Sweet Tooth.

Spring Break.  A collective sigh from all school children.  A departure from the classroom monotony and lessons.  Fun.  Sun.  And, for the lucky kids, a trip somewhere with family.

Spring Break for the parents of preschool age children is feared.  All moms who adore their sweet little toddlers are quaking with nervousness as the time approaches.  An entire week with my kids -- now, what to do?!  How will I keep them occupied?  One answer.

Doctors appointments.

Well a couple appointments anyways.  We kick the week off with some fun RAST testing for Dylan's food allergies.  It's almost an ironic reminder leading into a holiday weekend of the seriousness and regard for Dylan's food allergies.  I sometimes forget the whole food allergy thing...  seriously.  It may sound insane.  We have Epi-Pens and the whole sha-bang.  But my brain has hardwired CF to the top of the list.  I run everything through the "CF filter" so to speak.  So the annual trip to allergist to be reminded of how much more diligent I should be in is definitely just what I need.  (Laying sarcasm on heavily here.)

The new allergist is located in New York City at Mt. Sinai on 5th Avenue off of Madison Avenue.  Funny how years ago, 5th Avenue and Madison Avenue had very different meaning for my young, shoppaholic self.  A lifetime ago.  A wardrobe ago.

My entire morning starting at 6 am battling New York bound traffic over the GW bridge... obliterated.  The allergy test results prove what we already knew.  Yep.  Allergies.  You bet.  Stay focused.  Read labels.  And be vigilant.  Repeat.  My heart sinks and my hope for another year of peanut butter gluttony has - poof! - disappeared.

The remaining days leading up to Easter weekend are spent with my boys building forts inside and playing in the yard outside, when they are not in fist-fights and screaming matches, that is.  Well, until Friday, more specifically Good Friday.  Weeks back I scheduled the boys' regular dentist visit for the week of Spring Break.  We had been needing to find dental care in New Jersey, but other things have trumped seeing the dentist.  But now it is time.  When scheduling the appointment, I guess that I didn't connect the dots that I had scheduled the appointment on Good Friday leading into Easter weekend.

With my husband off work, it is ideal.  On this day, the parent to kid ratio is 2 to 2.  Thankfully.  We are game on with our man-to-man defense.  Our family walks into the beautifully decorated family dental practice.  Lovely ivory wainscoting paneled walls.  State of the art gold digital frames on the wall cycle kid's artwork they have gifted the office.  The reception area has a museum feel to it, but warmer and more inviting.  There are bright red mod sofas and a TV with kids shows.  I sit down at a funky white table and coordinating chairs to begin sifting through the pile of paperwork and my pen scribbles furiously.

NAME.  DOB.  ADDRESS.  INSURANCE.  BLAH BLAH BLAH.  I wish I had a dollar for every piece of medical paperwork I have filled out in my life.  I'd be rich.  The next thing...   LIST ALL MEDICATIONS OF PATIENT.  Ha ha.  They must be joking.  I didn't even think of it since we were at a dental office...  not a traditional doctor's office.  I should just carry around a medication list so I never need to scribble furiously again.  My hand begins cramping from my wrist to the heel and through my palm.  As I continue through the sheets of information, I realize I have to write everything all over...  TWICE.  Groan.

As we are waiting in the brightly lit, immaculate office, Dylan loudly asks for COOKIES.  Then he demands FRUIT SNACKS even louder.  He makes his wants clear in such a billowy voice, the message reverberates harshly off the dark wood floor and the walls.  I could swear I heard an echo.  Completely awesome.  My kid in a dental office, meeting a new dentist for the first time, is DEMANDING sugary cookies and candy.  My husband I laugh and tell him no, not now, he has to visit the dentist then we will think about it.  It's a superhuman feat, but I finish with the necessary forms and hand them over to the receptionist.

After some time, my husband steps out for a work conference call.  Now it's the dreaded Zone Defense.  The dentist comes out greets us and walks us into his office to talk first.  We discuss the boys' Cystic Fibrosis in-depth and my keen awareness about the need for critical dental care.

You see, CF medications and nebulized treatments can sit on teeth and cause greater risk for staining teeth.  They can also erode surfaces of teeth and create an ideal environment for cavities and tooth decay.  Layer on top of all of that the CF high-calorie diet including milk products that can sit on teeth, the sugary "crap" calories just to pack some calories in finicky tots, and the super busy schedule "it's easy to forget the morning brushing ritual".  Those little mouths are a cavity's dreamland.

Dylan and Michael play with the dentist's calculator and shiny silver lamp while we talk.  I can't help but shake the Willy Wonka images that are floating in and out of my head as the dentist scans the paperwork.  Monstrous rainbow lollipops.  He reviews the medication list gently tracking each one with his index finger.  Gooey taffy gum drops.  He looks up through his glasses, smiles tautly, and looks back down at more family history.  A chocolate river.  He finishes reviewing their lives in black and white medical paperwork as I rub my jaw anxiously.

My husband meets up with us again as we arrive at a room with an empty dental chair.  Michael pleasantly hops up in the chair and listens to all the directions from the dentist.  He kicks back with his feet crossed casually at his ankles and watches TV while the dentist works away to clean and examine his teeth.  Dylan climbs around the room and plays with the stuffed animals.  He glances over at Michael occasionally.  Then Dylan tries reaching for things on the counter.  It's a close call as I grab for his little hand trying to reach into the 'hazardous materials' garbage hole in the counter.  He is anxious, bored, and trying to find anything to entertain himself.  My husband and I look at each other knowing that Dylan's turn is coming next.

And it won't be pretty.

When Michael finishes, he hops out of the chair and into my lap.  My husband tries coaxing Dylan into the seat.  "Look at the cool TV you can watch"...  "Look at the monkey on the dentist's lamp"...  "You can hold the lady bug"...  You can hold Mommy's necklace..."  All to no avail.  Dylan begins to resist when Daddy tries to pick him up and put him in the chair.  He goes limp.  Then he slides off the chair.  Then he hits, kicks, whatever he can even the dental assistant.  The topper is when he starts crying and throwing a full-blown tantrum.  He screams and begs for fruit snacks.  Or cookies.  Or both.  "I want froo nacks.  Froo nacks.  Cookies!!  I want Mommy!  Froo nacks!!"  These were often used for bribes to get the boys to stand on the scale at the Pulmonologist's office to get weighed.  It has come full circle to embarrass me in the dentist's office.  I can feel myself flush and I hug Michael.

It takes the strength of my husband and some delicate work by the dentist to get an abbreviated flouride treatment in Dylan's little mouth.  Poor kid is still screaming for fruit snacks through the entire 4 minutes.  The scene is laughable and insane.  As hard as it is, the dentist tries to console me as my face is contorted probably conveying a freaked out mom expression.  He explains Dylan is not the first with this reaction and unfortunately there are certain cases where they stop and others where they proceed.  Clearly, in Dylan's situation it's best to proceed.  Let him experience a dental visit once to understand he won't be hurt, it isn't that scary and he'll then have some time to process it.  I can't tell if it's scarier for sweet Dylan.  Or me.

As tough as it is, I know that the dentist is quite possibly right.  As we leave, Dylan is heap of tears and frustration.  A consolation prize of a tooth sticker is just not acceptable.

*  *  *

Two days later, I wake up Easter morning to use the washroom.  I am groggy and stumble out the door into my dark bedroom.  I see Michael's light turn on.  I peak through the crack of my bedroom door and watch him appear at his bedroom door.  He is standing on the verge of his Easter morning adventure in the doorway to the hall.   His messy hair is standing straight up on one side and he is staring down at the floor.  I can tell he sees them.  He looks back and forth and smiles.  His amazement becomes clear across his face.  I bolt into bed so he won't see me.  He bounds into our room.  "He came!  There are tracks on the fwoor.  Come see!"  I grab my camera and head out with him.  My husband right behind us.  I start snapping pictures as he follows the trail of tiny white powdery rabbit prints.

He beams a beautiful smile that would make any dentist proud when the tracks lead him to two brightly colored empty Easter baskets.  This four-year-old knows exactly what to do.  He starts right to work searching for his treasured eggs.

After Michael has located all of his eggs and then some, he helps smiley, groggy Dylan to find all of his.

Michael points and excitedly shouts, "Wook there Dyl!  Wook there!"  and "Aww, siwee Bunny.  That one is tricky.  Wook.  He hid one there!"  In no time, a collection of plastic eggs litters the floor with goodies, coins and toys.

It is a day of a full-on assault of sugar.  A candy bonanza of the Easter Bunny's doing.  A family tradition of Fannie May Chocolate Foil Wrapped Eggs and Bunnies.  Followed by Sweetarts.  Skittles.  Starburst (or as Dylan calls them, "StarZurst").  Tic Tacs.  LolliPops.  Mentos.  And who knows what else.  A pastel mosaic of bubble gum pinks, lemony yellows, spring greens, blissful blues, and pleasant purples.  What that bunny thinking?!  By 8 am I make both of them brush their teeth from the onslaught of sugar already in a tepid bath in their kid mouths.

All throughout the day, Dylan hoists himself up onto the counter to retrieve his bowl o' candy.  This child needs no help.  Just plants his hands on the counter above his head, engages his core strength, and pulls himself up and onto the counter.  His strength and agility have always astounded me.  We discourage him from doing this but it doesn't matter.  The treasure chest on the black granite counter is just too tempting.

Every holiday I dump the boys' candy into a bowl (or two)... this goes for all the kid-sacred holidays.  Halloween, Christmas, Valentine's, Easter...  This way, I can monitor how much they are eating and when.  With chocolate and other high-fat goodies, I need to give them enzymes beforehand so they don't get belly-aches.  With peanut and nut allergies lurking, all candy monitoring in the kitchen is a must.  And while we are liberal with candy dispensing and eating, I do want some sort of control over knowing what they are putting in their mouths.  That Damn Easter Bunny.

By the end of Easter night, bedtime has been delayed a good hour.  Treatments take longer to get underway and I haphazardly turn on a new Backyardigans show...  Michael points out that the show is really long.  I check the DVR and realize that I teed up an hour long Easter special.  So I let them enjoy the rest of Easter night and stay up a bit later than usual watching their show.  The machines roar and they listen intently through their headphones.  I watch the show with no sound, just the whirr of the machines helping my boys with clearing their lungs.

It is bedtime and the whole family is exhausted.  Time to brush teeth one last time...

The boys are sporting their new pajamas, quite possibly the only practical gift left in Easter baskets and are ready to brush their teeth.  They discuss the colorful dragons that adorn their new jams.  I gently help Dylan scrub all his teeth as he sings octaves, higher and higher of "ah.  Ah.  aH.  AH!!"  I remind him to spit.  Same old story.  He swallows and then blows a raspberry into the sink.  I shake my head and laugh.  I know that some day, not very far off, I will miss his inability to spit.  It's only a matter of time.

Afterwards, I ask the boys to take a photo together to commemorate the day together.  Dylan cheerily agrees, Michael has different thoughts.  We spend time disagreeing about taking a simple photo.  He digs in and doesn't back down.  He's like a teenager that just doesn't want to cooperate.

After a total disagreement and then a Mommy-Michael make-up of hugs and "I'm sorry's", all is right as the boys settle into bed on Easter night.

I collapse into bed.  I am feeling exhausted and not surprisingly, I feel like I am coming down with something.  I realize that I haven't yet brushed my teeth.  Bah!  That Easter Bunny.  My mind slows.  I get distracted thinking about that Easter Bunny and all the magic of the day.  Michael's smiles and their cheers.  The excitement of each colored egg and the treasure revealed each time.  The hustle and bustle of the week.  And I try to settle into my bed brain with the same blessed perspective of our lives.

Before I know it, I am drifting off in a pleasant slumber.  The last thoughts stroll through my head before I fully fade away...  Yeah, pretty sure I didn't brush my teeth...  Damn Easter Bunny and tooth decay...  Well, at the very least the boys brushed theirs...

Even with the food allergies.  And the tantrums.  And the doctor appointments.  Even with the arguments.  And the regimen of CF treatments.  And the stressful spring break week.  And all the insanity of each sunrise and sunset.  Even with a likely few cavities along the way...

Most days, being a parent is a pretty sweet deal.

This much I know.

Good Grief! A Peanuts Halloween

Cute, cackling witches and white whimsical ghosts.  Black cats and black bats.  Bright orange pumpkins and glowing jack-o-lanterns.  The boys are enchanted with Halloween and the fun of earning a bagful of candy by simply negotiating with the famous opener, "Trick-or-treat!"  I am sure my love for Halloween has rubbed off on them.

And there is a whole lot of love for Charlie Brown in our home.  The boys are ecstatic when they can start watching "It's the Great Pumpkin Charlie Brown."  We would probably watch it a total of over 30 times before Halloween actually arrives.  Last year we decided to immortalize our favorite holiday icons into our jack-o-lanterns.

Not surprisingly, these are on the docket for this year's costumes.  I can't wait to see my two boys as the adorable classic duo of Charlie Brown and Snoopy.  A long search for a white sweatsuit for Dylan's Snoopy costume turns up nothing and I have to special order one.  The days of my childhood where you could find Hanes sweats in every color at superstores have certainly passed.

I was a lucky kid whose mom each year brought us to the fabric shop and chose a pattern to craft custom Halloween costumes.  I remember the boredom as she flipped through the McCall's pattern books and would lob ideas at me with each page as she licked her finger and delicately flipped to the next page.  I can still smell the stale air of the fabric shop and clearly remember the vibrant colors of the bolts of fabrics lining the shelves.  A rainbow of cotton, wool, and satin staring at me.  Although I was bored, I would be elated when she found the right costume pattern and chose the best fabric and we would head home.  Childhood boredom was minor in the quest to have a completely amazing costume.

As if there is a correlation between the "better" the costume, the more candy you would get.  My mom would spend a couple weeks intermittently working on my costume.  One year a dead-ringer for Dorothy from the wizard of Oz with the powder blue gingham and sparkly red ruby slippers.  Another year a little witch, coyly looking from under the brim of her hat.  And another year the Pink Panther with super cool homemade mask.

My mother inspired me.  I want my kids to reflect on Halloween and remember the thrill of thinking up a the costume idea and then using creativity and imagination to create it.  Although I am not skilled behind a sewing machine like my mother, I still decide that Charlie and Snoopy are doable.

I carefully plan and begin sculpting the possibilities in my head.  In early September I start searching for components like a yellow polo which I add my own painted bold black zig-zag.  I buy a play WWII aviator hat and some goggles.  I make Dylan a little red fleece scarf for Snoopy, the Red Baron.  I convert an old pair of Mikey's Crocs into white Snoopy paws.  Finally, the one specialty I will add will be homemade masks.

I carefully draw Charlie Brown's face and Snoopy's face on foam board.  I cut each out precisely and add layers of paint.  Bright fleshy peach for Charlie and stark white for his beagle.  Then bold, uneven black lines completes the legendary cartoon characters' mugs on my kitchen table.  I feel like I am staring these Blockheads right in the face.  The kids will surely love them.

I was wrong.

As I would spend the following weeks leading up to Halloween trying to convince Dylan to wear his costume and he would consistently run the other way screaming every time I would show him the white fleece sweatpants with a white tail sewn in.  And continually negotiating with Michael that, no, he would not be a punching, fighting, laser-shooting Optimus Prime for Halloween.  He had already agreed to Charlie...  and his costume was now finished.  Sigh.

I love Halloween.  I love the decorations.  I love making the kids' costumes.  I love that the boys love watching the "It's the Great Pumpkin, Charlie Brown".  I love the amber colors of the season.  I love pumpkin patches.  I love it all.  However, I have learned to HATE one aspect of this time of year...  even all the way through Christmas time.  Two words.

Peanut.  Allergy.

And in our case, treenut allergy too.

In a house where the kids need as many calorie-dense options as possible, I continually struggle with the fact that we can't have peanut butter in the house.  That the boys can't even eat a simple peanut butter sandwich.  When Dylan was a baby and before we knew he had an allergy to peanuts and nuts, I used to feed Michael bowls of peanut butter with a spoon.  He would finish and ask for more.  I felt so happy that this was an easy way to "pack it in."  And happy that it was a better fat than some junk he could eat.

I have a very clear image of Dylan rolling a peanut butter jar around the floor of our apartment when we lived in Bethesda, Maryland.  It was his favorite "toy".  Oh, the irony.

Dylan broke out in hives as a baby from 4 months on.  We couldn't explain it, nor could the doctors, and chalked it up exposing him to new pureed baby foods.  By the time he was 12 months, his pediatrician suggested I try peanut butter with him.  After all, we didn't have a family history of food allergies and those hives were on all accounts, flukes.   The pediatrician told me that they were starting to recommend trying peanut butter sooner than doctors had previously suggested and that Dylan (having Cystic Fibrosis) was a perfect candidate to try peanut butter early...every little option counts in a high-calorie diet.

The day after the visit with the doctor, I had finished feeding Dylan his lunch and decided it was worth a try.  I put a dab on Dylan's lips and he sat smacking the peanut butter.  Then I handed him a half a Nutter Butter cookie and he LOVED IT.  As he began eating it, all smiles, I noticed his chin and neck began to look red...  Then rashy...  Then full-blown break out in hives from his little mouth all the way down his neck and back to his ears.  A red itchy rash covered his baby skin.  I was so startled and rushed to get Benadryl and call the pediatrician's office.  So much for things being easy...

It all made sense why Dylan had broken out in hives as a baby.  I was still breastfeeding him and I was eating peanuts in my diet.  He was probably reacting to the peanuts after my body metabolized it and passed it on through the milk.  We were now part of the estimated 0.5% of the population with a peanut allergy in our home.

My brain is a mental contortionist trying to decide if a product is safe to bring home because of Dylan's peanut allergy. Is it worth enough to bring home by ticking through the list of will the boys like it?  Will they eat it?  Is it nutritious?  Does it have a lot of fat?  Protein?  Fiber?  Will they need to take enzymes with this product and if so, what I can give them with this product that does offer high calories?  It's always a 20 question process.

I miss peanut butter.  I miss Reese's peanut butter cups and Almond Joys.  I miss Snickers bars and Peanut M&M's.  I miss sneaking a few mini candy bars this time of year with no remorse.

Now, it's not even an option.

Michael and Dylan need a truckload of calories.  EVERY DAY.  Their little bodies can't fully absorb fat, protein and all the vitamins and minerals they need.  They are also burning calories at a warp speed rate due to inflammation in their bodies because of Cystic Fibrosis.  I have heard that they need an estimated 50% more calories than the average kid.

Halloween should be the PERFECT time to load calories in.  I know, I know.  Not just sugar calories, but we also do our fair share of healthy veggies and lean protein.  But we never skimp on sauces, dips, oils, butter, etc.  Clearly, Daddy and I need to consider moderation and hit the gym, but the boys can indulge.

Okay, now here's the screaming rant...  all moms have 'em and here's mine this week.  And here it goes, look the other way, there is no self-pride left...

I MISS PEANUT BUTTER!!!!!!!!!!

A simple peanut butter sandwich.  Peanut butter in chocolate.  Peanut donuts!!!!  Honey roasted nuts.  Beer nuts.  Spicy peanut dressing on salads.  I could go on like the guy in Forrest Gump with shrimp.  I'll spare you.

And I feel on overload when the kids come home with bags of candy and I have to sift through them and eliminate half of the candy and say, "Sorry, it's not safe."  What the hell.  In a parallel universe, if we didn't have a nut allergy in our house, I would totally be stealing some of this candy when the kids were sleeping.  I just want to be a selfish glutton for once.

So, as I end my rant, I ask each of you reading to please eat a Reese's Peanut Butter Cup for me on Halloween.  I will probably be eating Smarties or Candy Corn.  Groan.

But one thing is for sure, I'll bet Charles Schultz didn't intend on Snoopy needing an Epi-Pen when he created the Peanuts gang.

Raindrops Keep Fallin' On My Head

Merriam Webster defines "cliche" as a "trite phrase or expression".  While I can use a cliche to describe my recent days, weirdly enough the events themselves are anything but cliche.

When it rains, it pours.

We all know the expression, some of us more intimately than others.  Most certainly, there are plenty of folks that have hit tougher times than me.  I am not going to lie though.  The hits just keep on comin'.  (And yet there is another cliche).  I cringe when friends continue to say "Well, it can't get worse, can it?"  Don't even put this cliche question out in the universe.  Yes, it can get worse.  Don't even tempt the wrath of the Gods of Luck.

My car is finally repaired from the infamous birthday car accident (See blog "The Lottery") and to get my car back means a little piece of my life resumes to normalcy.  And to get this back, it requires picking up my car on the coldest day of the year.  More accurately, below zero temperatures.  Awesome, perfect conditions to switch two bulky, awkward car seats from the rental car back into my car.  No problem.  It is an engineering project that requires strategy and patience, so that both boys are safe and buckled in so that at any given point they can't dart into dangerous traffic on the busy road only yards from the body shop.  During the 20 minute arduous task, the kids are screaming and crying with a stream of clear liquid running from their little noses from the icy air.  Their sweet breaths are visible hanging in the frigid air with every emotional exhale.  Michael is yelling that Dylan is stinky.  I am just asking for the strength to get through this.  Then, I detect a messy diaper too.  So, I check in my diaper bag.  No diapers. Great, this is sooo not ideal.  I have to ditch the next stop to the grocery store, a trip for groceries and items that we need badly.  I head home with the kids sniffling and complaining the whole way home.

I throw the door open to the house, and I rush Dylan upstairs to deal with an impending diaper disaster.   I turn the corner into the kitchen, where my eyes adjust to an unexpected mess.  There are multicolored cake crumbs scattered all over my floor and stove top.  It takes a second to digest what has transpired.  The dog has snacked on a baking tin of 12 cupcakes that was sitting on my stove top.  Five cupcakes are missing in action and evidently, she ate them right out of the baking sheet.  How is this not surprising at this point?  I am laughing and crying all the while muttering naughty words under my breath while cleaning up the mess.  The kicker is that Dylan does not in fact need a diaper change.

The metaphorical thunder clouds begin to gather ominously around me.

Two mornings later, I feel a chill.  I am buried under my covers in bed Sunday morning and a coolness washes over me as I wake.  Strange, I think, since the last time I had this same sensation, a few weeks back at Christmas our heat went out.  Vividly, the memory hits me.  No heat with a house full of guests.  Hmm.  What a minute.

Wait.  Just.  A.  Minute.

I bolt out of bed before anyone else is up in the house and I say to my husband who is starting to stir, "I bet the heat is out again."  I hurry down to check the thermostat and it reads 64 degrees.  I am reeling from this thought since we just had a tech out again to replace and fix a couple things in the furnace this week.  He had advised that there is a chance we might need a new furnace altogether.  Pretty insightful.  Thanks, guy.

Late January in Chicago with no heat.  It is immediately evident that we have to leave the house for a warmer Sunday with our family.  We pack a few bags for the kids.  But it's not so simple.  Clothes.  Pajamas.  Diapers.  Socks.  Pull-ups.  Check check check.  But also Enzyme pills, vitamins, probiotic, Miralax, reflux medication...  check check check.  I tally through everything hoping that I have left nothing behind.  All this, though we are only planning to stay 24 hours away from home.  Just packing an 'overnight' bag is an absurd undertaking.

At least the rest of my day should get better.  A prospective afternoon including a gourmet bread making class and then an appointment to sample bridesmaids dresses with family.  I am looking forward to my few hours out for the sheer mental break.  Instead, Sunday shapes up to be a barrage of juggling and running against the clock.  Some enjoyable, relaxing Sunday afternoon.

After breakfast at Papa and Nonna's house (the affectionate names my boys have for my husband's parents), I head off to my culinary class.  I am exasperated and my head is spinning with stress.  Artisan breads.  Humph.  It sounds lovely.  Somehow I am trying to fit this "Aristan Breads" puzzle piece into my day's "No Furnace" puzzle.  It's not quite fitting.

A warm, gold hue fills the culinary classroom as I land in my chair.  Clean tables with neat, little glass bowls with various ingredients portioned out.  The massive viking appliances emit a gentle, calming lull throughout the kitchen.  My heartrate slows.  I focus on the bread and try to relax with friends.  The chef takes us through the 'easy' and approachable process of making bread.

"Making bread shouldn't intimidate you," the chef starts...  We have no heat in our house.

Chef jabbers on about proofing yeast...  We have no heat at the house.  It is January.  Freaking January.

"This dough doesn't own you" Chef continues as she shakes a blob of dough at us...  I glance at the ticking clock.  I have to get to the bridal shop to try on dresses.

"A sponge is a living thing.  Some bakeries have sponges that are hundreds of years old."...  I realize this class was supposed to wrap up at 3.

As the chef continues on, something about putting ice cubes in the oven to give bread a crispy crust, it is full-blown obvious now.  I am going to be late to try on dresses.  Or I am not going to get to finish the class or eat all the gourmet delights.  Wow, shocking, that I don't get to enjoy the best part of something.

The class breaks off into groups to start to make our breads.  Another mom and I are making Ciabatta with an olive tapenade.  We dive into the thoughtful process donning our aprons and flour on our hands.  Once the dough is done rising and just as it is going into the oven, I have to leave.  May I suggest for those wishing to learn the fine art of breads, don't plan on doing it in 2 hours or less.  Even if that's what the class schedule says.  I have to bolt and leave the trail of comforting, delicious smells behind.  I bid my friends good-bye and head for the door to try to make the bridesmaid dress appointment.

I am scattered, but make it on-time and we power through trying on different dresses, trading the styles back and forth.  We debate and analyze every stitch of the two favorite gowns.  After some time, we are in agreement on a couple options and head on our way.  I wish I could relax and take in all the special moments.

Some bridesmaid I'll be.  I am certain months from now, I will be chasing two screaming kids around the church during the ceremony.  I can just see it now.  Not unlike another family in recent memory wedding where Michael was the ring bearer.  My best friend had to rush him out of the church since he freaked out and started screaming "Daddy!" when my husband, the best man, left Michael's side to walk down the aisle.  My friend damaged both of her knees in the scramble.  Looking back, I feel terrible about her injuries.  She is amazing and laughs it off.  But maybe in the three decades she has been my closest friend, she has learned to expect this insanity.  As I leave the bridal salon, I would love to go crawl in bed, but clearly I have to head back to Papa and Nonna's home to our nomadic situation and troubleshoot other things.

As the week continues, we are still not in our home for any length of time since all the various remedies for the sputtering furnace are short lived. We are in between our home and my husband's parents' home with this ongoing situation.  Finally by Tuesday one of the techs explains to me as he points his flashlight on the furnace that it is done.  There is condensation dripping all throughout the electrical work of the furnace.  Shut 'er down.  We now have a full-on safety hazard on our hands.  We have no hope but to spend a cool few thousand bucks for a new furnace.

The second wave of sheeting rain starts pelting my heart, my endurance, and my spirit.

Here comes the heaviest gusts of rain...

One night Michael is sick.  Not himself at all.  He has been complaining about a stomach for a day or so and we are still staying at Papa and Nonna's house.  I lay with him on the sofa.  He is definitely not himself.  Clutching his stomach and groaning in pain.  He whimpers softly and cries out periodically for me.  I can't eat the take-out that Papa has picked up for us.  I am too upset and concerned.  We are displaced from home and now with a little boy who is clearly under the weather.  His eyes have dark circles under them, almost with a red hue.  I rub his back slowly and gently.  Back and forth.

Dylan is wandering around playing with various toys that Nonna and Papa have for the kids.  He walks over and says right in Michael's face, "Mike?  Mike?...  Mike!", showing Michael the brightly colored balls he tossing around the room.  Dylan scurries away.  Grrrrroan.  Michael is so uncomfortable.  He whispers, "You are a good Mommy.  I love you."  He gives me the sign language sign of "I love you."  Then he blows me a kiss even though I am laying right next to him.  I can barely contain my sadness.  I smile weakly at him adverting my eyes so he can't see the tears welling up.  I continue rubbing his back.

When I realize he is running a 102 fever, I leave Michael in Papa's comfort and Dylan still waddling around playing.  I slam my car door with a hurried bang and start the frigid car to go to the store for Ibuprofen.  I troll the shelves with my index finger searching for the right box.  Bingo!  I yank it off the shelf.  As I head to the check out, a Snoopy doll that plays the Peanuts song catches my eye (see Previous Blogs with Charlie Brown).  I swiftly lift if off the display.

When I arrive, Michael has fallen asleep on the couch.  He whimpers and talks in his sleep.  He is not restful.  It is getting late, but I don't want to disturb him if he is quiet and comfortable.  After I tuck Dylan into bed, I join Michael on the sofa.  He is now awake and I give him a dose of Ibuprophen to handle the fever.  Within minutes he is really upset crying to use the bathroom.  We hurry him to the bathroom just in time for him to get sick.  Only minutes later, he is playing cars and chipper like he is a new child.  Virus?  CF stomach stuff?  Who knows.  I am just thankful that for now, whatever it was has passed.  That night he falls asleep with Snoopy in his arms.

The storm re-surges.  The waves of icy rain are slamming against me.

Two mornings later, Michael feeling better, we still have no heat.  I find myself rushing out the door coffee-less with two kiddos along for the trip back to our chilly house.  Since we have nothing to do but kill time waiting for the crew to arrive to install the new furnace, I decide to run Michael on his respiratory vest.  He has started a nasty cough, clearly hasn't been feeling well, and with all the commotion between staying with family and trying to keep my head above water, the kids treatments are suffering.  This special respiratory vest is a medical device where he puts on an inflatable vest that hooks up and plugs into a machine that alters speeds, frequencies and pressures through the vest against his chest.  It is a form of airway clearance to help him break up the dangerous mucus that forms in his lungs.  A typical session takes over 30 minutes where he intermittently coughs and tries to clear his lungs.  He usually watches a favorite show or movie during his time.

I press the buttons on the machine to start his therapy and I press the final button to start the treatment.  The vest starts going and then abruptly stops.  ERROR 6.  CALL FOR SERVICE.  That's weird.  I unplug the large device sitting on our coffee table and replug it in.  Same drill, boot him up, he's ready to roll.  Press the button and the vest begins only to shut off again.  ERROR 6.  CALL FOR SERVICE.  Can't I catch a break?  And a third time I go through the drill only to be greeted by the same annoying message on the screen.  ERROR 6.  CALL FOR SERVICE.

Ok.  No heat.  No sanity.  No vest for CF treatments, too?!  I am close to cracking.

As Nonna arrives to help watch Michael and wait for the furnace crew, I leave to take Dylan to his allergist's office for testing for allergies on some specific foods.  Surprisingly, he is an angel.  He sits nicely for the uncomfortable scratch tests on his back.  Thankfully everything comes back negative and the retest for his nut and peanut allergies we decide to do with a panel of bloodwork at the boys' CF clinic tomorrow.  The appointment is relatively uneventful.  There is a word you don't hear often around here.  Uneventful.

The rain continues its torrential downpour.  I can't see through the unrelenting precipitation.

Then my phone rings.  It is Nonna informing me that there is a big problem that the furnace installers found.  The coil that sits in the furnace and connects into the air conditioning condenser is melted, completely destroyed.  It means that the new air conditioner installed two years ago is defunct and destroyed our furnace.  This news alone is defeating.  We are now replacing the furnace as a result of a problem with our new air conditioner, which is possibly a problem too.

I now realize that the melting coil has probably been burning through our house and air ducts.  Great.  Just what I need with two boys with Cystic Fibrosis.  And now I have to digest this too.  I am exhausted, juggling a thousand balls in the air, but this is almost too much.  The installer can replace the furnace and momentarily, that's all I care about.  At least, we will have heat.  And we need to resolve the bigger issues later.

As the tech wraps up the installation, we realize that the new furnace is going to emit a smoke and funky smell.  Clearly, two boys with CF shouldn't be exposed to this.  But one more thing life flings at my already-complicated life.  Nonna takes the boys back to her house as a precaution.  After the furnace installers leave and the house is starting to warm up, I leave for Nonna and Papa's where I find Nonna is making some food for the boys.  I am so thankful for their help, hospitality, and endurance.

I am certain our entire family, near and far, has truly been holding the umbrellas for us through this storm.  My mother, "Gigi" is her sweet nickname to the boys, listens to my sobbing phone calls and calming my frayed nerves.  My closest friends listen to me rant or get heated text messages from me and responding with unconditional support.  My brother texts me to check on me, "Are you alive?"  Everyone is weathering this storm with us.  In this way, we are lucky.  And we are not alone.

I sit down and start scarfing the tasty food that Nonna has made.  When I am stressed I don't eat, so I have to make sure that I do in stressful times.  As the night proceeds, we have to strategize picking up my husband's new tuxedo (which is getting alterations), packing up our belongings, medications, and all, and getting the already exhausted boys home and in bed.

The week has been taxing only to stumble into our home, where it is FINALLY warm.  I have become all too thoughtful in the recent days of those who are homeless or in conditions where they have no heat.  In the bitter Midwest cold, heat is not a luxury, but a necessity.  I am thankful as we bound through the door to our home and the blast of warmth hits us.  My husband and I hurry the boys to bed and completely fatigued, I too collapse into the comfort of my bed that I have missed so much this week.

The clouds begin to dissipate.  And in some form, the rain passes.

At least until tomorrow when the coming clouds reappear.

Because the rain clouds always roll back in.

Until the next storm, I hope for a ray of sunshine.

All I want for Christmas.

This week, the Christmas prep is underway at our home.  The lights all twinkling.  The pretty gifts starting to hide under cover of beautiful papers and magic ribbon.  And the yummy scented handsoaps are now out the bathrooms.  We no longer light candles, at least like I used to.  I fear my boys inhaling some invisible soot.  Ridiculous, I know.  But there are certain things that are just different.  I miss scented candles, so the antibacterial handsoaps will have to do.

This is also the first Christmas without nuts.  Dylan was diagnosed with nut and peanut allergies earlier in the year.  No chestnuts roasting on an open fire, around here.  Uh huh.  Nope.  No peanuts.  No almonds.  No traditional family coffee cake littered with crunchy accent pecans.  None of my mother's famous peanut butter fudge that I could eat a whole tin of as a child.  None of it.  Having to rethink traditions and navigate the holidays with a new insight...  or at least dodge the landmines.

Earlier this week, Michael helps me wrap some Christmas presents.  He is good company and in a bossy tone keeps telling his little brother who is playing a round of golf in the kitchen and family room, "No, no Dy-Dy.  This is a big boy job.  I am helping mommy with tape.  No, no Dy, you're not big enough."  If anything it does give me a good laugh.  And Dylan could care less, as he is repetitively practicing his golf swing.

But it is clear that Michael is excited at the completion of each package.  Each one wrapped in shiny gold or red striped paper.  He helps me choose the heavy fabric ribbon and tie each one on with impeccable precision.  I hold the pretty satin among my fingers, wrap over and around the first wave of ribbon, and then his little finger would, SMACK, hit the first tie of the bow to hold the ribbon in place for the final knotting tie.  He knows his job and he is going to do it with the intent of one of Santa's elves on Christmas Eve putting the final touches on toys for good children all over the world.

Then he helps me pick out the special gift tags.  I use pictures and greeting cut-outs from this year's extra personalized Christmas cards.  He is thrilled by the personal touches these add to the gift...  He continues to persist that each gift should have a picture of him...  just him.  For the record, I have never claimed that my kids are not narcissistic.  Evidently, Michael is comfortable with everyone's love for him.  Then Michael eagerly runs the package into the other room with urgency and care to place it gently with the other packages.  His joy and thrill of Christmas tasks is palpable.

Yesterday, Michael announces to me that he wants to write his wishlist.  He is intent on documenting for Santa Claus exactly what he wants...  an orange remote controlled car, a candy cane, and a space ship.  He asks that I write the words out on a separate sheet of paper so he can copy them onto his paper independently.  We sit together as he lets his wishes be know.  His letters are skillfully done and he is quite the artist by drawing the car and the candy cane he wants.  But to be sure that there is no room for Santa's misinterpretation, he asks if we can give Santa my version also, which he has adorned with Christmas ornaments along the bottom.

All of this on a day that my two sweet kids are featured in the Chicago Tribune.  Our story was shared with thousands of people.  Our fight with CF every day.  The lovely family picture of the four of us on the cover of the Pediatric Health Report still makes me laugh.  The facade.  No stains on anyone's shirt.  No one fully scowling.  And everyone looking at the camera at the same time.  A Christmas miracle in itself.

A better insight into our world is me trying to get dressed after our gift wrapping session. With the kids downstairs in the family room doing treatments while watching TV, program of choice, clearly, A Charlie Brown Christmas.  I decide to look presentable for the day...  a big deal on any given weekday.  I throw on jeans and a casual shirt and head for my unorganized make up drawer.  I shuffle items around quickly since I know the clock is ticking.  I pull out my basic black eyeliner of the drawer and delicately start to line.  POP!  Amazingly, over the ear-shattering TV volume of a Charlie Brown Christmas, I hear a tube pop off the vest and machine Michael uses airway clearance.  I run down the flight of stairs and to the family to put the tube back on.  Then, Dylan's nebulizer mask slides off his little head.  I put it back on.  Then, run back up to my bathroom.  As I rummage around the drawer for perfume...  POP!  Oh brother.  I run down replace the tube to its proper position and run back up.  Then I hear it give again.  Tubes are off of Michael's vest.  I fix them.  And this time, Dylan is pulling at his mask.  Dylan is smiling his brilliant, lovable smile with his dark glittering eyes.  "All done."  He makes the "safe" motion with the focus and certainty of a major league baseball ump.  Oh brother.  He fights me the rest of the treatment.

Then, I get the added joy of cleaning up after the dog that is eating cinnamon crumb muffins out of the trashbag.  Typical.

But a wishlist, huh?  Gosh, my Christmas wish is obvious.  Anyone who knows me wouldn't even ask the question.  The answer is there, before the words are asked.  Just spend a day with my family, actually an hour or two with us, and it is answered in kids' endurance and regimen.  It is answered in the daily struggle with what's normal and what's not because of CF.  And it is answered in my heartache.

All I want for Christmas is a cure.  A cure.

A CURE.

My head is pretty fuzzy this morning, but I awake to realize that none of our nebulizers had been sterilized last night.  32 stupid plastic pieces my boys' breathing relies on.  EVERY DAY.  I am frustrated that I can't ever truly rest my weary head.  I can't ignore that task.  Even if I am exhausted.   Most days I can barely keep up.

CF doesn't care about the nebs not being sterile.  Or an important meeting.  Or a busy day.  It's always present.  Always in the way.  It's a matter of maneuvering the best path each day.  And on top of it, dealing with, well, everything else that comes along with life.
This could be perceived as an annoying rant.  But, CF isn't about me.  I am not ranting out of selfishness.  I am ranting about much more than that.  It's about my kids who are fighters.  I am just the bystander in awe of their strength and their will.  But it *is* about the quality of life for them and for our entire family.

Yesterday, as we did evening treatments, Michael picks up a stuffed animal that he had found around the house.  Though he doesn't have a particular attachment to it, I watch him as he pretends to strap it into a vest and mask.  "Oh oh, Mommy, he has 20 more minutes..."  Then he continues, "Ah ahhh, Mommy," as he wags his finger in my face, "he forgot his sprinkles."  And then he motions as though he is delivering pills to the the furry animal.  The he hugs and cuddles it, "My baby."  He rocks it.  Outside, I smile at Michael and laugh with him that "Uh oh, he better take his medicine" and commending Michael for doing such a great job caring for his little baby.  But on the inside, my heart hurts.

It is one time that that I can see with crystal clarity that our normal is heartbreakingly NOT NORMAL.

Late yesterday, as we drive to get the boys' haircuts, Christmas music is pouring through our car.  Michael sweetly says over the melody, "Mommy, can I be you when I grow up?"

I am stunned.  I am almost unable to get a response out.  I am clearing my voice through the first words of my retort, "What?!  What do you mean?  Why do you want to be like me?"  I am expecting a contemplative answer, because that's just the kind of kid Michael is.

"I just want to be you when I grow up."  Simple.

I start crying.  A complete torrential downpour of tears.  It's the nicest compliment my kids can give me.  How sweet.  How wonderful.  And then the terror sets in...  seriously, I can never let my kids be as neurotic as me!  But what a truly special, thoughtful gift of words.  I am laughing and crying as Michael's little face shows confusion directed toward me in the rearview mirror.  "Mommy, why you cry?  Are you sad?  Why you sad?  It's okay, Mommy.  No cry, Mommy."  He continues to console me.

Although, I really want that cure this Christmas, rumor has it that I might have to wait a few years.  Possibly even a decade, but it's not that far off, at least that's what the experts say.  And I really believe that some Christmas, I will in fact get that wish.

Instead, this year, I will simply take my son's love and adoration and be thankful for all that I have.  EVERY DAY.

Oh, and if you happen to see Santa or write to him this year, would you mind putting in a good word for that cure?