"... And Love"

I have never wished that I didn't have CF.

In fact, if given one wish, I've always said that I would wish that my younger brother never had the disease.

Then why do I conceal my health condition from the majority of people that I know.  Well, let's examine this question...

First, the disease itself is very easy to hide from those around me.  Why?  Three factors:

  1. The outward physical characteristics of my condition.  I'm a thin guy.  Not as thin as I used to be, but still underweight.  So when asked about my weight, it's easy enough just to say that I'm a picky eater.  Which has always been true.
  2. For the most part I've kept myself in good physical condition.  I definitely could exercise more, especially cardiovascular activities.  (It was embarrassing getting winded so quickly while running around in the front yard with C, W and S the other week).  But I keep up with all of my meds, don't smoke or take drugs, go on regular walks, stay on my feet almost all day at work and take the boys on numerous physical excursions.  Because of this, I don't really have too many coughing spells or shortness of breath experiences because I keep myself healthy. 
  3. My scars are not visible.  This reason is similar to reason number one.  I have three scars from surgeries on my abdomen.  As long as I stay covered up, no one can see my scars.  To the whole world, I look like a short, slightly balding father of two great children and husband to a wonderful wife. 
Second, I believe only the people I consider the closest to me should know.  I don't know if this has been the best course of action, but I've only really let a few people into my life.  I don't know if I wouldn't have taken the same route if I didn't have CF.  I just really don't have time for drama, or find the need to invite unnecessary drama (is there such thing as necessary drama?) into my life. Therefore, I've just tried to keep things simple.

Third, I suppose I am afraid of the unknown.  I'm afraid how people would react.  I'm afraid they would think different of me, both for the better and the worse.  I'm not the type of person to seek or crave undue attention or clamor for the spotlight (cliche alert!).  I'm not looking for a pity party.  

I've never hated CF.  Sure, just saying the words cystic fibrosis can make me shudder a bit. (You'll notice that up until the last sentence, I've only referenced the disease as CF)  But I've never hated it. Despite how it's changed the lives of those the most close to me.  Despite how it will impact and affect W and S's lives.  But the main difference between what W and S will experience with my health as opposed to everyone else who are the closest to me is that they are the only two people who don't have CF that will go their entire lives knowing that I have CF.  

I've never hated CF despite the financial and emotional costs it has placed on my parents and C. There's no way I could ever thank my parents and C enough for what they have done for me.  For what they continue to do for me.  For believing in what I could become.  For not treating me differently.  For loving me.  

And I sit here as I type this blog post thinking how much of a jerk I must sound like for not hating something that has caused the people closest to me physical and emotional pain.  But I can't hate "it." Because "it" is me.  Even though I've sworn that CF will not kill me, I can't distance myself from the disease.

I think what it has offered to the people closest to me is an increase in their capacity to love.  And I think that's a good thing.  This world not only needs more love, but it needs greater love.  Whether I've entered these people's worlds by choice or chance, I am humbled by their sacrifice, dedication and love.  I hope I have made them proud.

As I try to find the right words to end this post, a song that is dear to C just played though my headphones.  I think a couple lines will properly wrap things up... "I hope if everybody runs, you choose to stay... I hope that you fall in love and it hurts so bad... the only way you can know if you give it all you had... I hope you don't suffer, but take the pain..."

A

What I Will Take From Summer Vacation

I returned to work a couple Thursdays ago after having the last 11 weeks off.  This was the fifth summer I was "dad."  While many events occurred over this time, I present before you a list of items that I will take from summer vacation.


  • It's Hard Being 2 Years Old- I know a lot of words now, but why can't I use words to tell how I feel, especially when I'm sad, mad or hurt???  I LOVE playing outside, but HATE coming inside when mommy and daddy tell me too... W gets to go to summer camp at school, but I have to get back in the car with daddy???  Diaper changes are the worst. Why can't I go potty like W yet?... Why do I always give my toys to W, but he hardly ever gives any to me??? Wait, I can ride a roller coaster now, but I still have to be buckled into a carseat???
          Hang in there, S.  You're growing and learning so much, so quickly, that you'll be older and                 bigger sooner than you realize.  This world needs your heart more than you'll ever know.
  • It's Hard Being 4 Years Old- At the beginning of summer, things were different.  Nani isn't coming over, Grandma isn't coming over, Daddy's at home.  What's going on???  People are asking more things of me now- school, potty, cleaning up after myself.  I feel like I always need to answer them, but I don't know if what I'm saying is what they want to hear.  I'm trying my best... Life was good until S came around.  But I'm trying to be nicer to him.  Using my words to express how I feel about him is difficult, but I'm getting better... Why am I already worrying about kindergarten??? I've just started my last year of preschool, but kindergarten is already on my (ever-busy) mind...
          W, keep enjoying being a kid.  Your mom and I have often commented that you're wiser than               your age.  And while this is true, you still haven't stopped enjoying the moment.  The world is             going to need your mind and ingenuity.  For now, continue enjoying being four.
  • Addie Might Be Getting Older, But She Hasn't Yet Lost Her Loyalty to Her Family- Every night Addie sits next to me while I do my vest.  I never have to invite her.  She just follows me down into the basement and jumps up on the couch to lay next to me while I sit and shake for 30 minutes.  Man's best friend.  When C is not feeling well, or is feeling sad, or frustrated or like things are not breaking her way, Addie stays by her side until she knows her work is done. Man's best friend.  When it's time for W and S to go to bed, Addie comes into W's room with us for story time, and then comes into S's room while I give him his bottle and put him to bed. She'll lay on the floor or hop up onto his bed and stay with me until we both know S is asleep. Man's best friend.  She's gone from being the center of our attention to third on the depth chart in less than five years.  And this is weird saying it about a dog, but she's handled it extremely well.  She hasn't gotten aggressive, whiney or destructive.  It's as if she believes her role is to watch over every single member of our family.  And I've told her over and over that she doesn't need to do it, she can just relax and enjoy being a dog.  But she doesn't listen.  Man's best friend, indeed.
  • I Am In Love With My Wife- This really shouldn't be that much of a revelation.  I have the world's greatest wife.  I think that the best thing I can say about her and our relationship right now is that not only do I love her, but I am still in love with her.  Like, actively in love with her. C wrote recently in her blog about our "first fight(?)" and how she thought "it made us closer. Something I didn't realize was possible before the argument- I just assumed we were as close as could be."  This is what I mean... we're not settling for the ho-hum, day-in-day-out marriage. I think we've regained some curiosity for each other that had grown rather dormant over ten years and two children.  It hasn't been easy.  C mentions in that post of our "long, emotional, honest, raw conversation."  That's exactly what it was! And it was a conversation that needed to occur.  And what sprung forth from that conversation was the rekindling of an active and evolving love.  (And W and S are the absolute best children two parents could ever wish for) 
  • "You Know a Summer Was Great When You're Sad That It Is Over"- Returning to work after summer vacation is always difficult for me.  This year was probably the most difficult time I had returning to another year of teaching.  I complain about W and S often.  And after I do, I feel bad about it.  And then I complain about them again.  But there I was the morning before I had to return to work crying because I was thinking about how much I was going to miss the boys.  And there I was crying again the morning of my first day of work.  When I told C about this, she said something that was absolutely spot on- "you know a summer was great when you're sad that is was over"  (she would later express these sentiments to me again in a very sweet card).  This was a great summer.  The boys are getting older and a little more independent each day.  And when they are getting along with each other, it's the sweetest thing to witness.  And I am extremely fortunate to be able to participate as much as I can in their development.  When C and I first told people that she was pregnant with W, everyone told us to cherish this time in his life because it goes by quickly.  I wish they were wrong.
          A

What I Will Miss From Summer Vacation

I return to work on Thursday after having the last 11 weeks off.  This was the fifth summer I was "dad."  While many events occurred over this time, I present before you a list of items that I will miss from summer vacation.

Disclaimer #1:  Even though some items/events appear on this list, it does not mean that these items/events will cease just because my vacation is over.  The duration, frequency and dates of these events as I witness or partake in them will change.

Disclaimer #2:  These events are not ranked in any particular order other than when they popped into my mind.


  • The Boys Waking Up in the Morning- This is by far the time of the day when W and S are at their cutest.  S is usually the first to wake up.  Oftentimes C and I hear S singing in his bed through the monitor.  He songs of choice are "Go, Cubs, Go," "Tomorrow," "Who Let the Dogs Out?" and "Castle on the Hill."  These few minutes are beyond adorable.  C and I always take a few seconds to figure out what S is singing, and when we are able to interpret what he's crooning, we both look at each other and smile.  W doesn't necessarily make it as well known that he's awake like his brother does.  Oh, occasionally we hear strange noises from his room or his feet kicking the wall.  What he's been doing lately, though, is, once he knows I'm outside his door, open his bedroom door about 1/5 of the way and throw his owl buddies out of his room one at a time.  Every now and then Pete the Cat comes flying out towards me.  Once he comes into our room, W has recently been greeting C and I with hugs.  How is that not the best way to start the day??? (Well, there is another way.  See a previous post)  Now that I'm about to go back to work, I have to leave the house between 6:30-6:45.  That means that most days at least one of the boys will still be asleep when I leave.  Welcoming in the new day with middle schoolers isn't nearly as pleasant as doing so with W and S.
  • Our Bedtime Routine- Ok, I'll still be around for 99.99% of these.  But there are seven nights during the school year when I usually miss putting the boys to bed.  W hasn't lost his interest in books and S likes stories, even though he doesn't have quite the attention span to sit and listen to a book from start to finish.  But when they cuddle up next to C and I when we begin reading, it is the cutest thing ever.  As we read, W will ask his thousand questions and S, even if he's already moved to the other side of the room, will randomly repeat, with emphasis, a word either C or I have just read.  And S being C's toothbrush helper... and W saying good night and hugging me... and S saying good night to W, then to C and giving her a hug... it might be a struggle to get them into their jammies sometimes, but when it's time to actually go to sleep, no matter how crappy the day might have been, everything at this moment is perfect.
  • Top Secret Missions- These started years ago, but I don't quite remember exactly how.  The gist of it is the boys and I going on a Starbucks run with the occasional Dunkin Donuts stop thrown in there as well.  As for why it's "top secret" I don't exactly remember why.  I must have snuck out of the house one morning with W to surprise C with Starbucks (that sounds like a thing that I would do).  Over the last few summers, Top Secret Missions have been executed on Friday mornings since C usually works from home those days.  The boys always want to help bring something inside the house once we successfully complete our mission, so W brings in the bag of bagels and S brings in the four straws.  Now that school is back in session, our Summer Friday Top Secret Missions have come to an end.  I guess we'll still have Labor Day and an occasional Saturday morning mission.  But the end of Top Secret Mission season is a bit melancholic.  
  • Garbage Day- Speaking of Fridays... our garbage pickup day is Friday.  As I think I have mentioned in previous posts, and I know for sure C has mentioned it, our boys are obsessed with all things garbage.  So it goes without saying that Friday is their favorite day of the week (Fridays are also Pizza Fridays!!!).  The boys wait outside on the driveway with great anticipation as Willie the Recycling Man drives his truck in our direction.  They are armed with Gatorade and chips as Willie approaches.  Once he gets in front of our house, Willie dumps all of the recycling into the back of his truck just for the boys to see and then empties our recycling can.  At this point, I have to nudge the boys a bit to go give their hero his treats.  W then brings up the empty recycling can while S runs back into the garage out of shyness.  Not only will I miss this weekly event, Willie is moving to Texas.  Who knows if our new recycling man will be this accommodating and entertaining to the boys than Willie has been?
  • McDonald's Monday- This is more of a recent ritual.  I think it began during the previous school year when Nani picked W up from school and they would stop at McDonald's to pick up lunch.  But over the summer this event was officially dubbed McDonald's Monday.  In reality, I'm going to miss this because I miss out on McDonald's!  Plus, if the boys have McDonald's on Monday, that means they can't have it on Saturday and Sunday, which means I can't have it Saturday or Sunday!!!  My para-pro and I started Filet O'Fish Friday at school during Lent and continued it through the end of the school year.  Hopefully we keep that up.
  • Text Messages from C- I mentioned in my first post (Inblogeral) that C's text messages have been the highlight of my summer days.  They get me through the days with W and S.  Well, now that I'll be back at work, I won't always have the time to reply.  And worse, she also emails me, and I hardly ever have the time to reply.  C- PLEASE keep texting and emailing me!!!!! Even though I might not always reply, they continue to help get me through school days.  And God knows I need as much help to get through those days as possible!
  • W and S Singing in the Backseat- I am a radio flipper.  At least when I'm not listening to sports talk.  So when I find a song that I like, I leave it on.  Because of this, W and S have learned some songs this summer.  Not just songs that I like, but songs that C likes too.  So whenever I hear a song that we've listened to alot, I'll take a peak into the backseat to see if the boys recognize the song, and if so, check to see if they've started singing it.  Most times though, they'll beat me to it.  So, when "Castle on the Hill" comes on, usually S, sometimes W, will yell, "Daddy's song!"  When "My House" or "Despacito" starts playing, one of the boys yells, "Mommy's song!"  And when they start singing, it's the cutest thing ever.  The funniest thing ever was when S's song, "I Can Make Your Hands Clap," came on, and out of the blue S just yelled, "HANDS CLAP!!!!!"  at the appropriate time and started clapping.  Hilarious!
  • Doing My Vest During the Day- It didn't get to happen all that often, except during vacation, but man do I love it when I get the opportunity to do my vest during the day.  I usually had to wait until S napped, but with him napping less and less often, finding time during the morning or afternoon to do my vest became more difficult.  The best though was a 2-3 day stretch a couple weeks ago where I was able to do my vest while S was still awake.  He came down to the basement with me and sat right next to me for a good portion of the time.  S is a very sweet little boy.  I hope he never loses his kind heart.
  • Cubs Day Games- So ever since the Cubs won the World Series last year, I kind of realized that I don't need to stay up late to watch all of a Cubs night game (ugh... except for the Sunday night game against the Yankees that went 17 or 18 innings.  I think I went to bed around 1:00 am that night.  Or I guess morning...).  But I do try to catch most, if not all, of their day games. They're my team.  They've always been my team.  They will always be my team.  Up until last year, my teaching schedule was such that I had off from basically 12:30 until the end of the day (2:00).  So, I could put the game on the radio and listen until I was allowed to go home.  But, when my schedule changed last year, I now teach from 12:30-2:00.  So no Cubs game on the radio.  Don't these people know I bleed Cubbie blue!!!
  • Lunch Dates with C- These are such a welcome relief during the summer.  When the boys tag along, they're still good.  But when it's just C and I, they're sooooo much better.  No one (cough, cough, W!) climbing, tugging or laying on C.  No multiple trips to the "you-know-what."  No loading/unloading children to and from the car.  Cheaper meals.  Quieter atmosphere.  Adult conversations.  From anywhere between 45-60 minutes, it's like we're C and A again, not solely Mommy and Daddy.  Despite bills, jobs, and responsibilities in general, it's good to be an adult every now and then.
  • Vacations- OK, in this case, I intentionally saved the best for last.  Belgium, Amsterdam and Paris.  The east coast and Chesapeake Bay area.  I could write pages and pages about our trips, but I'll keep it simple.  C and I were long overdue for a no-kids vacation.  And what better place for this to occur than summertime in Europe?  A big "thank you" is in order for Nani, Papa and Grandma for watching W and S while we were on "holiday." And C and I both enjoy, and believe it's incredibly important, to show W and S as much of the world as possible (except Europe.  For now.).  So family vacations are a must... even if we want to kill each other at various points of the excursions.
  • Everything From Yesterday's List (What I Will Not Miss From Summer Vacation)
    • Tantrums- Because the calm after the storm is very serene.  And this is the opportunity for W and S to learn from their mistakes.
    • Doors- Because I want the boys to learn than when life closes one door, it opens up another one.
    • Potty Walks- Because there will come a time when W and S don't want to hang out with me, let alone admit that they're related to me.  And Addie isn't getting any younger.
    • The Sun- No.  I still hate the sun.
    • S Getting into His Carseat- Because this little guy's desire for independence is admirable.  His ability to try and take risks (though sometimes unintentionally hilarious) is something to behold.
    • Ramen- Nah.  I still hate this too.
    • W Questioning Every Driving Decision I Make- Because his curiosity and inquisitive nature are going to take him very far in this world. I'm not quite sure where, but I know he's beginning his journey in the right place.
    • The Flight To/From Europe- Because I couldn't have the best summer ever if I never got there.
    • Weekends that Felt Like Weekdays- Because it displays and reinforces the unconditional love between a parent and child.
    • Fireworks Not on the Fourth of July- Damn!!!  OK, I guess not everything on the list because I still hate this too!
    • The Over-Worked, Under-Appreciated, Stressed-Out Mom Memes- Because moms are super-important.  Because I would not be where I am today without my mom.  And I sure as hell wouldn't be as happy as I am today without C, the mother of our children. And women live a difficult, double-standard laden life, that for pretty much all of humanity's time on earth, has been embarrassingly unfair to them.  
So there's why this was the best summer ever.  And despite how great this summer was, I know next summer can be even better.

A


What I Won't Miss from Summer Vacation

I return to work on Thursday after having the last 11 weeks off.  This was the fifth summer I was "dad."  While many events occurred over this time, I present before you a list of items that I will not miss from summer vacation.

Disclaimer #1:  Even though some items/events appear on this list, it does not mean that these items/events will cease just because my vacation is over.  The duration and frequency of these events as I witness or partake in them will lessen.

Disclaimer #2:  These events are not ranked in any particular order other than when they popped into my mind.


  • Tantrums- I'm not quite sure which one is worse: the 2 year old tantrum or the 4 year old tantrum.  In either event, the apparent uncontrollable rage exuded by both toddlers is a tsunami wrapped inside a hurricane wrapped inside a castrated Tyrannosaurus Rex.  My God, these can come out of nowhere!  And over the seemingly most mundane things.  I already wrote about W's tantrum on vacation over not getting Starbucks for breakfast.  Well, there were others.  Like... not wanting to change diaper/underwear/shorts that are soaked in pee... not being able to look in garbage cans... not being able to throw garbage away... being told to throw garbage away... not wanting your little younger brother to look at you... not wanting your younger brother to sit next to you... not wanting to take a bath... not wanting your hair combed... not getting the right juice... not getting the right cup... not bringing in the mail... not bringing in the packages... not being allowed to ring the doorbell to agitate the dog... C, feel free to add more!!!
  • Doors- I don't know what it is about bedroom doors that W and S find so intoxicating.  Is it the believed power they've discovered when disallowing their sibling from entering the room?  Is it the sound the door makes when it's closed, or the jiggling of the handle when trying to open it back up?  Are they just fascinated with wood?  Seriously, W and S will fight over whether the door should be open or closed.  And neither one sticks to one side of this argument.  One day W will say it has to be open, and the next he'll say it has to be closed.  And it's ALWAYS C and my bedroom door!  Go fight over your own damn doors!
  • Potty Walks- The joy of being a father and a dog owner.  Not that I ever truly enjoyed having to take Addie for a walk, but before C and I had kids, this was obviously a solo endeavor.  However, since W and S enjoy being outside so much, they have taken to tagging along on Addie's walks.  Here's the problem: there are four living creatures on this walk, which means four different objectives.  W: distance himself as far as possible from S; close all of the garbage cans; check out all of the mailboxes; memorize addresses; ask as many questions as humanly possible for the entire duration of the walk.  S:  lag a quarter mile behind dad; look down every sewer grate along the route; have dad carry his mini-Mercedes home. Addie: bark and go after every dog she sees; bark and go after every bicycle she sees; bark and go after every jogger she sees; bark and go after every kid she sees; sniff endlessly only to not relieve herself at that spot; stare at something even though nobody else is outside. Dad: get this walk over as quickly as possible!
  • The Sun- So, this is probably the agent of my frustrations during the potty walks.  Simply put, I HATE the sun!!! I burn easily, I get hives, I have to wear an SPF 500 and I sweat profusely.  If I had my way, I would destroy the sun.  Who needs that big star anyways???
  • S Getting into His Carseat- This summer, S has shown his independence by climbing into his carseat by himself.  Sounds great.  It saves me some energy.  However, it tries my patience incredibly.  It takes him FOREVER to get into his seat.  He likes to stand right in front of his carseat, turn around, and then point and name everything he sees.  And point and name everything that isn't actually out in the world in front of him.  Once he's finally sitting where he's supposed to, he doesn't want me to buckle his chest restraint on his carseat.  "Noooo!!!!! S do!" he'll scream.  Then the waiting game games begin anew until he says, "Daddy do!"
  • Ramen- I hate everything involved with this supposed food.  This is the only food that neither W nor S actually watch as it enters their mouths.  Consequently, the noodles end up all over the table, on their chairs, on their clothes, in their hair, behind their ears, down their pants and on the floor.  Have you ever tried cleaning wet Ramen noodles off of the floor??? It's too wet to sweep up.  It's too wet to use a towel because it will just smoosh up.  I can't even count on Addie to eat it all up because she's gotten sick of eating this crap too!  God I hate this food!
  • W Questioning Every Driving Decision I Make- Why are you in this lane?  Why are we stopped?  What's the name of this song?  Who sings this song?  How old is this song?  What are they doing over there?... just make a guess.  Why did you go this way?  Why are we slowing down?  Why aren't you going faster?  Why aren't you going slower?  Are you sure this is the way?  Why are we STOPPED!!??!!
  • The Flight To/From Europe- This was rough for a few reasons.  8-9 hours in the air.  Not being able to sleep there or back.  Not sitting next to C.  Not being able to find the bathroom in the dark.  
  • Weekends that Felt Like Weekdays- Alright guys... give me a damn break for awhile!  Your mother is right over there, for crying out loud!  Go hang out with her.  This isn't Monday. Or Tuesday.  Or Wednesday.  Or Thursday.  Or Friday.  It's the weekend.  Don't you want a break from me???  I mean, I've been the one who's given you the timeouts.  I've been the one who's told you to come inside.  I've been the one who's dragged you all over the various towns for various reasons.  I've taken away toys.  I've yelled at you guys.  Don't you hate me for all of these things???  I hate myself for doing them!
  • Fireworks Not on the Fourth of July- I am all for lighting off explosives to honor America's declared independence from Great Britain.  And if you're stupid enough to blow off a finger or two in the process, great!  But for the love of Abe Lincoln's beard (by cracky!) STOP LIGHTING OFF FIREWORKS THE REST OF THE YEAR!!!!  Stop lighting off fireworks on July 2nd.  Stop lighting off fireworks on July 3rd.  Stop lighting off fireworks on July 5th.  Stop lighting off fireworks on April 18th.  Stop it.  Stop it.  STOP IT!!!
  • The Over-Worked, Under-Appreciated, Stressed-Out Mom Memes- Just for the fact that there are a lot of dads who take care of the kids, try to keep the house clean, do the laundry, do the dishes, make breakfasts, make lunches, make dinners and the myriad little things to get their kids through the day feeling loved, appreciated and special.  
There you go.  A list of 11 things that I will not miss from summer vacation.  But the summer wasn't nearly as bad as I just made it out to be.  In fact, it was the best summer of my life...

Until next time,

A

My First CF-Specific Post

I saw this on Facebook this morning and gave it a read: Dealing With Awkward CF Situations. I don't always read the articles/blogs cff.org posts for a variety of reasons... I think that situation doesn't refer to me, I'm afraid what might be written behind the picture, I just don't have time...

But I decided to give this one a try because I was immediately able to place myself within that situation.  All of those situations (ok, not being referred to as "the one with the problems" though.  Maybe my parents are aware of situations like that but never told me.  Hmm... maybe I'll ask them).   It's the one thing I'm always fully conscience of since I've only told a handful of people that I have CF: how to deal with/cover/explain CF-related symptoms to people who do not know.  Challenging, yes, but not impossible.

Here are a few of the situations that have stuck with me throughout the years...


  • Being asked if I have a "smoker's cough."  Not too difficult to brush this one aside.  Sometimes just saying "nope" does the trick.  Other times I have to say that I just have a cold.
  • Being questioned about the scars on my stomach by co-workers.  A little trickier to maneuver around, and it did require a little bit of lying.  I told them that I was in a knife fight when I was younger.  Looking back on it now, I'm pretty sure they didn't believe me, but I guess it was good enough at the time.  Plus, I avoided answering any other follow-up questions.
  • The "seemingly never-ending coughing bouts."  I remember sitting in the auditorium during high school during a presentation when one struck.  I couldn't stop coughing.  And I was the only person coughing.  Being in such a big room made it seem like the coughing was so much louder.  I remember being so embarrased about how frequently I cough, yet too self-conscience to go out and get a drink of water.   
  • The "unstoppable, louder than they probably, actually, maybe? are stomach gurgles."  Yeah, these are pretty unavoidable.  Unlike the coughing spellings, these really can hit with no warning.  When I was in college I took an early morning Psychology class.  I always sat in the same seat.  To my left was an empty seat, then the same cute girl.  My stomach would gurgle pretty much the same time and for the same duration almost every class.  Loud enough for her to hear.  This one was pretty easy to "explain."  I would tell her that I just hadn't eaten breakfast yet.  But I did eat breakfast before class.  Everyday.  After awhile, we laughed every time my stomach made his appearance known.  We would even question those mornings when my stomach remained silent throughout the class.  I should've asked her out.  But then maybe there wouldn't be C, W and S in my life.  I couldn't live knowing that...
But by far the worst part of having CF, worse than the coughing spells, stomach aches, doctors visits, diabetes, inhalers, nebulizers, and pills, is coughing up on myself.  It's dehumanizing and disheartening.  How can my body not even hold in the smallest of fluids and phlegm?  Even when this occurs when I'm alone, I'm still embarrassed.  Simply put, it's a loss of dignity.

Well, I didn't mean to leave you on a downer.  It has actually gotten easier to come up with excuses over the years.  I'm sure there are a lot of other situations similar to the ones I've mentioned above, but I just can't remember them at this time.  I'll end with a quote from the article, that seems to be akin to my perspective on things, "You'll learn that you don't have to explain your disease when you don't want to and most importantly that most people aren't even aware of it until you tell them."

Until next post,

A



Patience

While the family and I were on vacation to Maryland to stay with C's aunt and uncle, the four of us took a "vacation within a vacation" to Bethany Beach, Delaware.  Overall, it was a great time.  The boys enjoyed their first ever trip to a beach, C got a needed break from her family (and especially her family's friend) and I got to relish all that W, S and C experienced.

Before I go into what I came here to write about this trip, I must preface this by offering a quick W story.  On our first morning at Bethany Beach, W had a MAJOR tantrum/breakdown.  He wanted Starbucks for breakfast.  When C and I told him that we were having (FREE!!!!!) breakfast at the hotel and that we weren't driving to Starbucks (we didn't even know where one was), W started crying, screaming, stomping, pounding, etc.  I was able to calm him down a bit, so I took him and S to the restaurant in the hotel to eat breakfast.  I got the boys their food, sat down to cut everything up for them and was about to go get myself food when W starting crying again.  He wanted an Everything Bagel.  The hotel didn't have Everything Bagels.  W did not quite grasp this.  The crying, and being loud and repeatedly asking "go to Starbucks!" and "I want any Everything Bagel!" reappeared.  A few minutes later C came to join us, but ended up taking W back to our hotel room with her.  S and I trailed behind.  Anywho, I know I said this would be a quick W story, so to wrap things up, W threw about an hour-and-a-half to two an hour long temper tantrum over Starbucks Everything Bagels.  This was the type of tantrum in which nothing would make W better.  We (and then just I because C took S out to the beach) just had to wait it out.

So, to what I really wanted to get across... the next day W, S and I were back at breakfast again.  W was in a much better mood (he didn't want a Starbucks Bagel this morning.  He was happy with his waffle, bacon and bowl of dry Froot Loops).  S, on the other hand, threw a tantrum because I told him I had to help him with his cup of cranberry juice (he had to use a regular plastic cup because I forgot his sippy cup in our room).  So, here's another breakfast with a toddle crying, screaming and being loud.  S's tantrum didn't last nearly as long as W's, but it still wasn't fun.

After S calmed down and C returned to the room to finish getting ready, I took W and S to go do a craft.  The three of us cut through the food area to refill their drinks (C had brought S's sippy cup with her when she met up with us for breakfast).  While we were waiting in line for cranberry juice, a lady next to us commented on how cute the boys were (I'm by no means bragging, but C and I do hear this a lot from strangers about the boys 😊)  But then she offered this: "I saw you with the boys at your table.  You did a great job.  You were so patient with your little one.  It brought back memories of when my children were that age."

That was extremely nice of her to say.  C and I both really appreciate when people come up to us and tell as that we're doing a great job parenting, especially when the boys are being difficult.  But I have to admit, that when I was saying "thank you" to the lady, what was really going through my mind was, "of course I have to be patient, lady.  Losing my temper or yelling at S wouldn't calm him down at all."

I am a very patient person.  I'm good at staying calm.  This isn't to say that I never get upset, mad, annoyed or impatient.  But I do think I do a good job of realizing when losing my temper/patience can hurt a situation rather than help it.

I am a teacher.  I am a middle school teacher.  I am a special education middle school teacher.  If there was ever a profession that required a tremendous amount of patience, it would be the job in which I'm currently employed.  I've gone off on students before.  Some kids have a way of trying to elicit that battle from you.  That's something I always try to keep in mind when things might get heated within the classroom.  Each time that I have yelled at a student, I've made it a point to personally apologize to the student for losing my temper.

One thing I'm not sure people understand is just how stressful my job can be.  I know... the same could be said for every job.  I make it a point to leave "home stuff" at home and "school stuff" at school.  It's not fair to C and the boys if I bring my stressful day at work home with me.  Likewise, it's not fair to my students if I bring my stressful day/night at home to school with me.

Some of the stress comes from the fact that some of my middle school students behavior similarly to W and S, who are 4 and 2, respectfully.  It can be difficult some days to spend a whole day at work with adolescents who act like toddlers, and then come home to two toddlers at a time which I like to call the "witching hour."  The "witching hour" involves tantrums, hunger, but not wanting to eat, tiredness, but it's too late for a nap, but too early for bed (when you combine the hunger with the tiredness, you get a term C and I like call "hangry"), lack of sharing, lack of independent play, lack of anything close to rational thought.  But at least this is expected of toddlers.

Well, if I haven't already started rambling, I feel a ramble coming on.  My intention wasn't to complain, even if it sounds like I did.  My intention was to just get whoever might be reading this to reflect on the value of patience.

And this is by no means targeted at anybody specific!!!!!

Anywho, off to go make dinner.  I found a new recipe I'm going to try tonight for C and the boys.  It's grilled pineapple chicken.  I hope they all like it!  Since this is the first time I will have made it, everyone is going to need a little patience...

A

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