“Stay Alert! Delays are Possible!”

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I saw the sign Friday, somewhere along the Pennsylvania Turnpike.  I laughed, in spite of myself.

We were headed on a 400 mile road trip to West Virginia, a trip I was making for the second time, and Meghan for the first.  Last weekend in June to celebrate Alan’s birthday.

As we traveled through the hills of PA, I became somewhat accustomed to shrieks of joy, as the landscape at times was utterly breathtaking.  And, there were cows.  Overwhelming for a young city girl, not given too many opportunities to travel out of a small radius.  The camera barely stopped.


I was thinking about the list of things creeping into the month of July already.  There are 8 appointments and a surgery for Meg already scheduled.  I am annoyed, not so much at the surgery, as I am about the time constantly taken to try to stay on top of this cancer -causing, tumor-provoking, life altering nightmare called Cowden’s Syndrome.

Meghan’s next major procedure is Friday July 22nd.  The pathology on that procedure will determine what, if any, delays are possible in the future.

“Stay Alert! Delays are Possible!”

There wasn’t much traffic on the way to West Virginia.  The trip itself took us a little over 7 hours.  We arrived before 9, and blended right into easy conversation on the porch.  Alan, his family, and some friends, welcomed us warmly.  They greeted Meghan as if they had known her for years, and treated me as if I stopped by every few days.  All of this oddly comforting.  In reality I met them for the very first time last June, and Meghan was meeting them that night.

 

 

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img_7548Yet, we had known each other for longer in ways that matter.  These men, most of them, were Marines that had served with my Dad some 45 years ago in the jungles of Vietnam.  These men knew my father during a brief time in his life that undoubtedly changed and shaped the man I later knew.

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Alan was the first to reach back to me when I sent a letter to Dad’s 1st Amtrac Batallion, 3rd Marine Division brothers.  I was, at the time researching an incident that we felt may have warranted a Purple Heart for Dad.  I sent over 20 letters that week in January 2014.  I heard reply from every living Marine I contacted.  EVERY SINGLE ONE.  They spoke to me, and comforted me.  Those who remembered the incident wrote letters of support.  All told me that as the daughter of a Marine I was one of theirs.  I was to call on them as needed.  It seemed surreal.

But Alan stayed in touch.  Close touch.  We spoke, and still speak via text several times a week, and often by phone at least once a week.  As he worked every angle he could for a Purple Heart that not earned in the technicalities of the USMC, we grew in friendship.  And over time I came to realize that the relationship we had built filled a larger hole than any posthumous medal could have.I do not mean ever to saint my father.  Nor do I mean to make excuses for him.  There were some terribly rocky times in my childhood that can not be repaired.  But, we had time to make peace years before he died, and I started to understand a few things.  A few really important things.

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Now, we were in West Virginia, keeping time with 5 Marines who served with Dad.  They were wounded; physically, emotionally, or both.  They shared stories.  They shared PTSD.  They shared tales of failed relationships, and difficult feelings of guilt.  They verbalized what Dad couldn’t.


And Meghan, oh did they take her in!  One by one, as if helping my father make up for lost time, they spoke and laughed and listened.  They got to know her.  They cared.

Saturday morning Alan’s grandson took time out of his day to teach Meghan to shoot a compound bow.  It was something she had always wanted to do, and circumstances had not allowed.  So, here we were in the hills of West Virginia.  And there was her lesson with the bow.  Arrows on target.  Success.

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A few hours later we were on a farm with the Marines.  We rode a “side by side” through the farm and got to take in views we would not have otherwise seen.  Then, Meghan was invited to shoot a rifle.  With a little hesitation she was guided.  And I watched as her tense face turned into a smile.  There were 4 paper targets 100 yards away.  She fired several times and hit paper repeatedly.  First try, “Oddly relaxing,” and successful.

Maybe because we live in the zone of “Stay alert!  Delays Possible!”  that seizing the opportunities as they present themselves is even easier and more logical.  I didn’t shoot a bow or a rifle, so I can’t be sure.  But, she is clearly not shy about learning new things.

The birthday party ballooned to over 50 people in the driveway and garage of this beautiful home.  There was mingling and talking, mostly with people I barely knew.  Meghan found the time to chat with each of the Marines.  She asked questions.  She got answers.  And, in some cases more questions.  But they each took time to speak, honest, and frank, about their experiences, and about her Grandpa.

I stole away some time to lay on the front lawn and appreciate the flags while enjoying the relative quiet of a “busy” street.


Meghan was met with generosity of tangible items, and generosity of kind spirits.  She now has a money clip and some Vietnamese money from the era.  She also has some special paintings, and a walking stick.  The latter two were gifts from “Uncle Moe,” who was a bit older than the rest.  After 3 tours in Vietnam, and 22 years as a US Marine, he had some tales to tell.


When she  asked what she should know about the Marine Corps., she was told “Brotherhood”.  The simplicity and depth of that answer was playing out over the weekend, and it made sense in concept and in real-time.  These “brothers” trained to never leave a man behind.  And in our case, that included his children and grandchildren.
The weekend went too fast, and before it was time to leave we even sneaked in a visit with some pigs down the road.  City girls have to make the most of things when they are around!

 

Preparing to leave on Sunday was harder than logic says it should have been.  But, we had spent the last 2 days enveloped in a Marine Corps “sandwich” of unconditional love and support.  We know now with these Marines there are no “goodbyes,” only “see you soon!”

As we drove I don’t think either of us spoke for at least 75 miles.  The enormity of it all was tough to digest.

She held the walking stick in one hand and the money clip in the other, wanting to make the weekend longer than it had been.

I cry often.  Meghan, not so much.  Yet, both of us were choking a bit.  It was the kind of experience that changes you.  The simple beauty of just fitting in.  Just because.

“Stay Alert! Delays Possible!”

Not just traffic delays, but real life ones too.  As we began the 400 mile trek home we contemplated Monday’s appointment in Manhattan – a quick toss back into reality.


I pondered whether it was right to show Meghan this world, and then take it from her so fast.  But, I knew it was.  It was a part of her.  A part of her history.  A part of her life.  It was something that I do not fully understand, and yet I needed to expose her too as well.

Dad was not a saint.  But, he loved us. Deeply.  There was never a doubt about that.   Even as he began to heal, he often struggled to find ways to express it.  It was a battle in progress, and he was winning.  But, he was called home before he could quite finish.

So, he left it to his “brothers,” his Marines.

And they did a good job.

This weekend was for the soul.

There’s plenty of time for

#beatingcowdens 

this week.

 

The Days are Long, but the Years are Short…

 

A wise person once told me this.  I think Meghan was young, and in that two-year span where most of her time was spent screaming.  I admit to wanting those days to end when I was in the middle of them.  And, while I miss some of the cuddling, truth be told, I’m not sorry I wished THOSE days away.

It’s the rest of them.

From the time she stopped screaming, she’s been pretty cool to be around.  And now I look at her eye to eye.  While she’ll always be my baby, the years seem to be flying by.

This week I had to explain to her middle school that she would NOT be taking 9th grade math in 8th grade.  For some people this makes a lot of sense.  For us, not so much.  I’m all about the foundation of math, and building without the 8th floor seems silly to me.  Plus, really, there is nothing wrong with taking 8th grade math in 8th grade.  What’s all the rush?

When Meghan was born she had seven great-grandparents.  Two of them she never met in Puerto Rico, but still seven great-grandparents.  Insane.

She also had 5 grandparents.  That’s a lot of love.

But, I also remember clearly a colleague at work commenting, “That’s a lot of loss she’ll have to endure.”

Three of the most important men in my life.
Three of the most important men in my life.

I was indignant.  Annoyed when she said it, because even though my conscious mind knew it to be true, I was not one to sit around and think about it.

We had Cowden’s Syndrome to digest.  We had major league health and emotional issues to manage, and I couldn’t allow fear to envelop us.

I surrounded her with the grandparents and great-grandparents as often as I could.  And every year that ticked by was a blessing, because she built her own memories and relationships with each one.

The fathers and grandfathers...
The fathers and grandfathers…

Then, in June 4 years ago, in 2012, we lost GGPa, Grandpa Al – Ken’s Dad.  He was so much a part of our lives and our family.  Ken embraced us as his own when he married Mom, and his family was no different.  And Meghan and GGPa… well, she was his “Sapphire,” and they could certainly light up each other’s eyes.

In the fall of 2013, Grandpa Tom got sick.  He was never ever sick.  But, this time it looked very wrong.  And it was.  In about 3 months time, he was gone.  Snatched away at 65.  He had made such an effort to be around Meghan.  He was so deliberately making up for lost time and I loved him for it. They had their own set of memories…

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A few months later, in October of 2014 Great Grandma Gen headed up to meet the angels she missed for so many years…

And then in March of this year our beloved “Pop” was gone.  Pop was larger than life.  And even at 96, seemed almost invincible.  Until he wasn’t.  The ache is deep, and raw.

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Five years ago I bought so many Father’s Day cards, people would laugh at me.  Five years ago I remember telling Meghan how thankful I was to need to buy that many cards.  Five years ago, I couldn’t have predicted…

So much has gone on in our lives on a medical front.  If I count loosely I would say it’s been about 10 surgeries between us since that Cowden’s diagnosis in 2011.  So often we feel like we are bouncing from one hospital or appointment to another.  So often we are scheduling appointments instead of relaxation, surgeries instead of vacations.

But, we make a point to stop.  To try.  To focus.  Yesterday was a tough day.  The pain was a bit overwhelming at times.  But, the gratitude runs deep, for the family we have.  For Felix, the best husband and father we could have ever asked for.

Felix took some of Pop's tools from his car, and brought them back to their glory.  Those two had their own special bond.
Felix took some of Pop’s tools from his car, and brought them back to their glory. Those two had their own special bond.

Tonight there was wonder in Meghan’s eyes.  She saw the first fireflies of summer after swim practice.  They went out to get a closer look.

And I peeked out onto the back deck to catch a glimpse of my 5’8″ daughter on her father’s shoulders – to get a better picture of the sunset.

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A better view on Daddy’s shoulders – no matter how tall! 🙂

I smiled, in spite of myself.  Tonight it’s not about the weeks ahead.  Tonight it’s not about the next surgeries and appointments.  Tonight, it’s about tonight.  It’s about going to bed a little later so as not to miss the little things.

Tonight is about making memories.  The little ones.  The ones that matter.  The ones you carry in your heart forever.

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The Days are Long, but the Years are Short…

And we remain forever

#beatingcowdens

Punched in the Stomach…

…over and over and over again.

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Sometimes that’s the best way I can think to describe it.  There are days, so many days, when it’s like a sucker punch that takes your breath away.  It’s not going to knock you to the floor.  You’re stronger than that.  But, man, it knocks the wind out of you.

First, it’s the drive.  The traffic.  The hours spent headed to the appointment.

Then it’s the “hurry up and wait,” as you strive to be there for your 2PM appointment that COULD NOT be changed to later.  Only to wait until after 3 in the waiting room.

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After that it’s the news.  No matter what the appointment is, a Cowden’s Syndrome appointment rarely ends with overwhelming optimism.  Well, because they are all so unsure.  So they are afraid.  And I get it.  But, then they tell you the parts they DO know, and you sometimes just want to sit in the corner and bang your head.

THEN after all that GOOD fun, is the drive home.

Usually all in all about 5 hours roundtrip.  Whether it’s Manhattan or Long Island it doesn’t really matter.  It’s 5 hours at a clip that you’ll never see again.  Plus hours and hours analyzing…

About the only GOOD thing that comes from all these is the time spent chatting in the car.  Because my kid is pretty cool, and I enjoy her company.  I just wish we had more time to be together, at the beach, or a concert, or somewhere fun…

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Today it was the orthopedist.  He operated on Meghan’s knee in May of 2015.  It was the 6th surgery on that knee, all ramifications of a pesky AVM (arteriovenous malformation) wedged somewhere under the meniscus.  After the surgery there was PT, then a 6 month follow-up.

In November he released her from PT, and asked for another 6 months.  In April he was so bothered by what he saw he brought us back in 2 months.  He was troubled by her muscle spasms, and her generally being unwell.  The conversation that day led us back to the hormone she was on after the December d&c, the one with the precancerous cellular changes.  The medicine that was supposed to help keep the uterus in check.  The medicine that seemed to come up an awful lot in April as the source of many problems.  We labored over the decision and consulted almost every doctor, but ultimately decided to ditch the medicine and hope for the best.

Today the muscle spasms were gone.  Evidence that they were caused by the hormone.

But, there was another pile of information to digest.

Sometimes it’s so hard, because you ask questions, and you just don’t always get the answers you want.

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What about that right leg, will it ever match the left in strength?  Do you think the foot will catch up?

No, it’s not likely.

Impact activities, even walking over a half mile, cause knee pain.  Will this ever resolve?  Can she do anything to help it resolve?

No.

So, what do we do when we have to walk far distances?

A wheelchair.

And the conversation continued like that.  He is actually quite well spoken, but today his words hurt.

He is a good doctor, a good surgeon too.  But, he is honest.  Necessary,  And painful.

We got some suggestions for strengthening.  And a script for a refresher with our favorite PT.  Progress will happen.  It will just be slower.  It will take longer, and harder work than any of her peers.

We don’t use the word fair anymore.  It’s all relative.  Nothing is really “fair.”  But, some days it’s harder to find the bright side than others.

Some days, even when the doctor tells you it’s not right that someone your age should have so many limitations, it doesn’t make it any easier to hear.

Because the reality is what it is.  There is both gratitude and pain in the mobility she has.  Her drive, her focus, extends beyond limitations.  She wants to be free.

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Yet, somehow even on the toughest days, I have solace that there is a plan.  And it will continue to unfold for both of us.

Tonight we recover from a few sucker punches with chocolate cookies and coconut milk ice cream.  Tonight is not for the bright side.

Tomorrow will be different.  Tomorrow is school.  Full of people who do not know, or who are virtually unaffected by the realities of Cowden’s Syndrome.  And tomorrow is drama.  And tomorrow is swimming.  Tomorrow will be too busy not to press on.

Tomorrow will be for working on ways to keep moving forward.

Tonight will be for resting.

Tomorrow is for

#Beatingcowdens

N.O.S.E. an Acronym that Makes Sense!

So many things in life make no sense at all.  I don’t need to fill in those blanks for you.  No doubt you have a bunch of your own things in mind.

The illogical is part of our existence here.  What we do with it is what defines us.

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Meghan’s right foot stopped growing a few years ago.  I didn’t notice for a little while.  She was already wearing a size 9 in the 5th grade.

She had had 5 surgeries to embolize an AVM (arteriovenous malformation) in her right knee.  At some point they theorize that by slowing the blood flow to the AVM, the blood flow to her lower leg and foot also slowed, stunting its growth.

Now, on the surface that may not sound like a big deal, and I guess for a while it wasn’t.  Most people have feet that are slightly different sizes, many a half-size off.  Most people are still able to fit them into one pair of shoes.

But the left foot kept growing.  Right now it’s stalled at a 10.  We can’t be sure it it’s done.

The ramifications of this began to have far-reaching effects. The different foot size adjusted her entire stride.  The smaller foot is weaker, and naturally over pronates.  There began to be back and shoulder pain…

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There was one more knee surgery last May – to clean out some residual blood and quarterize a few spots in the knee-joint.  That proved to make the knee even a little weaker.

There came a point where each foot needed its own pair of shoes.

Keeping her in a pair too big would compromise the weaker AVM leg.  Putting her in a pair that was too small was just impractical.  So we began to buy shoes in a 9 AND a 10.

Now we consider ourselves fortunate to be able to buy two pairs of shoes at a clip.  We have only one child, and I find good shoes to be a wise financial investment.  Buying the two pairs is never what bothered me.

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My trouble came with what to do with the other shoe.

I threw some away, but that didn’t feel right.

People, not thinking it through, directed me to odd shoe websites.  But, the odds of me finding a perfect match were slim to none.  It didn’t make sense for us.

So, the shoes began to stack up in the basement.

Some internet searching brought me to National Odd Shoe Exchange (N.O.S.E,)  And a million bells and whistles went off.  Here was a real, 501c3 charity that accepts “in kind,” or actual SINGLE SHOE donations.  They pair them with actual people.  They work with amputees.  They work with real people, registered in their database, and they send them shoes!     History of NOSE

And, since they are a registered 501c3, our donation, as well as any postage, are fully tax- deductible.  An added, unexpected bonus.

So, today I mailed a box to Arizona.

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In it were three “pairs” of shoes.  10s for the right, 9s for the left, just the opposite of my girl.

And somebody, somewhere, or maybe even several “somebodies” will benefit from Meghan’s adversity.

It seems almost ironic that as I write tonight we are nursing a left shoulder that “froze” today,  more than likely the result of the
“off sides” stride.

It locked up in the pool.  During the last practice before the big meet this weekend.  She has trained so hard.  She fights every obstacle head on.

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Feisty.  Tenacious.  And in pain.

Tomorrow there will be more ice.  More stretching.  More anti- inflammatories.

There is no pause for this young lady.  Life keeps careening from one obstacle to another.  Yet, she walks straight and tall and with her head high through it all.  Counting her blessings.  Growing up too fast.

So many things make no sense at all.

But for us, tonight, the knowledge that in a few days time 3 “pairs” of brand new shoes will be available to someone…

Well for us, that is a bittersweet way to find some sense in this big mess.

#BEATINGCOWDENS

#ONESTEPATATIME