beatingcowdens

“There’s a bit of magic in everything, and then some loss to even things out…”

Published on December 28, 2013December 28, 2013 by beatingcowdens1 Comment

As I walked away from the pizza place, holding my girl’s hand, with tears streaming freely down my face the song “Magic and Loss” by Lou Reed crept out of my subconscious and began playing with frightening accuracy inside my head. I have thought of the song from time to time over the last 20 or so years. The album was first introduced to me by a dear friend soon after the passing of my beloved cousin “Angel Meghan” at the age of 6 in 1991. As an elementary school teacher I have been known to “think” in books, but its more unusual for me to “think” in song. It isn’t too often that a song “speaks” to me…

When you pass through the fire, you pass through humble
You pass through a maze of self doubt
When you pass through humble, the lights can blind you
Some people never figure that out

You pass through arrogance, you pass through hurt
You pass through an ever present past
And it’s best not to wait for luck to save you
Pass through the fire to the light

Pass through the fire to the light
Pass through the fire to the light
It’s best not to wait for luck to save you
Pass through the fire to the light

I have a brother.

Birth congratulations to my Dad and my brother’s Mom, Kelly would be overdue by about 24.5 years. But I have a brother. And I am damned glad I do.

I have always loved him. Always known he was there. Always followed the tales of his life from afar. Always sent a card. But, never really got to spend any quality time with him. Knew he was well loved. Knew he was tons of fun. But never really got to KNOW him. Not by anyone’s fault. Life and circumstances have a way of getting in the way.

And then some time in November I had to make a phone call. I had to call him in the middle of the life he established Texas, and tell him Dad was sick. Quite sick.

I had known for a few weeks. I had seen him in the ICU. I knew about the jaundice. I knew in my gut things were not good. But it took weeks to get Dad to let me tell my sister the full extent of the problems looming. Then finally he let me call my brother.

And while the weight of the guilt of carrying that secret was coming off of my shoulders, I knew it was delivering a crushing blow miles and miles away.

A few days to digest, and then another call. “I think you need to come.”

And that was all I needed to say.

He stepped off the plane a few days later at exactly the most perfect time. He parked himself right in Dad’s apartment and stayed. He was there for those overnights that were getting a bit tricky – to say the least.

As you pass through the fire, your right hand waving
There are things you have to throw out
That caustic dread inside your head
Will never help you out

You have to be very strong, ’cause you’ll start from zero
Over and over again
And as the smoke clears there’s an all consuming fire
Lyin’ straight ahead

Lyin’ straight ahead
Lyin’ straight ahead
As the smoke clears there’s an all consuming fire
Lyin’ straight ahead

Dad was getting sicker. Quickly. And despite our initial desires to deny the reality, we knew that we were walking uncharted territory.

I grew up with two sisters -one older, and one younger. We grew up understanding each other’s strengths and weaknesses, and working on love throughout. Now I was in a different trio. A different dynamic. For a different purpose. One none of us wanted to face – but we were there. And the “All consuming fire” was “lyin’ straight ahead.”

We formed Dad’s “Team,” his three children, with whom he developed three distinctly different relationships through the years. We took the best of what each of us had to offer. We laughed at old stories. We cried out of sadness and frustration, and anger and disappointment. We held each other with gratitude for the man whose common link between us all had done wonders to bring us together.

Waiting for Dad’s procedure at Columbia Presbyterian – the one that was supposed to be 45 minutes, and was unsuccessful at 3 hours- we were all in quite a state. My brother, aware of Meghan’s countless procedures at one point looked at me awestruck. “You do THIS all the time?”

Well – not quite THAT… but to some extent yes.

And there were times that we sat, each on our own personal hell. Wondering, worrying, agonizing, reflecting, and above all desperately wanting to make it better. We sought the magic wand… and realized it was already in place.

They say no one person can do it all
But you want to in your head
But you can’t be Shakespeare and you can’t be Joyce
So what is left instead

You’re stuck with yourself and a rage that can hurt you
You have to start at the beginning again
And just this moment this wonderful fire
Started up again

When you pass through humble, when you pass through sickly
When you pass through I’m better than you all
When you pass through anger and self deprecation
And have the strength to acknowledge it all

When the past makes you laugh and you can savor the magic
That let you survive your own war
You find that that fire is passion
And there’s a door up ahead not a wall

Dad’s struggles. Dad’s worries. Dad’s heartache. His pain. They were about to end. He was going to be free from his broken body. He was going to be free of his suffering and his pain.

But what about us?

I know all about the truth, and I believe deeply in Heaven. But I am selfish. I miss him. I miss my sounding board. My ally in all endeavors. My confidant for the “blow by blow” struggles that were too tough for others to hear.

“There’s a door up ahead not a wall…”

We met at the cemetery today. We stood for a while. We cried a little. We prayed a little. We held each other a lot. We know he’s not there. He is in the crystal blue sky and the winds that blow, and in the hearts of all who love him. But I admit to not shaking the selfishness.

We ate pizza as a family. The conversation was easy and light. Except when Meghan butted up real close to her uncle to talk about her biopsy Tuesday morning. Darned Cowden’s syndrome won’t cut her a rest. She told him all about the arrival time, and the procedure. She spoke like a pro – someone easily twice her age.

So much uncertainty. So much loss. So much worry. So much… so soon.

She has taken an extra love to her Uncle Shane these last few weeks. This whirlwind that took her Grandpa from her just as their relationship was budding, seems to have left her a pretty cool uncle to share some love with.

As you pass through fire as you pass through fire
Tryin’ to remember it’s name
When you pass through fire lickin’ at your lips
You cannot remain the same

And if the building’s burning move towards that door
But don’t put the flames out
There’s a bit of magic in everything
And then some loss to even things out

Some loss to even things out
Some loss to even things out
There’s a bit of magic in everything
And then some loss to even things out – Lou Reed

I have a brother. And now I have to let him go. But not far. And certainly not forever. For no one can live through what we lived through these last few weeks and remain the same. There are experiences once shared that can not be forgotten. There is respect earned that can never be lost. The lesson, the reminder that life is fragile and fleeting remains forever. I always had 2 sisters. And I always loved them so.

But now, with an ache in my heart, and tears on my face, I have a brother too.

“There’s a bit of magic in everything, and then some loss to even things out…”

Photo credit -Meghan 12/28/13 — With a “Smile” from Grandpa Tom

Disconnected

Published on December 19, 2013December 19, 2013 by beatingcowdens1 Comment

Breathe in… Breathe out… Breathe in…

I looked up at my Christmas Tree this week and was struck with the incredible sense that I would love to take it down. Now.

I know that’s wrong for any number of reasons, but I have always been candid here.

In the 10 days since we have buried my father there has been a whirlwind of papers and errands. There have been things to organize and sort. There have also been “regular” things to do, as I pretend to feel like I am part of the world going on around me.

And as I sat in the chair last night trying to absorb the beauty of the brightly lit tree and the litany of memories spread out across it as the ornaments we have collected through the years, I couldn’t shake how disconnected I feel.

This year the reasons are kind of obvious. I am starting to think its likely to get worse before it gets anywhere close to better.

Then my husband reminded me about last year. He reminded me about Hurricane Sandy, and the fall Grandma took, and the days in ICU. He reminded me about the car accident last November, and the months spent sorting out the paper, aggravation, and pain in my back.

It was right after Christmas last year that we had the “Santa” talk with my girl. My one and only.

So, I guess I knew all along this would be a year I had to look a bit harder for the magic. We looked hard in Disney in August. And we found it.

But, by the time we put the tree up this year my father lay dying in the hospital with less than a week to live. That day our family turkey and Felix’s special gluten free stuffing warmed the house with a soothing aroma. I heard the Christmas tunes. I helped with the ornaments. And I felt like I was in a bad movie.

Meghan had suffered with migraine headaches most of October and November as my father was sick. An MRI on November 20th confirmed the migraine headache diagnosis and the medication – once doubled – finally brought her some relief.

I couldn’t get the cards together this year. I just couldn’t do it. Maybe some time around Valentine’s Day I will feel up to a greeting. I ordered the food for Christmas dinner too. Yep, its better for everyone anyway, as I am a rotten cook. And the family is bringing dessert. I bought gifts for the children. Although even those were mostly purchased online. And so many of the adults are getting gift cards to their favorite stores.

Last weekend Dad’s mom was in the hospital. Today she is back at her home, but she is worn out.

And as I size up the dust that has gathered in every corner of my home I strive to remind myself that Baby Jesus was born in a stable, and slept in a manger. Somehow, as long as we open our hearts to celebrate the real meaning of Christmas, the miracle of the birth of the Baby Jesus, it will all be ok. Somehow.

So tonight as I took Meghan to her 6 month thyroid check up; the appointment where they monitor those pesky precancerous nodules, I was reminded yet again that it is just not ours to control. After the doctor examined her, and her neck, he asked for a tape measure. He measured “significant” growth since June in one of the right side nodules. “No point in wasting time with a sonogram, I need a tissue sample so we will schedule a biopsy.”

My heart skipped a beat.

“Where did you get that necklace Meghan?” asked the nurse.

“My Grandpa Tom gave it to me. He died this month from pancreatic cancer.”

Sometimes silence really is deafening.

“It may take a few days to get it scheduled Mrs. Ortega. You know, with the holidays…”

Yep. I know.

This one is for my favorite Marine

Published on December 7, 2013December 7, 2013 by beatingcowdens9 Comments

There is a small sign on the first floor of the Veteran’s Hospital in Brooklyn, NY that expresses this sentiment.

It is small enough that I missed it the first week my Dad, a Vietnam Veteran was in the ICU for what they initially suspected to be liver failure.

But I noticed it last week. Dad died on December 4th after a short, yet powerful battle with pancreatic cancer.

The Price of Freedom, of our freedom, the basic ones that we are all guilty of taking for granted at some point – is visible at that VA Hospital. It is visible on the faces of the soldiers as they trek the halls, their journeys each through the battlefields of their own personal wars.

I have been away from my blog for a long time, and as I sit to write in the middle of the night, I can feel the tension finally beginning to lift from my neck. Writing is my therapy and its cheaper and easier than the wait and the copay at any doctor’s office.

Dad didn’t have Cowden’s Syndrome. Or at least we don’t think he did. As a matter of fact, prior to his death, with the exception of one procedure – he was never really sick a day in his life. When we would go to his appointments together, nurses would repeat in disbelief, “You don’t take ANY medicine?” And he didn’t. Not even a Tylenol.

Which is one of the things that has been bothering me so much.

I have held in my thoughts on this out of respect for Dad and his privacy – but since he encouraged my writing I am fairly sure he wouldn’t mind if I shared just a bit.

Dad saw active combat in the USMC during the late 1960s in Vietnam. And besides the typical tortures of war, Dad was exposed to Agent Orange.

Now his body was seemingly unaffected from the toxins, but we theorized on more than one occasion that perhaps that toxic exposure triggered my own gene mutation into Cowden’s Syndrome. Of course no one will ever know. And even as I wonder if his cancer was a result of his own toxic exposure, I know I will never be quite sure. His Dad, my Grandpa, died of pancreatic cancer in 1993.

But pancreatic cancer IS a genetic disease. And even though in 90% of the cases, the genes spontaneously mutate, there are 10% where the genes are passed within families. I don’t know the exact genes responsible, although I will in the coming months, as the genetic counselor where Dad was diagnosed will be contacting my siblings and I for testing.

More genetic testing? It’s a thought too overwhelming to process right now. That will come with time I guess.

I can’t help but wonder when there is too much knowledge. I know that sounds foolish, coming from someone whose life was saved by the early warnings afforded to me after my Cowden’s diagnosis. However, there is a point, a fine line, where you start to wonder when too much knowledge becomes a bad thing.

Tonight my thoughts are all over the map. Tonight I prepare mentally for the wake and funeral over the next few days. Tonight, I think about my Dad – the man.

Dad enlisted in the United States Marine Corps right out of high school. He saw 13 months of active combat before returning to marry his high school sweetheart, my mom. But, as young relationships so often go, this one ended a few years later.

Dad spent years trying to get settled in his heart after the trauma he experienced in the war. He married again, and had a son, my brother. But that marriage was not to be either.

Dad seemed to have a need to move like the wind for a lot of years, and our relationship through college was pretty distant. Then in 1999, a year before my wedding, we began to reconnect, and our relationship had become closer each passing year.

Dad was not a saint. But he was a good man with a good heart. He was strong in mind, body and spirit. Dad did the best he could with what he had where he was – always.

I spent lots of time working to understand the trauma that follows Veterans home. Because of that I will always respect my father and the ways he tried his best.

But if I am honest, I am angry. Really angry. Not at my Dad, but at the cancer that snatched him from me just as we were coming closer and closer together. The damned cancer that cut short a relationship just starting to bloom. We had plans. We were going to see the cherry blossoms in DC in the spring. We still had things to do.

Instead I am left with another ribbon to add to the collection. One none of us ever wanted to own.

Dad often spoke about life being a puzzle, and each of us having a piece to contribute. From our perspective its hard to see where we fit, and how our piece changes the landscape. But, when our job is finished, our piece is placed into the puzzle – the greater puzzle – the one with no definitive number of pieces. While this happens, our surrounding pieces are created. The puzzle grows, visible in its entirety only to our the Creator.

As Dad’s piece was being placed into that puzzle, I was being reconnected with my brother, and bonding with my sister. We learned to work together, to embrace our gifts, and our differences as strengths. As a unit we were an unstoppable force getting our father anything he needed during these last difficult weeks, and I am so proud to be part of that “team.”

My father’s inner strength defies description, as he journeyed through his last days focused on a few key things he was compelled to accomplish. Almost impossible to eat comfortably, Dad carefully conserved his energy and skillfully kept his body functional until he was able to receive his definitive diagnosis. A diagnosis I am certain he fought for so that his children would have the ability for advance screening.

Dad was admitted to the VA Hospital on Thanksgiving Day, and lived for a week, as a parade of family and friends got to spent time by his side.

I walked the halls of that hospital quite a bit last week, reading prints of the NYC Vietnam Memorial such as these, as my already deep respect for our country’s veterans grew.

We laughed, and cried, and told stories, and played music. We held Dad’s hands in the moments before he went to meet the angels. We were gifted with time to say goodbye.

My tears are not for my father. He is finally free. He paid the price for our freedom for all of his adult life. Now he is at peace.

My tears are because I want more time. My tears are selfish. But I guess I good sign that you really love someone is when you can’t seem to bring yourself to say goodbye.

There will be time for thinking and reflecting on Dad, his life, his death, genetics, and long-term ramifications.

But for now, I have to get some rest. Three days ahead to celebrate the life of my favorite Marine.

Semper Fi, Daddy. I love you.

50,000!

Published on November 22, 2013 by beatingcowdensLeave a comment

Unwinding from another wild week I checked in here to find that at some point very soon this “Beating Cowden’s” blog will clear 50,000 views. The number is almost incomprehensible to me. I am humbled by the support, and the ability to raise awareness of ours and other rare diseases.

This week Meghan endured ANOTHER MRI. This time her head was firmly fixed in a cage as she had her brain scanned on every level. while receiving 8ccs of the gadolinium contrast dye that I suspect has been helping cause the headaches to being with. Irony. Exasperation.

The bright spot came in the words, “There is no tumor. There is no AVM.”

Sweet relief and agonizing frustration simultaneously.

Grateful beyond measure that there is no need for brain surgery. Relieved to my core that there is no evidence of any suspicious mass or vascular malformation.

Distressed, worried, disturbed, and sad about the diagnosis of chronic migraines. Please spare me “It could be worse.” I know. So does she. But I have to tell you about 3 hours after starting a migraine I am done. She has been at it 2 months. She has not missed a day of school, managed an almost perfect report card, and made it to some swim practices. She just keeps plugging.

So, we doubled the medicine – striving for the day the pain scale hits 0 again, and hoping it’s soon.

Lots of kids without Cowden’s get migraines – but somehow as the detective in me uncovers her triggers I suspect they will be linked.

And one day soon she will feel strong enough to get back into the pool for swim practice. Her health has allowed her only about one practice every 2 weeks. Her goals are much higher. Patience.

Working on ways to safely rid her body of gadolinium and other toxins not proven to cause, but clearly not helping the headache situation. We will figure it out. The stakes are too high to give up.

The rest of the stuff. The worries that are just real life worries, and not Cowden’s worries at all. The ones I can’t blog about. They are the ones keeping my heart extra heavy.

Thanks for tagging along on our journey!

Give Thanks…

Published on November 19, 2013November 20, 2013 by beatingcowdens2 Comments

I like fall. I prefer the optimism and new beginnings that come with spring, but I do love fall. I like the sweatshirt jacket weather, and the pumpkins and apples, and the beautiful fall leaves. I like basking in the mystery and wonder of the beautiful colors as they fall through the branches to the ground, and blow through the air with the brisk wind. But, this year I almost missed it.

I sat on the steps Saturday as my husband frantically gathered leaves into bags so they could stop blowing all over our neighbors lawns. And, in our haste I almost didn’t notice, or even take a minute to appreciate the beauty of what was before us.

A testimony on life, and a sad one.

We, like so many others, are busy. We are painfully busy at points. There is school, and work, and homework. There are Physical Therapy appointments, and swim practices. There are lessons to plan. There is a house to maintain, laundry to do, dogs to clean, floors to wash, and marathon grocery shopping every few weeks to keep my allergy girl well-fed. There is mail to sort – regular junk to be shredded, bills to pay now and bills to pay later. And that’s just here.

There are family members grossly under-visited. There are people we love so much that live right close to us – who we never see. There are friends short distances away we haven’t seen in years.

And yet, usually we find a few minutes in the fall. A few minutes to toss some leaves around. A few minutes to giggle. So many thoughts flooded my mind as the last of the leaves hit the bag for this week. One more clean up and the trees will be bare for winter. And I looked up at that bright red tree above my doorway and took a minute to give thanks.

I needed to give thanks for the tree, above the new roof on the place we call our home. I needed to give thanks for my husband and the family and friends that helped it happen 13 years ago.

The fall leaves, like so many things that happen each year, are a beautiful reminder to give thanks – for beauty, for love, for hugs, for smiles…

Meghan got new glasses this week. She got her first pair in 2009, and her eyes have worsened steadily. As we picked them up, and she said, “WOW,” and “THANKS!” all at the same time – I was reminded of the little girl, who is now a young lady. I am struck by the genuine gratitude as her sight is restored. I am thankful for my vision, and the doctors who are able to help her have clear vision.

“Oh how the years go by…”

I have a friend or two who have given thanks every day this month, and I enjoy reading their thoughts and thankfulness each day.

For me I am thankful – but it’s more like a flow chart. One thing, one blessing, one bizarre set of circumstances leads to me being reminded of how many reasons I have to be thankful.

Tomorrow we go for that brain MRI. The one that will confirm that the suffering endured these last few months by my 10 year old who has seen so much, is “probably” migraines. Brain MRIs really suck. The only part to really be thankful for there is the part when they tell you they didn’t find anything.

These have been some difficult weeks. My heart is heavy, and worn. But I am thankful:

For my daughter, and her unfailing determined spirit.
For my husband, and his loving sense of humor, and his unending patience.
For my parents and grandparents, and the blessings of having them.
For my siblings, as we grow and experience life at different stages and paces.
For nephews of all ages and stages.
For my cousins and aunts and uncles all over the country – and for Facebook for helping me connect with so many.
For the friends who refuse to give up on me, even as I am not available – again. I take solace in knowing they will be there when I am.
For those I love who are sick in mind, body and spirit. Their strength inspires me.
For the doctors who care. Whether they get it right or wrong, my heart is open wide for the ones who care.
For Meghan’s teachers – past and present – school and church, and their ability to instill a love of learning.
For Internet friends – who support when other’s can’t.
For dogs, and their unending loyalty.
For two secure jobs in our home.
For giggling, and tickling and fake hand-made flowers.
For those of you who take the time to follow our journey.

I turned 40 last week and it wasn’t so bad. I am thinner and stronger, and more determined than I was in high school – albeit a lot more gray.

I guess that makes me thankful for hair dye.
And for boobs that don’t sag, and no need for a mammogram.
For size “small” – cause who knew people wear that?
For the Isagenix that taught me to eat nutrient rich food.
For the prayers of friends, and the strength and stamina to endure.

MRI tomorrow. Results to follow. Then, we will give thanks even for the torture of migraines, with the knowledge it beats the alternatives.

MOSTLY I AM THANKFUL FOR HOPE, as the Global Genes Project says – “It’s in our genes!”

Give Thanks!

My Guardian Angel wears a Gold Ribbon

Published on November 11, 2013November 11, 2013 by beatingcowdens4 Comments

My Guardian Angel is 6 in my heart. That’s the age she was the day in 1991 when she got her angel wings.

My Guardian Angel was tenacious. She was fun and feisty. She was strong, and wise beyond her years.

My Guardian Angel battled leukemia for four and a half years. She endured chemotherapy, spinal taps, bone marrow transplants, remission and relapse.

She loved watching “Lady and the Tramp” and she loved her baby sister. She loved stuffed animals, and my grandparents dog “Bo.”

My Guardian Angel was the first kid I ever got to really babysit for. We had some fun times.

My Guardian Angel is my cousin Meghan. She changed my life when she was born in 1985- and I lost a piece of me when she passed away in 1991.

My cousin Meghan went dancing with the angels the year I started college. It was snowing. It was my 18th birthday.

My love for Meghan and the deep loss permeated the next few years of my life. The pain never ever goes away- it changes you. But I decided that I would strive to be more like her. I would take her example of grace under pressure and model my life off of it.

"Angel Meghan" - 1987 — “Angel Meghan” – 1987

We were already forever intertwined and then she met Jesus on my birthday. The bond- the link- is unbreakable.

My Meghan was born a decade ago. She makes her namesake proud. She shares her strength, grace and wit. She endures medical challenges beyond measure. My Meghan has an angel on her shoulder too.

And over the last few years as the reality of Cowden’s Syndrome and it’s lifelong implications set in- Angel Meghan keeps me grounded. Whenever I want to be frustrated about the cancer risks we face- I am reminded that we are afforded a warning system. I am reminded that these sometimes grueling routine screenings have already proven life-saving for us. I can only imagine how desperately my aunt and uncle would have loved the warning system- and the prevention opportunities we have.

I wonder sometimes- what my cousin would have grown to be. I wonder what the 28 year old would be doing with her life. And then I stop.

Mine is not to figure out the plan. Mine is not to understand the hows and whys. My role is to take the lessons learned, and the people who have taught them and make them part of who I am today. Mine is to keep the memory of a special young girl alive- in my heart, in my life, in my actions, and in my daughter.

So as I brace to celebrate my 40th, on a day when emotions promise to run high, I remember.

Sweet Guardian Angel Meghan, flying with your gold ribbon friends.
Forever young.
Forever loved.
Forever remembered.
May 16, 1985- November 12, 1991

Freedom IS NOT Free!

Published on November 10, 2013 by beatingcowdens3 Comments

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.

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.

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.

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.

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!

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.

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.

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.

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.

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.

“Probably”

Published on November 5, 2013 by beatingcowdens2 Comments

I like the word “probably” a lot more when it is favorable. Although sometimes I feel like life is engulfed in ‘probably,’ ‘maybe,’ ‘most likely,’ or ‘I’m not sure.’

Today “probably” means it’s most likely migraines causing her agony.

And with some explanation that migraines can level even the strongest adults, she started to feel a bit better.

There was a thorough exam, and a kind, intelligent neurologist. He knew what Cowden’s Syndrome was, complimented my list of doctors, and even called the oncologist to talk about treatment options.

So my girl, whose pain had actually radiated down and into her shoulders was looking finally at an answer.

I understand her cautious suspicion, as things have often not gone according to plan.

However, this diagnosis actually makes sense. And having lived through my share of migraines, it even explains the level of pain.

So he is 90% sure.

Those are good odds.

Except there needs to be an MRI just to be 100% sure.

And MRI, with gadolinium. Again.

Three steps forward. Two steps back.

But once the MRI is done, and clean, and we can all breathe again, then its onward.

The medicine started tonight. It will be every night. Relief is long overdue.

Fingers crossed. Prayers gladly accepted.

Locks of Love

Published on November 4, 2013November 4, 2013 by beatingcowdens8 Comments

Some time earlier in the year Meghan told me she wanted to donate her hair.

Inspired by a few stories of children with cancer, and prior to her own diagnosis (a very mild and stable case) of alopecia areata, she knew something good could come of something so basic so she set about the business of growing her hair.

She knew she needed 10 inches to cut for “Locks of Love,” and she was determined.

I was inspired.

So while she grew hers, I quietly grew mine too. It wasn’t the first time she led me by her example.

And when her resolve strengthened I shared my intention with her, and we were set to donate our hair together in September.

Except mine wasn’t long enough – not yet. And maybe that was a blessing because she got to blaze the trail. She sat bravely as her pony tail was chopped off. She smiled as her curly hair bounced up as if it had been waiting for the weight to be released.

And somehow I think she grew up even more that day. And with that selfless act, she became even more beautiful, more mature.

So, when it was finally my turn, she held my hand. She held my camera. She reassured me that I had done something good.

Sometimes she is so much the grown up that it is frightening.

Sometimes, albeit rarely, she is a ten year old kid. I am working to treasure both.

It’s OK if my hero is 5’2”, wears a size 8.5 shoe, some of my clothes, and was born after the turn of the century right?

She makes me want to be a better person.

Do penguins have knees?

Published on November 4, 2013November 4, 2013 by beatingcowdensLeave a comment

I can credit someone else’s Facebook post for even allowing that random wondering to slip into my head. But it has served as a distraction… so I am grateful.

It’s hard for me when I need to choose my words carefully. I usually just lay it all on the line and that’s how I keep it together. Except when your heart is heavy because of matters that just need to be private, that makes it extra hard. So that is why I haven’t been posting much. But without my writing the voices just stay in my head, and then…

But my heart is full for so many reasons, and some I can share with you. Blessed by my consenting 10 year old, as long as I don’t disclose anything embarrassing – to educate the world about “beatingcowdens.”

The headaches have been around on and off for a while. So long that I don’t actually remember. It sounds awful that I as a mom could say that, but it’s true.

I remember the pediatrician saying to me that I should take her to a neurologist because he kept hearing me mention headaches. I remember being overwhelmed by too many doctors. I remember last year blaming the prescription change on her glasses. I remember blaming chelation. I remember blaming allergies…

But the headache hasn’t quit. It’s been weeks now.

It varies with intensity. We are trying to get her to understand and use a pain scale to get some consistency.

But pain is such a personal thing. It’s just not easy. We can never exactly know the pain of another because every body perceives pain differently.

What I do know is that there has been a headache to some extent for over a month and that’s too long.

What pushed me into action was last Monday night. Homework was finished, and I was ready to bring her to swim practice- the place she loves more than anything. And she told me no.

She said she didn’t feel right. She said she wasn’t strong enough. So I let it go and kept her home. But THAT didn’t feel right to me.

Then there was the day that she was waiting in my classroom for the school day to start and she said, “There it is mom! Feel that pulsing?” As she put my hand on the side of her head I got queasy. We all have pulsing in our heads to some degree, but once you have dealt with a vascular malformation – or a few – the pulsing takes you to a new mind numbing level of anxiety.

And when the teacher gave her a shell and she held it to both ears, and said , “I can’t hear it the same in my left ear…” And then there is the ringing that comes and goes…

So tomorrow we head back to Manhattan to visit a neurologist. A little later than the pediatrician would have liked, but we are going. And with every deep fiber of my soul I hope with all my heart that he tells me my girl has the worst fall allergies in the world. And in a few weeks it will all be just perfect.

That’s the story that will get me through the night.