“The Few, The Proud…”

I have a pretty big family.  And among that family I boast countless uncles, great uncles, and aunts and cousins too.

But, I have uncles I’ve never met.  They are brothers to my father who died just about 14 months ago.

My father had 7 brothers and a sister who I’ve grown up alongside.  I have cousins galore, and I love them all.

But there is another part of my Dad’s life that only began to become real to me in the weeks preceding his death.  And that is where I began to learn about these other uncles.

And even today, as I sit, on this snowy day, in my office, in Dad’s chair, and with his old champion sweatshirt for warmth, I have plenty of time to reflect.

We spent today home.  Meghan and I were beat up by a schedule that is beyond our capability to maintain for extended periods of time.  We crashed. Hard.  Sometimes it’s easy to ignore this chronic illness we have.  Sometimes it’s easy to forget about this genetic mutation lying in wait to wreak havoc on our lives.  Sometimes we do such a good job pressing on – getting it all done – that we forget we need to pause.

Cowden’s Syndrome doesn’t cause the fatigue, per se.  At least we don’t think so.  But, somewhere in between the messed up blood counts, and the appointments, and MRIs and scans and trips to Manhattan, the fatigue finds its way in.  Add in surgery on the calendar for me in February.  Couple that with the raw determination of an 11-year-old who is intent on conquering the world – and you have focused school work, swim practice, meets, theater practice, and an epic amount of community outreach work as the date closes in on our “JEANS FOR RARE GENES” Fundraiser at the Hilton next month, and suddenly this exhaustion seems easily explained.

https://www.eventbrite.com/e/beating-cowdens-first-annual-jeans-for-rare-genes-fundraiser-tickets-14130024283

Suffice it to say, a January snow on a Saturday morning was truly a heaven-sent gift for us.

And so after the laundry is back under control, and the house is returned to reasonable order, I get time to sit with my blog – a place I have missed in the chaos of the last two weeks.

And while I have so many family and friends that I love so much, the reality is that when I had things on my mind – intense medical things.  I would always and without fail use Dad as a sounding board.  He would listen for hours with no judgement passed.  He would offer advice when he could, and respect when he couldn’t.

For large parts of my youth Dad was absent, almost completely.  I didn’t understand, but it was what it was.  Sometime after I got engaged in 1999 our relationship began a lot of repair work.  We talked more and more as the years past, but there was always a detachment.  There was a shield.  Even with us.

He settled on Staten Island finally, about 5 years before he passed away.  He lived with his sister, my aunt, and they were good company for each other.  He reached out.  He made an effort.  Slowly he started to let me in.

I was a psychology and education major in college.  I remember the lessons on PTSD, or Post Traumatic Stress Disorder.  Immediately so many things made sense, and I saw my father in those lessons.  But the real moment came when he said it himself during one of our long conversations.  “I have something called PTSD…” and there was an opening to a world I had never been allowed into before.

There was a young man – still in his late teens.  A young man who became a Marine.  One who enlisted with a few friends during a war that I knew precious little about until I began my own research.

Dad

My grandfathers, all three of them had fought in World War II and tales of their service were common.  Never in a bragging way, but matter of fact lessons and experiences and stories, told and shared my whole life.

I studied World War II in school.  I learned, probably not enough, but enough to carry on an intelligent conversation.  But, I as a teacher of young children, had precious little knowledge of the horrors that were the Vietnam War.

My Dad who left for that war never came back.  Sure, he survived treacherous battles in the jungle, but he never came back as the boy who grew up on the local streets with his friends and siblings.  He returned a changed man.

veterans day 3

My Dad gave his entire life for his country, even though his service record bills his active service as about 3 years (of that 13 months were in the jungles of Vietnam,)  He came back traumatized, confused, and unsettled.  One of the talks we had after the acknowledgement of the PTSD included, “I spent the first 40 years after I came back thinking everyone else was crazy, and the last 5 thinking maybe it was me.”

Years of wandering allowed him to make “friends” with lots of people in lots of places.  But in reality Dad was a “man’s man.” It was easy for people to trust him and share with him.  Many people who viewed him as friends knew very little about my Dad the man.

Dad with a buddy in Central Park

Dad with a buddy in Central Park

As he got sick Dad authorized the release of his medical and service record to me.  He knew I would pore over every detail and search and question, and hopefully find answers no one else could.  I searched and I read and I researched and I asked, but in the end the course of events was set to be what it was.  During that process though I read, first hand accounts from my father about things I had never known.

I also got to spend more time in his apartment.  And there were three pictures there.  And Dad would talk briefly about those pictures.  And I would wonder about the other men behind those eyes.  And how their lives had turned out.

Thomson, Merkel & Zeppie close up

After we buried Dad in December of 2013 I continued my quest through our local Congressman to get his service records reviewed.  Still in a deep quest for closure I uncovered some photo CDs in Dad’s things.  Most were of photos taken by him.  One was marked Vietnam.  On it were photos not taken by Dad, of Marines who served with my him.  There were pictures of men, pictures of war, and documents that I had never seen.

Not long after that,  a conversation with Holly, a woman who we all love, who shared a long relationship with Dad, produced a contact list for Dad’s Marines.  The names matched the names on the photos and I set about writing letters to each of them.

I sent out letters to each of them, looking for specific information.  I knew my hope was a longshot.  I was looking for recall of events that had taken place over 45 years prior.  I sent out 18 letters.  I expected I’d be lucky if I heard from one of them.  Why would they answer me?

And that is where I learned of the uncles I never met.

Aside from the 2 Marines who had predeceased my Dad I had responses from all of them.  Every single one of them reached out to me, to offer condolences, to tell a story, and to offer support.  I laughed and cried and healed more during that month than I could have imagined possible.  These men, together for a relatively short window of their lives, were deeply bonded as brothers forever.  These were my “other” uncles.

semper fi

And I connected with the men from the photos, “Merck and Zepe” as Dad called them.  To listen to their tales of stories I had never heard, was a gift I could not have imagined.

But there is one.  One “Uncle” who has been there for me this past year in ways far beyond what I could have ever imagined.  “Uncle Alan” had listened to my tears, taught me, comforted me, and supported my endeavors.  His compassion knows no bounds.  He has prayed for my family, asked about my daughter, given me peace on Father’s Day, and has done more for me than I  imagine he will ever know.

he who shed blood with me

Last week I was at the height of exhausted and in my mail was a package from “Uncle Alan.”  In it was the book “90 Minutes in Heaven” as well as a bumper sticker, a T-shirt, and a “US Marine AM-GRUNTS” hat.  I cried.  Tears of gratitude.  For God’s introduction to family I never knew I had.  I cried tears of healing, as I come each day to understand more about my father through these men who call him “brother.”

Dad and I spoke sometimes, towards the end,  about the “whys.”  He wondered why he got to come back and live his life, when his dear friend Tommy was KIA.  He wondered about mine and Meghan’s Cowden’s Syndrome.  He wondered if there could be a connection to his ruthless exposure to Agent Orange.  If somehow that genetic mutation could have arrived in me through him.  He wondered about the possible connection to the cancer that took his life.  We wondered together lots of things we will never know the answer to.

But there  are things I don’t wonder.

Dad’s life had purpose.  It had meaning.  It left impact on everyone he ever loved.  Out of his suffering came great strength, and a deep faith in a good and perfect God.  I don’t wonder for a minute where Dad is now.  I am sure he is flying free in Heaven.

I don’t wonder “how” we got Cowden’s Syndrome.  Cause we have it.  I don’t even wonder “why” we have it.  Because we do.

And who we are develops through our experiences in life.  And while there are some I would have preferred for us not to endure, I don’t wish to change them.  We are learning to be the best people we can be.

And along the way, there are people looking out for us.  “Uncles” we never knew.

Alan signs his letters “S/F” for the Marine Corps motto “Semper Fi” – “Always Faithful”

A permanent addition to my ankle...

A permanent addition to my ankle…

I have not known truer words.

I plan to get to visit “Uncle Alan” in June.  We have lots more to talk about.

Blessing abound if we keep our eyes open.

something to be grateful for

Winning

winning2

Winning.  It feels good.  And it’s not about being first.  And it’s not always about being “the best.”  Sometimes winning can be as simple as not losing!

Every day we wake up and prepare for battle.  The “sword” is sharpened before we get out of bed.  We can not take a step unprotected, or unguarded.  And, even being on guard against Cowden’s Syndrome all the time is often not enough.  So often things just happen…

Sometimes we get a little  A LOT frustrated.  Often we feel beat up by this beast that we battle.  “It” gets quite a few swipes in.  But, we have, and we WILL always remain on top.  That’s why we are BEATINGCOWDENS.

So tonight, as we drove home from a swim meet in the Bronx, we chatted –  my girl and I.

And it was pleasant, easy conversation.

So often as the weekend comes I reflect on the week that was in awe that THAT much “stuff” fit into the week.

This was no exception.

Last month she was sidelined from the swim meet.  Recovering from knee surgery just three weeks prior, she was in no condition to compete.

This month she was all in, and we both loved it.  It is such a treat to watch her when she gives it everything she’s got.  It’s an even bigger treat when she takes 4 seconds off the 100 free and 1.5 seconds off the 50 fly.

Winning.

The conversation on my end for the long afternoon of waiting was pleasant and easy.  A bunch of overheated parents held captive together, all sharing a common hope that their children swim their best.  Meghan talked comfortably with her peers, easily passing the time between events.

There are goals, qualifying times in her brain, but today she was pleased by her success and so was I.  She may reach these times this season.  She may reach them next season.  But, we agreed that it doesn’t matter as much as her continued progress.  And I was able to tell her how proud I am that she persists.  Through 5 knee surgeries, through thyroid numbers that would level the strongest among us, through chronic pain – quitting is not in her vocabulary.  This is the focus she will take with her for the rest of her days.  This is the attitude, this “I CAN do it,” is what I pray will follow her all of her days, through all aspects of her life.

winning

Winning.

This week she got a part she wanted in the play she’s been working on in after school drama.  She was patient.  Persistent.  She calls drama “fun,” and the students, “funny.”  She never acted before.  Except for every day when she “acts” like a pain-free “regular” 11-year-old.  She’s thrilled.

Winning.

The marking period ends this week I think.  Her averages on the “Pupil Path” app impress me.  And I was a pretty good student.  I don’t check her homework, or really bother her about anything.  “I’ve got it, Mom.”  And the numbers tell the same story.  All those years of working together on good study habits paid off.

winning3

Winning.

The fund-raiser, “Jeans for Rare Genes,” is taking off.  And we haven’t seen anything yet.  People are reaching out.  They are coming to the event, donating raffle baskets, making monetary donations, and offering their time and energy.  Local businesses have been extraordinarily supportive.  Meghan had seen the best in so many people.  She knows her life matters.  Her story matters.  Her drive is being rewarded.  Her big heart is teaching her to dream bigger, and help more people.

Rare Disease Day Fundraiser

Winning.

We lost our Allie Girl, our 11-year-old rescue in December.  She was with us 7 and a half great years.  We miss her.  All of us, especially her Dad and her “furry” sister Lucky.  Felix approached me about rescuing another dog.  I thought it might be too soon.  He reminded me that Allie had a good life because we rescued her.  He felt strongly we could be that same kind of help to another dog, and by doing so we would honor Allie, and help Lucky’s loneliness.  I told him I was open – but no puppies.  I wanted to know we were saving a dog.  I wanted a dog no one else wanted.  That made sense to me.

Sweet April showed up on a web site Felix was following.  A three-year-old lab mix with an uncertain history, rescued from a high kill shelter in Florida.  She was being fostered in Pennsylvania.  “It’s all in the eyes,” Felix said.

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We put in an inquiry, and left an application with references.

The Email said she was going to be in Brooklyn Tuesday night.  Could we come and see her?  And if everything went well and she and Lucky got along, would we consider taking her?

TUESDAY?  Who takes a new dog on a Tuesday?

Sound asleep in the car Tuesday night.

Sound asleep in the car Tuesday night.

Apparently we do.

April arrived at our home around 7:30 PM Tuesday, after a brief visit to Petsmart for a new collar, and to meet GiGi and Pop!

We had to get her in, fed, settled and all of us off to bed within a few brief hours.

She found her spot.  And Meghan has slept better this week than she has in years.

IMG_3720

WINNING!

Lucky has developed arthritis in her knee, and a visit to the vet Weds. with both dogs in tow was very emotional for me.  April checked out as healthy and strong.  And my Lucky had her very first blood test.  I am happy to report she is healthy as can be.  I left with a script for anti-inflammatory medicine for her.  She’s going to need it to keep up with her little sister.

And somewhere I can imagine Allie smiling in Heaven, as Lucky is the recipient of the playful nips she used to give so frequently.

Allie always watched over her human sister.

Allie always watched over her human sister.

 

The sight of two tails wagging again was good for us all.

WINNING!

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

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

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

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

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

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

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

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

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

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

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

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

Not once did I ever hear Meghan complain.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Alex and ANI hero front

wear that you care photo

do something

random-acts-of-kindness

Meghan 2014 Nominee for Global Genes Project Teen Advocacy Award

Meghan 2014 Nominee for Global Genes Project Teen Advocacy Award

2014 Kid of Achievement - Staten Island Children's Museum

2014 Kid of Achievement – Staten Island Children’s Museum

Rare Disease Day Fundraiser

 

Keeping focus

It’s 2015 and the first surgery of the year has been scheduled.  February 18th.  This year it’s my turn to have surgery over the February break.  It seems each year one of us takes a turn.

Calendar

So while my friends are returning to school tomorrow, counting the days to the February week, I am not quite as excited.

It’s only a vein.  A large, painful, varicose vein to be stripped out of my right leg.  Large enough that it requires an operating room.  But it’s far from the first.  My veins are crap.  This is almost certainly connected to the PTEN mutation that caused our Cowden’s Syndrome.   My veins seem to be a generation less severe than my girl’s AVM.

I had the first one stripped in my early 20s.  Before I knew of Cowden’s.  Before there was Meghan.  The next 2 were done in the years that led into my early 30s.  Then 4 years ago I had 5 done through an in office procedure at NYU.  There they were just “closed” and not removed.

Vein_Anatomy_112

Maybe they are sped along by a life that requires so many hours on my feet.  Maybe genetics have sealed their fate already.  Not a single doctor I have seen has ever claimed to know for sure.  And that’s better.  I hate when they guess.

I sometimes wonder when I will run out.  I wonder how many they can close off or take out before…

They just keep telling me the ones they are taking out are already broken.  Backflowing.  Not doing their job anyway.

Doesn’t keep me from wondering why they keep breaking.  At 41 I do wonder how this bodes for the future.  But, it’s one of the things I have consciously chosen not to research too much.  Because I can’t control it.

I have tried compression stockings, and I wear them when the pain and pulsing gets really bad.  But, I hate them.  And a religious stint of wearing them a few years back saved me nothing, and caused me to be very angry.  All the time.

They are not nearly this glamorous.  Trust me.

They are not nearly this glamorous. Trust me.

So for now, it’s the last thing I feel before I close my eyes at night.  It is the first thing I feel when I open them in the morning.  It is the reason I often keep moving, because the resting makes me more aware of them.

The pain, the pulsing, the aching is maddening.  But it certainly reminds you you’re alive.  And, as cliché as it sounds – it reminds you that it could be worse.  Much worse.

Our vascular issues in this house, (although Meghan’s still terrify me,) have been confined to lower extremities.  And I flash to our friends in Australia whose 20-year-old fights vascular malformations in her brain.  Over and over and over, with a resilience in mother and daughter I marvel at.

Perspective.  It’s all about perspective.

perspective

Meghan has 2 appointments coming.  One is a follow-up for her vascular surgery in November.  The other is with her endocrinologist to try to tease out the continuously unbalanced thyroid hormone levels.  I have three in February – before the surgery.

It’ll be a busy winter.

So glad we chose to distract ourselves from ourselves with the “Jeans for Rare Genes” fundraiser.  Always good to keep it focused somewhere else.

https://www.eventbrite.com/e/beating-cowdens-first-annual-jeans-for-rare-genes-fundraiser-tickets-14130024283

Rare Disease Day Fundraiser

Good lessons that I teach my daughter.  Good lessons I will remind myself repeatedly when I am tempted to rant about another stint in the operating room.

Better me than my girl.  And it could always be worse.

Maybe we’ll have a different countdown to the February break.  Maybe we will count down until February 15th – the date we hope to raise enough money to make a difference in some lives.  The rest of the week… we’ll skip that for now.

Beatingcowdens -2014 in review by WordPress

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.  Thanks for reading!

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 47,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 17 sold-out performances for that many people to see it.

Click here to see the complete report.

Milestones

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

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

100000_thumb

Stunned.  Amazed.  Humbled.  Grateful.

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

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

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

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

smile-its-free-therapy

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

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

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

cropped-movie-night.jpg

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

Meghan chatting with Borough President Oddo!

Meghan chatting with Borough President Oddo!

Meghan's friend has been a great support in so many ways.

Meghan’s friend has been a great support in so many ways.

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

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

Ronald McDonald House

Our Room

Our Room

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

Meghan 2014 Nominee for Global Genes Project Teen Advocacy Award

Meghan 2014 Nominee for Global Genes Project Teen Advocacy Award

2014 Kid of Achievement - Staten Island Children's Museum

2014 Kid of Achievement – Staten Island Children’s Museum

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

SI Yankee 2014 B1

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

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

It looks like it will happen- SOON!

It looks like it will happen- SOON!

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

Meghan and Uncle Chris at The Stone House

Meghan and Uncle Chris at The Stone House

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

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

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

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

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

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

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

 

Reflections

learning

Reflections.

One of those multiple meaning words that seems to get tossed around a lot this time of year.

Reflections for me are necessary as a part of who I am.

As the new year approaches, I find that I hear the same sentiment over and over.  “2015 Will be a (great, better, good, fabulous…) year.”  Often I hear people say, they are “due,” and it’s their “time,” or their “turn.”

And that’s not to say I don’t know countless people who have suffered gross misfortune.  And it’s certainly not to say I don’t wish them all a break.  It’s just I’m not sure what difference a minute makes, really.

I am reminded of the conversation I have with my youngest students several times a week.  December to January is a matter of a minute.  One to the next, and the calendar changes.

calendar

I guess it’s none of my business this notion that the new year will make things better or different.  But, I just don’t really buy it.

I like the idea that the year starts over again.  I have always liked that about teaching – the ability to start fresh every September.  But to me that is a more authentic change than New Year’s Day.  At least in school it IS a new year, new schedule, new students…

Maybe it’s the fact that the last few years feel all drawn together in my mind.  And they haven’t been all bad.  Just quick.  Fast-paced.  And maybe a little tiring.

Truth be told, though, there is no real indication that 2015 will be any different from 2014, or 2013, or one of the rockiest of them -2012.  The change of month and year will not alter many of the things currently set in place.  There is Cowden’s Syndrome to fight.  There are relatives and friends struggling with health issues.  There are things that just are.

But, what will remain the case in 2015, is currently the case right this moment.  I will wake each morning, put my feet on the floor and find something good to focus on.  I will shake off the pain.  I will be a role model for my girl.  I will eat the most nutritious food I can find, and share my passion with whomever will listen.

question

I will question doctors.  I will question everything and get the best care I can for my girl.  I will adore my husband, and love him the way he loves me.  I will follow the lead of my daughter and strive actively to help as many people as we can.  I will work on staying calm, and not sweating the small stuff.  Because that is how I get through every day.  All year.  And some days when we are very tired, we will just be.  And that’s ok too.

Although, I’m not beyond reflecting on the last 12 months, in the year we often dubbed “The year that everything broke…”

reflection

I spent January sorting through my father’s apartment after his death in December 2013.  It was a whirlwind that ended December 4, 2013, when he passed from a battle with pancreatic cancer, and the carry over was evident in my dining room for the early part of 2014.  I made phone calls, wrote letters, and did what I could to address inquiries and settle affairs. And still a year later there are pictures to be sorted and water marked… soon.

dad and meg halloween 2013

In February Meghan’s thyroid finally gave out.  And was taken out.  In the middle of a huge snowstorm that led us into the Ronald McDonald House in Manhattan the night before.  And we spent a few weeks with the largest part of the recovery, which included a medication reaction and another overnight hospital stay.  Almost a year later her Synthroid dose fluctuates every 6 weeks and doesn’t seem close to being regulated.

Trying to distract the pain away.

Trying to distract the pain away.

There was the identity theft that targeted me in March and got right into my bank account.  There were headaches, and police reports to follow, but they had nothing on the fraudulent tax return we learned had been filed in April.  Hours and hours, and months of waiting.  We have it all fixed.  Almost.

identity

The spring was a constant juggle of pain.  An indicator that the thyroid removal had altered the balance in the body as far as I am concerned.  That theory was further confirmed when Meghan spent a week in the hospital in May with severe gastritis.  It was the culmination of a spring where things just seemed to be getting worse.  We met a gem of a gastroenterologist who was able to settle a few things, but after an endoscopy we left with news of severe esophageal damage.  Her medication was blamed.  The same one that had been helping us manage her constant pain, and had been diffusing the activity of the AVM in the knee.  We also left with a diet exponentially more restrictive than the one she was already on.  Ironic maybe that the fryer we had, had broken the night before we went to the hospital.  We certainly didn’t need THAT anymore.

And then we said goodbye to the Saturn.  The 1996 Saturn that was the “extra” car that was so handy to have, was towed away in the spring after a few failed attempts to fix what surely was the start of a failing transmission.  We are a one car family for now.

saturn 1996

Even in the “happiest place on earth” Meghan’s stomach “broke” again.  Scaring the heart out of us, causing a visit from a Disney doctor for which I am still trying to coordinate payment from the trip insurance company.  Fortunately it didn’t derail our trip.  But, it reminded us that everywhere we need to have our guard up.  Everywhere.

TheHappiestPlaceonEarth_thumb

And our Allie Girl in July had 5 teeth pulled in quite the procedure of a surgery.  It didn’t take her long to start eating again, but my nerves, and my visa were permanently affected.

There was the pool that kept having a “little” leak.  Until it was consistent enough that we left a hose in the pool.  Until I finally bit the bullet and called for a leak assessment.  And just like that the pool was being emptied for its liner to be replaced.  At least it will be ready for us in the summer.

And the bay window.  The one that developed some dry rot after a call to the window company 2 years ago led to a ton of red tape.  By the time they came to see if the damage was covered it was too late.  And just like that we were replacing the bay window we had put in 14 years ago.  And once you cut a hole into the wall… It was like a bad version of the book “If You Give a Moose a Muffin…”  Almost the whole house got painted as Meghan moved her room upstairs, and we cleaned and sorted and purged…

bay window

The very end of August my Grandma, Dad’s mom, had a stroke.  And we hoped and hoped that it would get better.  We visited, and chatted, and spent as much time with her as we could.  And she went from the hospital to rehab, to the nursing home, and declined every step of the way.  She remained pleasant and agreeable until she passed away October 22nd – less than a year after we lost my Dad.

The first "great grandchild"

The first “great-grandchild”

Early in September Meghan fell and there was a stress fracture in her foot just in time to start 6th grade and a brand new school.

meghan boot 1

And in the fall the washing machine gave up, and a new one found its way into the basement.

In November Uncle Jerry, my Dad Ken’s brother passed away.  Just shy of 60, he was taken way too soon by cruel cancer.  GGPa, his Dad, was taken from us in June of 2012.  Too close.  Too much.  Too sad.  Just wrong.

And as I traveled home from the funeral in Vermont I went to pick Meghan up at swim practice.  And as she walked out of the locker room she collapsed.  The pain in her knee was too much.  Emergency surgery the next day at Lenox Hill revealed a pea size hole in the artery of her right leg at the AVM.  And what we saw coming 6 months prior when she stopped the medication because of the gastritis had happened.  The AVM was back in a foul mood.  50ccs of blood drained from her knee joint.  After 5 procedures in there, at only 11 the knee will never be what it should be.

This is about 50ccs of water - roughly the same amount of blood that filled her knee joint.

This is about 50ccs of water – roughly the same amount of blood that filled her knee joint.

We spent Thanksgiving at home, just the 5 of us.  Felix, Meghan and I, and Allie and Lucky.  We decorated for Christmas, while Felix made a fantastic dinner.  And it was ok to be housebound.  Together.

There had been too many funerals this year.  Too much loss.  In my immediate and extended families, and the families of friends.  We needed some time to enjoy our innermost circle of 5.

By that time memories of my Dad’s passing a year earlier were taunting me.  Maybe I looked the other way at the earliest signs that Allie didn’t feel right.  Maybe it wouldn’t have mattered.  But, we got home from celebrating cousin Kim’s wedding, and it was evident that my Mom was even worried about Allie.  A walk the next morning with Felix where she gave up mid way prompted a vet visit that Sunday.  After x-rays of her belly that were inconclusive, and some medication for pancreatitis that we were pretty sure she didn’t have, we took her home.  We diligently gave her medication and prepared chicken and rice as directed, but by Tuesday she wasn’t eating.  And THAT was NOT like her.  So I took her back on Wednesday hoping for a new medicine and grossly unprepared for the vet to tell me it was time for her to be put down.  So in between tears I gathered my family and waited.  I held Allie for hours while I waited for them to arrive so we could all say goodbye together.  December 10th we lost a good friend, and a key player in our family of “5.”

allie13

 

I ended the year breaking the vacuum the day before Christmas Eve.

And as I sat to reflect I remembered that still in the chaos that sometimes ensued, never were we to be defined by Cowden’s Syndrome.  We are to be defined by other things.  The ability to;   persevere, love, lose, cry, laugh, sing, smile, appreciate, endure.

Because you see Cowden’s Syndrome is with us every day.  Of every year.  For the rest of our lives.  But it can not BE our lives.

However, it has taught us some good lessons.  Life changes quickly.  If you aren’t paying attention you might miss it.  Don’t be complacent.  Ever.  And be as prepared as you can while never making firm plans.  Cause life is not designed for “firm” plans, but better suited for goals.

And don’t wait to make those goals.  Or to carry them out.  You don’t need a new calendar, or a special occasion.  Just do it.

Treat each day as a gift.  Be the best YOU that YOU can be, all the time.

Be honest.  Don’t be afraid to love deeply.  The pain of loss is horrendous, but without that ability to love deeply there would be a good deal of much needed compassion missing from a world that is already struggling.

The best thing about reflections, is they encourage you to continue onward…

We are still now and forever Beatingcowdens…

one-ste-at-a-time

 

 

 

 

 

Pain is temporary….

At least I hope so.

I vaguely remember a shirt my older sister used to wear when she was swimming.  The message was something like this.

pain is temporary

It was motivational, meant I am sure to remind the young swimmers that their fatigue from grueling practice would translate into race times that would forever keep them proud of their accomplishments.

And in that case, I hope the pain, the pain of lap after lap, translated into successful meet times that led to a gratifying feeling of pride.

But what about when it’s not that neat?  What about when you can’t sort it out in a package, or tie a bow on it?

There is emotional pain.  The empty pain of loss.

As I type, I have two lit candles on my desk, celebrating the 60th birthday of my uncle in heaven.  The pain of his wife, his children, his mother, my dad, (his brother,) can not be explained.  The loss is raw.  The pain is an open wound.

I think of my college roommate, and her nephews and sister-in-law preparing for Christmas without their 36 year-old father.

I think of the loss of my Dad, just over a year ago, and the flood of memories and seasonal connections complicating my every thought.

I think of the loss of our beloved Allie Girl last week.

I think… and I think.  And I know how badly it hurts.  And I know we are so far from alone.  I am grateful not to be able to imagine the depth of the pain some feel.

pain is real

Pain is temporary…

There is the pain of anxiety.  Very real.  Depression.   Equally crippling.  I’d be lying if I said I haven’t battled with both my whole life, amped up by this Cowden’s Syndrome torment under which my girl and I will live forever.

Try as I might, the worry is stifling.  The sense of urgency all the time is exhausting.  There is little room for error.   Screenings, medications, lab work, surgery.  All scheduled with precision to conserve sick days and minimize missed school.  Except when I can’t.  Like when it’s an emergency.  Then we just roll with it.

The anxiety weighs on my girl as well.  11 years old, trying so hard to be normal, and to fit in.  But, the reality is there is no “normal.”  So she fakes it as best she can, blessed to be surrounded by some spectacular kids.

But, she gets mad.  Mad at the doctor, mad at her knee, mad that she takes two steps forward and three steps back, in this poorly choreographed dance she is forced to participate in.  Mad that she can’t be “the best,” because her own best is unacceptable to her.  And some days when she is extra mad, I wonder about the thyroid.  Cause its absence affects all things.  And this week came the phone call that the numbers have increased 400% over the last 3 months again.  So we continue to raise the dose of a medication that I don’t think does a damned thing for her.  We play the game while I search, frantically for someone to “get it.”

Pain-can-change-you

Pain is temporary…

Except when it’s chronic.  And it involves every single minute of every day.  And the one medication that does work is off-limits.  And the surgery to plug the hole in the artery that was likely provoked by the absence of THAT medicine, causes and abundance of scar tissue and this feeling of a lump the size of a cashew or two exactly where the knee should be able to bend.  And you have no way of knowing if its going to get better, or happen again.  Any minute.

And the pain, well if it was only in your knee it would be better.  But it’s in the shoulder, and the neck, and maybe it’s caused by the feet over a 1/2 size off, or that slight curve in the lower spine, or something else no one cares to figure out.

So, you gather your spoons.  And you borrow a few.

keep-calm-and-save-spoons-2

And you press on.  Through sixth grade and onto the principal’s honor roll, and through student council, and drama club, and fundraising activities, and swimming your butt off.  Cause what choice do you have?

hopeful-spoon

Pain is temporary…

We talk about injury pain, vs healing pain.  Tonight’s pain counts as the healing type cause it was generated largely by exercise.  This pain is movement in the right direction.  Swimming heals the soul.

You have to find what heals the soul, or you will lose your mind.  There is no other way.

Pain is temporary… cause it needs to be.

You have to find what brings you peace.

Two weeks ago on December 4th, I chose this.  The butterfly breaking out of the cocoon.  Free forever.

photo (6)

I miss my Dad.

My heart is full.

But we press on.  Because pain is temporary.  Even for all of us in the middle of the worst pain of our lives.  The sun will shine again.

Channeling that energy into raising awareness, fundraising, and helping those whose sun hasn’t come back up.

hero

Jeans for Rare Genes Fundraiser  (Click here to support our fundraiser for the Global Genes Project and the PTEN foundation)

We are living real life, AND

WE ARE BEATING COWDEN’S TOO!

All Dogs go to Heaven…

Although there is some debate on that, I stand with Billy Graham.

dogs2

We lost our Allie Girl today.  And just when I thought there couldn’t be anymore sadness, our hearts are broken in half.

Allie found us.  Rather, she found Felix, in August of 2007, when PLUTO Rescue did their events at Petsmart.  It was August 4th, Felix’s birthday, and we stopped in just to grab a bag of food for Lucky.  Meghan and I walked through the aisles enjoying some of the puppies around for adoption.  Ready to leave, I asked, “Where’s Daddy?”  And there he was, knee to knee – eye to eye- with Allie.  “This is the dog I was meant to have,” he told me very matter-of factly.

Just a week or so after they met.

Just a week or so after they met.

I came up with a litany of reasons why a second dog was a bad idea. ( We already had Lucky)

“What if they don’t get along?”  (Solved in 2 seconds flat when they met outside Petsmart.  They were fast friends.)

allie5

“We are having company for Meghan’s birthday next week.”  (They offered to delay the adoption 2 weeks.)

“Our yard may not be big enough.” (We passed the home visit with flying colors.)

allie12

“We don’t have the money right now _” (I was grasping.  The fee was so reasonable. And they offered to postdate the check a month.)

I lost.

Publication1

But I won.

Big time.

Allie joined us on August 12, 2007.  The guesstimate for her age was three.  I suspect that was conservative.  She stepped into our home with none of the puppy nonsense new dogs cause.  She was trained, didn’t bite the furniture, or pee on the rug.  She needed a little tiny training to settle down with her food.  Easily done.  And she really was the perfect dog.

Allie waiting until Felix wakes up

Allie waiting until Felix wakes up

She was Felix’s dog from the get go.  No matter where he went she followed.  She slept on his feet at the TV at night.  She waited for him on the weekends if he slept in.  She sat at his feet when he whistled.  She greeted him at the door.  She knew it was he who had freed her from the cycle of adoption and fosters, and found her her forever home.

Her “tough” side – much like Felix’s, was put into check with the right love.

allie9

allie11

I took a bit longer to catch on.  It took a few baths, and some nail cutting, and adjusting to calls from the groomers that they couldn’t service her.  I had to understand her, her abandonment, and her need to trust again.  Once I “got it,”  we did just fine.

allie10

Mostly I fell in love with Allie because she loved my Meghan.  I can remember nights, and there were so many sleep deprived nights,  that Meghan would wake crying, and if we didn’t hear fast enough, Allie would come and get Felix and I and make sure we took care of her.  She became so protective of Meghan – from “hide and seek” to watching her in the pool, to not resting until Daddy dug her out of the snow bank, Allie knew Felix was her master, and protecting Meghan was her purpose.

allie14

allie3

And how could I not love the dog that loved my two favorites?

Meghan, being without siblings, took to the dogs as her “furry sisters.”  She always used the number 5 to represent her family.

allie6

And when she was sick, or hurt, or recovering, as she so often was, Allie was loyal and attentive always.

Being sick is the pits.  Having Cowden’s Syndrome is horrendous.  Having a dog or two to love you through it – definitely a bright spot.

There were so many nights.  More than can be named.  So many nights of tears and frustration and sadness and anger.  Soothed by the love of a dog.

allie13

We love Lucky.  Very much.  But we always said Allie made Lucky a dog.  Allie turned her in the right direction.  Made her less neurotic and more normal.  They were sisters.  A good pair.

allie8

Cowden’s Syndrome just got a little harder to swallow.

Life just got lonelier.

Allie got sick fast.  Maybe a few weeks of not being quite right.  And a few days of really being laid up.

We took her to the vet Sunday.  It looked bad.  I took her back today.  It was over.  Her belly was full of fluid.  Even without eating – 2 pounds heavier than Sunday.  They didn’t offer to do blood.  Or treat.

allie4

“This is it,” the vet said.

And Meghan and Felix came, and we sat as a family.  And we said goodbye together.  We hugged, and held, and loved and cried.  Then we left.

Our world, and our lives forever changed.  Richer for our experiences, more painful for our losses.  For only those who love deeply, can hurt.

Thank you Allie.

Hopefully Grandpa Tom finds you.  You two always got along.  Cause I firmly believe I’ll see you both again.

dogs

… some rain must fall.

Last summer we invested in a new roof for the house.  I’ve never regretted it.  Truth be told we had no choice.  There were leaks and dry rot.  All sorts of potentially serious places for significant damage.   Lots of horrendous storms have pounded down on this roof since the summer of 2013 – both literally and figuratively.  But we’ve stayed safe and dry.  I have to figure its some combination of strong plywood, and a well done roofing job, coupled with our strong family bond, deep faith, and our ability to keep laughing.

rain 4

The weather forecast this week is pretty awful.  And I started thinking about how, “into every life some rain must fall.”  And I started to wonder, whether maybe we’ve actually had enough rain.

Cowden’s Syndrome brings its own share of cloudy, overcast, generally awful days.  And life, well it can get dicey and complicated even without Cowden’s Syndrome.  This year has been wild.  Full of so much sadness, and hurt, and sorrow.  And in between there peeked in some fun, happy times.

rain 2

This month has been tricky.

These last 2 weeks….

I’m really starting to think it might be time to consider an ark.  I’m not wallowing.  Nor do I think we are the only ones buried enough to need that ark (we’ll share,) but wow.  Just, wow…

rain 5 ark

Two weeks ago tonight we rushed Meghan to Lenox Hill Hospital for emergency surgery on the AVM in her right knee.  The 50 ccs of blood were removed from the knee-joint, and by Wednesday we were sent on our way.  Thanksgiving weekend was spent home.  Low key.  Leg up.  Resting.

We had goals.  All geared towards December 8th.  Goals set by the medical team.  Swim practice was to begin again tonight.  And Mom, FYI – goals are different from plans… :-)

We slowly weaned off the crutches, and the pain medicine.  We moved to an ace wrap as needed.  By last Monday the 1st she went to school still in pain, but unassisted.  The swelling was going down.  The healing had begun.

But by Friday she couldn’t do it.  Had to stay home because of the pain.  The swelling looked a little off too.  More rest.

rain 1

Sunday she woke up late and come down the stairs declaring the pain was worse – and “different.”  The knee looked horrendous.  And very similar to its pre-op state.  More resting.  Some pictures.  Some brainstorming.

ER 11/24

ER 11/24

Living room 12/7

Living room 12/7

All the while Allie, our oldest dog was having troubles of her own.  Allie, lethargic for a bit – collapsed on a walk.  Felix called me to pick him up carrying 70 pounds of dog.  Off to the vet for abdominal x-rays and a negative test for pancreatitis.  There was no discrete mass of the x-ray, just some shadowing.  They decided to try to treat for pancreatitis despite the negative test.  There aren’t too many other good options and I am worried.

And so we got medicine for Allie, and got her boiled chicken and rice for her bland diet.

And we took pictures of Meghan’s leg and elevated the knee.

Today we got up early to give Allie her medicine together.

Then Meghan dragged her painful, aching leg around school until I could get us an appointment.

1:30 arrival at Lenox Hill.  Sonogram initially showed no blood.  Then, wait for it…. there it is.  But no obvious spot its coming from.  Shocking really.  Could it be residual from the procedure two weeks ago?  It looked to be about 5ccs.  Nothing compared to the 50, but I remember a time less than 5ccs of blood in the knee-joint freaked them all out.  Now all of a sudden – we’ll just wait and see.

They used words like “discomfort,” and “irritating.”  She used words like, “excruciating.”

rain 3

Not the first time we haven’t seen eye to eye.  But he’s all we’ve got.  One of very few doctors in the north-east to operate on these in kids.

I get not racing back in.  I do.  But validate the kid for the love…. I know she’s super sensitive, but that just means she feels EVERYTHING, INCLUDING the stray blood in her knee.

Wrap it.  Elevate it.  Put swim off another week.  (Tough talk from the guy who initially said she wouldn’t even need crutches.)

In the car Meghan told me to get my Christmas shopping done.  Just in case.  She hopes she’d wrong – but it doesn’t feel right.

My money’s on her- and it’s a bet I hope to lose.

Allie, she’s super mushy.  Who knows?

photo 1 (5)

Online shopping here I come.

I’m done with the rain.  Really over it.  Rainbow anyone?

rainbow real