#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.

Determination

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.

effort

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

 Just-Tired

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

keep-calm-and-swim-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

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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

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 I am from spices

I am from cookies and cake

I am from avocado

I am from Isagenix

avocado

isagenix shake

I am from playing with my first dog Lucky

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

 allie14

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

 10500282_10203513492902731_2127906737052111753_n

I am from the LOVE of my family

BEATING COWDENS!

She didn’t get THAT from me!

And in her never-ending quest to keep Cowden’s Syndrome firmly in its place, my girl blew me away yet again.

I am just along for the ride.

She looks like me.  She and I share a broken PTEN gene, and all the ramifications.  She inherited my tendency to grow things, and perhaps her body is even playing harder with her.

We are roughly the same size.  We have curly hair.  We share some clothes.  She and I are both stubborn, sometimes to our benefit and sometimes to our detriment.  We are strong-minded and strong-willed.

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And that is probably where the comparisons stop.

Yesterday after a full day of school, she fit in a PT session, 2 hours at after school drama, a good run at her abbreviated swim practice schedule (for the second day in a row,) and came home to complete some lingering homework.

Tonight, her father and I took her to the school’s chorus/drama performance.  It was hot.  It was long.  It was so worth it.

The kids have amazing talent.  I guess what I didn’t really get until tonight is that mine fits right in.

After a skit on Helen Keller, where she played Annie Sullivan, she stood with several 6th-8th graders and they each sang acapella,  an excerpt from a Broadway show tune.

Meghan had never heard of “Fiddler on the Roof.”  She downloaded the song she was told to learn.  She practiced.  I fought back tears of pride and joy.

I told her drama teacher I had no idea she had that in her.  The teacher told me to “wait and see what we bring out of her in the next 2 years.”

What a gift.  Two happy places.  The stage AND the pool.  BAM!

keep-calm-find-your-happy-place

Take that Cowden’s!  This kid’s got things to do…

“Take pride in your pain…”

take pride in your pain

My daughter is a reader.  She eats books up.  One after another.  I have pleaded with her to use the kindle, just to avoid the sheer volume of books in the house.  I lack the responsibility to be a good library patron, as my brain can’t remember even one more thing.  So the books build up.  There are gift cards, and sales.  And I never say no to a book.  Ever.

Her early childhood teachers nourished a love, no a passion for reading.  They gave her the skills to decode, to comprehend, and to find her genre of choice, and her escape.  She has needed that escape so often through the years that I find myself grateful for how easily the reading comes to her, and forever grateful to those precious teachers who likely have no idea how deeply they have impacted our existence.

This was a weekend full of homework.  It was a culmination of a month that began with being pulled from class for play practice, and continued through her surgery on May 6th, and seven days absent.  There are 4 honors classes to maintain, and for a perfectionist at heart, striving to get it all done has been nothing short of horrendous.  All the classwork, all the homework, all the projects, every last bit of it to be made up.

be soft

And I understand, to some degree, why nothing was forgiven.  Why she had to do it all.  I have sat in the seat of the teacher for 19 years and the reality is absent or not, sick or not, they are responsible for the curriculum.  That didn’t stop me from questioning the VOLUME of work and how it differed drastically from unbelievable to totally reasonable.  And it didn’t stop the stress and bitterness of the last few weeks from taking a toll on both of us.

I hate having to be the “heavy” all the time.  But, I was the one who had to put the books in her hand days post-op.  Still working the anesthesia and narcotic pain relievers out of her system, it was time to get started.  Knee elevated and iced, we talked through one subject after another.

Normally she manages all her schoolwork alone, and does it quite well at that, but this month I needed to stay with her.  Make sure all the pieces were getting put back in place.  Junior high is a step closer to the “real world” I guess, and while there was some awareness of her absence, life marched right on.

She hopped in and tried to catch up at school.  She spent the entire week there, despite my knowing by Friday she probably should have been home.  Friday night the fears were confirmed, as the classic sore throat began.  Honey syrup lasted through the night until the pediatrician was able to declare an ear infection, and likely strep throat.  She was cultured.  The script was filled, and even as she took dose number one, the books were open.

She worked in my office this weekend, so I could oversee.  Laptops side by side.  Lots of togetherness.  But, one subject at a time, it got done.  The notes were put into notebooks, packets were completed, homeworks were stapled together.  A science book was created and a newspaper for English class too.

And slowly as the last staple went into the last assignment, a smile crept over the corners of her lips.  Her throat felt just so much better, and there was this notion that the weight of the world had been lifted from her shoulders.  There may be more to do this week.  The year is not over quite yet.  But finally, she is all caught up.

fear

So she retreated to her favorite spot on the couch today, alternating between reading, and watching a series on Netflix.  She brought me her book, “Gathering Blue” by Lois Lowry.  “Hey Mom, listen to this…“Take pride in your pain,” her mother had always told her, “You are stronger than those who have none.”

She offered me a free hug and a smile.  Then she was gone, back to her day of much-needed peace, healing and rest.

But, the depth of her quote resonated with me.  Not only in amazement that she is able to extract such meaning from the context she reads, but also in the context of today, Memorial Day 2015.

When I started writing this blog it was all about therapy for me.  It was all about our journey, and what we were going through.  And still, so much of my day, so much of our lives, are consumed by Cowden’s Syndrome, its ravages and its effects, that leaving it out of my writing would be impossible.  For while it does not, nor will it ever, own us, or rule us, it had shaped us as we grow through this disease together.

Along this journey we have learned so many lessons.  We have learned to have a keener eye to the suffering of others.  We have embraced the reality that “everyone has something,” and we have a deep appreciation for the many blessings we have.

I spoke several times today with one of my Dad’s Marines, “Uncle Alan.”  I learned about lowering the flag to half mast till noon to remember the fallen, and then raising it to honor the living.  I learned about some more Marines, and for a short time I was able to provide an ear for someone whose grief on Memorial Day bears more than general images, but actual names and faces.  He speaks with such grace, such poise, and such a deep connection to his “brothers.”  I can not help but admire him, even as we have yet to meet.

I put together this picture last night.  All four of the veterans I love so dearly, only one of whom is still with us here on earth.  My Pop, pictured with my Grandma, almost 70 years ago in the top left.  At 95 his wit, compassion, faith, and humor still inspire me.

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I took some long walks today.  I had a few long talks, with God, and with my Dad, and some others gone too soon.  I embraced the beauty around me.  I gathered my inner strength to handle whatever life has waiting in the wings.

“Take pride in your pain.  You are stronger than those who have none.”

Remember THAT.  Always.

blessed not stressed

Now we’re back where we started…

“Do It Again” (The Kinks)

“Standing in the middle of nowhere,
Wondering how to begin.
Lost between tomorrow and yesterday,
Between now and then.And now we’re back where we started,
Here we go round again.
Day after day I get up and I say
I better do it again…”

The chorus to the old song rings through my head, as we prepare to return to work and school.  Eight days post-op and everything checked out just fine at the surgeon.  It’s ok to return to school, as long as she limits stairs, reduces the weight she carries, and generally takes it easy.  The surgery went well.  The recovery is moving along.  But, as with each time we’ve done this, there are no promises.  There are some cautious words.  There are some hopeful words.  This is what I have to focus on.  And I will.

But, sometimes it can be hard.

Like when you do research and turn up this page from an orthopedic clinic.  (Rosenberg Cooley Metcalf) and you do OK until you get to the bottom where it says “Recovery.”

Knee

Primary Inflammatory (Synovial) Disease of the Knee

Diagnosis

Your diagnosis is a primary inflammatory condition involving the lining (synovial tissue) of your knee joint.

Injury or Condition

This condition represents a primary inflammatory disease developing within the velvety lining (synovium) of the knee. In response to inflammation, the lining tissue can thicken and hypertrophy dramatically which may lead to chronic swelling.

Cause

The cause is often unknown. Some inflammatory diseases of the knee lining involve only the knee joint (PVNS). Other diseases like Rheumatoid Arthritis can affect multiple joints.

Symptoms

Typical symptoms are moderate to severe generalized swelling and pain about the knee. Marked swelling can be associated with stiffness usually in bending the knee. Increased warmth is felt about the knee in some cases.

Treatment

Standard treatment includes:

  1. Anti-inflammatory medication for six months.
  2. Safe exercises to improve strength without aggravating swelling.
  3. Ice, warm packs and knee balms can be used to decrease pain.
  4. Swelling can sometimes be reduced by application of elastic stockings and/or sleeves around the knee.
  5. Diagnostically, joint swelling aspiration and MRI can provide information, although it may not change the treatment.
  6. If non-surgical treatment fails, arthroscopic surgery to remove the diseased tissue (synovectomy) should be performed to limit or cure the disease.

Precautions

Important precautions:

  1. Do not aggravate swelling and warmth about your knee. Increased warmth and swelling may weaken your thigh muscles and may raise the risk of destructive changes within your knee.
  2. Do not ignore or neglect your condition. Follow recommendations and do not miss important follow-up visits.
  3. When arthroscopic synovectomy is necessary, elevate your limb very well for 48 hours and initiate full weight-bearing within the first 3 days of surgery.
  4. Avoid stress.

Recovery

As the cause is unknown in many cases, the recovery can be uncertain. Two-thirds of cases generally recover completely. Full recovery after arthroscopic surgery usually takes 3-6 months.

US Ski Team US Snowboarding
Rosenberg Cooley Metcalf Clinic“Two – thirds of cases generally recover completely.”  The math teacher in me is unhappy with those numbers.  The mother, the mother of this child, knows that she defies statistics whether they are for or against her.  She is her own special case.

Meghan spent the week on the couch, making up what seemed to be an astronomical amount of schoolwork.  Maybe it was a good distraction.  After surgery 13, the novelty of the whole thing has worn off.  Days are long.  Recovery is mundane.  People are busy.  Texting helps a bit, but the hours drag.

sigh

We got to PT this week, twice.  And already I see progress.  That’s why quality therapy is worth every minute.

So during my days home I did laundry, and caught up on some household things while I stayed close to my girl.  I also attacked “the pile.”

Busy_desk

There is a spot on my desk where all the bills, letters, invitations, flyers, and pretty much everything else goes.  I try to get to it every few days.  But mostly I don’t.  Then it overwhelms the table.  And somewhere under the pile is “the list.”  The upcoming appointments line the top.  Then there are the appointments I need to make, and the bills to be addressed that for some reason are not in “the pile.”  Today was a good day to tackle it.  I made some significant progress.

I also spent hours on the phone.  I dredged up the anesthesia bill from my surgery in February.  That took an hour.  But, it’s done for now.

I started scheduling appointments.  We tend to cluster a lot the first two weeks of the summer.  Some have been planned for months.  Some I’ve been blocking.  I got a few more in.  Then I got stuck.

In the hospital the pediatrician last week was really on my case.  She wanted to know who was “in charge” of Meghan’s appointments, check ups and surveillance.  She didn’t like that I said, “ME!”  (Maybe it was the way I said it… (grin))  But, truth be told, I really don’t like it either.

time struggle

I had to tell the endocrinologist that 12 weeks was too long to wait to repeat ANOTHER irregular lab finding last week.

Meghan’s blood pressure in the hospital was low.  Like at times crazy, scary low.  I know she was just cleared by a cardiologist, but…

And the lesion on her hand dubbed “vascular” by the dermatologist….  What to do with that?  The same dermatologist who promised the moon and the stars and the sky in November as I prepared HOURS worth of Meghan’s medical records for her.  The same doctor who said she’d help us.  That one.  Yep, she’s useless at this point too.

I was on the phone today pleading with the receptionist of one of my doctors to let Meghan come in as well.  Apparently the fact that she’s “adult size,” doesn’t matter.  I was left so frustrated I choked on a few tears.

run-clock

This Syndrome is big.  I can manage it.  I can and I will, because there is no other choice.  But, I need some help.  I need a point person.  Someone to force the doctors to listen.  Someone to gather it all into one place and make sure it makes sense.  Someone to make sure we don’t miss anything.

In desperation I emailed the genetecist who diagnosed us.  He responded within an hour.

Dear Mrs. Ortega,

I am sorry I said no need to return. I have been overwhelmed with patients but this is no excuse. I will find out the referrals needed for Meghan and we will together make a surveillance plan. And we will meet so we will document the whole process.

I feel that I am the least helpful of all the physicians because I do not provide treatments. However, I will gladly assume the role of coordinator of care for you and Meghan. 

Sincerely,

(The angel I need… I hope)

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I will call tomorrow to make an appointment.  I have a good feeling about this one.  Please, whatever your faith, send some prayers.  This would be huge.  Really huge, in a life-changing good way.  We are three years in and due for an overwhelming cycle of tests again I’m sure – but I know it gets easier.

I just want to keep her safe.  I want to use every tool God has given me to keep her as safe as I possibly can, so we remain BEATINGCOWDENS together.

“…Where are all the people going?
Round and round till we reach the end.
One day leading to another,
Get up, go out, do it again.

Then it’s back where you started,
Here we go round again.
Back where you started,
Come on do it again…”

“Lucky” Number 13

People count all sorts of things.  Among the things we count are surgeries.

Lucky13

 

Although the most recent ones have been predominantly knee related – 2011, 2012, 2012, 2013, 2014, 2015… we don’t forget the others that fit in.  And we don’t even try to talk about them without the three page cheat sheet detailing the most pressing medical information.  We don’t talk to over zealous residents without the 32 gig flash drive pulling up PDFs of old blood work and reports.  (Saved her another stick today when I could produce a recent normal liver enzyme panel!)

So today, surgery number 13, was not a surprise.  It was anticipated and planned very deliberately for months on end.

The day started before 5, scheduled for a 6 AM arrival.  But, in reality it started last night.  Bags were packed to include clothes, toiletries, snacks, electronics, chargers, and our shakes too.

We got up and out quickly.  No fanfare.  No time for a “selfie” of the three of us in our “Never Give Up” T-shirts.  We checked in just past 6 and shortly after were performing all the typical surgery routines.

It is funny.  There are two groups of people in my life- those who have similar numbers of surgeries to us, and the larger group – those who have had next to no surgeries.  The first group understands surgery “routines.”  The second group raises some eyebrows.  They are horrified at our use of the camera in the hospital.  But this is our reality, and I can pack for surgery as well as I can pack a carry on for vacation.

arrow through head

We were greeted in pre-op by about a half dozen people all asking exactly the same questions (even though they and I had the cheat sheet, we still had to play the question/ answer game.)  Several consent slips were tossed at me.  The anesthesiologist and Meghan made a deal involving the timing of the IV and the mask.  Felix was given the necessary garb to walk into the OR.  I stole a few extra minutes to clarify the plan with the orthopedist.

And I must confess there was some major anxiety.  See, the plan as I saw it was for her to have the AVM embolized while the orthopedist cleaned out and searched for the elusive “leak” in the artery.  That’s why we coordinated surgery times.  Except, as it was presented to me today – the vascular guy wasn’t touching the AVM unless it was absolutely necessary.  This was a far cry from the report after the MRI in January when we were told another embolization was necessary.  But, it was now in the moment.  They had a plan and I had to play along.  The orthopedist promised me the vascular guy would be there while he poked around at the beginning in case he was necessary.  He also promised me he would do his best.  What more was there to ask, I guess.

In the waiting room I thought.  Too much.  But, when I was just about insane with my thoughts, I let them wander to Ashton and Suzannah, and the number of hours involved in EACH of those procedures, and I tried to feel better.

After about three hours we were greeted by the orthopedist.  His words were varied, but included “not as bad as I expected,” “quarterized several spots that were leaking blood,” and, “cleaned out a good deal of scar tissue and debris.”  He gave us some pictures to see his work, and left us to meet up with Meghan in recovery.

She woke up slowly, but well, and soon she was alert.  While she spoke to her dad I fielded detailed questions from several more people who held the cheat sheet. I took out my copy and obliged them with answers.  She woke in the most terrible kind of pain, curtailed by a dose of morphine and some ice.  Lots of ice.  For Meghan.  And for me- as I managed to bang my head on the table.  Insert exhaustion here.

exhausted

The pediatrician on call was relentless reviewing the three sheet medical history.  Eventually we got our room, and some time around 2 we were greeted by friendly nurses, a nice bed, and some more pain meds.

Things were settling a bit until the “Inquisition” took place in the form of that previously mentioned pediatrician.  I have to tell you she succeeded on really aggravating my last nerve.  She actually handed me her copy of the “sheet” which had been copied to just about every department so she could ask me the same questions.  By now the fatigue was starting to set in.  I resented the implications that it was somehow my fault no one was “running” my daughter’s medical care but me.  I explained carefully that I was jaded by years of dealing with sub par medical professionals.  She did not take the hint and proceeded to contact my pediatrician to tell him she disagreed with one of Meghan’s medications.  Whatever…  Truly.  Spend some time learning about Cowden’s or ANY Rare Disease.  Then we’ll talk.

'I'll give it to you straight - This disease is almost IMPOSSIBLE to pronounce.'

Arrogant self- importance.  Ugh.

We were called down to radiology at 2:30 so the feet could be X-rayed.  The orthopedist believes, acknowledges, and is searching for an answer on the foot size discrepancy.  Results tomorrow.  In the mean time his caring makes him my current favorite.

Pain medications in place.  Crutches safely in the corner.  Lights are off.  Movie is on.  And the day is just about over.

cartoon-dog-holding-crutches-4589354

Tomorrow we SHOULD be home.

For now, number 13 is in the books.

thirteen

And my happiest news of the day came when the anesthesiologist said

my girl was “stable and strong” during surgery.

The little things are HUGE!

Thankful for the prayers and the guardian angels…

Tomorrow is a new day for BEATINGCOWDENS…

Now, we rest…

Hurry up… and waiting rooms…

The early hour usually means I would be at work.  Instead, I am sitting on the 10th floor, in the waiting room.  Again.

Right now my beautiful girl in undergoing surgery number 13, the 6th on her knee.  The goal is to stop the blood that has been leaking into her knee and causing degeneration and chronic pain.  This time there is a new doctor at the helm, an orthopedist from Long Island.  Our vascular guy, the leader of surgeries one through 5 on that same right knee has taken a back seat.  He is on standby.  We are sitting.

Waiting.

Alone with our thoughts.  Not always my favorite place.

These last few weeks have been a whirlwind.  When we met the orthopedic surgeon in February, and Meg said May was a good time for surgery, she had certainly calculated her plan.

Over the last few weeks, we have been busy packing in as much good stuff as we could fit.

The school play, her first production, was April 30, and May 1.  It was such a thrill to watch the spirited enthusiasm from my daughter and all the other children.  She is hooked.
 And while drama practice was going on 5 days a week, she was still making three swim practices a week, working hard to finish out strong.  As a result she received the “Coaches Award” at the team dinner last week, and she was moved “up” a level.  She was able to practice with her new group starting Monday, so she got in 2 practices before this procedure will derail her for a bit.


She also almost finished the CYO Swim season.  Making 7 out of 8 meets (the last one is May 9th) she swam hard and strong one day each weekend as well.

In the midst of all this, she managed to balance her time well and was inducted into Arista, the National Honor Society.

All the while we looked for spring clothes, and shoes (in 2 different sizes) for my beautiful 5 foot 5 young woman.

I know there are people who are busier.  I know multiple kids jostles the world.  But, I also know I am proud.

She ran on raw nerve.  She pushed and pushed in ways that would have taxed a healthy child.  And she made it.  Sunday’s morning swim meet was a no – go, but I am just so impressed she accomplished all she did.

And just for fun she broke her first pair of glasses yesterday. Not bad for a kid whose had them since K. New pair already on…

 And I’m impressed I got her there.

We like to convince ourselves that we are just like everyone else.  But the reality is that this genetic disorder messes with our bodies and our minds.

As I said to the nurse this morning when she wondered why Meg was a little edgy,  “It’s not you.  You are just an ACCUMULATION of her life.  Step by step.  Poke by poke.  Surgery by surgery.”

I think she got it.  Maybe.  As the woman in the bed next door in preop – clearly in her 60s, said she had never had surgery before.

So very hard to believe.


I’ll update later.  I’m waiting.  Cheering my kid on as she continues to be BEATINGCOWDENS.

To My Daughter’s Team of Medical “Professionals…”

I went to college, and graduate school, and took 30 credits above my Master’s Degree in Education.  I earned a job as an elementary school teacher, in the school I attended as a child.  And, after 18 years on the job I still love those moments when I am alone with my students, and things just “click.”  But, nothing happens by accident.  And despite the belief that a teacher’s day ends at 3PM, many a long night has been spent with those very students in mind, planning lessons, and creatively trying to reach them where they need to be met.  I am not always successful in my execution, but I am confident in my planning and preparedness.

Because, you see that is what I was always told a professional is, and does.  You LIVE your “job.”  You are still the teacher, in the mall, in the restaurant, or even in CVS.

As a professional educator, I take pride in TRYING to meet the needs of my students at their level.  It is my responsibility to help every child, not just the easy ones.

But, lately I am wondering if every professional has that same feeling.

Now, I mean no offense to the various healthcare professionals who go above and beyond for us, and for their other patients.

It’s just, well, the rest of them.

Having Cowden’s Syndrome sometimes feels like, well like I would imagine it might feel to have a plague, or leprosy.  People, doctors, whomever, look at you tentatively.  They look with caution.  They don’t want to get too close.  They are afraid to treat what they don’t understand.

And worse – no one wants to be in charge.

We are the worst kind of liability – more dangerous than a safe full of cash or a rare artifact.

Everyone wants to see us, all the time.  But, they just seem to want to check boxes that say they’ve met their “I’ve seen a Rare Disease” quota, and send us on our way.

I am the CEO of my daughter’s medical care, and while frighteningly competent to do the job, NO ONE is listening to me.

To My Daughter’s Entire Medical Team:

You are dropping the ball here.  Someone step up and take charge.  Talk to each other.  Get your egos out-of-the-way.  LISTEN to me.  LISTEN to her.  Put her picture on her chart to remind you she is a REAL person.  

She is charming and beautiful.
She is charming and beautiful.

Believe her when she says it hurts.  Even when it is not “supposed” to.  Validate her.  

And sometimes. as unpleasant as it is to see, there is lots and lots of very real pain.
And sometimes. as unpleasant as it is to see, there is a lot of very real pain.

 

She talks a lot when she’s nervous.  Care about what she has to say.  Care that she is nervous.  Learn about her love of swimming and reading and performing.  Adapt your plan, your day, your treatment to fit MY child, just as I would do to yours in my classroom.  Treat her as a whole person.

We are tired of spending hours in the car, missing practices and play, and relaxing time, just for you to feed us a line of “maybe,” “watch that,” and “come back.”  We are tired of going places where no one wants to give us answers, or even answer our calls.

We are tired of surgery.  But we do it.  Over and over.  

It's a real person enduring those procedures.
It’s a real person enduring those procedures.

Call back when I have questions.  Like within 24 hours.  Because I carry my phone until it leaves an imprint in my hand when I wait for you.  Nothing else gets my concentration while I wait for the ring.  I carry my list for fear of missing that precious window with you.

Oh, and by the way, the foot with the AVM had stopped growing. Take a look. Someone.  Please.  It’s a bit disconcerting.

She’s hot.  Often. And at odd times. And I’m not just talking a little uncomfortable.  Anyone want to help address that one?

And yesterday the dermatologist said it’s a vascular malformation in her hand.  Another one.  Please don’t tell me it’s not all connected.  I’d rather you tell me you don’t know.

Don’t ignore her symptoms because you don’t understand them or can’t explain them.  Trust me when I tell you, she’s not making it up.  Any of it.  She spends her time trying to make the world better for other people. Isn’t it about time you all got it together and started making HER world better?  

And when the knee is at it's worst, there is still a way to press on.
And when the knee is at its worst, there is still a way to press on.

The pain in the knee is constant.  Yep, I know it “shouldn’t” hurt either.  But, she doesn’t even ask for medication anymore for fear of the same issues her last pain medicine caused in her GI tract.  She just endures.  All day.  And then she goes to drama, and then she swims, and manages an average of 97% and the National Honor Society.  She limps a bit by the end of the day.  It’s the mornings that are the toughest.

To you she is one of many.  To me she is my one and only.  And this child,  young lady, has the capability to effect great, positive change in this world.  I know you are tired.  I know your schedule is busy.  I know research takes time.  Start by listening to us.  Listen.  Care.  Let her know she matters.

Then maybe, just maybe, she’ll start to trust you.  Then, slowly, together, you can try to make her life more comfortable.  Because, with or without you, she and I are BEATINGCOWDENS together.

Sincerely,

Her Very Determined, Sick of Excuses Momma Bear!

Flip It…

dead-poets-society-1

Some time in the middle of this winter that lasted forever, I started to notice people complaining about a sidewalk near my school that was often left icy and uncleared.  The grumbling that would take place was sometimes quite extensive, and I admit to spending a day or two doing some internal grumbling myself.  Then I decided to cross the street.  It was a simple idea.  Just because I had ALWAYS walked on that side of the street, didn’t make the other side a worse choice, nor was it inconvenient.  It was just different.

Soon after I decided to cross the street I found I was less cross myself in the mornings, most of which were rushed and hurried, navigating snow and ice covered streets and looking for parking safe for my very low Sonata.  One day I even found myself talking to one of the neighbors near the icy house.  She volunteered to me that the elderly couple was not well, and while neighbors did their best to keep up, it wasn’t always possible.  Made sense.  My grandparents are in their mid 90s and live in their own home.  They have kind neighbors who often clear their walkway before family can reach their home.  But, what if they didn’t.  And what if we didn’t live close?  It’s easy to judge.  I’m guilty too.  But I’m working on a simple move, we’ve come to call – “Flip it!”

bigger picture

We talk “Flip it!” when it’s something that can be fixed.  When it’s a negative thought that can be changed.

I’m not suggesting the world go all “Ms. Mary Sunshine” all the time.  As a matter of fact the person who always flippantly replies,”Could be worse,” to EVERY situation, often drives me mad.  Sometimes things just stink.  Sometimes they are even worse.  But, for most of us, for the day to day stuff, if we just grab a different perspective, things change quickly and significantly.

Problems

I think all this came to mind tonight as I sit, preparing to return to work after Spring Vacation.

This was not a fabulous vacation, but yet nothing awful happened.  We cleaned lots of things.  We saw a few doctors.  I made some phone calls. We got through some necessary spring shopping for my girl who managed to outgrow her entire wardrobe again.  Yet, I have this feeling in my stomach, this queasy Sunday night anxiety, that reminds me no matter how much I like my job, I’d rather be home with my girl.  Even in this “preteen” phase of our lives, she makes pretty good company.

rainbow not thunderstorm

So, as I started to get down, I was reminded of a dear friend, buried under more than her share of worries, who called to tell me she was being laid off. By no fault of her own, I might add, and I was jolted by the reality that the job market isn’t as good as those of us in pretty secure jobs like to think. It made me think that going to work tomorrow, in a building where I am comfortable, with staff and students that are generally nice to be around, and where I will get paid via direct deposit on the 1st and the 16th is a privilege.  The alarm will hurt a little.  But I will, “flip it.”

Shopping wasn’t easy.  There are shoe challenges for this beautiful girl whose feet are each growing at their own pace.  But, we found what we needed, even when I had to buy two pairs and toss one of each a few times.  There is a dress for Arista, and a dress for the swim dinner, and one for her grandfather’s 80th birthday.  There is a beautiful young lady.  So while the shopping pricey, that job security was a comfort.  When shopping for shoes was terribly frustrating, like a kid in a candy store who can’t eat anything she wants, we remained grateful.  In the most basic forms of gratitude, she has her mobility, she has immense upper body strength to compensate for a weak knee.  We have the means to keep her dressed as she needs.  Can’t always have what you want – but, rather what you need.  “Flip it.”

perspective

We didn’t make church as a family of three today.  Meghan didn’t leave her bed till after 1, even with the blinds wide open and the bright sunny day on her face.  The fatigue was too much.  The thyroid hormones still unbalanced.  The exhaustion from just being “normal” is too intense sometimes.  But I got there.  To celebrate our pastor.  To worship in a room full of kind souls.  To watch a baptism, and to pray.  I was alone, but yet I was reminded that I am never alone.  “Flip it.”

On April 20th we will make an unscheduled stop to the dermatologist.  There is a suspicious mark on Meghan’s side.  While no one is panicked, living with Cowden’s Syndrome, and our obscenely high cancer risks, make everything all the more unsettling.  We will get it checked, and hopefully it will become quickly a memory.  But, we won’t wait.  Cowden’s Syndrome is a burden.  There is never a break from screenings and testing, and checking.  But, we get to strike first.  And no matter how overwhelming this battle becomes some days, I am always close in heart with my loved ones who have battled cancer, and those who are battling it now.  Our screening and preventative medicine while cumbersome is a gift.  “Flip it.”

My heart and my head are full all the time.  Sometimes I can keep it in check, and other times I need to remind even myself to find  way to “Flip it.”

In every house, on every street, in every city, in every state, in every country in the world, EVERYONE HAS SOMETHING.  It is our awareness of others, our ability to see things from another perspective, to know when to make others laugh, and when to hold their hand, to know we are not alone in our struggles.  That is how we define where our life will go, and the mark we will leave on the world.

-always-be-kind

We remain – BEATINGCOWDENS…

Here Comes the Sun…

It’s not unusual at all that a classic Beatles song would show up on a classic rock station in the car.  And I could write it off as mere coincidence.  But, there was my Dad this afternoon.  In the car, with the sun shining.  Reminding me…

“Here Comes The Sun”

Here comes the sun, here comes the sun
And I say it’s all rightLittle darling, it’s been a long cold lonely winter
Little darling, it feels like years since it’s been here

Here comes the sun, here comes the sun
And I say it’s all right

Little darling, the smiles returning to the faces
Little darling, it seems like years since it’s been here

Here comes the sun, here comes the sun
And I say it’s all right

Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes

Little darling, I feel that ice is slowly melting
Little darling, it seems like years since it’s been clear

Here comes the sun, here comes the sun
And I say it’s all right
Here comes the sun, here comes the sun
It’s all right, it’s all right

Dad never worried much.  And that had its down sides – I’m not going to lie.  But there was this calm about him that I was able to appreciate more as an adult.  I would call him all spun around, and somehow without belittling what I was worried about, he was able to help me take a few deep breaths.

Our problems here are real.  They are ever-present.  They can captivate, and get a downright choke-hold if we let them.  The worries are real.  The concerns about the future.  About mobility.  The concerns about the present.  About pain.  About fatigue.  About swelling.  And looming surgery.  The long-term effects of an AVM that seems to be affecting foot size, knocking a growing girl off-sides.  The concerns about the uncertain make it hard sometimes for me to find the sun.

There are normal “issues” too.  Ones we don’t write too much about here.  Bumps in the preteen world.  Learning as we go.  Along together.  Grateful for what, and who, we have to work with in this house.

Yesterday it was dark.  Really, really dark.  My gut drew me to the cemetery, where I hadn’t been for a while due to the snow.  And as I walked up the hill I saw the white piece of granite.  I think I knew it was going to be there.  And simultaneously I was glad and sad I was alone.  I cried like I haven’t cried in quite some time.  There is something about the reality of loss etched in stone.  The permanence strikes in a whole new way – and its like being kicked in the teeth all over again.

There's a certain finality of reality etched in stone...
There’s a certain finality of reality etched in stone…

I sat in the car too shaken to drive.  And I called my husband, and then I called Alan.  Alan is one of Dad’s Marines who has stepped into my life in such a huge way over the past year.  We have yet to meet, but we have spent hours on the phone.  He has laughed and cried with me.  He has told me stories of things, and people I needed to know.   He sent me a book a few months ago called “90 Minutes in Heaven” and simply wrote, “Read this.”  I haven’t read a book in quite some time, but I did as I was told… and I was so grateful.  My Dad merited a Purple Heart during his service in Vietnam, but technicalities being as they are, it won’t be awarded.  Alan’s efforts on Dad’s behalf over this last year and a half were Herculean.  Marines never leave a brother behind.  So, as I viewed the government issued headstone, without the Purple Heart I had envisioned, and fought for, it stung a little extra.  But just when I was about to crumble these two birds flew in low and close.  There was a peace about them as they flew past into the park.  I understood.  It’s about way more than the awards.  It’s about the love.  And the peace.  And the lessons learned.  And the heart and eyes open for growth.  And “Uncle” Alan made me text him when I got home.  Another testament to his love for his “brother” extending right to me.

90-minutes-in-heaven-9780800759490

This morning we all made it to church.  It hasn’t been an easy feat these last few months.  We three entered Castleton Hill Moravian, and I was struck by the sense of warm familiarity.  Next Sunday, Easter Sunday, will mark two years of membership for us.  Never did I expect to leave my home church.  Never will I quite get over that loss.  But, I am amazed, impressed, and inspired by the way my husband and daughter have become motivated members of our new church.  Gratitude.  Palm Sunday, a day of ‘Hosanna’ and celebration, foreshadowing the lowest days, leading us to Easter Sunday next week, and the promise of the Resurrection.

hosanna

The winter was too much.  In so many more ways than the relentless weather.  The worry.  The heavy hearts.  I missed Valentine’s Day, and St. Patrick’s Day, and never took the eggs out for Easter.  I didn’t realize how very much I needed the sun- literally and figuratively.

sun

 

Today Meghan swam.  Another CYO meet.  She blew my mind.  Again.  I can not for the life of me get over her stamina in the water.  It’s her “happy place”  and she’s most terrified of her upcoming surgery because of the time she will need to be away from the pool.

Her team loses every meet.  But the friendships they form, and the positive attitude can not be traded for high scores.  She became a swimmer because this team took her in when she had never swam competitively.

The 25 fly… (red cap)

The first leg of the freestyle relay.

We had friends spontaneously show up to cheer her on today.  Perhaps they sensed the lowest lows…  We spoke of summer, and gathering in the yard – just because.

We drove home with the sun warming the car.  The temperature read 50 degrees on the dash-board.

This week we will wait for the results of the blood drawn Saturday.  This week will be just 4 days as Easter Vacation approaches.

“Here comes the sun… and I say It’s all right…”