Today I Cried


I cried today.

A lot.

I hate it when that happens.

It wasn’t the loud sobbing kind of crying.  It was the kind where the tears just run down your cheeks.

And if they’ve been held in there a long time, it’s really, really hard to make them stop.

I cried first when I saw the office, of the Long Island Surgeon, 30 miles, and 2 or more HOURS away from home.  As I approached the room my heart sank and a tear fell.  It was empty.  That’s never a good sign.

Then when I spoke to the less than sensitive receptionist, she said, “The doctor isn’t here today.”  Which I had figured out all by myself.  But, I checked the schedule on my phone to be sure I was right, and I was.  2:30 June 25th.  I left work early.  Rushed to let the dogs out.  Got Meghan. Braved the Belt Parkway.  And, made it in just on time.

“Look,”  I showed her the schedule on my phone.

She was grossly unimpressed and contacted the doctors direct secretary.  She said she called my cell phone on May 18th and left a message.  Clearly the message never got to me, likely the result of a simple dialing error.  I even flashed the less than sensitive one, my voicemail log on my phone.  “See, no call on the 18th.”  She was still unimpressed, and now annoyed as well.

Meghan told me this morning her knee hurt.  I haven’t heard that with regularity in a few weeks.  She told me on the way to the appointment that she was glad to see the doctor today.  She said she feels like her kneecap is shifting again.  This was a primary cause of her preoperative pain.  I could see the swelling.  I just wanted some reassurance.

But, it was not to be.  Because to argue about a phone call would have no real helpful answer, because the bottom line was, there was no doctor.

And the tears just started to fall.  At first I worked to wipe them away.  Then I just let them go.


I was offered a PA, and initially said no.  Then I asked Meghan.  She said she’d try one.

“The mother asked the patient, and it’s ok to send a PA down,” mocked the less than sensitive one.

YES!  I wanted to scream.  YES!  The MOTHER, asked the PATIENT, because the PATIENT knows her body better than ANYONE.  Her age is irrelevant.  Her experience wins.

So we waited for the PA.

He examined her knee, and spoke about the swelling, which he said was likely due to “irritation.”  REALLY?  I was told her right quad has a good deal of muscle atrophy (something our PT noted BEFORE the surgery,)  and that she should suspend all activities for a week, ice and elevate, and return in 7 days to see the surgeon.  We scheduled for 9:30 AM, so she can miss the second day of camp, only to travel from Long Island to Sloan Kettering for an endocrinology visit, and back home for PT.  (Summer vacation?  Anyone?)


He saw my tears, and saw a weak, unstable woman.  I know he did.  And for the first time ever I stopped myself from justifying my tears.  I simply told him there were many things involved in my frustration that he did not comprehend.  The end.

I am done apologizing for my feelings.  And I am done trying to explain sometimes, although not often, I cry out of sheer frustration for the madness that is our lives.

And as we got 2 cups of green tea to go, I cried some more.

I cried for the stupidity of mis-dialed numbers, and for the 4 and a half hours of our lives wasted, again.

I cried because no one really cares.  Not really.

I cried as I watched the teen bald from chemo get out of the car.  I shed tears of gratitude that it could always be worse.

I shed tears of sadness, for my girl, growing up too fast.  Advocating for herself.  Standing her ground with doctors.  Because she just shouldn’t have to.  And I cried for the doctors, who are missing out on a valuable opportunity.  They could listen to my young, articulate, “in touch with her body” daughter, and they could learn a lot.  Then I cried in desperation at the reality that they don’t want to.

I cried angry tears for the ones who have no regard for Cowden’s Syndrome.  Those who don’t understand it, so they ignore it.  They skip over it like a child trying to read a story above grade level.  Because they have never seen it, they deem it irrelevant, or unnecessary.  They don’t know that our ENTIRE treatment plan ALWAYS need to be grounded in the reality that there is Cowden’s Syndrome, and nothing is as it seems to be.

I cried about the summer that should be free of, or light on schedules, polluted by these doctor’s appointments.  Necessary to complete in the summer so I can keep my job, and she doesn’t miss too much school.  I thought about the week to come, Monday- Manhattan, Tuesday- Long Island, and PT, Thursday Long Island again, then Manhattan from there, and back to Staten Island for PT.  And the following week, appointments for me Monday and Tuesday, 5 in 2 days.  Meghan on Wednesday, and the dentist… as soon as we can get a Thursday afternoon free.

I cried about HOURS of our lives we will never get back.  Ridiculous trips that take 5 times as long as they should.

I cried because I am wasting her childhood with necessary evils.  And I hate it.  I hate it a lot.

I cried for the isolation and loneliness created by a disease that keeps us both busier than we want to be.

I cried for our friends with this stupid disease and their physical, emotional, medical, family, and life struggles.

tears eye wash

Eventually the tears dried into a scream or two.  My girl had no idea I have those lungs.

And, as we arrived LATE for PT, I breathed a sigh of relief.  Behind the doors of Leaps and Bounds PT, they “get it.”  So Meghan works on getting better, physically and emotionally in a place she feels safe.

I booked PT through the summer.  I had hoped we wouldn’t need to.  Not for any other reason than it adds to a schedule we’d rather not have.  So that “doctorless month”  we’ve been trying to plan for three years isn’t happening this summer.

“I’m over it Meghan.”  I told her as we were driving.   “I’m over the whole Cowden’s Syndrome thing.”

And in her infinite wisdom again, “I guess, but without it I wouldn’t be the person I am.  I’ve learned a lot…”

And the teacher is the student again.

Tomorrow I will have the tears back in their proper place.  Tomorrow.  But this is today’s reality, and sometimes that’s OK too.  Because regardless – we are



#beatingcowdens #collegebound

No, she’s not going yet.  And actually even the thought that she will truly be college bound only 6 summers from now makes me a bit queasy.  But, there will be time to deal with that later, and milestones to cross along the way.

For tonight, we celebrate what we hope will be the first of many college scholarships.  While the amount is small, and the $1,000 will likely not even cover the cost of her first semester’s books, the honor is great, and the concept that these things can start now is mind-blowing.

The link below only connects you to the search page, where you would have to put in her name and state to search for “Regional Winners,”  but the picture shows a snapshot of the reasons for selection.

Regional Winner - Kohl's Cares Scholarship 2015
Regional Winner – Kohl’s Cares Scholarship 2015

Search for Scholarship Winners using this link.

The award is held by Kohl’s and paid to her “undergraduate institution” upon enrollment.  It sounds so formal.  So fancy.  So far away.

But, it’s not.  And time will fly.  I know this.

So I run as much as I can, getting to every doctor, and as many swim practices, and drama sessions as I can.  She maintains her really high average with minimal input from home.  And I bring the computer to swim practice.  So I can write.  And stay sane.  And cherish the little things, which in fact are DEFINITELY the BIG GIANT things.

little things

Tonight it’s not about being sick.  It’s about being well enough to overcome.  It’s about determination to persevere.  It’s about a desire to make life better for others.


She is talking actively about how she will make next year’s fund raiser better.  Her goals.  She has some other things in the works too.  The brain is always going.


She is steering this ship.  I am her happy co-pilot.  Along for the ride of my life.

Together we are BEATINGCOWDENS, and we WILL NOT be stopped.


“I Am From” – Guest Blogger Meghan

I Am From

by Meghan

I am from Love

I am from mutts barking at night

I am from swims in the backyard pool

I am from hospitals and procedures

I am from suffering

I am from anticipation of how my life will survive

I am from anguish after surgery

I am from crying in the hospital at night

I am from fear of not being strong enough

 take pride in your pain

I am from doctors saying this cannot be

I am from hearing that I am unusual

I am from paralyzing fear of iv’s and needles

I am from being cast out for my pain

I am from fear of not surviving from the pain


I am from baby blue walls

I am from a home that cares for me

I am from a room of toys so big it’s like a store

I am from a home with clouds as chairs

I am from a home like a chocolate bakery

I am from the calming smell of Yankee candles

I am from the smell of brand new books

I am from the pool

I am from the thrill of swimming

I am from competition

I am from Wagner Aquatics and CSI

I am from the relief that comes with butterfly


I am Lori

And Felix

I am from Barbra

And Leon

I am from the Ortegas

And I am from the Thompsons

I am from many beliefs

I am from hurt and hatred

And I am from love and compassion

I am from different weather each day

I am from winter devouring sweet spring


I am from Christmas trees going up after Thanksgiving

I am from a special Thanksgiving meal the day after

I am from August Disney trips


 I am from spices

I am from cookies and cake

I am from avocado

I am from Isagenix


isagenix shake

I am from playing with my first dog Lucky

I am from meeting my second dog, Allie at pet smart


I am from church at Zion and Castleton Hill

I am from the beliefs that Jesus will rise again

I am from running up to the pulpit with Lucky in tow

I am from Gandhi’s “Be the change you wish to see in the world”

be the change

I am from adventure and fantasy filled books

I am from Rick Riordan and J.K Rowling

I am from action figures and comics

I am from DC universe

I am from Wonder Woman

I am from He-Man

I am from Batman and Superman

I am from the sidekicks

I am from X-Box 360 and video games

I am from mythology


I am from the LOVE of my family