Monday, November 19, 2012

Bus Stop

The dog days of summer turn into the the back-to-school frenzy that all American families know all too well.  We scramble for the right supplies.  We juggle new routines.  We read books that ready the boys for the school days ahead.

As we gear up for school we discuss manners and using polite words.  Sometimes, boys will be boys, and 'polite' isn't always part of the vernacular.

My angst is considerable.  Michael is starting Kindergarten and I have become a disheveled ball of frayed nerves.  There is no start to the ball and no end.  Much like a string of Christmas lights that has been buried at the bottom of a box for 11 months.  You look and look but there is no outlet anywhere or any sign of a useful place to start.  The more you shift the cords and run your thumb along to find a beginning or an end, you get huffy and frustrated.  You decide to drop the damn thing back in the box and move on to other decorations.  My emotions are a tangled mess.  I don't even want to deal.

I remember thinking how far off it would be before Michael was walking, talking, and doing this own thing.  Now he asks super thoughtful questions, artfully negotiates, and can play a mean game of chess.

Yes.  The time has come.

Soon he will be getting on a big yellow school bus and for the first time ever I have to trust that he has the skills to go into the big wide world...  well, to go to Kindergarten anyway.

The planning for him just to go to school is considerable since he has special medical needs from his Cystic Fibrosis.  It is a delicate process of preparation and discussion with the school administration and the school nurse where Michael will be attending.  My brain takes slow, nervous pauses as I have the conversations with the school nurse and staff.  For those parents with 'special needs kids' whatever those needs might be, you know that the words you choose to describe your child's diagnosis, care, and your approach can incite a broad range of reactions -- from sympathy and pity all the way to 'get in line...  every kid has special needs today'.  I have no idea how to prepare for what the school's reaction might be.  I choose my words thoughtfully like "just a different routine" and "we normalize things" but also emphasize serious messages like "potential hospitalizations" and "critical medicines just to eat".

From the instant I spoke with the elementary school nurse 8 months ago, I was put at ease that she is someone who 'gets it'.  She is thoughtful in her listening and her planning for Michael's arrival in the fall.  Before school even wraps up in the spring, the nurse decides to float a preliminary 'heads up' to all staff members about Michael and what Cystic Fibrosis is for the upcoming school year.  She figures there's no harm in early education for the staff at the school about CF.


In the summer, I also speak with the school district's transportation team to understand where Michael's bus stop will be located.  Michael's morning routine is going to be a challenge.  I know lots of good ol' all American families who struggle with getting any kid out the door on time...  With two kids with Cystic Fibrosis, now add on another hour 45 minutes for morning treatments among the typical mix of breakfast complaints, fashion arguments, lunch box packing, and sock-and-shoe-search-and-rescues.  The director of transportation assures me that he will take a look at the bus routes and the timing closely.  He is confident that the bus stop is either in front of our house our one house over.  And we are likely toward the end of the route anyway so Michael won't kill his morning riding a bus along 10 more stops before school.

SIGH OF RELIEF.  Things are actually shaping up.

Also, in the late summer weeks, I tackle writing Michael's 504 Plan to attend school.  A 504 Plan is a written plan that supports children with medical needs in public schools and helps these children to fully participate to every possible extent.  It often lists accommodations related to the child’s disability or illness that are required so that the child may participate in the general classroom setting and educational programs.  504 Plans are imperative for children with CF.  They are a tool used to educate teachers, administration and staff about specific issues like hand-washing, illness at school, unlimited bathroom use (because of digestive issues), dosing medication at school to eat or if inhalers are needed to name a few.

For any family, back to school paperwork is daunting.  Generally a massive stack of different colored forms, reminders and informational pamphlets.  And for families creating 504 plans, you can think about lopping on a an inch thick worth of paperwork onto the pile. 

But I am pleasantly surprised that when the rubber meets the road, writing Michael's official 504 care plan is relatively painless because we have great support with the school nurse.  But I'm not gonna lie... it still is a TON of extra work.  It is a fine orchestration on my part of getting the CF Care Team's formal letter with Michael's needs, ensuring forms are signed and a reviewing of all of Michael's needs thoroughly.

Does this form need to be signed?...  Do I need to worry about this?...  What about if he is hospitalized, did I include info. about extended absences?...  Oh, and I have to fax this one to the CF Team in New York...  I am mentally fatigued.

I spend HOURS reading and reviewing everything.  It's a fine line of providing too much detail which might overwhelm school staff against ensuring that Michael's needs are met.  But in the final days before school we have completed all forms and the nurse and I are in agreement about everything.  Michael's CF Care Team has completed everything from their side...  all i's are dotted and t's are crossed.  All the signatures are penned.

Once we are all set, I don't quite hold my breath.  And sure glad I don't because in typical fashion, I receive a letter from the School District Transportation Department.  I open the form letter that breaks the news Michael's bus stop will actually be instead 10 houses down the street, which on our street is a looong walk with no sidewalks.  I give a long deep sigh.  GREAT.  Our mornings are going to be a disaster.  I should just accept that I will be driving him to school most days since he will be late.

The ink is barely dry on the final permission forms for Michael's medical needs when the nurse decides in the last  days before school starts that she will do a presentation on Cystic Fibrosis to the school staff and administration.  She wants them to understand that CF is a big deal.  Handwashing is a big deal.  Any symptoms they might see from Michael is a big deal.  I don't know quite how I feel about this...  it might be weird that everyone knows everything to do with Michael's CF.  Will the adults think differently of him?  Will they treat him differently?  The flutter of concern halts when I initially answer my own question...  of course they will treat him differently.  Duh.  Isn't that the point of a 504 Plan?!  And it strikes me with shot of sadness that, yes, he will be treated differently.  Whether the School Nurse does an informative presentation or not.  He is different.

And then I also remind myself that our family has always towed the line of awareness is the key to understanding (and finding a cure).  When I am done wrestling with my inner-mom struggle, I quickly land again in the place of...


She is on a mission to do all she can for Michael.  And knowledgeable grown-ups are part of that formula.  After the last conversation with the nurse before school begins, my phone rings (exasperated sigh) again.  It's the Director of Transportation wanting to follow up with me.  He apologizes that we received a notice with Michael's bus stop down the street...  in error.  He "certainly didn't forget about us".  He states that there is a correction for Michael's bus stop and that the bus will pick him up in front of our house.  Finally, I am completely relieved.  I feel my shoulders release and fall a little.  It's the little things that can life easier make a family struggling with chronic illness.  The warm tears well up in my eyes.  OH THANK YOU GOD!

I go to sleep knowing that in a few short days, I will put my son on the bus and let him head out into the world.  And all the better that he will be on time.

The remaining few days preparing for the start of school are typically filled with ranting lectures from Michael directed to Dylan about how he is going to big kid school.  Michael bats his hands in the air to mark the importance, "Yeah, Dylan, because I am a big boy and I am starting Kindergarten.  You still go to preschool."  Michael's hands add colorful punctuation in the air along with his condescending tone.  His eyeroll emphasizes the word "preschool".  There are continued gentle reminders about feelings and what it is like to have hurt feelings and to have a good heart.

Snap, snap, snap.  I take pictures of the boys on Michael's first day.  Our front porch in New Jersey has become our favorite spot for pictures.  Nondescript and simple.  I can capture the important things.  The excitement in their eyes.  The adoration between brothers.  I just can't quite capture the flutter in my stomach.  Or the pounding of my heart.  I have him hold up a sign commemorating his first day of Kindergarten.  The sign shares the date and explains he wants to be a "paleontologist" when he grows up.  His word, not mine.

Michael is wearing his favorite orange robot shirt.  His smile is glowing.  Not knowing which side of the street the bus will pick up on, we wait anxiously on the walk of our front stoop.  Our hands are intertwined as my hand clutches his little hand.  He grasps mine right back.

As the CF story goes, in the 1950's there were many children whose battle ended very early, often before even attending elementary school.  The CF Foundation was started in the 1950's by parents who wanted more for their children.  Who wanted a better life.  There were many medical advancements still undiscovered.  I think of how blessed we are.  I think of all those families, those pioneers in the CF history, who fought for this very thing.  I silently say a prayer of 'thanks' to them.  In this moment, I stand here holding Michael's hand, ready to put him on the bus for his first day of Kindergarten.  We are here because of those amazing fighters and those visionary parents so many years ago.  I am humbled.  I am grateful.  I am proud.

I look down at our hands.  And pause.  I love this little boy and am so proud of his courage.  Every day.  Especially on days like this. Especially when being different can be hard.

I realize that down the street the kids are waiting for the bus across the street.  So, Michael and I walk across the street to continue waiting patiently.

After a few more minutes, the bus roars up and comes to a jarring stop.  Michael lets go of my hand and climbs up.  He turns around smiles brightly and waves, "Bye Mom!"  My voice whimpers back, "Bye honey."  Michael disappears into the bus.  The nice bus driver waves me back across the street.  I stand in our front yard and wave all smiles to send Michael off on his first day.

The wheels to the massive school bus start to turn and the roar emerges again as the bus accelerates and starts to head off.  I swiftly turn my face away and cannot watch as it disappears around the bend.  I whisk my hand to my eyes catch my rush of tears.  For a brief second, I start sobbing.  I feel my insides lurch with every rapid sob.  Then, slowly, I draw air into my lungs and force myself to stop.

As I exhale with my eyes close, I envision that bolt of a confident smile he gave me.  It gives me so much comfort.  For him, it's simple.  It's a new adventure awaiting and he is thrilled.  For me it's not so simple.  There is a whole lotta love intertwined with heartache in this moment.  We begin our next chapter on this piece of pavement.  At this bus stop.

It is this spot that would continue to mark our days as some of the most special and simplest of times together.  The bus stop.  In this case, the stop is really in fact the start...

Friday, November 16, 2012


In the deep of summer and its unrelenting excessive heat, once again our air-conditioning is caput.  Our landlord is great about getting an A/C company out to remedy the problem as soon as possible, but time marches slowly over the days of sweltering heat.  I wonder if time stands still the heat is so unbearable.  During those days, our home often would reach temperatures that exceed the heat outside.  One day, the boys are at camp all morning and then we spend all afternoon at a friend's pool.  We are there until the evening hours and the boys are so drained from the heat, they both pass out in the first minute of being in an air-conditioned car.  I would come to refer to our house as "the inferno" during these few days.  Case in point, that night at 11 o'clock the house would still hover around 86 degrees.

We get through three days and nights of the discomfort and on the evening of the fourth day, our house is starting to finally cool off.  82 degrees never felt so good.

Nine o'clock and both boys are finally in bed and the house is a chilly 73 degrees.    I hang up the telephone with my brother for a mid-week catch up, nicety, 'how are you?' talk, when something catches my eye on Pinterest.

First, an admission.  I am a Pinterest junkie.  I pin and repin and well repin.  The “what if’s…  the “some day” home…  the idyllic childhood crafts that the perfect mommy is doing with her kids…  The superfood recipes and the junk food game-day recipes…  a treasure trove of the “I wish’s” and the “If I were a better mom” ideas.  Or the “Only if I had time” ideas.  Pinterest in itself is an addiction… it oozes visual delights and reflects on self-improvement.  It is all things that busy moms need and love.  A virtual bulletin board of the best and the brightest.  But let’s be honest here, my life boards are piles of magazine cut-outs, notes from the schools, junk mail that needs to be shredded and scribbled unchecked to-do lists.

On this occasion, it's not the multimillion dollar interior of a great room that captivates me or an adorable artsy craft that seems so simple and a great idea in concept...  instead it's a "The 20 Things No One Ever Told Us About Raising a Boy:  And Every One Is True".  I am curious and instantly am taken.  Okay, people if you know me, I am not an "email forward" type of person.  I am not a chainletter person.  I once in a great while read the political comics of a weekly news magazine, but I rarely believe sharing around those adorable puppies or that story supposedly from so-and-so's cousin.  I believe that an article a “Top List" of anything can not sum it up.  At least not for me.

I am intrigued and compelled to click through.  The first one on the list that I click through to is "The Penis Comparisons Start Early".  I start laughing thinking of my boys.  And all products of the Y gene for that matter.  After I read the comical, albeit true, blurb I continue to click through the list...   

  • "Star Wars Takes Over Earlier Than You Expect" (You can say that again, check out my thoughts on Star Wars here)...
  • "Matchbox cars and trucks will multiply on their own in your home" (yep, step on ‘em every day)...
  • "You Will Revise Your Wedding Fantasies -- And Be Fine With It" (my greatest fear come true)... 
  • "Rough housing is Innate...  it's normal and experts say it's healthy" (I break up brawls daily in my house)...
  • "Boys Love Their Moms" (I smile.  That really says it.)

Faint tears well in my eyes.  I feel my self giggle as I lift my tired body up the stairs to bed.  As I crawl in, I begin telling my husband about the list and we laugh at the humor.  “It’s all so real…  So true,” I tell him.  “You must read this article.”

The next morning my bed feels icy.  I love it.  I stretch and roll over.  I can barely lift my dull head.  I don't know if body is in recovery mode after the marathon of heat, but I linger in bed for some more time.  The rushing of water in the shower tells me that my husband is getting ready to leave for work.  I hear the boys playing downstairs.  Laughter and hysterical shouting fills the house on the bright summer morning.  I want to stay in my ice box bed all day.  The cold sheets encircling me and my lazy head sinks down in my pillow.

I stretch and roll out and greet my husband.  He tells me that I should really go check on the boys.  I feel like telling him that he can.  But instead I slowly drag myself up and then fling my feet over the side of the bed and drop my weight onto my feet.  I walk halfway down the stairs and peer down to see the boys wrestling on the floor of the foyer.  I smirk and remember the article...  "Roughhousing is normal and even healthy."

I am snapped into a new dimension of boy insanity, as the most unbelievable event happens right before my eyes.  The boys don't even realize that I am watching.  Dylan stands up before I can even comprehend what's going on as he hurls a fluffy, white object at Michael's head.  I rub my eyes, still trying to wake up and be sure that I am seeing the scene accurately.  The object smacks Michael squarely in the face and explodes.  LITERALLY, EXPLODES into a million tiny pieces.  I can't really make out what it is, but the large object gives the appearance that it's a sack of flour dulling slamming into Michael’s face and raining tiny white particles everywhere.

Next, I see the remaining object that wasn't decimated sink from Michael's face to the ground with an exhausted thud.  I react immediately since Dylan threw it with such menace, and the residual mess is now undeniably decorating my foyer.  As I run down the stairs, Dylan laughs his mischievous snickers.  Michael is frozen in his place completely stunned.  His expression still in a state shock.  He doesn't know whether to laugh at his brother's antics or to start wailing out of anger.  I begin yelling as I approach and Dylan throws his hands over his ears.

Roughhousing, yeah right.

Matters only get worse when I identify the weapon of mass destruction.  A diaper.  A fully-loaded pee-soaked diaper that Dylan had been wearing overnight.  No mistake.  Size 6.  Heavy in mass and large enough to hit a target like his brother.  I don’t know if this kid is insane or brilliant.

The particles that are now all over Michael's hair, his shirt, the wood floor, our throw rugs and frankly the entire foyer are the gel beads of a diaper.  These weird spongy gel beads absorb the urine and its yuk smell.  You might never know they are present in the high-tech diapers of today, unless, frankly, your three year old lobs one at his brother.

My GAG reflex is emerging.

Only my boys.  And, to think, for once I was going to let the roughhousing go...  Normal and healthy...  I snort at the thought.

Dylan is now (clearly) pants-less, Michael is coming to, and my husband is late for work.  I am in a fit yelling in tongues.  Somehow, I am able to communicate to my husband that Michael needs to be bathed and Michael heads upstairs to get cleaned up.

Dylan is sent to the "thinking spot", which is our version of time out.  How politically correct of us.  I feel myself sneer as I send him to the “thinking spot”.  The term, thinking spot, doesn't exactly carry the "heavy-hitter" weight to underscore how truly upset I am.  Something like "the drama dungeon" or the "smarty pants asylum"...  anything else might have more zest or umph where they can wait out their issues.

I refocus.  This is not just a mess, it is downright UNSANITARY.  GAG again.  I wonder where my mom HAZMAT suit is at this moment as I envision a urine cloud over the area that I am trying to conceive of cleaning.  Might it take a mushroom cloud appearance?  Or more of a stealth odorless, tasteless WMD that we are dealing with?  I had no idea years ago that moms also earn a degree in chemical or biological weaponry.

I try to vacuum the gel beads with the hose of the vacuum.  Only half of the beads give way and are swept up.  The other half remains on the floor further provoking me after a pass with the vacuum attachment.  The gel material is sticky enough that it doesn’t immediately pull into the suction of the vacuum.   I concede and try the vacuum in the upright position.  None of the gel beads move.  I try wiping it with wet paper towels and the gel beads bounce around in all different directions taunting me.  They pull against the paper towel and do not cooperatively sweep up or disappear.  Finally, I try sweeping these suckers up with a broom and pan.  They bounce, stick, and pull with traction against the flow of the bristles of the broom.  I am livid.  HOW THE HELL AM I GOING TO CLEAN THIS?!

I excuse Dylan from the thinking spot and direct him to come and help me clean the mess.  Like a lengthy question on a final exam, I mentally answer out my answer the best of my options.  Dylan stands there and stares at me as I try to gather my thoughts on the multiple choice Mommy exam.

“If you were a mom, and your kid obliterated a diaper, how would you clean the mess?”
A)   A vacuum that only works moderately
B)   Wet papertowels which does a mediocre job of catching the loose material
C)   A Broom that spreads the mess around
D)   Leave the house running and screaming down the street
E)    D is not an option.

With few options, I grab the vacuum and tediously begin cleaning with the attachment.  I have to pass and repass the same spot a couple times to clean up the disgusting gel beads.  I make Dylan help me with the clean up.  My husband has bathed Michael and heads out the door.  As he walks toward the door, frankly with freedom in view (lucky guy!), Dylan is frantic and upset.  He begins begging Daddy to stay.  After quite a few hugs, high fives, fist pumps, blowing kisses, waves, Dylan runs out the door after my husband.  I see his bare bottom head out the back sliding glass door, his little feet moving frantically and his voice wailing.  I run out after him and my husband sees pants-less Dylan running toward the car.

Daddy scoops him up and brings him back into the house. We get Dylan in a pair of underwear so he is no longer baring it all.   Now on the third try, my husband successfully makes it out the door.  The boys and I sit on the front porch and wave at him as we do every morning as his car pulls out of the drive way.  The boys shout their send-offs to Daddy for the day.  “Daddy, tonight I will read you THREE stories!” Dylan yells.  Michael projects, “I love you, I will tell you stories tonight, Daddy.”

Undeniably, there is the truth staring every parent of boys in the face...  the things that occur when you raise boys.  The ones you wish you knew before you even considered having kids.  The ones you wish you were prepared for.  And the ones that there is no conceivable way you CAN prepare for.  To say the least, I would’ve never believed that one morning I’d watch my own toddler son squarely nail his brother in the face with a soppy diaper.  To raise boys takes will, guts and tenacity.  To raise my boys, well that’s a whole other level. 

And off we go.  Another day at the races and I haven’t even had my cup of coffee.