THIRTY SEVEN

THIRTY SEVEN.

That number just blows me away.  Has it really taken thirty seven years for me to love my body?  To admit that I'm no longer a natural blonde and probably never was?  To own up to the fact that a size 10 is my version of 'petite'?  Simply stated, it's taken me thirty seven years to accept myself for who I am instead of worrying about who I am not. 

In less than six months I'm going to be turning 38 years old; dangerously close to 40 though a milestone all the same.  It dawned on me the other day that this, my 37th year, is especially poignant in light of the fact that 37 is actually the most recent the life expectancy released by the Cystic Fibrosis Foundation.  I'm no stranger to this statistic, in fact it was one of the first things I Googled when we got Lola's diagnosis: life expectancy and CF.  Where the answer to my search used to make tears well up in my eyes, I'm pleased to report that this is no longer the case.

I've accepted it.  It's there.  It is what it is.
And I've got roughly 32 more years to change it.
Period.

Five years ago, the same year that Charlie was born and long before we even knew he had CF, a pharmaceutical company out east by the name of Vertex submitted to clinical trials this little ole' drug by the name of VX-770.  Shortly thereafter, it submitted a second drug, VX-809, to clinical trials.  The aim of both drugs was to target the basic defect of cystic fibrosis at the cellular level.  Fix the cells, fix the problem.    Evidently, there's a bit more to it than my peas and carrots brain can articulate but that's the nitty gritty.  For those of you who want it spelled out, you can click here for a mini science lesson that does a pretty good job of explaining things if I do say so myself.

As I turn the corner on January and sail into these last six months as a thirty seven year old, I am looking at new beginnings. My glass is full up to the top and spilling over.   I am as hopeful as ever that VX-770 will gain final approval by the FDA and that VX-809 will continue to show promising results in its testing so that it too can move on down and out of the drug pipeline.  I often think about what it will mean not only for those battling CF, but for anyone battling a monogenetic disorder.  Getting a drug or combination of drugs that can punch a disease - can knock it out - at the cellular level is huge.  HUGE.  Could this pending breakthrough by Vertex eventually impact those fighting sickle cell anemia?  Huntington's Disease?  Hemochromotosis?  I can't get my head around it - my heart yes, but not my head.  Not yet.

So on May 21, 2011, five pairs of running shoes will be laced up in Des Moines.  We are participating in Great Strides, the biggest and most important fundraiser for the Cystic Fibrosis Foundation.  I would like to invite you to do the same, to walk a three mile stretch with us on that day, wherever you are.  Donations made to this event go towards funding the research so crucial to finding a control for CF.  Of you I ask not one, not two, but three simple things:

1.  WALK WITH US
     Wherever you are on May 21, 2011, lace up and walk those 3 miles with us.

2.  MAKE A DONATION
     $10, $20 or $200 - every single little red penny will fill the bucket.  Really, it will!

3.  SPREAD THE WORD
    Pass the link to my blog to your Facebook friends.
    Forward this link in an email to everyone you know
    Talk about CF to your colleagues at work, to your friends at church, to your buddy at the gym, to your cashier at the grocery store - tell them about the crazy picklepits lady who can't catch a break from her Fabio, who wrestled a pair of skinny jeans (and lost), who swears she's part Gitana and who would walk to the ends of the earth if it meant a cure for CF...tell 'em all...I don't care...
JUST SPREAD THE WORD!

2011 is here. 
2011 is now.
2011 is it.

Now let's get out there together & grab it!

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.

MY MCNIGHTMARE

For us, it sometimes seems that there are two worlds when it comes to CF.  The world of pancreatic sufficiency and the world of not.  To the layman this may be new ground.  Pancreatic sufficiency?  What's that?  I thought CF was a lung thing.  What's the pancreas got to do with it?  Quite a bit, actually.

For upwards of 85% of those fighting the effects of CF, the pancreas is a real thorn in the side.  Literally.  Do the math and that's roughly 25,500 individuals who are not only fighting for every breath but also fighting to keep their bodies adequately nourished.  You'll recall that one of the major nightmares associated with CF is the thick, tarlike mucus that gets stuck, plugged up if you will, in the airways of the lungs.  This crud, for lack of a better word, also coats the intestines and pancreas causing the digestive enzymes that your pancreas makes to be unable to reach your small intestine.  These enzymes help break down the food that you eat. Without them, your intestines can't fully absorb fats and proteins thus impeding the nutrients from getting to where they need to go.  Kind of a rough problem to have don't you think?  Break down the 'malnutrition' euphemism and I'm talking about some really important vitamins not being absorbed into the body which can make for a real mess.  Imagine eating a full meal and not getting any nutritional bang for your buck; instead, it running straight through you like water through a seive. 

Take vitamin A for example.  Wanna have some skin problems?  Okay then, eliminate it. 

Then there's B12.  Wanna be anemic for a while?  Fine with me, nix that one too. 

Don't forget about vitamin D.  If you're up for some bone abnormalities axe it along with A & B12. 

Oh yeah, let's not leave out vitamin E.  Neurological problems, anyone?  Really?  Okay, zap it.

You want some more?  Fine.  I'll raise you some blood clotting issues for your vitamin K.

Vitamins A, B12, D, E and K are what I think of as the BIG 5 when it comes to CF.  I'm usually on the edge of my chair when Elaine, the dietician on our team, reads off the kids' levels from the blood tests.  I don't know about you but I think it's high time we had a Pancreas Appreciation Day.

Lucky for Charlie and Lola, we are still living in the world of the other 15%.  Yep, in one aspect of CF we actually won a prize:  pancreatic sufficiency.  Both kids have a pancreas that is fuctioning enough to get by.  Enough meaning, nope, it's not quite normal like the average Joe's, but it is managing to process enough of the goods that we don't have a regimen of enzyme pills to pop before every meal.  As I type this, I wrap a couple knuckles loudly on the wooden table where my laptop sits;  once for good luck, twice for continued good luck and a third time just to be sure Whomever heard me the first two times.  We were told from the git go that pancreatic sufficiency can be a fleeting thing, often waning as time goes by.  So for the time being, I rewind and hit play every few days or so just so I can hear my pediatrician's words of wisdom from way back when we got Lola's diagnosis, "Enjoy the good health while you have it..."  That said, we pay very close attention to the kids' diets; in short, what goes in AND (drumroll) what comes out. 

Even before we became a CF family, we were particularly Nazi in our menu selection for Charlie.  The kid never knew what Gerber was because his Papa made all of his baby food from scratch - typically Spanish if I do say so myself.  Breast milk for the first year, formula never touched his lips. The poor kid never even had a cookie or ice cream until well after his second birthday.  Abusive?  No.  Neurotic?  Perhaps. And quite naturally, we were the laughing stock of the entire extended family.



Overprotective.

Anal.

Ridiculuous.



Whatever.  We had our premie, he was more than thriving and Joe and I made a pact that no matter what the cost, our kids would ALWAYS be given REAL food for a fighting chance at developing a decent palate.  We also agreed that we would never sell out to the convenience of fast food chains or the pleas for Coca Cola.  Afterall, what exactly are the nutritional benefits of giving pop to a 2 year old?  We figured that if he never had it to begin with, that he wouldn't know what he was missing.  And guess what? 

We were right on the money.

Charlie ate like a king and was climbing up the growth charts.  The kid was remarkably healthy too, which we attribute to a diet that is rich in fruits, vegetables and fresh proteins.  We have consequently followed the exact same philosophy with Lola and now Henry.  Until last week.

Yeah, last week was a first for me as a parent.

We were out east at Joe's sister's house; celebrating the birth of Christ and mourning the loss of Babu Mercedes.  It was bittersweet; the whole family together but the center of it - the heart - missing.  Joe's mom had been fighting one form of cancer or another ever since I had met her some twelve years ago.  We were all devastated at the loss - our loss...but thankful that her suffering had finally come to an end and that she had passed with her children at her side.  So there we are, fumbling through the ritual that is Christmas, still somewhat numb from the loss but finding the joy through the eyes of the children who are squabbling, playing, teasing...just being kids.  At one point, we decided to divide and conquer a seemingly insurmountable to-do list by splitting the kids up amongst the adults.  We took off, tackled our respective lists and met back at the house to debrief.  And this my friends is where the double homicide nearly occurred.

SIL:  Lola, did you tell Mamá what you had for lunch today?

Me:  Did Tita Susi and Tita Pepis (note:  Pay-peace, not Pepsi) take you out for a special lunch, honey?

Lola:  [grinning from ear to ear]  Mmmmhmmm.

Me:  What did you eat?

Lola:  MADONNAS
Me:  [hopeful yet worried]  Madonnas?
SIL:  No, she means MCDONALD'S.  And you shoulda' seen her!  What a machine...she went to town on it!

Me:  [jaw clenched, forced grin and feeling like I want to crap all over her white carpet]  What did you order for her?  Chicken nuggets?

SIL:  Are you kidding me?  A BIG, greasy hamburger.  You shoulda seen her wolf that thing down!

Me:  [dryly] Well, I hope she enjoyed it because it will be the last one she ever eats.

The maniacle fits of laughter spouting from my sisters-in-law sent me out the front door and around the block on a fast walk.  Pissed doesn't even come close to describing how I felt at that point.  I was furious.  Go ahead, feed that garbage to your kid, but not mine.  Hadn't they seen Jamie Oliver's experiment?  Well yeah, it was considered by most to be an 'epic failure' but it sure did illustrate a point.  We had invested nearly 5 years in teaching the kids about what a  heatlhy choice is and why it's in their best interest to eat for fuel and these two knuckleheads had undermined everything in 2.2 minutes.  INTENTIONALLY.

I decided to let it go and left it on the back loop of the sub division.  The damage was done.  Ronald McDonald had found his way to my little girl's digestive tract.  I'd just have to keep a closer eye on her the rest of the week - no more 'errands' with the Titas, that was for sure.  So not wanting to make a scene, I trudged back to the house and vowed not to make an issue out of it.  Afterall, the more I drew attention to it, the more the kids would remember the whole thing.  I would give the Titas a Get out of Jail Free card and chalk up the lapse in judgement to extreme grief.  For now it was best to let sleeping dogs lie.

Now reading this, I know there are some eyeballs rolling so let me explain my point of view on the whole fast food boycott.  I know that for many with CF, especially those who are struggling with digestive issues, that food becomes a major focal point.  I've heard so many talk about pumping in those extra calories in any way, shape or form because the effects of CF really make it a challenge for people to keep weight on.  For me however, I struggle with the concept of 'anything goes' just to get the calories up.  When I think about how that processed food is made; the chemicals, the grease, the scraps, the fat - it just cannot be good for your body at all.  I think about foreign nations who perhaps aren't so developed as we are and I wonder, how come I never read about them having a high rate of obesity, heart disease, cancer, diabetes, etc.?  I'm no scientist - in fact I'm about as far left of scientist as one could possibly be.  However, I believe to my core that good nutrition has made a difference in the health of my kids - less flu, less colds, less everything and I'll be damned if I'm gonna sell out now. 

As for Lola's Date with the Devil?  I guess I'll just be thankful that her GI tract is solid enough to handle the garbage that the titas dumped into her. 
Grrrrrrrrr....