“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…”

“Cancerversary- a celebration of life BEYOND cancer”

To some people the idea of celebrating a “cancerversary,” or the anniversary of the day you became a “survivor,” is silly.  But, to someone who is date obsessed, it makes sense to celebrate the victory.  It’s not about remembering the bad.  It’s all about celebrating the good.  The reality of the here and now.

This morning my daughter handed me this letter – typed from her computer by her own hand.  I am sharing it – as it was written – with her permission.

Dear Mom,

 

I love you with to infinity and back. You are the best mom I could ever ask for and I am so glad that you found the breast cancer early. I could never imagine a life without you. You have always stood by my side, and protected me. Even when I say, or do some stuff, I hope you know that that does not change what I feel towards you. Love. Compassion.  You have been my guardian angel in small ways and big. You make sure my shoes don’t get eaten!, you hold me tight and talk me through tough nights, and you are always there for me when I am in pain. When I am in the hospital you are there when I can’t walk, when I cry out in pain, and when too many thoughts come rushing into my head. You have this unique ability to just make people smile, and you are the most pure-hearted person I know. You do for others, even though often you never get a thank you, or some king of acknowledgment. You are kind to a fault. Mom, you have made such a big impact on my life, I would not be me without you. You know what, if I kept going on, it’d be the year 3001! Anyway, back to the point. I love you more than you could know, and I am so grateful to have you as my mom.

 

I love you mom,

                        my guardian angel

 

Meghan

 

Really?  What more could I want?  Except for a LOT more “cancerversaries” to watch her grow up and change the world…

daughter

The Heart of a Champion – an open letter to my daughter

Dear Meghan,

Today Daddy and I watched you swim in the Silver Championship meet.  It was your first qualifying meet, and it won’t be your last.  We find it amazing that you qualified, and for the 100 butterfly no less, in only your second year of swimming.  To say we are proud would not even begin to define how we feel.

Today was just another example of how you amaze us, astound us and impress us.  I know, parents are supposed to be proud of their kids.  I get it. But, when I think of what you go through each moment of every day, I truly am left in awe.

I get that you like swimming because you can feel “normal.”  There is no special treatment in the pool and the clock forgives nothing.  Cut times are clear and either you make it or you don’t.  Believe me, I don’t look to make excuses for anything or anyone.  You know that I can be kind of tough.  (I get that from Grandma, along with a bark that’s worse than my bite… :-))  But sometimes in those moments when you are your toughest critic you have to allow yourself the same forgiveness your warm heart offers to others without hesitation.

affirmation206

Living with Cowden’s Syndrome is a tenuous balancing act.  To stay on top of things the way you do takes intense effort.  I think most people would be physically and emotionally exhausted to live your yesterday – let alone your every day.

Last night when your back gave out, and the pain was too intense for me to even touch you, I gave you every out.  I gave you every excuse not to swim today.  You wouldn’t hear of it.  Your hips, the exact point you need your force to kick for your favorite butterfly were tender to even the gentlest touch.  It took you hours to rest because your body allows nothing to contend with the pain.  So I held your hand as you wiggled and squirmed for hours.  I reminded you I loved you as you desperately tried to rest.  I stroked your head when you finally passed out from exhaustion.  And I was glad the lights were off to hide the tears that stained my face.  Tears, not of pity, but of grueling agony of watching my dearest love suffer some more.  I knew as I laid there it was unfair.  That your knee was still hurting too, and now your back.  I knew I made no sense for all this to be coming the night before something you wanted so badly.

A-champion-is-someone

That defines your life.  Sometimes the hits are small and consistent.  Sometimes they come out of nowhere, but you just keep going.  You just keep fighting.  And truth be told, you inspire me to do the same.

Yesterday we went to look at shoes.  You’ve been complaining for months that your left sock is tight.  The orthopedist measured your feet and acknowledged the 1cm difference between them.  But, I don’t think either of us took in the reality until we were in the shoe store and saw this.

Left Foot
Left Foot
Right foot (AVM leg)
Right foot (AVM leg)

Another realization that we needed to go about things a different way.  So we picked out your shoes, ASICS GT 2000 3 in a 9.5 and a 10.5 and we spoke to the store manager at Dick’s.  He will help us.  Because we asked.  But, I know it got into your head.  The wonder about the upcoming surgery in May and the worry about what this AVM is doing to your knee in its spare time.  And I HATE not having any answers for you.  But I don’t.  I can only promise to be with you every single step of the way.

And as I got your pills out yesterday morning, and I helped open your thyroid pills, I thought about the year since you had a complete thyroidectomy.  It was just over a year ago you became a thyroid cancer “previvor”  when your 19 nodules, including three precancerous ones, came out with your thyroid.  It occurred to me for about the 5,000th time this year, that your thyroid is STILL not balanced.  We don’t give up.  We keep trying.  But its you who has to wake up every day and function  ok soar, with levels that would leave people 2 and 3 times your age crying in their beds.

So when you took the block today, I took a moment to take it all in.  I took a moment to take a good look at you, and I swear I could see the heart of a champion beating in your chest.  I saw your green and black suit, and your prescription goggles, but in that moment I saw your raw heart.  I saw the feisty determination that gets you through each day.

7ebd4451f512f1bcda44e2ca17b79368

You might not have seen your best time on the board.  But, me, I saw a champion.

The free dictionary defines a champion as:

cham·pi·on

 (chăm′pē-ən)

n.

1. One that wins first place or first prize in a competition.
2. One that is clearly superior or has the attributes of a winner: a champion at teaching.
3. An ardent defender or supporter of a cause or another person: a champion of the homeless. (or those with rare diseases – Ok I added that)
4. One who fights; a warrior.
And while you may not get a first place medal, you have won by walking through the door.  You have overcome greater odds than anyone ever really knows.
You take the high road, even when it’s the tougher one to walk.  You put other people first.  You advocate for those less fortunate.  You stand strong for what you believe.  You excel in school.  You soar at your extra curricular activities, and even within the pain that is relentless, you are an athlete too.  You my girl, are a warrior, a true champion.  Because as you get older you will come to realize that success is not defined by the highest grades, or the most first place ribbons.  Success is defined by your character, by the person you are.
sports-inspirational-quotes
So my girl, when you lay your head on the pillow, know that I admire you with every aspect of my soul.  Know that I respect that you daily work to be the best YOU, you can be.  Know that YOUR BEST is ALWAYS good enough.  Know that your compassion changes people.  Know that you, in your own way are making an impact in this world.  And most of all, know that you have two parents who love you more than you can possibly understand.
Thank you.  For being more than I could have ever hoped for in a daughter.  For even though we will hit rocky roads sometimes, we have seen so much, side by side and hand in hand.  You my girl, have the heart of a champion, and there is no one I’d rather travel this bumpy road with than you.
All my love always,
Mom
quote-athlete-inspirational-motivation

World Rare Disease Day – Advocacy and Awareness

World Rare Disease Day is February 28th.  Although the actual day is February 29th (the rarest day…)

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It is a day of raising awareness across the globe about the 7,000 rare diseases that plague 1 in 10 people.

Our fundraiser has ended for the year.  Our checks have been sent.  All that’s left for tomorrow is our denim ribbons and our shirts.  This day is right up Meghan’s alley.  Meghan, whose entire platform has become raising funds and awareness, relishes a day set aside for just that.

Although some days I suspect it would be easier to be an advocate, rather than a patient AND advocate, I suspect   am sure that we are more effective advocates BECAUSE we are patients too.

care_rare

I get that not all diseases, ailments, or medical issues are “RARE.”  I also fully understand that that doesn’t make one more important than the other.  It’s just that when you have a chronic illness, life is really challenging.  When you have a chronic illness BECAUSE of a RARE disease, that really has NO treatment, and definitely NO cure, some days the hill seems insurmountable.

I love someone rare

I texted my husband yesterday afternoon to let him know I was going grocery shopping.  He told me I was nuts.  A week post-op from vascular surgery that put 25 incisions in my right leg, he might have been right.  Except he didn’t argue.  Timing would not allow him to go.

Grocery shopping in my house is an endeavor.  I cross a bridge, and hit not one, but two stores – miles apart before returning home after about a 4 hour round trip.  It’s one of the few things easier in the winter – as I don’t have to pack ice!

Why such a journey?  Meghan.

Among other things I have learned from my daughter, she has inadvertently schooled her parents on the value of nutrition.  Meghan has had food “issues” since birth.  Slowly we have played and peeled away and adjusted her diet to be free of Gluten, Casein, and Soy, as well as most dyes and preservatives, and highly acidic foods.  She takes digestive enzymes with every meal, and a host of nutritional supplements.

She went from grossly behind in speech/ language to miles ahead.  She surpassed extensive sensory issues.

I don’t cook.  Ever.  But, I shop.  And it’s my job to make sure the tools are in place to whip up tasty meals for Meghan, and all of us.  My husband never disappoints.  He is creative, tasty, almost passionate about Meghan having a culinary experience she will enjoy.  He is fantastic.

I shop at Wegmans.  And at Whole Foods.  Most things Meghan eats are organic, and  by default a lot of ours is too.   My grocery bill is usually about half a mortgage payment every 3 weeks by the time I feed the dogs too.  It is the sole reason we don’t settle all out debt.  And it is worth every penny. Nutrition is without a doubt the best investment I have made into the health of my child.

The game changer was the addition of a nutritional cleansing program I have come to trust into her diet.  Felix has been using it for almost three years.  Meghan and I for about 18 months.

Felix needed to lose weight.  But almost as an after effect, after losing 50 pounds, he noticed he felt great.  I cautiously introduced the product to Meghan in slow, low doses.  Once I was clear she had no reaction, I went all in.  For well over a year now she has had a protein shake for breakfast every morning, and since starting school she takes a meal bar for lunch on school days.  Over 40 grams of healthy, well-digested protein a day, and this child has done nothing but grow!

Growth spurt?  Maybe.  But the hair, the skin, the nails, the teeth.  She glows of good health.  She missed her shake for 2 days a month ago.  She had a tough swim and felt awful.  Coincidence?  Maybe.  But she’s not even taking chances any more.

In my house we have a protein shake every morning, and Meghan has some organic, home-made waffles too.  We don’t just trust any protein shake.  Ours is high in whey protein from “happy cows” in New Zealand.  And my girl who can have no dairy at all without severe pain – tolerates these like nothing.

isagenix shake

Leaves a mom to wonder- maybe it’s not a “dairy” allergy, as much as a “what’s fed to the cows” allergy?

I could debate processed vs. natural vs. organic all day.  What I have here is results.

When you are fighting a rare disease, you need to have the best food in you as possible so you can battle like a champion.

Meghan got out of swim practice tonight.  She never gets out of the pool.  Her coaches know that.  I know that.

“It hurts Mom.”

Dropping stomach, smiling face…

She knows.  All of it.  Whether I say it or not.  She misses nothing the doctors say, and despite my wishes they ALL talk right in front of her.

She has earned the right to sit out.  Her coaches know how hard she works.  She waited for starts – to get a few in before Sunday’s Silver Championship meet.

On the way to the car she told me she wasn’t sure the knee would hold till May.

strength

I am still waiting for a call back from the orthopedist from last week.  Apparently her notes are being typed.  He can’t possibly speak to her case without them.  He saw 65 patients the day we were there.

The knee is swollen.  We will try ice.  Hopefully that’s it.

“What if it’s blood?”

“What if it’s not?”

That’s kind of how the conversation went.

Truth is, neither of us know.  So we will press on.  We have the main plan – the one that lasts till May.  And we have the back up.  The one where we just yell “plot twist!”  and go with whatever happens.

Why did I go grocery shopping last night?  For Meghan.  For her food.  And so she sees me press on.  Despite being hurt.  Because if I don’t press on through tough times, how can I ask the same of her?

My Mom may not have a “rare disease,” but I learned stubbornness, stamina and work ethic from her.

Rare Disease Day 2015.  It’s not so much about “celebrating” as it is about advocacy and awareness.

Because the under diagnosed, the underfunded, and the often ignored – matter.  Very much.

We are BEATINGCOWDENS… One day at a time…

Global Genes hit this one spot on!
Global Genes hit this one spot on!