Unsung Hero

There is a hero in this war on Cowden’s Syndrome, this draining task of “beatingcowdens” that we undertake each day.  He doesn’t get much attention, and he prefers it that way.  Yet, I shudder to think where we would be in this war without our strongest soldier.

He never could have known almost 16 years ago what he was getting himself into.  Yet, somehow every day I feel the strength and power of his love.

Lori & Felix Wedding

We stood in front of God, and our family and friends on that chilly April day in 2000, and he promised to love me, “for better or for worse, in sickness and in health…”  And he surely has been true to his word.

I am not to sit here and say, “life is perfect,” or “we never disagree.”  Because I would be lying, and frankly that would be boring.

But, we work together.  We swallow pride when it’s necessary.  We say I’m sorry.  We forgive.

never alone

And, what I can say, is there is not a chance Meghan and I could spend our days “beatingcowdens” without him.

Most often he is not physically with us.  He works later than I do.  I pick up the afternoon appointments, local or in NYC.  I drive to swim practice.  I wait there and drive home.  I am gone hours and hours every day.

We communicate via text a lot.  I type a paragraph, he answers in a word or two.

Yet there is this sense of companionship we share from afar.  While he can not be with us at all the appointments, or the practices, or the general running around the days take us on, he is home, with us in mind.

I can not tell you how often we walk into a house full of the smell of a freshly cooked meal.  It’s not unusual for me to find a bed full of clean and folded laundry.  The dogs are cared for.  The candles burn all winter when the house is closed and stale.  The floor is clean.  Little is left out and around because he knows my compulsions and respects them enough to help me when I’m not home enough to help myself.

love

None of these tasks are trite.  They are what provides me with the momentary glimpses of sanity I so desperately need.

He is patient when we talk about fundraising.  When the whole month of January, and part of February will be consumed with “Jeans for Rare Genes 2” because Meghan wanted to DO something.  He works, behind the scenes, ever-so-quietly to spread the word, raise awareness and get things started.

He backs up technology and sits through software updates.

He updates, paints, and fixes just about everything.  And he really HATES painting.

He is a father above and beyond all things.  He loves our girl so completely she still holds his heart in her hands.  He is her way to unwind from her tightly wound Mom.  He is her chef.  He knows how to tease her until she laughs, and how to hold her most precious needs close to his heart.

And when the night rolls around, and the weight of the day presses heavy on my heart, he has the right balance of knowing when to hug me, and when to make me laugh.  My worries transcend even Cowden’s Syndrome, and the list of prayers grows deeper every day for those we love who fight more than their share of battles.  He knows just what I need.  All the time.

Cowden’s Syndrome permeates every day of our lives.  It’s reality.  It is 5 surgeries for Meghan in a little over a year.  It is 70 minutes on the ultrasound table for me this weekend, hoping, praying that I had the most thorough tech ever, and she didn’t actually FIND anything.  It is next steps, and strategies, and switching doctors, and making decisions, tough decisions.

The saying goes that if we all tossed our problems into a pile, we’d take our own right back.  I would… if and only if I could continue to run through life with my husband and my daughter by my side.

Here’s to the unsung heroes in all of our lives… for the STRENGTH and COURAGE they provide.  Give them a call, or a text, or a hug.

Love-Gives-Strength-and-Courage

Twelve Surgeries in 11 Years: Living With Cowden’s Syndrome

http://blog.silive.com/gracelyns_chronicles/2015/01/twelve_surgeries_in_11_years_l.html

The content of the article is pasted below.    Please click on the link above to read the story in full effect.  The photos were added below as reflection by me!

This article appeared in our local paper.  Dr. Santos did an outstanding job capturing Meghan’s essence.

By Dr. Gracelyn Santos | gsantos@siadvance.com
Email the author | Follow on Twitter
on January 08, 2015 at 11:00 AM, updated January 08, 2015 at 1:52 PM

STATEN ISLAND, N.Y. — Meghan Ortega, a Westerleigh sixth-grader, is one of my favorite dental patients and one of my twin daughters’ dearest friends.

A graduate of PS 29, Meghan is a Principal’s Honor Roll student at Markham Intermediate School in Graniteville. She loves drama, is an avid reader, loves to swim and has a broad smile and sunny disposition.

Meghan also happens to be one of the bravest kids I know. In her 11 years, she has had 12 surgeries. Twelve. She hurts every day, but has learned pain is part of her life.

Meghan has a rare genetic disorder called Cowden’s syndrome.

Cowden’s falls under the umbrella term of PTEN hamartoma tumor syndrome. The PTEN gene, which suppresses tumor growth, malfunctions, resulting in benign and malignant tumors developing all over the body.

Approximately 30 percent of children with genetic disorders die before their fifth birthday, so Meghan is fighting for her life with preventive screenings and surgery.

As her dentist, I saw firsthand one of the oral manifestations of Cowden’s syndrome — a suspicious gingival (gum) growth — for which I referred her to an oral surgeon for biopsy and excision.

Not once did I ever hear Meghan complain.

The PTEN gene is passed on in an autosomal dominant pattern and is rare, affecting one in 200,000 people. The cancer risks are high; the lifetime breast cancer risk seems to exceed the BRCA risk, and there are significant risks for thyroid, uterine, kidney, skin, colon, and countless other malignancies.

To keep a close eye on the disease and its progression, Meghan sees doctors regularly for preventive screenings — including biopsies.

But she is just happy that she finally has a diagnosis.

When Meghan was a baby, her parents, Lori and Felix knew something was “not right.” She was chronically ill. She suffered with gastrointestinal distress well past her first birthday, and her diet had to be free of gluten, dairy, soy, dyes and preservatives. Her gallbladder was removed when she was 3 years old.

Meghan also had a lipoma taken from her back and her tonsils and adenoids removed. She had to have a complete thyroidectomy because of 19 rapidly growing abnormal nodules on her thyroid gland, three of which were deemed pre-cancerous.

The most notable of the surgical procedures for Meghan’s abnormal growths were the five she had to undergo as a result of an AVM (arteriovenous malformation) in her right knee. While AVMs are not exclusive to Cowden’s syndrome, there is an increased incidence in the population.

Recently she was hospitalized for a week because the medication that helped control the AVM in her knee caused damage to her GI tract and her esophagus.
She was taken off that medication and is healing, but the pain has returned to her knee.

It is one of the constant smaller battles she fights with side effects of the multiple medications she must take.

Meghan is often at a doctor’s office. Barely a week goes by without at least one appointment. She waits like a champion for hours on end, because she is conditioned from years of practice.

Lori, her mom, firmly believes Meghan saved her life — because of Meghan’s diagnosis, she also was tested and confirmed positive for the PTEN gene mutation. She had surgery as well, a prophylactic double mastectomy.

In a world where we often get wrapped up in trivial annoyances, Meghan is an inspiration, a reminder that in the great scheme of things, people all around us are fighting real battles.

Although Meghan has met some great friends along the way, it is often a struggle for her to relate socially to most children, who likely have been to the doctor only once a year their whole lives.

Meghan’s experience of living with Cowden’s, combined with the food issues, can be isolating for her, realizing early on that talking too much about pain to her peers can also increase the isolation: It is hard for them to relate.

So she threw herself fully into support of other children and adults who have rare diseases, like the one she and her mom share.

She worked with one charity, the Global Genes Project (www.globalgenes.org) soon after she was diagnosed.

Meghan also sought a symbol for those with multiple medical issues and what developed was beautiful: A denim ribbon, a nod to the slogan, “Hope, it’s in our Genes.”

The first year after her diagnosis, Meghan simply wanted to hand out Denim Ribbons on World Rare Disease Day. The second year, she worked with the Student Council to organize a successful fundraiser at school.

Now, Meghan has struck up a friendship with Borough President James Oddo, who has invited her to Borough Hall several times to talk about ways she can make a difference. He has become her mentor, helping her find her voice.

This year, Meghan has organized a fundraiser to be held Sunday, Feb. 15, at Nicotra’s Hilton Garden Inn in Bloomfield, to raise awareness and money for rare diseases. To help others like her, many worse off.

Her goal is to educate everyone about rare diseases in general.  She is acutely aware that everyone struggles, but wishes there would be less judgment and more support. One of her pet peeves is people who say, “You don’t look sick.”

For more information about Meghan’s journey and to support her fundraiser, please visit her blog, http://www.beatingcowdens.com  Tickets can be purchased at http://www.eventbrite.com.

 

Alex and ANI hero front

wear that you care photo

do something

random-acts-of-kindness

Meghan 2014 Nominee for Global Genes Project Teen Advocacy Award
Meghan 2014 Nominee for Global Genes Project Teen Advocacy Award
2014 Kid of Achievement - Staten Island Children's Museum
2014 Kid of Achievement – Staten Island Children’s Museum

Rare Disease Day Fundraiser

 

Milestones

When I started this blog just about two and a half years ago, it was to serve as therapy for me.  It took a while before I even started linking my posts to facebook.  I didn’t pay much attention to the stats of the blog, except to occasionally marvel at the random countries my blog was being read.

This week while searching the year that was, I happened to notice that this little blog has cleared over 100,000 views!

100000_thumb

Stunned.  Amazed.  Humbled.  Grateful.

I think of the people who have reached out to me through this blog.  People looking for an ear, or a point in the right direction.  I think about the newly diagnosed who have come my way a few times, and have been relieved to learn everything can be ok with Cowden’s Syndrome.

I think of the blogs I follow, of people with and without Cowden’s, and all I have learned.  Most especially that WE are not alone.

I think that spirit of companionship, whether it comes from a country across the world, or a city nearby is a factor in what motivates me to keep writing.

But, mostly blogging is my therapy.  My free therapist.  The computer is my listener.  Where I can air my thoughts and ideas, and worries and hopes and dreams.  And then I can edit myself into the positive mindset necessary to press on.  This blog keeps me away from the negativity and the despair that can sometimes accompany this life.

smile-its-free-therapy

And yesterday as I recapped “The year that everything broke…”  I was reminded of all the blessings that came our way in 2014.  And despite the lows, there always seemed to be someone, somewhere, with some random act of kindness, who was able to help us turn things around.  For all of these people – and they know who they are – accept my gratitude, OUR gratitude.  For really this is our story.

Although I am not much a fan of “New Year’s Resolutions,” or proclaiming that things will be drastically different in the minute it takes to pass from 11:59 PM on December 31st to January 1 at 12:00 AM…  I wanted to highlight some of the positive things that have gone on for us in 2014.

We began last year, much as we will begin this year, preparing for Rare Disease Day.  In February there was an assembly at my school.  We gave out ribbons to all the students.  Meghan and another family, two dear boys who had been affected by a different rare disease spoke.  They opened some eyes that day.

cropped-movie-night.jpg

And in the midst of that assembly Meghan met Borough President Oddo.  The two struck up conversation like old friends.  Meghan immediately respected and admired him, and he has become a mentor of sorts.  They are in Email contact, she has been to Borough Hall to visit a few times.  He was really the impetus behind Meghan believing there is no limit to the difference she can make in the world.  He continues to encourage her as she plans Beating Cowden’s First “Jeans for Rare Genes” fundraiser on February 15, 2015.  I feel so fortunate for her to see such a positive role model who changes the lives of so many just by being himself.

Meghan chatting with Borough President Oddo!
Meghan chatting with Borough President Oddo!
Meghan's friend has been a great support in so many ways.
Meghan’s friend has been a great support in so many ways.

We had a fundraiser last year as well, and raised several thousand dollars which was donated to The Global Genes Project.  Satisfaction.  “For the babies who really need it, Mom.”

In February also in the midst of what was almost a train wreck around a bad snowstorm and a carefully orchestrated thyroidectomy, I frantically called in desperation to get us into NYC the night before the surgery.  Ultimately we ended up with the greatest gift, as we were privileged to spend a few hours at Ronald McDonald House in NYC.   The facility, the employees, the organization – all phenomenal.  Our Guardian Angels were active that day!

Ronald McDonald House

Our Room
Our Room

Meghan received some awards this year that made us very proud.  In the Spring she was selected as “Staten Islander of the Week.”  At graduation, she received the “Portrait of Courage” award.  In the summer she received a nomination from the Global Genes Project for their “Teen Advocacy Award.” On my birthday she received a “Kid of Achievement” award from the Staten Island Children’s Museum.   She was starting to get the idea that SHE can make a difference.

Meghan 2014 Nominee for Global Genes Project Teen Advocacy Award
Meghan 2014 Nominee for Global Genes Project Teen Advocacy Award
2014 Kid of Achievement - Staten Island Children's Museum
2014 Kid of Achievement – Staten Island Children’s Museum

In July the Borough President’s office arranged for Meghan to throw out the first pitch at a Staten Island Yankee game.  And this girl who had never thrown a ball before received a crash course from some great friends.  Not only was the pitch a success, but the number of friends and relatives who joined us at the game, wearing “I love someone with Cowden’s Syndrome” T-shirts, was beyond touching.  We are loved.

SI Yankee 2014 B1

August saw the overcoming of a lifelong fear of roller coasters, for both of us.

wd031wdw2014219106347302

And in the fall we saw the first glimmer of hope that Meghan’s dream for a denim ribbon necklace was steps from being realized.  Exciting times all around.

It looks like it will happen- SOON!
It looks like it will happen- SOON!

We capped the year off at the Stone House at Clove Lakes, with another family with a different rare disease, lighting their Christmas Tree to help raise awareness of rare and genetic diseases.  Meghan’s intermediate school chorus came out on that chilly night to support the cause.

Meghan and Uncle Chris at The Stone House
Meghan and Uncle Chris at The Stone House

So Cowden’s Syndrome, while it creates more than it’s fair share of heartache and obstacles, also creates opportunity when we look for it.

Just like we notch off and remember each surgery, and the milestone of overcoming the recovery, we also acknowledge, enjoy, and savor the positive milestones.

We remember that “everyone has something.”  We are grateful for the blessings in our lives.  No one’s life is perfect, and far too often we all suffer from the belief that someone else’s “grass is greener.”

May each day hold for you enough positives to counteract the negatives, and the ability to look for the good in all situations, people and places.

That is my wish for my family and friends near and far, not just for the new year – but for every day of your lives.

Visiting Daddy at work on the New Year's Eve Ball
Visiting Daddy at work on the New Year’s Eve Ball

 

Portrait of Courage

You-Are-What-You-Think1

We have a short window of time from the point we meet someone to make an impression on them.

Think about it.  It happens all the time.  You pass by countless people, on line, in the grocery store, the receptionist at the doctor’s office…  And often, within moments you either remember a rude interaction, or you forget that they even existed.  The brain has to protect itself to some extent.  We can’t remember everyone.

But then there are some people you can’t forget.

I met her in the jewelry store a few months back.  I was buying a bracelet for my girl on a particularly tough day.  We struck up an easy conversation.  She was young, bright, and articulate.  She was friendly. She asked about my daughter and I shared.  I explained Cowden’s Syndrome and some of our most recent endeavors.  Then she nonchalantly told me she was a cancer survivor.  Melanoma she told me.  She was 22.  She told me she planned to be a teacher.  I imagine she will be a great one when it’s time.  At some point I brought up our trip to Disney, and how it might be time to take a break, and save some money.  She told me – wise beyond her years – that the bills will always be there.  Go.  Enjoy.

hope and spoon

Wednesday night I went into the jewelry store again.  I struck up an easy conversation with another employee.  I wanted to get a necklace repaired for Meghan.  It had a “hope” ribbon and a spoon.  She asked about it and I explained again about Cowden’s Syndrome, and the Spoon Theory.  When she brought me the necklace she wouldn’t take any money.  Instead, she offered me a “pay it forward” opportunity.  She showed me a “gofundme” page on her iphone.  She explained that this young girl, now 24, was battling stage 4 malignant melanoma, and if I felt so inclined, I could contribute there.

My heart began to race.  I recognized this girl.  She was the one, the cancer survivor who had helped me months prior.  I asked a million questions, rapid fire.  The kind woman answered them.  I was stunned.  A melanoma survivor, she found a lump a few months ago, which led to a CT and PET scan, and the determination that the melanoma had spread.  There will be treatment.  She is tough.  She will fight.

24 years old.

My sister is 25.  My brother is 25.  My cousins are right about that age.  They are all at various points of setting up their lives, not fighting for them.

She could have been anyone.  This girl in the jewelry store.  But she was dynamic.  Because apparently that is who she is.  She is the person that sticks with you.

Read her story here. http://www.silive.com/sports/index.ssf/2014/06/college_of_staten_island_to_ho.html#incart_river

And if you are so inclined, do what you can to help.

be the change

That is a conversation Meghan and I have all the time.

Life is not easy.  It is often unfair.  Frequently she feels like crap, and always she seems to hurt.

Yet, I tell her all the time, you have a short window where people will make a judgement about you.  It’s not fair either, but it’s true.

And when you live your life chronically ill and/or in pain, you may sometimes feel like you have to lie.

But I am helping her find the balance.  Ways that she can still be honest about what she’s going through, and say what she means, with an upbeat delivery.

i am one

Meghan has been blessed with a beautiful elementary school experience that spanned  6 years and 2 schools.  And although we elected to change schools at the very end of fourth grade, she can reflect and see the positive experiences gained in both places.  It seems everything happened as it should.

And in third grade, one of the roughest years of her life, she was met with one of the most compassionate women I will ever know.  A gifted teacher who cared so much more about the child than the curriculum.  And this year, when there was loss, deep loss, and surgery, and more major struggles there were several excellent women in her path as educators, and sources of strength.  And again, there was one with a sick child of her own, who just “got it” from the beginning.  My gratitude knows no limits.

to teach

Today we sat for a beautiful moving up ceremony.  Everything was perfect.  The length and content of the ceremony carried out through the careful precision of true professionals.  The children were calm and well-behaved.  Everything was smooth.  They all made it look easy, but I know all too well that its not.

Thirty years ago I walked across that same stage.  Today a lot of things came full circle, and after 17 plus years of teaching in my school, I sat in the seat of a parent, and I could not have been more proud.

She received two medals for school service, and she was beaming.  Then they called her name for the “Portrait in Courage” Award.  And the tears flowed.  Mine – not hers.  So touched by the time it took to match my child with an award that was a perfect fit.

See I always knew she had courage.  And I think most people who meet her would never deny it.  But lately, struggling with the pain, there have been some dark days.

couraqge 1

So we talk alot.  And I hope and pray that my words get through.

I tell her what a gift she has, that people view her has positive, and courageous.  I tell her that just because I happened to agree doesn’t mean the responsibility ends there.  When people view you this way, they look to you.  They feed off of your energy.  You inspire them to be better people.

It doesn’t mean you have to be positive all the time, because we all have our days – but it means most of your work has to be upbeat.

Today she hurt.  As she always does.  And I could see it.  But she never said it.  Tonight I felt her knee, and that all too familiar pulsing seems to be finding its way back.  She asks me not to hug her.  Especially in the morning – because my touch hurts.  There are dark circles under her eyes.  But we went out all day today, as a family.  And she was amazing.

She held that plaque in her purse.  She wore her medals.  She smiled.  She looked people in the eye.  She spoke.  She lit up rooms.

Danielle, from the beginning of my story, has never met Meghan.  Yet to me there are so many similarities.  I told Meghan all about her.  She gets it.  She gets a lot of things.  And as I struggle to help her find the gentle balance at 10 years old, of being positive and honest – I see role models for her in our small community.

“Portrait of Courage” indeed.  As her teacher said, she has endured more in her first decade of life than most, and is a force to be reckoned with.

meg awards

For Meghan, for Danielle, and for the others who we cross paths with every day – you inspire.  You lead by example.  You ARE changing the world.

Thank you.

Superheroes…

In honor of the last day of September – Childhood Cancer Awareness month, I am re blogging my own post from January of this year.

beatingcowdens

I saw superheroes today.  Not the kind that normally come to mind.

superheroes

The 9th floor of Memorial Sloan Kettering Cancer Center was absolutely crawling with them.

None of them had capes.  And they weren’t any funny colors.

None of them could fly, and yet I am sure that’s what they were.

I saw young bald superheroes with smiles that could light any room.

I saw older, more mature superheroes, heroically managing their IV poles, after teaching a younger one not to cry.

I saw parent superheroes, who although their capes were invisible to the naked eye, possessed nerves of steel, and the ability to make their young one laugh even as they themselves were inches from despair.

I had a lot of time to watch them.  We had a long wait this morning.  And even as I kept Meghan distracted, my eyes never left them.

They navigated the floor like…

View original post 239 more words

Bravery/ Courage

Brave

Bravery – Ready to face and endure pain; showing couragecourage
Courage – strength in the face of pain or grief
It’s not a secret how I feel about my girl.  It’s not a secret at all that I hands down find her to be one of the bravest and most courageous children I have ever known.  She faces adversity better than most adults I know.  She presses onward with determination, not drama.
I don’t mean for a minute that there is never a hiccup on the path.  That would be delusional, and even unfair for a child who has yet to pass her 10th birthday.  But I mean, that despite the pebbles, rocks, and sometimes boulders tossed in her path, she keeps her head up and stays focused on what matters.
Yesterday we has testing at MSKCC in NYC.  We were told to arrive by 8:30 AM for testing at 9.  It was to be a 2 hour pituitary function test, followed by an ultrasound at 12:30.  Then we would be home by about 2.
So we woke at the crack of dawn – a nasty habit this summer – and arrived in our designated spot by 8:20.  As we were meeting the oncology nurse, a truly LOVELY and compassionate woman- a representative from the doctor’s office came bustling in to tell us the medication needed to start her test had not arrived at the hospital, and should be there by about 3.  She then proceeded to tell me maybe I wanted to reschedule.
Let’s say succinctly that the conversation that followed took place out of Meghan’s earshot.  The medication would arrive at 3.  We would have our ultrasound at 2.  And everything we left the house for bright and early WOULD be accomplished, before we headed home.
I can be a calm and rational person, at the right time.  But, the right time is NOT after you confirm an appointment at 4:30 PM the night before and FAIL TO SEE IF THE NECESSARY MEDICINE IS ON SITE!
So, I saw the woman off on her tasks to fix what had been broken, and I took the cues of my girl who thought, “We are in Manhattan – Let’s see Daddy.”
We took the shuttle to 53rd street and 3rd Ave.  Then we WALKED to 42nd and 7th.  Just in case there was even the slightest doubt that Meghan needs her wheelchair in Disney – it has officially been confirmed.  The 25 minute walk each way did more damage to her legs than I could have imagined.
Toys R US times square
But, we did get to Toys R US.  Meghan has been there before, as it is one of the stores her Daddy helped light before it was open, and it is so close to his office, but a toy store of that size is a huge thrill nonetheless.
She left with a Merida doll from the movie “Brave.”  Ever so fitting in so many ways.  I knew Daddy would have to take the Barbie size one home with him, so we surprised her with a Polly Pocket sized one when we got back to the hospital.
brave 2
Why did you like this doll, Mom?        
Because YOU are the BRAVEST girl I know.
The shuttle took us back to MSKCC by 1:30.  We promptly bought Tylenol for legs that could barely carry her and went to endure a 40 minute ultrasound.  Then it was back up to the floor for the test.  The medicine arrived – barely, just barely, but it arrived in time so that after an IV was placed, and a super painful injection given – we began the 9AM test at 3:15.
And there she sat, for 2 hours, in her chair.  Reading, playing with her iPad, watching movies.  Uncomfortable.  Exhausted.  Brave.  Courageous.
It may take a week or more to have the test results, and I will pray as I always do, that they return without any evidence of a problem.  But, time will tell, and the waiting game is one we are well practiced at.
So as we arrived home at about 7 last night – 12 hours after we left for the day- we consumed a giant dinner prepared by Daddy, and my poor exhausted girl took some more Tylenol and fell fast asleep.
Only to be woken this morning by the ring of the alarm clock.
run-clock
An 11 AM MRI/MRA of the wrist was waiting for us at 1st Ave and 38th Street.  The June 4th injury never healed, and it was finally time to get some answers.  The doctors we have seen all have differing opinions.  AVM? Arthritis?
When I tell you I have actually lost count of the number of MRIs my girl has had, you may find that odd, but there truly have been THAT many.  We have the pattern pretty much down.
We let the (hopefully) nice nurse pick the IV spot.
courage 2
Of course this time, since it was a scan of her RIGHT wrist and hand, the really solid veins in the RIGHT side were off-limits.  So, after two painful sticks to the left, she ended up with the IV on the side of her wrist.  And even with the discomfort she was in, she listened intently as the camera was placed in the MRI room, and absorbed her directions on positioning.
My cursory question of “How long?”  Was answered with “Less than 45 minutes.”  It’s almost a silly question to ask because I have no watch, no radio, and no means of telling time in the room.  But, somehow it makes me feel better.
Ear plugs in place, the door closed us in, and she headed into the tube.  My hands remained on her ankles, and I could hear the deep breathing.  It was just her and Merida inside the tube now.  Bravery at its best.
couraqge 1
It was 11:25.
It was well past 12:30 when we were told to wait it out while they ran through the images to be sure the doctor saw them.
time-warp
And then it was 12:45, and some time after 1:00 we were taken to another room.  Another room with a smaller tube and a stronger magnet – for a few more pictures.
This doctor, this attending, at the hospital reviewed her images, and wanted more.  This doctor I will never meet, who is not the radiologist who will read the images, who somehow got called by the tech doing the exam.  This doctor wanted more pictures.
So as Meghan laid on her belly in the tiny tube with Merida by her side, she sensed things weren’t quite right.  I gave her an abridged version of my inferences.
Then I chuckled at her response.
If something is wrong with my wrist, how will I do the archery we signed up for in Disney?
We will make it work Meg.  No worries.
And she laid, quiet and still as could be as 5 minutes became 20 before we were done.
So that’s it?  You aren’t going to tell me anything?  I asked the tech.
I am not a doctor was the painful reply.
Understanding they can’t, it didn’t help the growing pit in my stomach.
Your doctor will have the results  Monday afternoon or Tuesday morning.
Meghan got dressed and I held her up as she limped the 6 blocks to the parking garage, an all too familiar summer scene replaying itself. It was 1:45 PM.
Last night I asked when I was going to get a break.
I take it all back.
BEATING COWDEN’S will require stamina and strength I never imagined I could have.
I will continue at this pace forever, and as I wait for the test results I will be buoyed by the Bravery and Courage of my favorite 9-year-old.
brave 3