Behind the Scenes…

We don’t post the awful pictures.  We leave out the ones where we look less than our best.  Social media allows us to live in the delusion that everyone’s life is “perfect.”

I’ll be the first to admit the ugly truth.  It’s far from perfect.  It’s not neat or clean.  There is no bow.  And yes, most of the time I do delete the awful ones.  Those images and experiences are seared into my soul.

I prefer to go with the theory that the body forgets pain…  At least your own.  It’s how we survive.  But, if you live watching a loved one in pain – you know the memory will not slip even a tiny bit.  If you hold your child as they cry out in pure agony, or when they are weak from fever, you can remember where you were each time.  If you watch your teen wince simply through a series of steps, or check to make sure they are breathing as they sleep the better part of two or three days at a clip – you don’t forget.

Recently, Meghan was in a production of “Beauty and the Beast Jr.” with the Staten Island Children’s Theater Association, Inc.  She loves the experience of working with a theater group and has been with this one a few years now.  It is such an enjoyable time in her life.  She spends months of Saturdays with genuine quality people preparing for the show.

Meghan as “Madame de la Grande Bouche”

And during those same months she is thriving academically.

And training for swimming.

And making regular appointments, routine, follow-up, and therapy.

And contending with seasonal allergies that are nothing less than relentless.

And, she is, every single day a person living with Cowden’s Syndrome and the effects it has on her, both physically and emotionally.

The show was almost 2 weeks ago.  It took me a little bit to get my thoughts together.

I think I have it now.

Living with chronic illness, chronic pain, chronic life altering physical ailments, is in some ways similar to putting on a production.

You set your sights on what you want to accomplish – large or small.  In some cases it’s going to a party, and in other’s it’s going to the backyard.  But, you plan for it.  You practice it.  You consider every detail.  You may have to select the right costume and even stage it so you don’t sit or stand for too long.  You know just what your body can do and there is a short window where you have to make it all work.

The rest of the time you are backstage.

You are in pin curls and shorts with a tank top.

You are rubbing your feet.  You don’t have make-up.  Backstage and rehearsals, these are what life is made of.  But, we don’t take the camera out while we are there.

Everyone’s preparation is different.  I can only write about ours and confidently say everyone has some level of preparation before the “show”.  Some people make it onto the stage more often than others.  Some people have fewer performances, but make them count as much as they can.  Those people take nothing for granted because they have no idea when they will step out into the “stage” again.

That’s what social media looks like to me, anyway.  Every picture is on the stage.  Some have more than others.  But, because of the world we live in it is easy to judge based on what we see without considering what we DON’T see.

The night of the show Meghan went to the diner with her friends.  She got home close to midnight.  It was Sunday, and a school night, and I had already decided she’d stay home the next day.  It wasn’t a reward.  It was a necessity.  The amount of energy her body had expended could not be recovered quickly.  She slept until 2pm the next day, and was asleep again by 9.

I sent her to school that Tuesday – ready to roll.  She swam at 5am, did a full day of school, an hour of physical therapy and another 2.5 hours of swim practice.

Probably not the best plan.

The physical therapy is in place to try to strengthen her overall.  Joint laxity, ligaments subluxing… all sorts of cracking, popping and shifting.  The search for answers is on, but in the mean time we do PT…

By Wednesday she couldn’t move.  She made it to school – barely.

Her IEP meeting was that afternoon, and we had lengthy conversations about all sorts of physical and emotional needs relating to school.  We also spoke at length about the service dog we are in a holding pattern waiting for, and how he will fit in to the big picture.  So many questions…

Thursday we got in the car to go to school.  By 7:30 I had her back in her bed.  She just could not.  She slept until early afternoon Thursday, followed it with and early bedtime and slept again until early afternoon Friday.  There was a little less sleep as the days went on but it was a slow process.

The show that was so incredibly worth it in every way – cost her a full week in recovery time.  Her body hurt so deeply.  This is not an out of shape child.  This is a person living with a chronic pain and illness that is affecting her body in ways not even the doctors fully comprehend yet.

But I didn’t post pictures of her wincing in agony, or sleeping for days.

To the outside world she doesn’t look sick.  She’s 5 foot 8, full of muscle and extremely well-rounded.

She works hard at it.

Some days are easier than others.  But every day she works.  She is fierce and relentless and she does not quit.

Next time you catch a photo of her smiling or singing in a pretty dress know that it took a lot of staging to pull that off, and there will likely be a lot of recovery on the back end.

But, she wouldn’t have it any other way.  Not for a moment.  She is my inspiration to remain…



Almost Perfect… works for me!

Poetry By Shel Silverstein

“Almost perfect… but not quite.”
Those were the words of Mary Hume
At her seventh birthday party,
Looking ’round the ribboned room.
“This tablecloth is pink not white–
Almost perfect… but not quite.”

“Almost perfect… but not quite.”
Those were the words of grown-up Mary
Talking about her handsome beau,
The one she wasn’t gonna marry.
“Squeezes me a bit too tight–
Almost perfect… but not quite.”

“Almost perfect… but not quite.”
Those were the words of ol’ Miss Hume
Teaching in the seventh grade,
Grading papers in the gloom
Late at night up in her room.
“They never cross their t’s just right–
Almost perfect… but not quite.”

Ninety-eight the day she died
Complainin’ ’bout the spotless floor.
People shook their heads and sighed,
“Guess that she’ll like heaven more.”
Up went her soul on feathered wings,
Out the door, up out of sight.
Another voice from heaven came–
“Almost perfect… but not quite.”

When you are a teacher you will sometimes find the craziest things echoing through your subconscious.  Today, over and over I kept hearing the line, “Almost perfect… but not quite.”  It wasn’t until a few minutes ago that an internet search led me to the poem above.  A fan of Shel Silverstein for years – undoubtedly this is the message my “inner self” was trying to get across all day.

We woke up late this morning.  Later than I wanted to.  Well, let me rephrase that.  I actually WANT to sleep VERY late, most of the time.  However, the reality was that there were things to do, bills to pay, places to go and people to see.

So, I was a bit disgruntled early this morning.  I struggle with this feeling most weekends.  I want to badly to use my time wisely.  I want to stop and smell the roses, but I battle with the consequences which leave me buried behind paperwork for home and school, bills to sort, letters to write, and laundry to do.

I am too often a bit like Mary Hume in the poem above.

No One is perfect, that why pencils have erasers.

I expect perfection, primarily of myself.  I am always, and have always been, my own worst critic.

Why isn’t the house clean? Why aren’t all the bills paid?  Why can’t I manage the money better?  Why can’t I find time for fun?  Why can’t I figure out an exercise schedule?  Why can’t I get organized?  Why does it take me so long to follow up on things?  How come I can’t manage to keep up?  Why don’t I see my family and friends more often?  Why doesn’t Meghan feel well?  Could I have gotten her to a better doctor?  Are there better answers? WHY? 

You can insert all sorts of things there, but my guess is that I am not alone.  Although I kind of hope I am, because I am actively working to get out of that place.  Its not healthy at all.

Because, really?  Does it matter?


Don’t get me wrong.  I am not at all suggesting that we just toss it all to the side and let everything go, but is the fact that I am one set of sheets behind because we went apple picking yesterday really the end of the world?  I think not.  In fact, I am sure the memories we made will stay with us far longer than (the horror) having to change the sheets on a Monday… or dust on a Wednesday… or just clean the floor, fan, window, when it’s dirty.

We got a roof 2 weeks ago.  My screens are the dirtiest they have ever been.  They will get washed.

It’s October 6th,  I changed the calendar today.  The world didn’t end because I missed the 1st.

I like order.  I like neatness.  And truth be told, with the medical battles, quests, and journeys I can not afford NOT to be organized.  But, I am learning, or trying to learn not to obsess.

See everything changes on a moment’s notice.  There are no guarantees.  In our lives, where Cowden’s Syndrome is the proverbial Elephant in the Room at all times, this is especially apparent.  But maybe in some way we have a bit of an advantage.


I plan ahead as best I can.  I organize my files, my lesson plans, and my doctors appointments.  I do all of this with the understanding that one day I may have to stop it all and address a health issue.  So, when I can I spend a few extra moments being organized.

But, because we know all too well how fast things can change I am learning to stop.  I am learning that its ok to make a rubber band bracelet some days, or to pick some pumpkins, or to watch the swim practice and marvel at the health that allows it to take place instead of burying myself in more work.

It’s not just our lives that can spin out of control.  We just have notice that its “likely” to happen.  I feel for the MANY, and I mean WAY TOO MANY people I know whose lives are spinning wildly as they try to gather themselves.

What do you do?

You have to get up and get moving and get about each day as best you can.  You have to maintain some semblance of order.  You have to pause.

In that quest for perfection we can lose ourselves all too quickly.  We can miss it as it flies by.

Tonight I worked on the checkbook.  I say “worked on.”  I used to say “balanced,”  but that would just be a lie.  Yes, I am a math teacher.  No, my checkbook is no longer to the penny.  I just won’t sacrifice the extra hours.  But its close enough that I haven’t bounced a check in 20 years.

Almost perfect… works for me.

There are way more important things that need my time.