DO SOMETHING!

Do-Something-Today

The story of how a New York City girl got the ear of a West Virginia Congressman is a long windy one that involves the depth of love and dedication the United States Marines hold for their own.  That loyalty and brotherhood extends through generations in ways that would be difficult to explain in words.

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That, will be the story for another day.

For today, what you need to know is one of those Marines, who I hold very dear, heard me when I spoke.  He listened when I told him how my father apologized upon learning Meghan and I had been diagnosed with the PTEN mutation that causes Cowden’s Syndrome.

Once Dad understood the PTEN mutation, he became very sure that he “brought this back from Vietnam.”  Dad was certain that his exposure to Agent Orange in the jungles of Vietnam had changed his body.  He was also sure that the toxin was responsible for what my genetecist deemed a germline (inherited) mutation in Meghan and I.

We know for sure that Meghan got her mutation from me.  What we don’t know with certainty is where mine came from.  My mother and younger (half) sister on my mother’s side tested negative for PTEN.  My father was never tested.  Before I could ask, he passed away from Pancreatic Cancer in December 2013.  However, we do know my mutation was not “de novo,” or spontaneous.  We know it was germline, “most likely passed through the sperm of your father,” my genetecist explained.

So, all we had to go on were Dad’s instincts, which I knew were in no way going to ever prove causative to the US Government.

But I reached out, and I acquired anecdotal evidence from my online support groups where 4 people other than myself indicated a first degree relative with a similar toxic exposure.  In a disorder as rare as Cowden’s Syndrome (1 in 200,000) with group sizes in the low 100s in most cases, these were numbers worth noticing.

Sometimes a theory is all you need.  And when you eliminate the need to “prove” and you focus on the need to “educate” and “raise awareness,” sometimes you can make progress.

Today, the story is about how Congressman David McKinley  (West Virginia) and his staff listened when we spoke about Cowden’s Syndrome.  And they did something.

I was put into contact with Lou Hrkman, the Executive Assistant to Congressman David B. McKinley, P.E. (WV-01). (412 Cannon Building Washington, DC  20515 (202) 225-4172) through that Marine I mentioned earlier.  Alan doesn’t give up.

I shared an explanation with Mr. Hrkman, of Cowden’s Syndrome, and more specifically PTEN Mutations.  I told him about the impact on our lives.  I told him about my father’s instincts.  I talked to him about how, with a syndrome like this, KNOWING SAVES LIVES.  We spoke about veterans and toxic exposure.  We spoke about the thought that exposure could alter genetics.  We talked about RARE DISEASES, and more specifically, RARE GENETIC DISEASES.  We spoke about how if the doctors at the VA were trained to look for these disorders, or to be more aware, or to educate veterans, or to look for these disorders in descendents of veterans, that it is likely LIVES WILL BE SAVED.

This week I was contacted by Mr. Hrkman, on behalf of Congressman McKinley, to draw my attention to the last paragraph on page 47 of the…

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It says…

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And there it was.  In print.  For the VA Hospital System to be held accountable for education.

It is not passed yet.  The specifics of the bill need to be debated in Congress, but he is confident.

We who are so anxious to be heard, to be noticed, to be recognized, this is a huge first step.  And while I realize many of you are not relatives of Veterans, I feel it is SO important that we take this opportunity to raise awareness NOW!

I asked Mr. Hrkman what people can do.

Here was his reply…

It sounds quaint, but writing or meeting with your congressman is the best thing you can do.  Members take notice when their constituents are interested, especially on a personal basis versus a mass mailing or robo call thing. If you write your member, specifically reference the document I sent you (Military Construction, Veteran’s Affairs, and Related Agencies Appropriations Bill, 2017) and the page number. (Page 47)  I would also contact Vietnam Veterans and other Vet groups, but Vietnam Vets are especially affected.

PLEASE, right now, my American Friends, contact your representative in Congress.  Let’s make them HEAR US.  ALL OF US.  This could be the start…

PLEASE, share this post far and wide.  Tag anyone who you think might help.

It’s time for us to DO SOMETHING…

“Do Something” by Matthew West

I woke up this morning
Saw a world full of trouble now
Thought, how’d we ever get so far down
How’s it ever gonna turn around
So I turned my eyes to Heaven
I thought, “God, why don’t You do something?”
Well, I just couldn’t bear the thought of
People living in poverty
Children sold into slavery
The thought disgusted me
So, I shook my fist at Heaven
Said, “God, why don’t You do something?”
He said, “I did, I created you”If not us, then who
If not me and you
Right now, it’s time for us to do something
If not now, then when
Will we see an end
To all this pain
It’s not enough to do nothing
It’s time for us to do something

I’m so tired of talking
About how we are God’s hands and feet
But it’s easier to say than to be
Live like angels of apathy who tell ourselves
It’s alright, “somebody else will do something”
Well, I don’t know about you
But I’m sick and tired of life with no desire
I don’t want a flame, I want a fire
I wanna be the one who stands up and says,
“I’m gonna do something”

If not us, then who
If not me and you
Right now, it’s time for us to do something
If not now, then when
Will we see an end
To all this pain
It’s not enough to do nothing
It’s time for us to do something

We are the salt of the earth
We are a city on a hill (shine shine, shine shine)
But we’re never gonna change the world
By standing still
No we won’t stand still
No we won’t stand still
No we won’t stand still

If not us, then who
If not me and you
Right now, it’s time for us to do something
If not now, then when
Will we see an end
To all this pain
It’s not enough to do nothing
It’s time for us to do something [x3]

“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.

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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.

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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

Freedom IS NOT Free!

When I taught Social Studies I most enjoyed the curriculum that allowed me to teach about the United States.  It made me sad on Friday to overhear conversations about this upcoming weekend, and never once feel there was an understanding of Veteran’s Day.  When I was a fifth grade teacher the children wrote about their “Rights and Responsibilities” as American citizens.  That was a long time ago.

I was raised to answer the question, “Where are you from?”  with, “The United States.”  Growing up, that aggravated more than one person who was looking to learn where my ancestors had traveled from to arrive in America.

Precise language.  They learned to ask the question they wanted to know the answer to, or not to ask.

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I am the proud daughter of a Vietnam Veteran, and the grateful granddaughter to 3 WWII veterans.  Although 2 of my grandfathers are no longer here with us in body – their spirits remain strong in my soul.

All of the men I mentioned served in war.  All of them returned home to us.  All of them shaped my life and helped me become the woman I am today.

veterans day pop thompson

Pop T. came home after serving in Iwo Jima, to raise a family of 9 – 8 boys and a girl.  Visiting their house as a child was certainly wildly fun.  My father is the oldest child, and my sister and I were the first grandchildren.  We enjoyed time with Pop who had left behind a promising athletic future before his service in the war.  He had time to impart much of his wisdom before he passed in 1993.  My only sadness is for my many cousins that never got to know him the way I did.  There is no denying his legacy.

veterans day ggpa

GGPa came into our lives later when Mom married Ken.  I was 15 years old, and my sister was 18.  Ken wrapped his arms and his heart around both of us, and truly made my world a better place.  At the time his parents, who came to be known to us as GGPa and GGMa had no grandchildren of their own.  I was so flattered that they accepted us and enveloped us with such love.  GGPa is gone over a year now, but in our years together I got to know the definition of “gentleman” through him.  He was a positive influence, a pleasure to be around and a treat to talk to.  He is missed and loved and appreciated.

veterans day pop and gigi

Pop G. is one of the most amazing men I have ever had the pleasure of knowing.  The fact that I will turn 40 next week, and I can recount my day by saying “I spent some time with my grandparents,” in and of itself is amazing.  Not to mention  that they are 93 and 94 – living in the second floor of their own home.  I grew up during my most formative years, in the first floor of that home.  I had the daily love and support of my grandparents.  When I speak of Pop, and the influence he has had, even I am at a loss for words.  His faith dictates how he lives.  He loves God, his family, and all others before himself.  I am so blessed to listen to his stories, and to revel in years of beautiful memories, while still making more!

veterans day dad

And then there is my father.  The free spirit whose love of adventure has guided him down many paths in his life.  We have conversations that always leave me deep in thought.  He has experiences that are broad, from far and wide.  Most recently in the last few years that road led him right back closer to home, and I have been so grateful to have him just around the corner.  My girl has gotten to know him, and always remarks about his smile.  He tells her he smiles because of her.   His genuine heart, and the depth of his love have made him the person he is today – one I am truly glad to have in my life.

There are children who seek desperately one male influence in their lives.  The amount of time I have been afforded with each of these men is a gift.  I will not squander the knowledge, and life lessons I desperately try to soak up like a sponge.

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Each of them saw things I do not dare imagine.  Each of them lived experiences I will never understand.  Each of them sacrificed, time, love, health, and so much more.

I can only imagine that at some point they have all wondered why they got to come home when some of their comrades did not.  And, while I can not ever know the plan – I can, on my knees thank God for returning each of them safely so they could live their lives.

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Not everyone is as fortunate.

I have received a gift too great to squander, too valuable to toss aside, and too personal not to wear it close to my heart each day.  For it is because of them that I am.  It is because of them that I have learned poise, strength, and grace under pressure.  It is because of them that I know to love so deeply.  It is because of them I have been blessed with my daughter, unique, RARE, and determined to change the world.

Stand for the Pledge of Allegiance and the “Star Spangled Banner.”  Think about the words.  Feel them in your heart.  Educate yourself.  Learn about the sacrifices made to make this country.

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You may want to complain that life isn’t perfect.  You may want to complain about the country.  And while I can agree that many things are not as they should be, remember what my grandfather said to me, “The Constitution is an extremely well-written document, the flaws are in its execution.”

And regardless of your political stance on any war ever – support the soldiers.  Those men and women are there out of a selfless love of country.  They are making sacrifices far beyond what we see and what we know.

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Precise language.

I am PROUD to be an AMERICAN, and even prouder to be related to so many who loved this country enough to fight to defend the principles it was founded upon.

Veteran’s Day. November 11.  FREEDOM ISN’T FREE.

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