it. I mean they don't even cough!"
-family member who shall remain anonymous

Ugh. I've heard this repeatedly from those who, despite my best efforts at educating them, just don't get it. I've made videos, sent literature, extended invitations to clinic visits, and yes, in my worst moments, screamed like a maniac into the phone everything I know about this disease:

• CF IS A PROGRESSIVE DISEASE- it gets worse over time


• CF HAS NO CURE (YET)- do I really need to explain this?


• CF IS LIFE SHORTENING - the average life expectancy of a CFer is about 37 years old


• CF EFFECTS MULTIPLE ORGANS - "Lungs, pancreas, intestines, liver, you name it! People hear CF and automatically think lungs however, it's much more complex than that. CF is a disease of the cells. It boils down to the cellular level because the cells can't regulate the proper amount of water and salt. In short, when the cells don't work properly, a good portion of the rest of the body is thrown off track too." - definition by Ronnie Sharpe, a CF warrior

It's aggravating, if not downright insulting to think that some of the closest people to me view my diligence and dedication to my children akin to crying wolf. Believe me, I can think of a million and one other things to exaggerate about and CF is definitely not on the list.

2. THE CLOCK

Imagine 17 or 18 years old as being the new "Middle Age". That would make me practically geriatric. Ridiculous? Scary? Well, it's both in my opinion. Science has come a long way baby, but not far enough for my comfort zone. Currently, the average life expectancy for someone with CF hovers around 37 years of age. That's great news considering where we were 20 years ago but it isn't good enough, dammit and though I've never spoken these words aloud, my greatest "what-if" bandit remains clear: What if Charlie and Lola turn out to be just average, or God help me, below average?


1. WALKING ON THIN ICE

Imagine setting out on a stroll across Lake Michigan in the dead of winter. You start out feeling pretty confident; one foot in front of the other and you're thinking to yourself, "Yeah, no problem. I got it!" It's not until you get past the no turning back point that you start to notice the fine lines in the ice, the ones that look like they're going to split apart at any minute and swallow you whole into the the bone chilling black waters that await below. A quick glance over your shoulder to get your bearings and you realize that your starting point is a mirage at best. At this point you can do nothing...you've already gone too far to turn back yet you just don't know if, pardon the expression, you have the balls to take another step forward. What do you do?

That's how I feel about CF. Sometimes I'm walking along, kids in tow, and I feel like yeah, it's not so bad. We CAN do this, we'll make it through. There are other times however where I'm as uncertain as the idiot out on the middle of the lake. How in the hell did I end up here? And the point is, it doesn't matter, I AM HERE. When you're the kind of person who thrives on control, being dealt a deck that you can't read is a real problem. You do the best that you can possibly do and pray like hell that it's gonna be enough to get you across that lake. There is no turning back - you have no more choices. One step in front of the other until you reach the other side and if you're lucky, really, really lucky, when you do finally make it you'll be able to look back and say that it was all worth it.