Sunday, April 6, 2014


As the dreary days of the worst winter in the last 50 years in Chicago drags on, I begin gearing up for some health maintenance.

Being the parent of two boys with Cystic Fibrosis, I tend to shove my health concerns under a dusty floor mat to worry about them another day.  Eh, I am generally healthy and try to eat well (on good days mostly organic and bad days a Chicago Portillo's Drive-thru for the kids, and let's be honest, I do more than sneak some fries).  I try to exercise (snort) and am sure to get my eight hours of sleep (well, at least I can in fact check the box on that one).

There are slight things that happen in your 30's.  You start to notice a waistline creep, or the ladies start sag, or in my case,  posture begins to slouch.  I am not worried, but take note of some things.  And yes, I will get to the gym with a personal trainer to work on that posture.  Some day.  Hopefully, some day soon.  Until then I have a good chiropractor.

Over the years, I developed vocal nodules.  They are considered a vocal injury and are from vocal, er, overuse.  There are cool people like Adele and Keith Urban who have had them because of their profession.  And not-so-cool people like stay-at-home moms (me) who have to say the same utterance like "get your coat and boots on" forty times or "You're going to be late for school!" usually escalating in volume.  Typically, the fortieth time is in a screaming or yelling sort of fashion.

The truth is I was diagnosed 11 years ago with them, and thought they had resolved at one point with treating my chronic acid reflux. (By some craziness, I was believe it or not stressed out before I had two busy boys with a chronic illness).  Life without them looking back seems pretty calm.

The nodules came back and I have been living with them for years.  Most recently, they had gotten pretty miserable.

While, on occasion, I sounded breathy and sultry, most of the time I sounded like an old lady with an severe smoking habit.  I would get winded just talking with a friend.  I was worse than raspy.  My voice would crack and crumble in a few minutes of talking.  It was actually HARD to talk and I was out of breath much of the time saying more than a few sentences.  I would also have "late onset" where I would start to say something but my words wouldn't come out on cue.  Weird, but true.  The only way I could describe it was simple that talking became effortful.

The consultation with the ENT who is highly specialized in vocal disorders was interesting...  The discussion went something like this.

Dr.:  I see here that you were in sales before you became a stay at home mother.

Me:  Yes.  I have two boys.

Dr.:  Ah, you talk a lot.  (smile)

Me:  Yes, they also have Cystic Fibrosis.  So they are on breathing treatments with machines a few times a day and often we end up yelling over the loud machines.  So that doesn't help.

Dr.:  Oh, wow.  You do talk a lot.

Me:  Yes, they also play sports and rough-house so I find that I have use my voice to get their attention.

Dr:  (Sigh a kind smile).

He becomes very politically correct when explaining the diagnosis and next steps...  " It's not that we think you should talk less..."  Translation:  You need to talk less and not yell.

Within two weeks I find myself sitting in a outpatient surgical center.  I am in a hideous hospital gown and refuse to put my hospital "cap" on my head to contain my long hair.  I have some pride here.  They forced me to wear goofy beige socks with skids on the bottom.  I will NOT put on the hospital "cap" until the last possible minute.

Hubs sits with me and we laugh all through the waiting...  We speak briefly with my vocal surgeon, who is kind and pleasant.  Given I am nervous and hate going under anesthesia for anything, I suppose it helps that he's not a whack-a-doodle.  He hurries off and we are left laughing again.  We are noticing the horrible, fading framed architectural print when the anesthesiologist arrives.  She is a funny, chatty lady who joins us briefly to talk through what's going to happen.  She starts by saying, "I hear that you have two kids with CF.  You speak and advocate on their behalf..."

How does she know all this?!

"You two are special people."  She smiles brightly.  She explains the procedure to me an my husband and explains that she will come get me in a few minutes and we'll head on back to surgery.  A few minutes later, she whisks me away to the surgical room.  As they prep me and I am laying down, the surgical assistants start doing their deal...  adjusting this, pulling that.  They do it so fast so you don't have time to BOLT out the doors.  I remember the surgeon coming in as they are all asking me questions about our boys and their Cystic Fibrosis.  They try to distract me and the last thing I recall as I drift off is the anesthesiologist saying, "You're so pretty.  You look younger than I would have thought, well, with all the stress I am sure you are under."

WHAAAAAAT?????...  Sleep takes over.

As I open my eyes, my throat is scorching.  I realize that I am crying.  I wave my hand and I hear them say, "Do you want to write something, hon?"  I weakly give a thumbs up.  They put a marker board on my chest and a dry erase marker in my hand.  The only thing I can think or get straight is right where I am always.

I scribble four words.  The only four words that I can put together in my fog.  But it is clearly everything to me.

"I love my boys."

They wheel me to recovery.  I hate this freaking sore throat, and it's unlike anything I have experienced before.  Screw those viral buggers when you get sick...  this is a painful, aching, throbbing sore throat where the back left side of my throat feels like someone put a gun to my throat and pulled the trigger.

NO TALKING.  Everyone reminds me.  NO TALKING.  No longer "hello" but "no talking" is the greeting the doctors, nurses, Hubs, and everyone says to me.  FOUR DAYS of not one single word.

Totally and utterly speechless.

It's like an awful psychological experiment.  Take a mom and shut her up for 4 straight days.  Then in an even crueler move, limited talking for the next 5 weeks.  Limited as in only a few words a day.  Talk about crazy.  I have been there.

The coming days and weeks are a blur of Charades.  I learn to clap a lot and the boys respond on cue "What MOOOM?!" or "Okay, Mom!  We hear you."  One of my best friends gives me a "No!" button to press at the boys when they misbehave or are particularly rowdy.  It's not only hilarious, but it helps so much!  It becomes a fixture in my kitchen, in easy reach to electronically shout "no!" umpteen different ways at the boys.

My husband and mother-in-law help in the immediate few days with the boys and pressing needs.  I find myself one day in Target trying to ask a Target associate a question using no words.  Try that one for fun.  Or don't.  I can tell you, it sucks.

There was another time when I was going through a fast food drive-thru to get a slushie (my post-op diet was all slushies).  I pass by the intercom and head straight to the window.  I hold up a Boogie Board (an LED writing tablet that the boys have to draw) that says, "I can't talk.  One medium cherry slushie, please."  She immediately starts signing to me.  I wave my hand and write "I don't sign".  She smiles and steps away to get my slushie.  I pay and as we exchange money, she says "May I offer that if you have a sore throat, why don't you go get some nice tea over at Starbucks" and points to the Starbucks across the parking lot.  What the hell??  Does she think I am full of crap or a crazy person or making this up?  I am not some attention-starved psycho...  I just had vocal surgery and just want a freaking SLUSHIE and I CAN'T TALK, lady!  I roll my eyes and pull away.

The next week, life begins to resume as I can utter a couple words softly at a time.  At school pick-up, Michael's teacher is one of the adults that chaperones kids safely to their cars.  She opens the door to let Michael up into the car and she says,, "Michael said you had vocal surgery?  Are you feeling okay?..."

I nod and smile.  She continues, "He said my mom had surgery because she screams at us."

Awesome, yep.  Mom of the Year.

Right here.


Finding my voice in the following weeks wouldn't be easy.  Not the metaphorical finding my voice, but literally making sounds.  I am nervous every utterance I say.  I am anxious about overdoing it or falling back into back patterns.  And without the proper rest, I could permanently wreck my voice.  Maybe being a mute for life wouldn't be so bad, would it?

We muddle our way through the next two weeks with a lot of hand gesturing, pointing, clapping, stomping and eye-rolling.

I am pretty sure though that my husband and the boys are loving the fact that I can't talk.  At least not full throttle for some time.

The most striking moment of my mute experience happens when I least expect it, a typical night in our house.

The regular CF grind puts Michael over the edge.  Dylan has done treatments before Michael and falls asleep early.  And in typical fashion, Hubs is working late.  I hook Michael up to his machines, the usual drill with a nebulizer mask and a vibrating vest to dislodge the mucus in his lungs.

As we being to "suit up", he begins crying.  Not sobbing or sad but tearfully, searingly angry.

"I hate CF!  I hate it.  I hate vest and mask.  I want to be like you and Daddy.  I don't want to do this anymore.  I just hate CF."

Much of my time recovering has meant that I think through what I say before I say it, to make the most vocally with the words that I choose.  In this moment, I stay silent for what feels like forever trying to find the right words.  The time and space of my silence echos for quite some time.  These are the moments you are never quite prepared for as a parent.

I am, however, grateful that his breaking point wasn't two weeks ago when I was rendered completely speechless.  At least, here now, in this moment, I can directly respond to this smart, broken little boy.

He is destroyed.  His steely blue eyes pierce through his bloodshot tears.

"Mike, you can't let CF get the best of you.  It's hard.  It's a lot.  It's exhausting.  But we work hard to make sure you get everything in every day..."  I pause to slow my cadence down.

"You go to school with your friends.  You play soccer with your team.  You get your homework done.  You have playdates.  You do fun things..."  Pause again.

"If you don't do your CF treatments, you won't get to do all these things...  You can be angry.  It's okay to be angry.  It's okay to be tired.  But don't let CF be everything, because it is NOT everything."  I smile brightly at him and pull into my arms.  I feel his body crumble and then slouch.  I can tell he has been holding this in for a long time.  This kid is wise beyond his years and strong as they come.

I sense that he is satisfied.  He just wanted to tell his story.  He wanted to let it all out.  He wanted someone to acknowledge that the CF grind just isn't easy.

I lay with him in bed while his vest vibrates and the medicine steams.  His small hand tucked in mine.  We are quiet for the whole time because I can't yell over the machines.  Our time together profoundly doesn't need words.  I understand more of his journey than ever before.  And I think he understands my perspective.

Don't let it be everything.

When the treatments finish, he brushes his teeth and I lay with him as I watch him drift off to sleep.  His eyelashes delicate and still.

Maybe it's not how many words, the quality of words, or the volume.  No, it's not the words.

It's those few times when words are meaningless and unnecessary.  It's when silence speaks the loudest.  Strangely, it's those times that can mean the most.