Marine – beatingcowdens

DO SOMETHING!

Published on April 13, 2016April 13, 2016 by beatingcowdens1 Comment

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.

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…

It says…

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

Here Comes the Sun…

Published on March 29, 2015 by beatingcowdens5 Comments

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

“Here Comes The Sun”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The 25 fly… (red cap)

The first leg of the freestyle relay.

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

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

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

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

“The Few, The Proud…”

Published on January 24, 2015January 24, 2015 by beatingcowdens2 Comments

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.

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.

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.

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.

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.

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.

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.

“A tranquil mind is not a little gift…”

Published on August 22, 2014 by beatingcowdens1 Comment

Growing up I didn’t spend a lot of time with my father. Despite some really fun day trips, I didn’t really know him well at all.

My Mom married an incredible guy when I was in high school, and there was this love and support that was there every day. We got to know each other quickly and well.

And that’s my tale of two fathers.

Ken has been a constant in my life since I was 15. He loves me like his own, and has treated my as such, without fail, and in all things. I adore him.

Dad struggled after Vietnam, after horrors that I can only imagine. He struggled to find his way, and to find the balance. He married twice, and had three kids, then he spent 10+ years in a long relationship. He lived all over. He worked to add his charm and personality to nightclubs all over NY. He knew how to live on top of the world, and at its bottom.

Several years ago life brought him back local, and for the first time that I could remember, he wasn’t working nights. We spent more time together. He came to dance recitals and swim meets for Meghan. He came to my house for gatherings, and just to be with us. We liked having him around. All of us. Even the dogs.

I got to have two “Dads.” While one is called Ken and one was called Dad, the terms are synonymous. Two very different people. Very lucky girl.

And I used this time to catch up with Dad. We would talk on the phone a lot, about anything. Sometimes he would talk. And when he did, I listened. When he really talked about old stories I sometimes even took notes. Because I didn’t want to forget anything. I don’t think he would have loved that idea. I suspect he would have thought it wasn’t worth my time. But, it was.

Lots of times I would talk. He was a really good listener. He knew when to interject and when to stay quiet. He knew when I needed to hear advice, and when I just needed a sympathetic ear. Sometimes I get overwhelmed. And I just need to offload, without judgment or solution. I called every Friday that I grocery shopped. Sometimes we talked for hours.

And the years saw a transformation as he was being treated finally for the PTSD that had tormented his every move since the war. He didn’t talk much about it, but every once in a while… it was my turn to listen carefully. And I did. Gratefully.

Then the conversations started to include talk of him being tired. Looking for energy. Millions of excuses listed, tried, tossed. Then there was the jaundice. And the blockage. And the pancreatic cancer. And within about 10 weeks my sister and brother and I said goodbye to our Marine. “The few, the proud…” to the very end.

Dad was a philosopher. Sometimes I was right with him. Other times we didn’t quite agree. But, it never mattered.

And in the weeks before his death I became his healthcare proxy – because I do healthcare all the time. And I got his medical records,and put them in a binder, and Dad laughed because he somehow knew I would – and so did my brother and sister, and my siblings and I took him to the fancier hospital. And we asked some questions. And we talked a lot. But, it was done. In the end it was just time for it to be the end.

But I was not, and am not ready to let go. Maybe that’s unhealthy. Or maybe that’s keeping the memory alive. Whatever.

It took weeks to clean out his small apartment. I touched every paper. I read, and sorted, and filed. I made more binders, and file folders. I shredded only with great care at my own dining room table. And as I sorted I found little scraps of paper. Little random thoughts. Notes. Scribbles of Dad’s. So I gathered them all together and I taped them onto large sheets and I saved them as a PDF for my brother and sister. And I laminated the originals for me. And sometimes on quiet nights, when my mind is busy and I can’t sleep, I peek through those notes. Almost like a chat with Dad.

Tonight I flipped open to the words, “A tranquil mind is not a little gift.”

And I paused. And I smiled. Dad’s mind was not always tranquil. But in the end it was even through physical torment. He had lived enough emotional torment to know “A tranquil mind is not a little gift.”

I am a worrier. Not a shock to those who know me even a little. But, also not unfair, all things considered.

This was a light week here for doctors. Only 2 appointments and one argument with a disrespectful office manager that led to a formal complaint. Oh, and one random really large pathology bill that was clearly not done right. The appointments were fine. One was annoying in the leaving at 7 for an 8:30 to be taken at 10:40 to get home around 2, but all things considered it was smooth. The other was with the gastro doctor who wants another visit to the ENT to peek down at the esophagus. (If only I could get a scheduler to do these things…) And the fight of course was with my doctor. The office staff of a vascular surgeon for a procedure I definitely need soon. I’m in the market for a new vascular surgeon.

But since we had some time, and we were looking for some light entertainment, we replaced the bay window in the front of the house.

So after a slightly tumultuous, but altogether fun trip to Disney, we returned very late Tuesday, slept most of Wednesday. Did lots of laundry, sent my husband to help out at my sister’s on Thursday, and Friday got ready for the new window.

Not that we WANTED a new window. We just bought the other one 14 years ago when we moved into the house. But about 2 years ago there was this little black spot that kept growing. And we called the company to look at it, but it turned out there was a class action lawsuit we had to participate in and I filled out miles of paper and it took almost a year to get someone to the house. By the time they came the little black spot was large and clearly water related. So the nice man took pictures and the conversation was about replacing the center of the window. Until they called the next day and said the black spot was in the wrong places, and the window would have to be replaced. But since the window was over 10 years old we’d get a percentage off the cost for the window and installation. Um, well that price was so wild we bought the window ourselves. And Ken and Felix and his friend John got it to our house, and finally Saturday all the planets aligned to put it in.

It was supposed to be a half day job. It was supposed to fit right in. And Felix, and Ken, and John, and Bobby, and Brendan worked their bottoms off. But, there was some cutting of walls, and by the time it was all back together on the outside it was well past 11 pm. That wasn’t the inside.

I like the house neat. Actually I need the house neat. And you can tell me whatever you want about how it doesn’t always happen like that, or I have to give it up. But I can’t and I won’t. Because it’s a control thing. I know it. I’ll own it. I can not control Cowden’s Syndrome, or any aspect of why Meghan feels cruddy so much of the time. I can not control random illnesses or natural disasters, or unscheduled hospitalizations and surgeries, or any other obstacle that is going to come into my way. But, through much experience I have found it markedly easier to handle every single crisis with a clean house. Something about having order in the home, gives me some sense of peace when the waters are very rocky.

So, at 11 on Saturday night I looked around and began to freak a bit. That’s when we decided to paint. It was time anyway, and the house was on its ear so to speak. So I prepped the room and there was paint. And the living room and dining room are back together, but the hall needs a coat too… and you get the idea.

Not to mention that a few weeks ago Meghan began the move from her room on our floor to the upstairs of our cape. There are two rooms with that peaked roof and lots of floor space. (There have to be some perks to being an only!) She has a bedroom, and a room with a desk, and all the things she loves. It has taken 4 weeks to clean out and move her, but we finished today. And as I sat in her room I cried a little. I remember distinctly being 9 months pregnant and crying in that room (see a pattern?) I was so scared. I was right to be scared. Some scary things have happened in the last 11 years. This time I know the move upstairs will be far less painful than the one she’s sure to make just a few short summers from now.

It was a good time to move. Junior High starts in just a few days really. A whole new school. A new chapter. Turning point. And as she decided what to keep, toss, and donate, her personality began to shine through. With just a few pictures left to hang, she has created an atmosphere that is representative of her. Now to keep it clean and clutter free… 🙂

But nothing is without event, and there is no time when I am fully at rest, as I frantically tossed my flip-flops off when I heard her cry out,” I NEED YOU!” I arrived at the top of the stairs to find her crouched over grabbing a leg that has been giving her trouble for days. One too many trips up the stairs, or on the floor sorting things? Who knows. Just like the headache that’s been around one day too many. Sinuses, allergies? God, I hope so.

At some point I’ll have to go to sleep tonight. And tomorrow will be for more appointment making, and dealing with random bills. The side of the house is littered with trash. There are 10 bags being donated Saturday morning. The clutter and dirt are disappearing simultaneously – with LOTS and LOTS and LOTS and LOTS of work. But my sanity is being restored.

And while this is far from how I would have chosen to spend this week – so close to the end of summer, Meghan got some time in with some friends so it was in fact a success.

So much flux. Moving Dads things in earlier in the year jostled the basement. Moving Meghan upstairs caused some purging. And slowly everything is coming together as it always seems to.

I think of how many times I would have called my Dad this week. The number is too high to count. I miss him every day.

He told me once to keep writing, to just keep letting it all out no matter what I thought of it. So I do. And I think about how he would have respected my need for order, while encouraging me not to sweat the small stuff.

Tonight I think calls for a glass of wine, and some reflection. Gratitude for an almost “normal” week with largely “normal” problems. Feeling grateful that my mind, while always a flutter, is somewhat tranquil, and…

“A tranquil mind is not a little gift…”

Thanks for the chat Dad. I miss you. A whole lot.

Happy Birthday Dad

Published on April 17, 2014April 17, 2014 by beatingcowdens8 Comments

** I rarely go off the topic of Cowden’s Syndrome, but this is just so necessary. Tomorrow April 18, 2014 my Dad would have been 66.**

Dear Dad,

It’s hard to imagine a year has gone by since you sat at my dining room table. We shared pizza, and red wine, and ice cream cake. And you, who had eaten in some of the most gourmet restaurants around, were so gracious, and thrilled to enjoy a simple dinner with Meghan and Felix and I in honor of your birthday.

You even tolerated coffee from my Keurig with a warm smile.

I still remember that night as if it was yesterday.

"Don't take out the knife!" — “Don’t take out the knife!”

And here I sit a year later… in awe of all that has gone on. Stunned that you aren’t here to celebrate.

Thinking back your year is proof positive that we need to live each moment with the knowledge there is no guarantee of tomorrow.

But, you knew that. You learned that lesson many years ago as a young Marine in the jungles of Vietnam. Then, you lived it. And you learned, and you grew, and you learned some more. But, you lived each day without malice in your heart, and with the never ending desire to do the best you could with what you had where you were.

We didn’t always have it quite right, Dad. There were years where you weren’t around too much, and I missed you. And I’ll admit to even spending some of those years a bit angry. But, I grew up.

And Mom, she did the right thing. I got to work through it all, and come out better and closer to you in the end. Heck. I made out like a bandit, because when Mom married Ken, I got to enjoy all the benefits of two Dads. Not a replacement – either one, but two! What a lucky girl…

When you came back to Staten Island a few years ago I was thrilled. Now, a mile away from my house, I got to see you more than I even had before. You got to see Meghan. And I watched a relationship blossom between you.

You were there for her dance recitals, and some swim meets. You watched her on days off from school. You taught her chess.

You got some time to get to know her during years when life had kept us apart. I felt so much closure. So much love.

You smiled all the time when you were with her, and that smile is what she carries with her each day even now.

Even when we didn’t see each other, we spoke. A lot. I loved bouncing ideas off of you, and even when we didn’t agree, I loved hearing your point of view. You always HEARD me. You never JUDGED me. You listened intently to mine and Meghan’s medical issues, and I valued your perspective. I looked forward to talking to you. Especially on the cell phone (hands free of course!) on my way home from Whole Foods. Your voice always gave me energy after a long night.

Except for that one night. When I called you on a Friday from the road back from Whole Foods, and you told me you were in ICU. Stunned, I told you I’d see you in the morning. You said I didn’t “have” to come.

We spent a lot of time together those days as they ran test after test. You were getting edgy. A caged bird.

I took you home after the answers stayed sketchy. But I was worried.

You who could walk miles. You who could work countless hours. You who was always busy. You were tired.

Your skin told the tale of jaundice. Your eyes were tired.

Meghan asked and asked to see you. You put her off. You wanted to feel better.

Then on Halloween we got a 5 minute visit…

And even though she was worried about you, that hug carried her for quite some time.

There were appointments. Back and forth. I was so grateful to be able to take you. And I was so thankful for the time we had – to talk about everything and anything.

We had some easy conversations, and we had some of the hardest conversations I will ever have in my life. But I am grateful for every one of them.

You see I always loved you – but not until those last months did I really get to know you.

“I always wanted to exclude you from my pain, never my love. But the two became one in the same.”

And in that moment there was peace. You spoke what I knew. In very few words you elaborated on the Marine who returned from Vietnam, forever changed. You told me about the hurt, and the heartache, and the fear. I learned later the scope of the losses you suffered through, and the horrors you experienced. No wonder. No wonder at all.

The months got all garbled up. There was Shane, in to stay for a while, at exactly the right time. There was Lisa, at the ready to drive anywhere we needed to be. your “team” converged, got our acts together, discovered our skill sets and became unstoppable.

Road Trips to Columbia Presbyterian. Gut wrenching diagnostic testing. Your strength – surreal. Your focus – laser sharp.

You were back to survival mode. A Marine in the jungle. We were in awe.

That last week at the VA was torture, and therapy all at the same time. You had made your wishes clear. We knew the mission. We just didn’t like it one bit.

And when the angels grabbed hold of you on December 4th, and we knew that you were finally able to rest, there was a painful peace among us.

The days of your funeral were surreal.

The days after it just as intense. So many people had to be notified. Somewhere in your 6,000 contacts we found the strength to reach out to those who loved you so.

Perhaps if I had one wish, one regret- it would be that you didn’t know how much you were loved. By your family, and by those whose lives you touched on a daily basis.

You changed people. Your impact was intense.

You suffered too much Dad, with the physical, and emotional traumas of a war fought as a young man. For 45 years you bore burdens too intense for the strongest to process. You were tired.

You told me once about Cowden’s Syndrome to never let it define Meghan and I. You told me to listen to my heart and my gut, just as much, if not more than I listened to the doctors. No worries Dad. I haven’t forgotten.

I am sad that the cancer reached up and snatched you away – with no warning. I am at least in that way grateful for the warning system that is Cowden’s Syndrome. But, don’t worry Dad… I will never forget.

You know in the months after you died I reached out to your Marines. The few you spoke a little about, and the ones I had never heard of before. There were photos, and then names, and then long conversations. They, each of them a gentleman, called me upon hearing of your death. With some I laughed. With some I cried. With all I felt a bond. They were also your brothers, each one. I learned the meaning of “Semper Fi” in those conversations. More than 45 years later they wanted to know what they could do. And they meant it.

You would be so proud to know. You are remembered. Not as a saint, but as a good man. A man who made mistakes, and owned up to them. A man who loved, deeply. A man who desired to make the world better. A man who taught by living. A man who saw beauty through his camera lens.

You made a difference; to your Marine Brothers, to your parents, to your children, to your grandchildren, to your siblings, to your nieces and nephews, to the friends form all walks of life who loved you so, to the people you worked for, to the people you worked with, and to the people who worked for you.

We played music the day before you died. You smiled. We laughed. That is the spirit I hold close in my heart – even through my tears.