Kinked

Cystic Fibrosis.  Yeah, I can articulate the basics but when it comes down to the science of it all, I know just enough to be dangerous...very dangerous.  Lucky for me I have a husband who is really good at taking it all in, digesting it, and then spitting it back to me in laymen's terms which helps immensly when it comes to calming me down at the first sniffle of an oncoming cold or the whistling wheeze heard after a too long hug. It's ironic, really, that my husband the NON multitasker, the NON stress basket of the family, Mr. SoLaidBackYou'dBetterCheckMeForAPulse posesses such a skill.  Meanwhile I'm the one schlepping into Clinic with the checklist of questions written out as a laundry list of whatifs and ohbytheways a mile and a half long.

When you boil CF down to the nitty gritty, the bare bones...it's a disease of the cells.  There's a broken one in there.  Outta commission.  Out of Service.  On the fritz.  And man o man, does that jack things up!  Add to it those 1500+ genetic mutations of which you could get two - the whammies - and you'll give yourself a migraine for sure.  You see, it's just two genes - the gift or curse you get from your parents, on which everything rides.  Sick or not sick,  enzymes or no enzymes, lung transplant or not..the lottery that are those two genes can mean the difference bewteen CF or NO CF. 

My simple, unscientific mind - the one that sorts underwear by color and pants from fat to skinny has no patience for this disease.  We can put a man on the moon.  We can click enter and send a ten page document to Europe in less than a hearbeat.  We can sew a finger, a toe, a leg or an arm back on.  But we can't fix this?  Go on now, get in there, dig out that faulty gene and pop in a good one.  One that WORKS for Godsake.  Geesh!  This is why I'm not a scientist, I guess.  Screw The Scientific Method.  Just get to the answer already.  I mean Come On...

May 15th was our annual Great Strides Walk for a Cure.  Des Moines managed to pull in over $205,000 - it's most successful walk ever in spite of falling short of it's $225,000 goal.  I was pleased, yet miffed.  Okay, truth be known, yours truly had managed to work herself down to outright pissed by end of the day.  I was pissed that I was pissed...how is that even possible?  Well, for starters I was pissed about the fact that there were several family members who did not donate.  I'm talking CLOSE family members - people to whom I wouldn't think twice about giving a kidney or bone marrow.  Family members whose butts I once wiped.  Family members who call to chit chat on a weekly, sometimes daily basis.  They didn't even chip in a measly 4 quarters.  Come.  On.  Is the economy that bad?  Are they that out of touch?  My college roommates from nearly twenty years ago (20?!  Gulp.), the Facebook "friend" who's actually a complete and total stranger, my busy as a honey bee in June neighbor who I never talk to but see whizzing by in her SUV....they all donated. 

My attitude soured as I took a break from picking apart said family members and thought about the bigger picture.  Moolah.  Bucks.  Cash.  Benjamins.  Dough.  MONEY.  The catchy, Money Buys Science and Science Buys Life line that I pimped prewalk started to weigh heavily on me.  Des Moines had collected almost a quarter of a million dollars and there were how many other cities walking?  Houston, Tampa, Chicago, Seattle...millions upon millions were blowing around, whirling and swirling around and around all in the name of a cure.  Just how much money to you freakin' need to cure end this thing once and for all?  I've heard it takes a cool $800 million to get a new drug conceived, tested, approved and to market.  Are you kidding me?  Are we talking dollars or pesos?  EIGHT HUNDRED MILLION?!?!  For just ONE new drug?  What gives?  Are the cells charging a participation fee for each clinical trial?  Is the new company car for the scientists a Rolls Royce?  Is this whole beast just a conspiracy by the pharmaceutical companies so they can create more (profit making) drugs instead of a cure? Pop this gal a Vicodin quick before her head flips off!

The plane was in a huge nosedive, going down fast and I couldn't find the damned parachute.  Like always, I did what I normally do.  I yelled, no screamed, at my husband about the sink full of dirty coffee cups, slammed every door that I walked through, and then...then I splintered.

You see, I'm not a patient person.  No, not me.  Not at all.  I strum my fingers against the steering wheel, willing the car ahead to go just a little faster so I can make the light.  I open the microwave between 1 second remaining and zero just so I don't have to hear its annoying beep.  It's half impatience and half OCD.  But it's me.  So one would think I would know better than to cruise out to the CFF.ORG website post walk.  Like always, I lie to myself, telling myself that I'm going to look up walk results of friends and acquaintances.  But I'm coming clean - it's a lie.  It's always the same lie - a different excuse maybe but the same lie nonetheless.

Like a fool I'm a much too frequent visitor of http://www.cff.org/.  I'm a fool not because I visit so regularly but because I expect to see something other than the face of the middle aged physician who pledges, "I will keep working toward a cure."  Sorry Buckaroo, no can do.  Nope.  Not good enough.  Each and every time I see his face I let out a heavy sigh to give voice to my disappointment at the absence of what I have been waiting for since diagnosis: "We are Pleased to Announce That The Cure Has Been Found." How many times in fact have I seen that guy's face?  A hundred?  Five hundred?  A thousand?  I don't know.  The point is, it's still there.  His face.  His promise.  And I'm tired of waiting on promises.  I want a cure.  Did you hear me?  I WANT A CURE NOW. 

So pardon me if the apathy of a few has wet my feathers.  I know life is too short to wallow.  I just had to purge it.  I'm human afterall.  My feelings get hurt, I whine a little and then I move on, past all the bullshit and onto the next line item.

The kink in my line is fixed and I can go back to life as I know it...crayola on my leather couches, fundraising for a cure, dog hair on my kitchen floor, a husband who snores the whole night through, more fundraising, students who forget homework that was never done and don't let me forget, more fundraising for a cure...you know the drill. 

Oh, and by the way, thanks for the purge.

   

A Baracuda's Fight

I've never been one to test the waters with a big toe first.  No, not me.  I just plunge in, usually head first too.  Impulsive, yeah that's the word for it.  Impulsive.  Yeah, that's me.

And that's what happened last week.  I was in such a state.  A state of frenzy.  A state of panic.  A state of desperation.  Such a state that I didn't think it through.  No proofreading.  No editing.  Nope, not last week.  I just threw it up there front and center.  The chipin link to Conner's Fund was a hot potato in my hand.   I had to pass it off FAST and so I copiedcutpastedandposted as fast as I could get my little mouse to click.  I impressed myself with my technological skills, I really did.  But in reflection, I'm thinking my haste hindered more than it helped.

I gave you a bun with no burger.  No meat.  Where's the beef, Kelly?  Huh??

What I should have done I'm doing now.  As I have the tendency to get long winded, I've got to keep this to a soundbite.  And here it is:

My friend needs help.  Now.

She has been waiting for seven years for a cure.  But it hasn't come.
She has searched everywhere for alternatives.  But she has not found one that worked.
She has turned her back on death.  But it has found her little boy.

My friend's little boy, her Boy Wonder, is dying.  Conner is dying.  The doctors have given up.  But my friend has not.  She is fighting like a baracuda.  Fighting with every ounce of her being.  She is a ferocious lioness thrashing about to save her cub. 

But he is still dying.

I feel desperation.  I feel grief.  I feel so incredibly helpless.  As a mother I cannot even imagine waking up to her nightmare.  As a CF mom, I know the possibility looms. 

So before my soundbite ends, I implore upon you to jump in.  Jump in with both feet.  Make a huge splash - much like that of this baracuda of a momma.  Make a donation to Conner's account.  All monies collected are going towards his funeral expenses.  Yes, you heard me.  Somewhere way out west, on top of the USA, a mother is guiding her baby to the heavens.  She has written about this journey, this nightmare, on her blog.  Go, see for yourselves.  It's real.  She's real.  Conner's real.  And then pass this along.  Email it, Facebook it, talk about it...but reach out to another so the word will spread.

Because they need our help.  Sarah and her family need our support, our compassion, our prayers.  Now.

Whether it's 5, 10, or 50 bucks it would help immensely.  Please, please, whatever you can do, do. 

And then pray.  Again.

xo
k.

For Conner

Random Thought No.2

It's high time to get down and scrub the kitchen floor when not even Luna shows any interest whatsoever in the 5 second rule.

Prize Fight Loser

So you know, my birth certificate reads blond, of that I am certain because I looked just the other day while filing Henry's in the lockbox downstairs.  However, pregnancy has betrayed me and with each addition to our family my hair has grown darker and darker.  About six months ago, while still pregnant with Henry, I decided to bite the bullet and color my hair back to it's "natural" color...whatever that was to be.  In 36 years I've been every shade of blond: natural, dirty, ashy, platinum, highlighted, lowlighted, you name it.  It was high time for a change and with just enough pregnancy hormones to render me certifiable, I plopped down in my stylist's chair and dared, "Go ahead, surprise me.  Just don't make it blond."  A ballsy move considering I get my hair cut at the beauty school.  But I was resigned to make a change...a real statement.  That, and I was tired of whipping out the Benjamin's every three months just so I could keep living the lie.

Lucky for me, a week's worth of snickering was about all I had to endure from my family.  After the initial shock and awe wore off, they were quite supportive.  "Mama, I really like your clown hair," offered Charlie as we drove home from preschool one day. Nothing like a compliment from a four year old to keep things in perspective.  I was trying hard to like it too but let's face it, after a lifetime of eating steak, it's hard to make the switch to hamburger.  In that first month as a brunette, I jumped everytime I passed the mirror in the foyer thinking that there was an intruder in the house.  I just couldn't get used to myself as the sultry vixen, the Sophia Loren that I was trying so desperately to channel.

Fast forward to last week.  Spring was in the air and I was finally getting my groove back on.  I had determined that the New Me could actually pull off this look so long as I had not forgotten to put makeup on that day.  Normally, I'm not much of a primper but the change in hair color made me feel as though I owed at least half as much effort to the rest of me.  Never one to overdo it, I was content with some eyeshadow, mascara, and if really trying to sex it up, some bronzer.  And I looked good - not Alicia Keys sexy by any stretch - but good.  That is, until I decided to take it up a notch.

It had been a while since I had gotten my eyebrows waxed.  Actually, like a year had gone by.  With three kids all under the age of 5, eyebrows are not high up on my list of priorities in fact, it's a miracle that I'm even able to get a shower and clean change of clothes.  Brow waxes are few and far between these days, that's for sure.  So to save time and money, I decided to grab the bull by the horns and "do it myself" - a common theme in my life as of late.  

"You sure about this honey..." ventured my husband, "remember what happened last time?"

Rolling my eyeballs, I shot back a defensive, "Puh-LEEZE.  I've got it under control, relax!"  And as soon as the troops had settled in for the night, I whipped out my wax kit, reviewed my notes, and banned my husband from the kitchen.

Like the opening bell of a prize fight, the steady beep from the microwave anounced Round One.   I got up from my corner barstool and headed for my scalding brew.  The hot wax cooling, I studied it.  It seemed to seethe arrogance, daring me to dip a finger in it's caramel colored glaze that reeked of burnt skin.   A little foreshadowing on my part?  Perhaps.  Nonetheless, I was itching with anticipation.  In a matter of seconds I would rip years off of my age.  I'd go to school the next day looking at least ten - hell, maybe even 15 years younger!  That's the beauty of a good wax job - the little something that leaves people wondering just WHAT did she have done?  

Hot enough to do the job but cool enough to not send me to the ER with third degree burns, the wax was finally ready.  I stirred it one last time for good measure then lifted a quivering popcicle stick to my eyelid and dragged it slowly across, making sure to get every little hair that was in its path.  Next came the linen strip.  Cool and soft, I laid it atop the oozing wax.  I stroked it once.  Twice.  Three times.  Then a fourth.   In one clean motion, my thumb and index finger yanked in reverse.  RRRRRRRIIPP!

Not bad.  Not bad at all.

I examined the strip and smirked at the trail of eyebrow hairs stuck to the pad.  In one shot I had even managed to get the peach fuzz from the lid.  HA!  And you want me to pay 15 bucks for THAT?  I turned to the lighted mirror to admire my handiwork.

Fuck.  Me.

Staring back from the mirror was Vanilla Ice.  I had singlehandedly ripped off the better half of my own eyebrow.  I looked once.  Twice.  A third time.  Then a fourth.  Yep, it was gone alright.  Once a budding Sophia Loren, I had involuntarily put myself up for initiation into a gang.  But how could this have happened?  I had been so careful!  Had I furrowed my brow enough to cause my eyebrow to do a curtsie into the hot wax?  Had I pressed too hard on the cloth strip and oozed the wax up into uncharted territory?   

Not even a steady hand would disguise this disaster for work the next day.  As I stood before my first period class, ready to take attendance, a lone voice called out in broken English,  "Meees Teeshirt,  what you do your face?  It look deefrent."

I feigned ignorance.  "Different?  How do you mean, Nam?"

"I dunno. Someting deefrent."

I would hear that broken sentence from seven different language groups that day.  And fortunately for me, not a one would figure it out.  I like to think that it was my stellar lesson plan on the glorious future tense that had my students on the edge of their chairs but I know better.  So while I await regrowth of the eyebrow that once was, I say goodbye to Sophia and welcome with open arms, Ice.  Vanilla Ice, baby.

Word to your Mother.

Beauty and the Beast

Lola is by all counts, a Tomboy.  She'll take a dump truck over a tiara and happily sport a pair of Incredible Hulk underpants any day.  When we found out that we were having a girl I ran out and bought dozens of pretty pink dresses with matching tights and shoes.  And much to my dismay, they hang to this day, up in her bedroom closet like last week's special at the deli counter.  Untouched. 

But yesterday was different.  We had a turn.  A turn towards femininity as my diamond came out from the rough.  I pulled up in the driveway to a little girl clad in a matching pink short outfit and dripping with good taste.  As I cut the engine, I heard the hollow jingle jangle of 35 multicolored plastic bracelets slide down to her elbow when she threw up her arms to greet me.  A crooked bow pinned down a chunk of hair unwilling to be tamed and a gangle of baubles dribbled down her chest, each one tangled in the next.

My Tomboy now a Beauty.

Clinic, and by that I mean CF Clinic, was just two days away.  We had to race over to the doctor's office to get her chest xray and labs drawn so that they would be ready and waiting on Wednesday for the Good Doctor.  I let experience park the car in front of radiology and we practiced saying "Cheese" as we strolled through the parking lot - me with a purse full of medical orders and she with a purse full of Matchbox cars.  The lab would take the backseat.  I knew better this time.


Jingle, jangle
Jingle, jangle
Jingle, jangle


We made our way to the waiting room and sat alongside the grimmacing woman in the foot cast; Lola accessorizing her right, then her left, then her right arm again and again as the clock's giant red second hand swept around and around.  I worried that they wouldn't get a good, clear image of her lungs.  And that she'd be pissed about having to take off her "jewelry" for the shot.  Lucky for me, the technician was a mom too and knew just how to stroke Lola's budding fashionista ego.


"Love the snazzy jewelry you have there lil' lady," she cooed.  "Wanna make me look pretty too?"
Hook, line and sinker, Beauty took the bait.  We got the lateral then frontal images in one try.  Next stop:  THE LAB.


I dread going to this place, not because I fear needles but rather the people wielding them.  I rank phlebotomist right up there with "roadkill removal crew" and can't imagine doing that grind day in and day out.  Add to it the nightmare that is taking a small child into this place and you feel my pain.


"It'll be okay honey, they just need to get a little sample from you."  It didn't even sound reassuring as it fell out of my mouth.  I offered a lame, "Mama's gonna sit with you the whole time.  It'll be quick, I promise..." but by then I had lost her.  Beauty's eyes were now off of me and darting back and forth from the cheaply framed prints of deer poised at an unnaturally blue stream in some mystical looking forest to the red letters of the exit sign blaring ESCAPE HERE against the institutional beige walls of the waiting room.  One door in.  One door out.  She was trapped and she knew it.


Jingle jangle
Jingle jangle
Jingle jangle


A little hand, dusted with remnants of sidewalk chalk, reached up and grabbed mine.  I gave her one squeeze for confidence and another just because.  The woman who checked us in must have forgotten her teeth that day because she didn't smile once.  No "Hi!  How are you?" from her.  No siree, she was all business.


"Take a seat.  We'll call you when we're ready."


"Thank you very much," I replied.  As if that extra "very much" would buy my daughter a get out of jail free card for what was to come.

The tech approached as Lola's name was called.  It was like Vanna White stepping forward to turn a vowel.  She was a young one that tech - which I thought could play out one of two ways; maybe she would be one of those twentysomethings who are great with kids and win them over right away or...or...she would be the new hire who couldn't hit a vein on the first try to save her life.  Try as I may to be the optimist, I began to hedge my bet on the latter as opposed to the former.

Her loud snap of the rubber glove annoyed me.  So cliche, was that really necessary?  Beauty was now up in my lap and hoping climb into my shirt to hide.  "You're gonna hafta hold her arms and legs while I do this," were this gal's opening words of wisdom.  Yep, she was a new hire alright.  And obviously barren.  Was she crazy?  Had she gone out to her car and smoked a joint during her lunch break?  Did she really expect me restrain a bucking two year old AND keep the site steady for the draw?  Sure, I could pin a leg or two but there was no way I could keep her still enough to get the needle in and keep it in.

I sat there, with Beauty in my lap, contemplating how I was going to pull this off.  A black padded armrest saluted us at ninety degrees before it dropped like a guillotuine down in front of us.  We were locked in.  After that I heard nothing but screams pouring out of my daughter's mouth.  Her head thrashed wildly back and forth and too soon her legs fell into synch. Her frantic rhythm mimicked that of a caged wild animal desperately trying to free itself before the slaughter. 

Jingle jangle

Jingle jangle

Jingle jangle

The plastic bracelets bounced off of each other as she wriggled and fought me.  Such strength my little girl has, I thought.  I love that she has this energy inside of her but hate that it's a needle drawing it out.

"Hey, Brenda...I need a hand with this one."

Huh?  A what?  You're in the middle of the procedure.  You're asking for help now?  I looked down at Beauty's arm and saw the needle plunging in and out again and again hunting for that vein.   After about the fifth plunge, it swam to the right, then back to the left, then right again.  THE NEEDLE IS IN HER ARM YOU STUPID IDIOT, WHAT IS WRONG WITH YOU?!?!

Brenda arrived in time to get kicked in the hip.  At this point I was so upset with everything that I was secretly cheering for Lola to land as many blows as possible.

"It sounds bad but she's not in any pain.  She's just mad that we're holding her down."

My vision, blurred from my own tears, was lost but my voice was not.  Through gritted teeth I managed, "Yeah, right.  Draw the frickin' blood!"  Had her whopping two weeks on the job really desensitized her that quickly?  I briefly contemplated grabbing the needle and lunging at the beast, then stabbing her repeatedly in the eyeball.  "Oh, it's not painful.  You're just upset about not being able to see, right?" would be my condolence as she rolled around, curled up in a fetal position on the cold linoleum floor. 

When it was all said and done, the tech collected 3 vials of blood from my little girl.  End to end they would have stretched wrist to elbow up my arm; each one of them filled with the deep crimson specimen ordered by the Good Doctor.  The contents of these vials would be scrutinized later as we assessed functions of the tiny organs that lay tucked so neatly inside her little body.

The draw now complete, we left the office not hand in hand but head to shoulder.  I carried my Aching Beauty out through the lobby and into the parking lot with promises of a better day tomorrow. No one accompanied us out to the car that afternoon.  It was just Beauty and I walking away from the beast, her bracelets clumsily acknowledging our feat.

Jingle jangle

Jingle jangle

Jingle jangle

    

Dear Son,

I've dreamed many things for you; college, the first real job, moving out, marriage...so why did yesterday throw me for such a loop?   One minute you were cruising down the sidewalk at lightning speed on a borrowed Big Wheel and the next you were sailing by on a bike.


A bike without training wheels.


Um, excuse me but when did you learn to do this?  You did not ask for my permission to reach this milestone.  Weren't you supposed to fight gravity for a week or two?  Wasn't Papa supposed to be worn ragged as he followed you up and down the block, his hand glued to the back of the seat?  Where are your skinned knees?  Your bloody knuckles?  What's next?  Writing your name?  Reading a book?  Tying your shoe? How dare you grow up on me!


Time is passing too quickly.  I go to sleep on Monday and wake up to Friday. Spring turns to fall before I've had a chance to even smell the first perfect blooms from the flowering pear tree out back.  And you, you are growing up at rocket speed, racing away from me to do those Big Kid Things that are now just fond memories of my own youth.  I watch, no,  I study you.  Is it possible to trick a lingering moment and trap it into a memory? 
   

Every beetle is a gazelle in the eyes of its mother, so says the Arab proverb.  And you are no exception, my son.  No matter how far you ride away from me, you will always be to me my little boy...my Boy Wonder.