Tuesday, February 22, 2011


Just your typical Monday morning around here.  Dylan is toddling around with toys and Michael just finishes a late morning airway clearance treatment.  I decide to start to make an early lunch for the boys...  quite a simple task since I have done it a thousand times before.  It's the not the lunch I would soon become concerned with as the minutes pass.

Two pieces of whole wheat bread.  Not processed on equipment or in a facility with peanuts or treenuts.  I grab the tub of olive oil butter and slather an obscene amount on one side of each of the bread.  Grilled cheese is on the menu.  A couple slices of Kraft singles and extra butter, chips and a big bowl of french onion dip for each kid.  The hiss of the buttered bread hitting the pan is reassuring.

Michael calls for me to help in the potty.  I help get cleaned up and we discuss what I am making him for lunch.  Next, we wash our hands, exit the powder room and head up the stairs so he can get dressed and ditch his pull-up for more comfy cotton underwear.  He has been psyched for the past week because he is wearing "boker bweefs".  Translation, boxer briefs.

Michael demands that I layout all 4 of his clean boxer brief underwear so he can decide.  He abruptly shoves two pair at me that he has eliminated as options (as they are not the new dinosaur ones he just picked out this weekend).  "Hmm, mommy, which one you like?  The blue and yellow or the other pair?"  I try to indulge him but I am hurrying to simply get some drawers on this kid.  Finally, he makes a decision and I quickly yank a pair of Adidas warm up pants out of his closet and help him get them on.

As I walk out of Michael's room, I smell something burning.  THE GRILLED CHEESE SANDWICH!  I head down the foyer stairs in an all out sprint.  I arrive at the stove top to see the sandwich smoking.  I flip once to see if the damage is irreparable.  I have done wonders with a little char on a grilled cheese sandwich.  I immediately shift to Grilled Cheese ER doctor mode.  I flip the burner off and peel back the charred piece of bread.  Assessing the situation, I pull the entire burnt slice of bread off.  I quickly throw another cheese slice on and add a freshly buttered piece of wheat bread where the missing half had been.  Then, click click click, poof, I turn the burner back on.  Good as new.  Sigh.  I flip the fresh piece of bread to toast on the bottom of the pan, and see the other side is golden brown.  Perfect.

I tell Michael to go get his brother for lunch.  As I am readying their plates, I hear Michael as he approaches the top of the basement stairs, "Mommy, Dy dy not downstairs.  The wights are all off."

What?  The lights are all off?  That's weird, he was just playing in the family room and I was certain that he headed down to the basement.  Although, it is awfully quiet.  And it's never good when it's too quiet, especially with Dylan.  I turn the burner off on the stove top, not willing to risk another destroyed sandwich.  Then, I swiftly retrace down the stairs where Michael had just been.  He's right.  All the lights are in fact turned off.  No signs of caveman Dylan.  No pillows from the couches on the floor.  No sports equipment strewn all over.  There aren't even any toys out.  Nothing.  No sounds.  Nada.

Humph.  I hurry upstairs since I don't want their food to get cold.  So strange, I think.  I start calling for Dylan.  There are no reciprocal giggles or noises anywhere in the house.  I walk every room of the first floor.  He is not anywhere to be found.

I run upstairs and hurriedly glance in each room.  This is just not possible.  How does a mother lose her kid inside their home?!  I head back to the first floor and do a look around the door locks and it appears that all are still deadbolted.  I realize that with Dylan this doesn't mean too much considering at 13 months he had pulled a laundry basket over to a door, flipped it over, climbed up onto it and unlocked a door. 

There was also the time he walked out the door and I found him 3 houses down the street when he was 18 months old.  I have also had to rescue him from under our SUV (it was not running, I'll have you know that I am not that terrible of a mother), inside the kids' art easel, and inside a compartment of the refrigerator.  You think I am joking.  I am not.

He is a monkey who gets into everything and an adventurous little explorer.  This time feels terrifying and different.

My heart races.  Panic creeps in.  Dylan is gone.  GONE.  GONE.  GONE.

I really start to lose it.  I dash from each room to the next, top of our house to the bottom, yelling for Dylan.  I check each closet and every hiding place that he has.  I pull back every curtain and look under every bed.   Michael is chasing behind me and wailing with concern.  He loudly repeats every single word out of my my mouth, right along with me.  To say he was my shadow at that moment is a complete understatement.  As if that isn't bad enough, the dog is running around barking her head off like she is some sort of in-house amber alert.  To assess the situation, I don't need a mirror.  I am staring at a kid version and a canine version of my panic.

I finally melt down as I head back into the basement.  I flip on every light and scream at the top of my lungs for Dylan to respond to me with hysteria taking over.  I open our storage rooms and look around.  I cannot contain my nervousness.  He is not anywhere I can see.  My stomach drops.

I switch on every light in the basement and head to the basement bathroom.  As I flip on the light in the bathroom, there is a mild commotion behind me.  I see Dylan pop up from a comfortable spot on the sofa.  His hair is messy and matted and his cheeks are rosy.  He is completely disheveled.  His eyes are dark and groggy.  I make my way over to him and walk around the couch, hysterically crying and laughing at the same time.

Michael says, "Oh, Dy dy you 'cared us.  You weally 'cared us."  Tears are flowing down Michael's cheeks and his red eyes are pools of tears.  He is trying to catch his breath he is sobbing so hard, that his baby brother was missing.  Well, at least for 7 minutes.

I look at Dylan's position and realize that he had taken a throw from the sofas upstairs and brought it downstairs probably to play.  I am guessing that when he arrived in a dark basement, he made himself cozy in a nook of the couch.  He has been hidden by the blanket and two throw pillows.  He was just taking a snooze.

We all hug firmly as the dog rubs her face on our torsos.  We are all safe.  Our worst fears that Dylan had wandered off out of the house or that something menacing had happened to him are eased.

Dylan, clearly not understanding what had just transpired, laughs brightly and yells "Wipe out!" and throws himself onto the neighboring massive armchair.  Michael and I sit holding each other crying and letting our racing hearts slow together.

All through out lunch, Michael lectures me on the importance of not going with strangers.  He wags his finger with an air of seriousness as he tells me his advice.  It is obvious he is shaken up from the ordeal.  Dylan just eats as if it is just a typical Monday lunch.

I often wish for peace.  Or silence.  Maybe a break from the storms of insanity that pass through my days.  But I definitely peered into a small window of the unknown and heartache today.  I felt a moment of every parent's worst nightmare of missing their child even if only for a few minutes.  In a mall.  In a restaurant.  In a parking lot.  Or as ridiculous as it sounds...  in your own home.

Today, I realized that I'll take my active little Dylan yelling and vocalizing his two-year-old emotions any time over his silence.

Thursday, February 17, 2011

Who's got your back?

My recent months have been a rollercoaster of emotion.  No stability and certainly no consistency except one thing - support.

Because of our quarantine in recent weeks, since Michael's doctor suggested avoiding large group settings (most places in the world) and highly trafficked places (and all other possible places in the world) we have no choice but to stay in lock down at the house.  While this sounds extreme, it isn't.  In our minds, it's simply smart decision making right now.  And we are adhering to the doctor's advice...  if it's not necessary, we just don't go out.  And while obviously we are not ones to lick the handle of a shopping cart or rub our eyes after getting of the Metra commuter train, there are germs everywhere even with best practices like hand sanitizer or good handwashing.

I know some unknowing parents look at us like we are crazy when we Clorox wipe restaurant tables regularly without the kids being visibly sick.  Or when I have a hand sanitzer bottle in every purse, diaper bag and a pump container of it my car.  I am not just a crazy mother, people.  I need to be crazy.  It's necessity.  So, keep staring and keep rolling your eyes at me in those stores and restaurants.  I am the better person, because, I know better.

Moral of the germ story is that we are just hanging at home until Michael gets over the hump of this most recent sickness.

I won't lie that it has been insane and overwhelming being at home with the boys nonstop.  They are stir-crazy as am I.  But these little guys get through the cabin fever with each other's help.  "C'mon Dy Dy," Michael prompts and grabs Dylan's hand as they run off to the basement to play.  Dylan turns around and fiercely looks at me.  As he is running off with his big brother, he shouts around his obstructive pacifier in his mouth at me.  I can easily translate his fervent demand to play Wii boxing in his mini dictator tone.

Dylan is dressed in a white t-shirt, a diaper, and a royal blue pacifier in his mouth.  He gathers himself for the big fight.  Michael's cheers his brother on in the boxing ring, "Punch him, Dy.  Punch him right in the face!"  And Dylan, clutching the white plastic Wii remote in his little tot hands and sucking firmly on his pacie, rapidly flutters his arms up and down back and forth.  He growls at the large screen TV, "GET.  GET.  GET."  Then he dramatically collapses onto the floor for effect.  Michael hurriedly shouts for him to get back up since the match isn't over.  Michael won't let his brother down that way.  He will cheer him to get up until the very end.  Very moving.

Ahh, my boys help each other out.  I see it in all ways, not just the rough and tough stuff either.

It's also in the sweet unassuming moments like when Michael excitedly puts in Dylan's favorite movie, Baby Einstein Shapes, for his breathing treatments.  Michael shuffles around our bazillion DVD's, locates the correct one and delicately pops the DVD out of the cover.  He loads the disc and waits anxiously to hit the play button and cue up the movie for his baby brother.  There are also the times when an airway clearance session has finished on the respiratory vest, Michael gently unhooks the tubes and unsnaps the buckles.  "All done?  Dy, you all done?", he prompts his baby brother.  Or even when Michael "helps" Dylan out by doing his chest therapies (this one we'll say is a little more pretending and acting out than actually doing).

But all of these are amazing illustrations of how these two little ones are bonded, deeply and inexplicably.  They are brothers and they are each other's pillars.

It has been lonely and surprisingly quiet for me at times during our lock-down.  Many friends and family have reached out to see how we are all doing or to lend help.  One of my best friends brings a warm dinner and we dish about more than food.  We catch up about all things life.  We do the math and realize that it has, shockingly, been months since we have seen each other.  She and I have a remarkable connection that I plan to memorialize in a book some day.

We met on a CTA bus eleven years ago commuting along the same train line from the suburbs into the city of Chicago.  We delivered babies on the same day with the same doctor (yes, keep scratching your head).  We left work in demanding sales careers at the same time.  We both have roots in West Virginia.  We both know what it's like to lose a parent at a young age.  We have both married our high school sweethearts, who are by the way both the middle sons of three boys.  We both planned our high school reunions.  We were in some bizarre way, lost souls that were looking for each other's completion.

We even sat licking our baby boys together weeks after they were born to see if they tasted salty.  Turns out that mine were salty.  Hers were not.  CF has had an all too real presence in her husband's family.  She is a wonderful friend who I admire greatly.  She has her own hands full with 3 little boys and a fourth baby on the way.  I am lucky to have her.  Our catch-up session over Mexican food at my kitchen table leaves me feeling normal.  Always like old times.  And in some weird way, things are as they have always been.  Because she's got my back.

Another one of my best friends, my college roommate and Dylan's Godmother, brings me dinner and puts in my freezer and tells me that she is coming to help me this week.  She knows that I am overwhelmed and knows that I don't even have a good minute to run to the grocery store or consider doing something like (sigh) a manicure these days.  She gives up a day of her freedom from her own kids to relieve me for an hour or two to get out and run much-needed errands.  I am continually humbled by her selflessness over the years.  We joke that our friendship was sealed the first week of classes at Indiana University. We met in an advanced Spanish class and strangely a few days later, 150 miles away in a different Big Ten city, I spot her standing on a street corner as I drive past.  We lock eyes stunned, me in the passenger seat of the car in disbelief pointing at her and she on the street corner her mouth agape pointing at the slow moving car I am in.  From that moment on, we are friends.

I clearly remember losing my voice on spring break in Cancun and she was my voice.  I cannot forget her considerate offers to watch Michael so I could go to my maternity appointments when I was pregnant with Dylan.  And I have vivid memories of our late night talks in our college apartments while slamming a Pizza Express pizza and bread sticks.  She has been there for me over the years.  I am so grateful to have her friendship and unwavering support.

I have received calls from my lifelong best friend a few times checking in.  I suspect she wants to hear my voice and I know that I too need to hear hers.  And my cell phone voicemail comes alive with my girls, my mother, and my mother-in-law.  All who have a sixth sense that life is beating me down.  Even my former high school friends who so thoughtfully send me a kind note and a Starbucks gift card, because they just know that I can use a pick-me-up.  Should I feel so loved and supported.  These are my women.  There are many days that I wonder why everyone is doing that for me.

* * *

It is a casual gathering in a room somewhere in middle of Chicago suburbia.  A private room at the top of the dramatic, winding staircase and to the right.  Images of the black and white checkered floor and bustling tables drift by as I near the room framed with massive velvet drapery.  We are not spies or some secret sisterhood.

Two of my friends and I duck around the velvet and enter the room with a volume ceiling and art deco touches.  We see our friend who planned this lovely evening.  As we hug and greet each other, more women fill the space with laughter and light.

The mood is comfortable and easy.  We settle in as though we have known each for many years.  A halo of indescribable warmth radiates around each of us.  The tables with classic white restaurant linens are dotted with miniature bud vases with single red roses.  A single word defines each vase stands on its own, but it's the trio that carries the weight of the meaning.

Couldn't have said it better for dinner with these women.

Different ages.
Different backgrounds.
Different appearances.
Same cause.

We fight the same fight in our homes.  We know the struggles each other face every morning we wake up.  We share the same hope every night we go to sleep.  We come together to share our grief and healing.  "So, when was he diagnosed?"  We trade our common challenges and disruptions.  "How did you get her to stop throwing up at night?  What did you change?"  We compare our surprise that even those close our community often don't even 'get it'.   "And could you believe the nerve of that social worker saying that?!"

Time fades away as we gab through our stories.  As we look at our watches, we realize another evening together has passed.  Slowly, we trickle out of the private room in the restaurant where the heavy velvet drape has kept us in a safe cocoon for hours.

These special dinners grace our calendars only a few times a year.  They are therapeutic and remind us that we are never alone on this journey.  I recall at one of these dinners a server once asked us, "So, how do you know each other?"  And we all looked around the tables, and with a collective smirk said, "I guess we are kind of a support group."

GASP!  Dare we call ourselves a support group.  That is stuffy and cliche.  And that's just not us.

We are detectives, project managers, problem solvers, lay physicians, referees, negotiators, culinary experts, germ specialists, and respiratory therapists.  Many of us are also mothers.  But the best title we can claim around these tables are 'friends'.  With no other way to explain how this ensemble of amazing women would have otherwise come together, it's the only easy way to share our deeply profound connection of fighting this terrible disease.

We can't always predict what life has in store for each us.  I would not have any of these strong and beautiful women in my life if not for chance.  Chance to meet that girl on the bus, or chance that I passed that classmate on a street in another city, or chance that my beautiful boys have CF.

I see it with my boys and how they lift each other up every day.  Every pill.  Every treatment.  Every time they play together.  They living together, laughing constantly and loving always.  They hold hands when they run off to find an adventure and they hug before bedtime every night.  One of my favorite pictures of all time was when I looked down at the boys in the stroller while walking through a shopping center and saw Michael clutching sweet baby Dylan's hand who was no more than five months old.

It's the moments when Michael gently kisses Dylan's forehead goodnight and they use their little hands to sign "I love you".  These little guys support each other in every way.

To truly live, to hysterically laugh and to deeply love is most rewarding when you are supported along the way.  And to those that support me, every day, I tip my hat.  Because, sisters, I got your backs.

Thursday, February 10, 2011

Shooting Star.

Super Bowl Sunday is usually a casual get together in our house typically spent celebrating my wonderful husband's birthday while enjoying the game.  Chicago Italian Beef Sandwiches, some chips and dip and a cake.  Casual and chill.

In recent days, Michael has had a touch of a cough that has quickly escalated into the worst cough we have ever heard out of him.  Junky.  Deep.  Painful.  This cough has evil lurking inside of it.  It isn't the cough that is so menacing, but the struggle to recover from the coughing that is so alarming.

While everyone is with friends and family enjoying the Super Bowl, we too are with family doing the same.  However, for my sweet little boy, Super "Bowl" had a whole different meaning.  Michael has had no appetite lately.  I am freaking out with every bite or lack thereof at a meal and knowing that there is a bigger picture of his health going on.  I fear that his lungs are getting crudded up.

The ray of sunshine is that his throat culture from the last clinic visit showed 'normal' respiratory flora, in other words "nothing".  For those not in on the CF lingo, a 'culture' is usually a swab at the back of the throat.  Think of when you were a kid and had to go to the doctor for a strep test.  Basically, the thinking is that if the throat is showing a dangerous bacteria where someone is exhaling and expelling the germ through the throat, then clearly it is hanging out in the lungs.  It is certainly not fool proof.  There are the hits and the misses where something is brewing in the lung.  With the misses the little evil germ may be deep in the lower recesses of the lungs, and it's just not detected in the throat.

Cultures are a great way to take, almost preventative action against worrisome germs.  While not truly preventative in the sense of the word, it is a way to aggressively keep up on top of what is going on in the body without invasive testing.  When Michael was 2 years old, he asymptotically and incidentally cultured a nasty bug called Pseudomonas Aeruginosa (PA).  PA is a lung destroyer.  It is one of the culprits of considerable lung decline in CF patients.  And babies and tots today are treated aggressively if PA is detected.  PA's favorite home is a warm, dark, moist place where there is a break or vulnerability with a host.  Basically, a CF lung is an ideal place for PA to grow.  It is not the worst of germs, but it is certainly feared.

I once recall a social worker sharing with me that there are five grieving moments in a CF family's life.

Diagnosis of CF.
First hospitalization.
First diagnosis of PA.
Lung Transplant.

PA has that much impact on a CF family.  Often the first hospitalization and the first diagnosis of PA are the same, since an individual might obviously be hospitalized because of a PA infection.

There are other germs that do dirty work.  When Michael was hospitalized in November, it thankfully was not PA.  But it was Staph.  How crazy that I was thrilled that he ONLY HAD A STAPH INFECTION IN HIS LUNGS.  It is shocking to other people that I am so casual and so nonchalant about a serious pulmonary infection.  I am usually sad and struggling for grace in those moments.  But truly I keep it together because I know there are considerably worse news that could come with a lung infection...  So, I'll take Staph any day.

I ramble on about these germies because a culture can mean so much.  Families wait for the culture news.  They cringe when the phone rings three days after a clinic visit fearing word about a germ that has settled in.  Cultures can give a good indication of what's in the CF lung.  But all the while, they can be very deceiving since they are not all-telling.  It's the easiest indicator of what is lurking in a CF lung, but it is certainly not the best one.

And strangely enough, families also almost wish for a positive culture when the little ones just don't seem to be feeling 100%.  At least with a positive culture then they know what they need to treat.  CF can be such a complex and confusing disease.  Right when you have the answers or things are going well, you are slapped in the face by a million more questions.

Just three days ago I was telling a CF clinician that Michael's cough was improving.  And we rested our heads that night knowing that his culture came back with "normal respiratory flora".  Phew.


And tonight, during Super Bowl XLV, Michael is hanging out on the couch when he begins coughing so hard he starts gagging.  I see the fear flash in his eyes.  I ask him frantically, "Mike, Mike, do you need to go to the bathroom?"  He nods during his torture-some coughing fit, the skin around his eyes red.  His eyes are strikingly blue against his bright, rosy pink cheeks.

I swoop him into my arms and rushed him into the bathroom.  A few hard coughs and he throws up.  I rub his back in circles, thinking "some Super Bowl".  Poor Mike is bracing himself on the "toilet bowl" as he throws up and continues coughing.  I keep rubbing his back.

His sweet, sad eyes look at me water welling in them.  One tiny tear breaks on his left eye and travels half way down his cheek.

One lonely tear.

He looks down at the toilet waiting for more waves of sickness to come.  The tear signifies his confusion at it all.  This sweet tiny tear falls, nearly suspended in the air for a moment as I watch it, into the toilet.  My heart falls with it.  Right into the toilet.

The coughing worsens through his last CF treatments of the day and it is clear that we will need to call the doctors first thing in the morning.  Dread rolls in.  Fear and frustration what is coming on the horizon.  There is something behind this intense, painful cough.  And now we might need to go deeper with our questions and with our tests.  I am hoping that the culture is right and this time did not miss something.  But my instincts are telling me something altogether different.

We need a cure for these kids.  And we need it fast.

Two days later we head to the doctor with Michael.  We opt to leave monkey Dylan with family and trek to the hospital.  "Pack a bag" our team suggested.  Translation...  Michael could very well be admitted for another hospital stay.

We do the standard round of tests upon arriving.  Michael plays pleasantly on the high exam room table with the crackling, medical paper with every shift of his weight he makes.  He pushes his Matchbox cars around and plays with his Transformers.  My husband and I sit side by side on our smart phones, frankly both too nervous to exchange dialog.

When the doctor walks in, we share his latest troubles.  He's not eating.  He's flushed.  He complains about joint pain.  His shoulder.  His elbow.  His hip.  His knee.  He is coughing.  Deep.  Rocky.  Painful and chesty.  We answer all the questions and the next course of action is changing the breathing treatments and adding more medications.  And we take another culture hoping that in the coming days we will have more direction on how to best treat Michael.  I take a deep, controlled exhale.  The ugly, bland hospital tile glares back at me angrily.

The doctor strategically helps me see the easiest way of administering the new medications without really adding too much on our plate.  We talk about the overwhelming routine for both boys.  She recognizes the stress on our family.  The weight on my shoulders is apparent.  And then she hits me with it...

No school for Michael.  No parties, no restaurants, no grocery stores, no unnecessary trips out.  No big group gatherings.  We need to try to keep him virus free for a while.  She is hoping that this can help him to recover.  Instead of Mikey continuing to get knocked down while he is trying to get back up.

No school?  How unfair!  I feel like the four-year-old.  While Michael would handle the news far better at a later time, I, on the other hand, am not handling this well at all.  My reaction then earns me the pep talk.  But that is the simple way of putting it.  Our doctor, whom we trust completely, delivers her honest observations that I need some help.  No, not the "coo-coo looney" trip or "get this girl a drink" type help.  But regular help a few days a week.

She recognizes that we have all hands on deck with family and friends.  Everyone is more than generous pitching in to help us get to a doctor's appointment or a much needed date night.  We have been greatly blessed with a support system of love, scrappiness and help.  A "make it work" crew.  But what she is talking about is to have some regularity and routine.

We leave the hospital thankful to be going home.  But are struck with the reality of our 'run and gun' days as my husband leaves the hospital heading for Midway Airport to leave for a business trip.  I pack Michael into the car and head off to pick up Dylan.

No school for Michael is a bummer.  I talk to the director of his preschool and we orchestrate a plan so he can still "exchange" Valentine's with his friends.  Also, I share my thoughts on trying to 'replicate' the activities they are doing in school so he can experience similar things from home.  I will make things as normal for my kids as possible.  I want to fill the holes that this stupid disease creates in Michael and Dylan's lives.

I decide that it would be idyllic to give away heart shaped recycled crayons for Michael's Valentine's exchange for his classmates.  Basically, you know all the broken bits of crayons that you end up trashing over time?  Well, we melt them down into new crayons.  And believe me, we have PLENTY of those broken crayons from Dylan's favorite past time of throwing crayons on the floor.  All day long.  I haven't quite understood what game he is playing, but he really likes dropping crayons on our hard tile floor.  Not a good fate for a trusty standard crayon, but great for recycling crayons.  We have done it before and it's pretty cool.  However, things were just off this time.  Michael and I spend time organizing the crayon bits into the different hearts to make spectacular color combinations.  He is stoked for this project.


I put the silicone bake ware in the oven WITHOUT A TRADITIONAL BAKING SHEET UNDERNEATH.  As I go to remove the floppy red silicone filled with hot wax, I juggle to keep the hot molten liquid from dripping or sloshing out.  Even better yet, I have two awkward potholders that I am trying to manage.  I brilliantly decide to try to slip a baking sheet under the stupid, unstable silicone.  As I do, the crayon wax pours out toward me on the baking sheet.  It wouldn't have been so bad, except that I freak out and then all the wax starts to pour into the floor of my oven.  Romantic violet.  Rustic terracotta. Bold magenta. All swirl together taunting me.

Then, the gray smoke starts.  A steady stream of smoke starts to pour out of my oven.  There is gray smoke everywhere

Crap.  Crap.  Crap!  CRAP!

I yell at Michael to get out of the kitchen and to get Dylan out too.  I send them to Michael's room (in hindsight I should have sent them to the basement, HELLO!, smoke rises) and tell them to close the door.  I start running around the house freaking out, and thankfully not swearing, while I frantically open windows.  Again, this would be a fine idea except it's NEGATIVE 15 DEGREES out.  I have no choice.  I open 7 windows downstairs and 2 windows upstairs and have all fans going.

I am surprised when I run upstairs to find both kids up in Michael's room.  Michael had been an amazing little kid towing his brother swiftly upstairs to his room and closing the door.  In this moment I know, he is a survivor.  He listens very well and he has instincts.  Michael knew I was frantic but focused and dead serious when I told him to get his brother and him out of the kitchen.  Completely amazing four-year-old.  I head back down to continue the clean up.  I continue wiping the smoking liquid wax out of my oven, totally baffled on what the ultimate clean up job is going to require.

When the plume of smoke has passed and the emotional flurry is over, I look around and see an indescribable haze throughout my house.  Oh, I am totally going to win "Mom of the Year" award for this one.  Show of hands.  Who wants to nominate me?

Minutes later the rooms have cleared and the stale air is replaced by sweeter, cool air.  Mmmm fresh air.  We are able to close the windows and relax a bit.  Michael is vigilant in his quest for safety and doesn't want to leave his room.  I explain my concerns about the smoke sticking to the "glue in his lungs", but that the smoke is gone and he is safe.  He later recounts the whole explanation back to me later before bed.

It is way past both kiddos' bed time, but Michael still has treatments left to do.  As I grab his nebulizer parts and mask, I realize that these were not inside their protective container.  Even though I had spent all the time earlier today sterilizing them, they were not covered during the crayon fiasco and were exposed to the smoke.  Well, I can't really do Mikey's treatments so I run him on a vest for his airway clearance and figure we will get back on track tomorrow.  I tiredly start rewashing the nebs, which I had done only hours previously, and a pot of boiling water.  No rest for the weary.

As I am washing the tiny plastic pieces that I have so many times before, the dog stares her pathetic eyes at me.  She grumbles. She stammers backward as if scolding me.  The whirr of Michael's vest and the insane volume of the Transformers show in the other room drone out most noise, but I can still feel the dog's eyes burning through me.  My chapped hands sting under the scalding hot water as I wash the medical equipment.  I finish up the washing only to hook up the dog's leash and take her outside to do her business.

As I am standing in the frigid night, I look up to stretch my neck and for some visual relief.  I love looking up at stars on cold winter nights.  Then, I see it.  I see the most perfect, unmistakable streak of light in the black sky.  It's nearly above me as I stare up at the heavens.  It travels from my left and runs to my right, but not until it makes a slight wave up, then slightly down.  The magical omen disappears.  It is so fast.  I can't even explain how quick it crosses my cornea.  But it is undeniably there.

I make my wish.  And it's not for a clean oven.  And it's not for some amazing gadget so the dog can let herself out.  It's not even for a glimmer of sanity.  It's for my two little troopers who have more bravery and resilience than anyone else I know.  I open the door and feel the warm air hit me.  My muscles relax.  The whirr continues from Michael's vest.

Now, how the hell am I going to clean that oven?!

Sunday, February 6, 2011

Houdini and Oz

Houdini was a magician.  An escapologist.  A stunt performer.  An aviator.  A near contortionist.  An illusionist.  He was someone who very deliberately would hide in the shadows and darkness to bring forth an impossible stunt.

Ironically, Houdini was also a skeptic.  He sought to expose those who were frauds and those who preyed upon people's hopes and wishes with loved ones believed to be in the spiritual world.  And with this, Houdini brought many things to light.

In so many ways, my boys are little Houdinis.

I wake up and dart out of bed, scrambling to actually squeeze in a hot shower before the day gets going.  It's been a storm of a week, last night being the first in days we are able to sleep at home with a working furnace.  And now the very first morning waking in our own beds we are having to run out the door to deal with the stresses of CF clinic.

I pack a bag with some snacks and load the kids in their car seats still in their pajamas and head out the door.  Sun pouring into the windshield I route my best course against miserable Chicagoland traffic and so that I can stop for a reliable, hot cup of coffee and a take-out breakfast for the kids to eat during the lengthy clinic.

When we arrive, it is a full-waiting area at the CF clinic.  This is highly unusual as the staff is extraordinarily diligent about getting CF kids ushered into their rooms quickly.  This is because individuals with CF can host dangerous germs and in theory pass on those germs to others who are vulnerable (like fellow CFers).  I am struggling to juggle everything like the bags, the breakfast, and my two little brutes.  I don't want them running around the other kids in the waiting room, some of whom have paper masks covering their noses and mouths, some without.  As I contemplate how I am going to grab the two paper masks to put on Michael and Dylan, I see our nurse.  And SIGH OF RELIEF.  She escorts us back to our exam room.  My husband's brother, "Uncle T", is stopping in this clinic to help give me a hand.  Let's be honest, this is not a one-person job.

After wrapping up the paperwork with the front office staff, we get the boys settled with their food.  A bagel slathered in stawberry cream cheese, donut holes, a breakfast sandwich oozing with cheese and salty ham all for the boys and a coffee for me.  Cream only.

The battle begins earlier than normal at this clinic visit.  The first few minutes are always spent getting the boys' vital signs...  height...  weight...  pulse ox (oxygen levels in the blood)...  temperature...  blood pressure.  Normally a breeze.  But not today.  Michael and Dylan are having no part of this visit.  Everything is a test in patience with them.  Dylan is bull-headedly focused on eating and Michael is determined to argue his way out of everything we ask.  My own blood pressure is rising.  Maybe they need to hook one of those machines up and check me.

Only after a "Child Life" Associate comes with toys and bubbles to visit our room, does the mood change a bit.  I toss the strewn pieces of donut holes left behind and the remaining crumbs of Dylan's sandwich in the garbage.  I look down and see Michael's bagel with one petite bite taken out.  His breakfast is virtually untouched.

Our favorite nurse breezes in and busts out laughing.  She always knows that our family brings a lot of, er, energy to our visits.  All the staff can usually do with us is throw their hands up and, well, laugh.  I share with her how the heat has been out at home, how we've been staying with family, and how it's been a 'run-and-gun' life in recent weeks.  Then we start discussing the boys' health.  "Let's start with Michael since we are already chatting about him..."

I begin to explain that he has had more severe belly aches in recent weeks and some troubling potty issues.  "Yeah, we'll talk about that," she says casually.  "Michael has lost weight."  She coolly focuses on the computer as she makes the statement.  I know she is doing her best not to set off my insane mom alarm.

I am stunned.  I have taken a slug to my stomach and the room closes in around me.

The commotion around me fades.  So does the chatter and the boys' hysterics about bubbles.
I can no longer hear the muffled voices in the hallway.

The world stops.  And for once in my life, I am speechless.


No, no, no.
Not my boys.
Not possible.

I don't know if you realize, they are different.  THEY ARE DIFFERENT.  These two little boys are different.  We're the exception.  They are different!  These boys defy the odds.  I want to scream.

We are the weird CF family to the rest of the world.  And we are the weird family within the CF world because our kids don't have problems with weight.  They are different in every way.  These boys defy the odds.  Don't you know?  Not possible.

They.  Just.  Don't.  LOSE.  Weight.

I shift uncomfortably where I am sitting and take a long, almost painful swig of my coffee.  I let my inner hysteria happen.  But I work to stay composed on the outside.  I straighten my posture tensing all my muscles awaiting the impact of the coming conversation.

"He grew over an inch and lost over a pound," she explains.  I do the math in my head.  His weight went from an astounding 87% BMI last time to 42% BMI today.  It's been only two months since our last visit.  We discuss how something is up with Michael and we dissect what is going on.  We cover all aspects of his medications, his belly, and his cough.  When I wrap up with her, she gives me a look of warmth.  She knows I am freaking out.  It will be okay, she tells me with no spoken words.  All in one look.

I spend some time next with the Nutritionist.  She explains how incredibly important the growth in his height is.  It is really GOOD that he is growing taller.  We begin to address Michael's chronic stomach aches along with the weight loss.  It becomes all too real.  His belly aches were a bigtime symptom that his meds were off and they will be adjusting the enzyme pills he takes every time he eats.  On all accounts everyone believes he is malabsorbing his food.

Basically, imagine eating a meal and afterward your have a miserable stomach ache.  Some, not all, but only some of the nutrients and fuel are absorbed.  Your body cannot process or digest all the nourishment it's taking in because it doesn't have the right tools.  Then you feel a wretched stomach ache.  You feel this way after every time you eat.   You begin losing weight since your body doesn't get all the good stuff out of the food you are eating.  And because you no longer have an appetite because your stomach hurts, you don't eat.  Your body begins losing precious calories and you aren't putting enough back in to refuel.  That is what has been going on with Michael.

No wonder he has had a stomach ache.  No wonder.  I am sick.  I feel my own stomach take a turn.

We discuss new medications for Michael.  New ways to add calories.  New foods to make.  I am starting to feel this ugly disease creep into my already insane brain.  It's almost too much to handle.

As I wrap up with the Nutitionist, someone cracks the door open to give me a message.  That's when the escape happens.  Out the door like a flash, Dylan is gone.  He has disappeared into the hallways of the Children's Hospital Building.  I dart out of the room chasing after him.  He passes all the exam rooms and is all out laughing at me.  Dylan has no mask on, because clearly there is no time for a mask during a great escape and, oh by the way, it's way too appropriate for a CF clinic and waiting room.  He loves the chase.  I am not anywhere close to grabbing him when he jukes to the right, then a hard left, and heads out into the bustling waiting area again.  His little legs are a flurry, he turns left and starts to head to toward the front of the building where we entered.

I am in good shape, but this kid is FAST.  I actually have a momentary glimmer of promise to catch him.  I thrust my arms forward with all my force and yank him back into my arms.  I am able to grab and scoop him up.  All the while he is laughing at his stunt and kicking his legs hurriedly in my arms.  Oh Lord, Dylan is going to be the death of me.

I am panting as I retrace our path back to our exam room.  As we walk past, other parents and clinicians are snickering having witnessed Dylan's sprint performance.  I am just glad that he didn't make it outside and get on the tollway, which with his speed, is completely possible.

Just as I near our exam room, a door cracks open from across the hall.  One of our good friends whose son also has CF happens to be at clinic this morning.  He pops his head out the door of their room and grins.  "Hey, you wanna ride down to the gala tonight?"  Catching my breath, I respond, "That would be great."  The door closes, and I head back into our room with my little Houdini in tow.

The boys' physician with whom we have a great relationship with and I trust both professionally and personally walks into the room.  She takes one look at me and says, "You're going to need some good concealer tonight, honey."  It's just been that kind of week.  It's written across my face.  My dark mood and lack of rest is exceedingly obvious, especially without a stitch of make up.  Clearly, she is trying to lighten the mood.  We both laugh, discuss the gala which she will also be attending, and we agree that cosmetics are the easy solution to an easy problem.  We move forward to talking about the more complicated problems around the disease I hate.

Nearly four hours start to finish and after a battery of blood work and chest x-rays , we are finally packed into the car heading home.  Both boys  immediately are passed out asleep.  They are drained.  And so am I.  But I have to get ready for this gala tonight.  The next hours I spend trying to navigate nail painting, CF breathing treatments, feeding the kids, applying make up, cleaning up dog puke, and getting out the door.

As I ride into the beautiful city of Chicago with my friends and I tell them about the snags we have had in recent weeks the response is, "What are you doing in our car?  You are a bad luck charm."  We all bust out laughing.  I really need to have some fun tonight and to take the edge off the upsetting news about Michael's weight and the stress from having no heat this week.  Then my phone rings.

"I don't have my tuxedo shirt buttons.  They are at home.  What should I do?"

Seriously???  This can't be happening.  My husband is getting dressed for the gala at his office and has no buttons for his shirt.  I am not surprised.  It's just the way of my world.  He decides to McGyver his shirt together with some engineering of binder clips.  One his tie and vest are on they inconspicuously hide the lack of buttons on his shirt.  Talk about an illusion.  Guess you can call my son Houdini and my husband Copperfield.

The regal event is a fundraiser for Cystic Fibrosis where esteemed chefs from all over come and create tasty delicacies.  It is a black tie affair and I am really looking forward to tonight.  There is a lengthy cocktail hour with delights to satisfy the utmost foodies in the room, a full dinner and plenty of fundraising efforts with a silent and live auction with the proceeds going to the CF Foundation.  Finally, along with awards for the preferred chefs of the evening voted by the gala's attendees, they also present the "Bid for a Cure" where attendees can bid during a live auction to make a donation.  Our family as well as the others seated at our table are highlighted in the special video production that is aired before they start the bidding.

The theme of the spectacular evening is "The Emerald City".  There's no place like home, there's no place like home.  You and me both, Dorothy.

The evening overflows with fun and positivity.  However, the reason we are all gathered together does not go unnoticed.  My best friend is working the event because she is a charitable soul.  A lifelong friend.  Someone who is in the trenches with our family.  Someone who wants the cure as badly for her sweet Godson as much as we do.  And I love her for this.  Completely selfless, she is one in a million.

We spend time with the other families who have kids with CF too.  We have grown close to a special few of these families over the years.  We are each others support.  They are the friends who, well, 'get it' when no one else really does.  We talk about CF treatments, endless medications, balancing life and disease, and fundraising together.  We cry together and we collectively see the light on the horizon together.  We stand arm in arm in this battle against CF for our children.

We mingle with such remarkable adults living with CF who inspire me every step of the way.  Their valiant fights leave me hopeful and their undying optimism humbles me.  I am almost nervous in their presence because I so admire these amazing individuals.

There are the volunteers and employees of the Cystic Fibrosis Foundation who are working tirelessly to raise money that supports a cure.  They serve up a lovely evening filled with food, fun, and whimsy.  Most importantly, they overachieve on a night of fundraising to find a cure.

The night is filled with hope, love, and good things.  I make new connections, rekindle old ones, and smile all along the way.  But there are moments in the evening, lulls, where my heart aches.  The disease lingers.  I can now relate to the 'weight maintenance' conversations around the room.  I can also share our "hospital story", since most everyone has one.

I most want to pull back that curtain and understand all of why this terrible disease destroys so much.  It was simply a man behind a curtain operating levers and buttons in Oz, I want to understand how a minuscule malfunctioning protein can produce such grandiose effects with CF.  I want to pull back that curtain and see the dark places, the light hope and every single shadow in between.  I want nothing more than to know everything I must to care for my sweet angels.

I am so overwhelmed with the day, it's ironic that at such an elitist food event, I can't bring myself to really eat.  Seriously, it's not the Spanx under my dress holding my belly in either.  It's the adrenaline pumping from the early morning hours of clinic visit, to the stresses that weigh on my heart about Michael, to the giddiness of arriving at the gala, to the airing of the video and seeing my sad self on all the giant screens in the banquet hall.  It's also the true sorrow in my stomach for the reason we even gather tonight with all of these amazing folks.  I just can't eat.  It's just too much.

I would pay later for my surging emotions, too much red wine, and no food in my stomach as I politely ask the limo driver to pull our stretch limo over off the tollway so I can get sick properly on the side of the road.  Completely classy, I realize this.  And still in my designer gown and heels of course.

What's life without adventure?  What's life without the unexpected formal-ware purge?  What's life without an escape attempt with my Houdini every so often?  What's life without a little challenge even if it is a weight gain challenge?

There would be no stunts at which to marvel and no flair to keep our interest.
There would be no darks, no lights, and no shadows.
There would be no mystery, no adventure, no intrigue, no applause, and no thrills.
There would be no wonderment, and most of all,
there would be no journey. 

If all shall be revealed, then what's the point?

Apparently, the Wizard in the Emerald City and Harry Houdini were both on to something really grand.