Unsung Hero

There is a hero in this war on Cowden’s Syndrome, this draining task of “beatingcowdens” that we undertake each day.  He doesn’t get much attention, and he prefers it that way.  Yet, I shudder to think where we would be in this war without our strongest soldier.

He never could have known almost 16 years ago what he was getting himself into.  Yet, somehow every day I feel the strength and power of his love.

Lori & Felix Wedding

We stood in front of God, and our family and friends on that chilly April day in 2000, and he promised to love me, “for better or for worse, in sickness and in health…”  And he surely has been true to his word.

I am not to sit here and say, “life is perfect,” or “we never disagree.”  Because I would be lying, and frankly that would be boring.

But, we work together.  We swallow pride when it’s necessary.  We say I’m sorry.  We forgive.

never alone

And, what I can say, is there is not a chance Meghan and I could spend our days “beatingcowdens” without him.

Most often he is not physically with us.  He works later than I do.  I pick up the afternoon appointments, local or in NYC.  I drive to swim practice.  I wait there and drive home.  I am gone hours and hours every day.

We communicate via text a lot.  I type a paragraph, he answers in a word or two.

Yet there is this sense of companionship we share from afar.  While he can not be with us at all the appointments, or the practices, or the general running around the days take us on, he is home, with us in mind.

I can not tell you how often we walk into a house full of the smell of a freshly cooked meal.  It’s not unusual for me to find a bed full of clean and folded laundry.  The dogs are cared for.  The candles burn all winter when the house is closed and stale.  The floor is clean.  Little is left out and around because he knows my compulsions and respects them enough to help me when I’m not home enough to help myself.

love

None of these tasks are trite.  They are what provides me with the momentary glimpses of sanity I so desperately need.

He is patient when we talk about fundraising.  When the whole month of January, and part of February will be consumed with “Jeans for Rare Genes 2” because Meghan wanted to DO something.  He works, behind the scenes, ever-so-quietly to spread the word, raise awareness and get things started.

He backs up technology and sits through software updates.

He updates, paints, and fixes just about everything.  And he really HATES painting.

He is a father above and beyond all things.  He loves our girl so completely she still holds his heart in her hands.  He is her way to unwind from her tightly wound Mom.  He is her chef.  He knows how to tease her until she laughs, and how to hold her most precious needs close to his heart.

And when the night rolls around, and the weight of the day presses heavy on my heart, he has the right balance of knowing when to hug me, and when to make me laugh.  My worries transcend even Cowden’s Syndrome, and the list of prayers grows deeper every day for those we love who fight more than their share of battles.  He knows just what I need.  All the time.

Cowden’s Syndrome permeates every day of our lives.  It’s reality.  It is 5 surgeries for Meghan in a little over a year.  It is 70 minutes on the ultrasound table for me this weekend, hoping, praying that I had the most thorough tech ever, and she didn’t actually FIND anything.  It is next steps, and strategies, and switching doctors, and making decisions, tough decisions.

The saying goes that if we all tossed our problems into a pile, we’d take our own right back.  I would… if and only if I could continue to run through life with my husband and my daughter by my side.

Here’s to the unsung heroes in all of our lives… for the STRENGTH and COURAGE they provide.  Give them a call, or a text, or a hug.

Love-Gives-Strength-and-Courage

Wrong list…corrected and redirected!

It wasn’t too long ago in conversation with my husband that we started to talk about all the things that have gone on in our lives in the last 2+ years.

The life changing diagnoses of Meghan and I and the correlating surgeries and appointments. just about took control there for a while.

And Felix studied for and ultimately obtained his electrical license through the drama, and extensive, ridiculous hiccups in the process.

It all just blurred in and we never properly celebrated that accomplishment.

Meg changed schools.  Well, twice now.

We changed churches.

And the car accident, and the back trauma.

The rotted bay window, and the pool with the hole in the liner.

The loss of my father after a brief, battle with pancreatic cancer that had life changing ripple effects everywhere.

I actually sat down to write a list at one point.  Maybe I felt, albeit temporarily, the need to justify the un-returned phone calls, the missed dates with friends, the chaos shoved behind closet doors, and the overarching feeling of disorder in my life.  I wanted a way to explain why I felt like I was existing, not living.  Why every weekend was faced with catching up, and why we were missing each other.  I wanted to explain to the world how I was nutritionally healthier and stronger than ever before, and excited about my new products, but I was/am struggling to get out of my own way.

But this year has served up some intense wake up calls and I am trying to give them my full attention.  Because if any reality resonates clear it is the one that there is no guarantee of tomorrow on this earth.

I am not trying to be morbid.  Quite the contrary actually.

It is that very realization that caused me to shred that list I was making.  It’s counterproductive to dwell.  We must press forward anyway.  So why stay stuck in the past?

lion-king-the-past

There is a point in your life where you have to stop.  And look around.  And focus on the blessings around you.  This paradigm shift, while far from perfected, is a work in progress.

We have taken steps to transform the house, even if that stands in the way of clearing off the credit card bills.  Because, we are not extravagant, and never will be, but living in a neat, clean, organized house, when done well, is easier to maintain, and therefore an investment in our time together

We have family.  And lots of it.  At 40 years old, I can boast 3 grandmothers and a grandfather.  I am becoming more aware each day of the depth of the value of those relationships.  In addition to those 4 great -grandparents, Meghan has 4 grandparents of her own.   I am beyond thrilled that Meghan, now 11, has had the opportunity to have created life long memories with all of them.

And sometimes it is within thoughts of those closest to us, that we remember what is the most important.

remember who you are

 

And if I really remember who I am, I have to speak of my grandparents, most especially today Mom’s parents.

Early in my life, when things were jostled around and life was uncertain, they were there.  We lived in the first floor of their 2 family for the most formative years.  They fed us breakfast and met us after school.  They took us to sporting events and school activities while Mom worked 2 jobs.  They were just always THERE.

And Pop was there to fix things, and Grandma to play cards and cook with.

There were summers in Ocean City, New Jersey – the best summers of my life.

There was a whirlwind trip to Disney, and so many more adventures.

veterans day pop and gigi

I remember them as a young child, watching them.  They never separated, even for a few minutes, without a kiss goodbye and an, “I love you.”  This practice, perhaps formed after a lengthy service in WWII, and a full career in the FDNY seemed rooted in their deep understanding that we need to appreciate each other here.  Now.

And when we moved into Mom and Ken’s house there was the summer Pop and Grandpa Al sided the house.

And in my own house the woodwork.  The beautiful labor of love that is each piece of trim, each windowsill, each doorframe.  In his 80s when I bought my house Pop trimmed each piece, and even helped Felix put in the front door.  He shared his craft with my husband, and did so with patience and ease.

So much of the last 40 years of my life revolve around Grandma and Pop.

photo 2 (1)

Never a task too difficult.  Never say no.  Always giving.  Always sharing.  Always loving.

When I think about my list that I had started to write, and then I think about them, I get a bit embarrassed.

Born in 1919 and 1920 they have seen more changes in their lifetime than any other generation.  They lived through the Great Depression, and participated in World War II.  They spent years apart, in touch by letter, only to marry a few weeks after Pop’s return in December 1945.

They built a family, my Mom and my Uncle, and the family branched out.

Pop worked in the Fire Department, and at Zion.  Grandma took care of everything else so that there was never a thing out of place.

During their life transformations like – no phone to cell phones, and no TV to HD flat screens, and so many more have happened and they persevere.  Pop Emails and surfs the internet, and even carries a cell phone – though it’s rarely on!

Times have changed and things slow down a bit.  But it’s still a huge highlight to stop in for a visit and chat.

And when he can, Felix still picks Pop’s brain for suggestions of things he’s about to try.

All my life I remember them doing.  For everyone.  All the time.  They are the ultimate lesson in “pay it forward.”  They are for me the ultimate reminder of those vows we make before God and family and friends on the day we marry.  Regardless of the wording used, the sentiment is the same.  They promised to love each other, in good times and bad, in times when there was a lot, and in times there wasn’t, in times of sickness and in health, and to stand by each other for as long as God gives them life together.

Love my Grandparents!
Love my Grandparents!
Christmas 2009
Christmas 2009
Grandma's 90th birthday on 2010
Grandma’s 90th birthday on 2010
At Pop's 90th birthday in 2009
At Pop’s 90th birthday in 2009

And even in the toughest hours, they make it look easy.

That is almost 69 years of marriage as God intended it.

There are so many things I share.  And there are some that just aren’t to be shared.  But make no mistake about this.

I’ve  learned how to be a better person, and a better Christian from my grandparents.  I learned how to be a better wife, from my grandparents.

This doesn’t detract in any way from the love of all the other influential adults in my life, including my own parents.  We learn different things from different people at every place in our lives.

But today, it’s about Grandma and Pop.  And how their selflessness and pure love never cease to amaze me.

I pray that though all adversity, my husband and I may set the same example for our daughter.

We are deeply, thoroughly, and completely blessed.

And when making lists its far best to make lists of your blessings than your struggles.

billy-graham-quote-our-days-are-numbered-one-of-the-primary-goals-in