Motherhood

Published on May 11, 2014 by beatingcowdens4 Comments

MOTHERHOOD

I’ve only been a mother for less than 11 years, but I have been shaped and molded by some of the best around.

At 40+ years old, I can still boast THREE Grandmas that have all been a huge factor in my life.

I have my Mom – my hero.

And, I am friends with some of the best Moms in the business.

Not to mention – I parent a pretty darn smart 10-year-old – who has shared many life lessons with me.

So in honor of Mother’s Day – a most unusual one for me – I thought I’d try to reflect on some things I’ve been taught, and some things I’ve learned all by myself.

1. Motherhood is messy. Despite the best laid plans, no matter how your child, or children have been brought into this world it is a messy job. Things don’t go according to plan. Ever. So stop planning and stick your fingers in the mess of it all. Heck – jump right in and play. Your kids will remember your smile more than your polished table, organized closet or streak free windows. (I’m still working on that one!)

2. Motherhood is exhausting. Just when you think you have it – something will throw you into a new stratosphere. You will be tired for the rest of your natural life. Eat as well as you can. Take care of yourself. Try to give up caffeine. Splurge on under eye concealer. Then get in the car and head to swim practice, doctor’s appointments, shopping, therapy. While you are in the car – TALK. Children in the car are a captive audience. You can have some of your most important conversations there. Plus – it’s illegal to text and drive.

3. Motherhood is different for everyone. Comparisons are just not a good idea. As a matter of fact – make a habit of NOT comparing. There is no need to justify having one child, or claim you’re more exhausted with three. Each one, however the child became yours is a gift to be cherished. They are not potato chips, and having one doesn’t make it “easy” any more than having 3 or 4 makes it “hard.” Avoid telling anyone how much tougher it is to have a boy, or a girl. Avoid generalizing and making excuses. Just love your child.

4. Motherhood involves paying attention. Stop texting. Put down your cell phone. LISTEN to them. TALK to them. You may be very impressed by what they have to say if you get to know them.

5. Children are unique. Let them learn early to embrace their individuality. Create an atmosphere of unconditional love. Build their confidence, and keep them grounded enough not to become arrogant. Develop gracious losers, and equally gracious winners.

6. Motherhood is like being on stage. All day. All the time. And they watch EVERY thing you do. If you wonder how they learned that habit – good or bad – look at yourself. They want to be just like you. And chances are good they will. BE someone you want them to be.

7. Motherhood involves worry in a way you’ve never ever thought of before. That little heart beating outside of your body – no matter how old they become – will always and forever be more important than your own. You will worry about sniffles, and scraped knees, and heartache, and doctor’s appointments, and surgery, and pain, and healing. You will worry about doing too much, and doing too little.

8. No matter what you do, and how hard you try, you’ll never have it quite right. So always do the best you can with what you have where you are. That way you can rest your head peacefully every night.

9. Teach compassion. They won’t learn it unless you do. Teach them that “everyone has something.” No matter where you go or what you do or who you meet each day – EVERYONE is struggling with something. Whether it’s physical, mental, emotional, financial, greet every person with the knowledge they are bearing a burden. Try to frame all of your interactions with everyone around that knowledge.

10. Motherhood involves NEVER GIVING UP! Tenacity like you never imagined is necessary to do it well. When they are down and out and done, look at them and reassure them. Hold them. Support them. Forgive them. Love them with all your heart. The returns you get on the best investment of your life are immeasurable.

So as we sit tonight in the hospital, waiting, wondering, and worrying – we are still thankful. We have so many blessings in our lives.

Take a look at some of the women who helped make me who I am today – and enjoy what’s left of your Mother’s Day.

GGMa - a gift we got later in life. — GGMa – a gift we got later in life.

For those "like a mom" to us! — For those “like a mom” to us!

For those whose children are our Guardian Angels.

For the one who teaches me every day how to be a better human.

And we still squeeze in some time for fun!

HAPPY MOTHER”S DAY TO ALL!!

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.

Happy Birthday in Heaven. Give Angel Meghan a kiss for me.

Semper Fi Daddy. Always faithful. Until we meet again.

All my love,

Lori

Identity Crisis

Published on April 16, 2014April 16, 2014 by beatingcowdens5 Comments

Sorry it’s been so long. I am working through an identity crisis.

At first I thought it was a mid- life crisis, but upon closer review, it is definitely an identity crisis.

Sometime about a month ago someone thought it a good idea to get all involved in my bank account without my permission. So, countless hours and a police report later – that is ALMOST resolved.

Then, last week we went to file my taxes. Apparently someone already did that. In JANUARY!

More hours on the phone. More papers. Just what I was hoping for -really.

The whole thing seems almost too hard to believe, almost. It’s not the first time either.

And, I am pretty vigilant.

I mean I do blog – obviously. And I am not super careful about personal information here. But, with financial stuff I am guarded. I online bill pay only through my bank – which incidentally changed this week. I don’t answer phone solicitations, or fall for those Emails that try to trap you into believing they are real by urgently asking for personal information.

I don’t use my debit card for anything. I keep one credit card and monitor its online activity every 48 hours.

By all accounts I am on my game. But, apparently someone else is there too.

And I can’t figure out why, although I have a host of suspicions. Since we are married this is the 5th incident I can count where one of our identities has been compromised in some way. We fill out lots of papers, but we do so because we have to in whatever situation requires it.

What I want to know really is, does someone truly WANT to be ME?

I mean full on Cowden’s Syndrome, breast cancer, hysterectomy, thyroid removal, spleen tumors, kidney cysts, a doctor every 30 seconds, no break, ever… with a kid just passed surgery number 11 in 10 years, and who does all that and then some?

I’m not trying to say my life is THAT bad. I can count dozens of others whose predicaments are worse – but it doesn’t let up. Not for a minute. Ever.

It’s like that hamster in the wheel thing. Not for the faint of heart.

I wonder if my identity stealer(s) – cause they can’t know if it’s the same person- would like to hang out with me for a week or two. Maybe during a “fake” Spring Break?

That’s what my daughter has come to call it, after between us we have already covered 7 doctor’s appointments, with more lab tests pending.

Because I could ask them to spend some time on the phone with the credit reporting agencies, requesting 7 year freeze on all credit.

Or maybe they would like to copy the police reports, and mail them out.

Or perhaps they’s like to file the medical bills. And then call the get the errors corrected. And then call again when the bills go to collections for no reason.

Maybe they would like to drive. Through Manhattan. The place I swore many years ago I would never drive. All day. And pay repeatedly to park the car.

Because this week I could have used some back up. A 1 o’clock appointment Monday for me – genetics. A story for another day. And then yesterday to Long Island for one of the few doctors who listens to us. And today there was a 9AM at NYU for Mom, and a 10 and 11:15 (which became a 12:45) for Meghan at Sloan. Sometime as I was driving between NYU and Sloan I thought a lot about how this is not my “real life,” navigating between taxis with my heart in my throat. I thought about my identity thief (thieves?) and how maybe they had some skills I could use too – like driving through chaos.

And as we navigated our way back towards home to make a local appointment with the ENT to address the throat clearing, I could feel the tension on my shoulders and up and down my neck. We made the appointment, in time to hear his ideas, and hop back in the car.

Onward to a quick Gluten-Free pizza – no cheese, and off to CYO practice.

Then, granola in the car and off to the other practice. Where I sit. Now. Waiting.

Prior to my nutritional cleansing I would say I was exhausted. Now, I am just tired. Tired, and confused. But I have strength and stamina that I never possessed before.

WON'T be without my Ionix! — WON’T be without my Ionix!

Where exactly is my real life?

Is it on the cell phone asking the PA why the thyroid levels aren’t making a move to improve? I hope not. Because I don’t like the numbers and they don’t like my questions. Something will have to give.

Is it making the phone calls, filing reports, protecting the identity, keeping the house in some semblance of order, grocery shopping till all hours and at all costs?

Probably not.

The good thing about an identity crisis is it forces you to focus. It forces you to stop and think about who you are, and what matters to you. It forces you to decide to be deliberate in your thoughts, words and actions.

Initially I spent a good deal of time very angry about the identity thing. It took quite some time to start shaking it off. I am much better now- although not thrilled, I’ve come far.

See my ten year old recently in an interview about Cowden’s Syndrome said to the reporter, “You have a choice, you can be angry or you can DO something.”

Wise words from my preteen.

I am angry. But it won’t control who I am.

Identity theft sucks. It’s mean and it’s wrong, and it’s a time-consuming pain.

Cowden’s Syndrome is flat out horrendous. The follow up appointments are enough to drive you mad. If you let them.

Life seems to be tossing boulders.

Maybe my identity is “boulder catcher,” so I can put them gently down.

Or “magician” so I can turn them into something more gentle and flowery.

I know who I am.

And I can not, and will not be defined by the obstacles in my path.

I will not remain a ‘Victim” of identity theft – or anything.

I have “Cowden’s Syndrome” but I will not let it have me.

I am a mom.

I am a wife.

I am a sister.

I am a daughter, and a granddaughter, and an aunt, and a niece, and a cousin.

I am a friend.

I am a teacher.

I am a student of life.

I am a Christian.

I love.

I laugh.

I cry.

I hurt.

I heal.

I try my best.

I try again.

I forgive.

I am forgiven.

Identity Crisis – Over…

I think!

What if every day was a snow day?

Published on February 3, 2014 by beatingcowdensLeave a comment

Now before you jump through the page – hear me out.

The kid in you may be cheering. “SNOW! FUN! PLAY! ”

And the grown up in you may be growling. “TIRED OF SHOVELING AND GETTING STUCK AND BEING COLD.”

But actually, neither is exactly what I meant.

I got a message around noon that my daughter was hurting. The pain has been bad again. The weather doesn’t help. I fought through a wicked virus last week, and there is always the possibility of it eating at her. Her nerves are shot. The thyroid consult is Thursday. Consciously or not – she is worried. I’d be shocked if she wasn’t. I am too.

And between the weather, and the stress, there is the pain. It started a few weeks ago in the shoulder. It found its way to the ankle. Physical therapy in between. Swim practice ends up being haphazard and inconsistent. My heart breaks. I am distracted. Most of the time.

But this afternoon, when we left school together, and there were 8 inches of snow on the ground where it hadn’t been a few hours earlier – no one we were about to meet would have had any real idea of what I wrote in the last 2 paragraphs.

After settling Meghan into the warming car I set about clearing it off. Its a decent car, but a sedan,not an SUV, and while it can handle 2 or 3 inches, it is NOT designed to drive in 8 inches of anything. I ended up on my bottom twice as I finally got the windows and roof clear enough to be safe and legal.

Then, I decided to pull out. Well I went through all the motions anyway. There was lots of spinning and not much moving.

Then there were people all around my car. Some I knew, others I don’t think I ever met. And for a moment getting my car out of the spot was the most important thing on their agenda. They guided me as I behaved like a ditsy distracted woman. They had no idea how full my head was, and they passed no judgement. They were patient. I got free.

I kept driving, ready to make the first right when a woman waved me away. Someone was stuck.

I proceeded straight slowly, and when I tried to move slightly to the left to be sure I cleared someone in the road, I quickly ended up on the curb.

Fortunately no cars were in the way. But I was not moving.

And then… there were people. New people. Surrounding my car. Strategizing. Thoughts of Thursdays appointment still waffling around in my head, I desperately tried to focus. They worked at it. I did as they said. And in a few moments, I was free again.

I kept to the main roads for as much of the rest of the trip as I could manage. And I was doing well until I had to stop to let a car pass at the service road. Stuck again. This time I had the wherewithal to free the car on my own. And as I turned down my block, there was a sense of relief.

So I pulled up alongside our other car to quickly shovel out the spot in front of our house. Then I got in the car to back it up. Spinning wheels. Sliding.

Then there was a neighbor. Then another. People I have lived near for 13 years, but I am embarrassed to say I formally met for the first time today.

This time the predicament was a bit more dicey. My new car was literally inches from the old one. A slide in the wrong direction was going to cost me the front corner panel of one, OR BOTH, of my cars.

Hesitant I called my parents house. I knew my Dad would make it down and help me make sense of it. I frantically shoveled until I could see the blacktop of the street, looking over my shoulder and holding my breath as a few cars sporadically made their way down the street. Our other neighbor, a former bus driver, came over and strategized a bit. Before I knew it the two of them were moving my Saturn out of the way. As my stepdad’s familiar smile greeted my from the window of his truck – my neighbors had safely parked both of my cars – without them ever touching!

Relieved. Grateful. Exhausted. I gleefully accepted my Dad’s news that he’d be using the snow blower on the back of our property and I busily got to work on the front. Street to street property is nice… most of the time.

Some time close to five – a few minutes before my husband got home, I walked my sore back into the house to greet the face of my wiped out “I’ve totally had it.” kid.

Close to two hours after I had left my job, I had to stop for a minute and reflect. The chaos of my mind was still swirling about my head.

I chatted with “The Captain” for about 15 minutes in awe of exactly how many angels had crossed my path today. By my count at least 15 people had in some way “paid it forward” to me and my girl.

And I work less than a mile from my house.

So what if every day was a snow day? Well we may have lots more chances to find out. But, more importantly, what if we TREATED each other, EVERY day, as if it was a snow day. What a wonderful world it would be.

Getting out of my own way…

Published on January 23, 2014January 23, 2014 by beatingcowdens1 Comment

I am actively, consciously, deliberately, trying to get out of my own way.

I have hopes, goals, dreams, aspirations. I love my daughter, my husband and God and my family and friends.

I want to be stellar mom, an outstanding wife, and a good friend.

I want to be a Christian woman who leads by example.

I want to shout from the mountaintops about the organic superfood changing lives in my house, and giving us energy and clarity of mind we never thought possible.

I want to teach people about health and wealth and how they can go hand in hand.

But I am stuck.

Right in the middle of my own way.

We had Meghan to the neurologist today. We left Staten Island at 1:45 and traveled the approximately 17 miles to the appointment in Manhattan. It took an hour and a half. I just about worked myself into a migraine on the way.

But, fortunately, the torturous migraines of the fall are a memory. Controlled by a medication I would rather her not take. Today we got a dose increase, and something to help her sleep. It should be noted the ONLY side effect the neurologist would even discuss from the medication was drowsiness. HA! Not here. There’s my Meg… doing it her own way.

This was an easy appointment. We were home by 5:30 although wiped out by the journey – all of us. The follow-up is in a few months, the new script is in hand.

They are asleep.

I am sitting at the computer. Thinking. Researching. Typing. Organizing. Planning. Attacking everything. Accomplishing – not so much.

Today I called to reschedule the thyroid surgical consultation. Suddenly 5 weeks seems like a really long time. The tickle in the throat is troublesome. It turns into coughing when she gets nervous, and is only pacified into a tickle by the boxes of cough drops on my counter. I try to ignore the reality that we both know exists. I try to tell her it’s no big deal, and to casually ask her to show me where it bothers her.

“It’s not sore till I cough. It just feels weird – right here.”

And there on the right side of the thyroid is what has begun to feel like a small stone. I try not to let my imagination get the best of me as I picture it pushing on her windpipe.

“It’s fine,” I tell her. “We’ll just get the doctor to take a quick look.”

She’s not dumb. Not by any means. And that is a good deal of the problem. Gone are the days when I could lie through my teeth and protect her from the evils of Cowden’s Syndrome – lurking behind each corner, hiding under the bed, and in the closet. Now the monster is real. And it gives real life nightmares.

So in 2 weeks, on February 6th we will head to Sloan Kettering to meet the pediatric surgeon. No one can be sure what he will say. And I am not sure there is a statement he will make that will soothe me or make me happy.

And the waiting game continues. One appointment down. Two weeks till the next. Then on the 11th I have 3 and she has one. I still haven’t figured if its better to consolidate or spread them out. They just keep coming. One after another…

“Beatingcowdens” will suck out your energy if you let it.

But I won’t. That’s why I have gotten so involved in this superfood, and this fabulous company called Isagenix. Recently they named their 100th millionaire. A school guidance counselor from NJ with no network marketing experience. We three start every day with our shakes. We use the snacks and the meal bars, and the tea, and tonight they both took the melatonin spray to sleep. We are feeling better and better. So in the time I have at night, I listen to podcasts, I learn all I can. And I try to share with my family and friends that I am finally not that sickly little girl they knew. I try to share with them the health and wellness opportunities, and the vision for financial freedom. I am here. I am ready. If they will listen.

And its a good thing I am a master at multitasking, because there are lesson plans to write – for a subject I love across a LOT of grades. Trying every moment to be the best I can be.

As I sort through the last boxes from Dad’s apartment. And I laugh, and I smile, and I cry. As I make binders of beautiful 8×10 prints I found everywhere. As I sort through the photos on CD and prepare hard drives for my brother and sister. And I chuckle at the bills that come in, and I make contact with the members of his platoon in Vietnam, and his old friends – one at a time. Unearthing buried treasure from a man I loved dearly. Not a saint, but who is? And so much wiser than any of us really gave him credit for.

And I make list after list of the things I need to do. In the house, in life, on the computer… Supplements to order, new pants for my growing girl, laundry, and a haircut, and all sorts of other random yet necessary things.

I think about my friends who I love. The ones I never call, or barely talk to. The ones who I text instead of calling or visiting. I think of how busy our lives are… and for what?

Rare Disease Day is coming. February 28th. Our school is celebrating. Meghan is thrilled. There will be Tshirt sales, and a movie night, and proceeds to the “Global Genes Project.” It gives purpose. Hope. A distraction.

Somewhere in the midst of all this I have to stop and wonder. How do people do it?

Our lives have their own brand of busy – a medical type – which may be different than that of my friends, but it bears similarities. Over run. Overworked. Exhausted. Worried.

How do they get out of their own way? How do they manage to keep the balance of friendships and “play dates” for adults and kids? How do they get the laundry and the grocery shopping done, and still find time to play?

I think I am a pretty organized Mom. But yet – I need to use my time better. I won’t part with my writing. That’s therapy for me.

I’ve minimized the clutter in my house (just don’t look in the closets.) Now its time to minimize the clutter in my head.

Cowden’s Syndrome Awareness

This card was created out of her need to "teach" others about Cowden's Syndrome. — This card was created out of her need to “teach” others about Cowden’s Syndrome.

Rare Disease Day

Doctors, surgery?

Isagenix – health and wealth

Reconnecting with old friends

Making the time to exercise… cause I like it.

FOCUS

Now if you’ll excuse me… I have to find my way out of this maze…

I’ve got work to do!

“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

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!

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.