Changes – big small, and in between

All sorts of changes… and today on Easter, one of the most significant.

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My Mom said to me many times when I was a teen, that I would do more changing in my 20s than I ever would in my teens. She was absolutely right.

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I guess she didn’t want to overwhelm me, because she never mentioned the volume of changes to take place in your 30s.

You grow up sure.  You have strong opinions.  And slowly… they evolve.

I’d like to say the values I was taught as a youth are still at my core, but my expression of those values has changed over time.

And, while all that was taking place – I managed to meet the love of my life.

Sometime after we married we purchased a true “handyman special,” which we are still polishing up 13 years later.

Then there was this beautiful little girl – rocking our worlds from the very beginning.  NICU, colic unceasing, OT,PT, Speech, hospitalizations, chronic viruses, tests, doctors, surgeries – and eventually Cowden’s Syndrome.

She grew into a beautiful young lady – despite the odds stacked against her.  Her very existence changed my long standing beliefs on modern medicine, and strengthened my faith in God every step of the way.

My family unit is so strong.  We are incredibly blessed to hold each other’s hands through the twists and turns and changes life has in store.

Today was a big one.

On this, Easter Sunday, the Celebration of the Resurrection of our Lord, my family stood in front of the Moravian church and professed our intention to become members of their community.

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My history, my heritage, my core, was developed as a Lutheran.  My heart is now Moravian.

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And their motto, “In essentials unity, In non-essentials liberty, In all things LOVE,” speaks to my soul.

We make decisions every day – guided by the power of the Holy Spirit, with faith that we are moving in the direction intended for us.

The fact we now attend worship as a family of THREE, leads me to be sure we are on the right path.

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My 30s have sure been a trip.  I have only a few more months left and I wonder what else is in store.  But heck, then there are the 40s to look forward to.  One day my mom will get a few minutes to sit still, and I’ll  grab a bottle of wine and ask her all about them.

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The church bulletin this morning had these words from Henry David Thoreau

thoreau 1Poignant.  Especially as I sat, in my “new” church, watching my daughter participate actively in a “Family Friendly” service.  They do those about every 6 weeks, in cycles, and I really enjoy them.  This one, this week, focused on growing up.

So, as Meghan stood singing, in a small, multi age group, I thought about the backdrop behind her.   Initially it still felt “wrong” to me.  I somehow expected her to be in front of the church I grew up in; with the same smile, and the same voice.  I imagined the picture behind the altar that became ingrained in my subconscious as a youth, and the striking stained glass windows.  I was looking for the familiarity of my childhood, even as I myself, and with my family, am still, at almost 40, “growing up.”

Things did not work out.  After 38 years that was initially so hard to swallow.  I was angry.  I was sad.  I was generally heartbroken.  But maybe it was time.  Time for me to “grow.”

For years I prayed for a place where my family could worship together.  We have spent 6 months now, almost every week, as a family of three in the pew.  The motto of the Moravian Church, “In essentials unity, in non-essentials liberty, in all things love,” speaks to my soul.

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I looked at the cross, and the Moravian Star, and I smiled.  The backdrop has changed, but not the meaning.  “It’s not what you look at that matters, it’s what you see.”  She was standing in a different place, but there was the same love, and acceptance I have come to equate with my faith.

When I got home I couldn’t shake the images from “Dead Poets Society.”  Quotes from my all-time favorite movie from 1989, with my all time favorite actor, Robin Williams flooded my head.

Thoreau, along with other famous poets wisdom peppered this movie with all the perspective I needed as I high school student.  And, now as I “grow up,” decades later, the meaning of the words changes a bit, but the movie “grows up” with me.

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And the reality that…

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The scene that spoke to the teacher and human in me, as Robin Williams hopped onto the desk…

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The reminders that we are to always look at things from a different perspective.

These are the words that shaped my youth.  These are the words that give me strength – decades later.  I love words, especially straightforward ones that speak to my soul.

In 1989 I thought life was complicated.  I had no idea that just shy of 25 years later I would be facing a rare genetic disease like Cowden’s Syndrome, with all its risks, and perils.  I could not imagine in my worst nightmares that my beautiful girl would be facing it too. And yet, these words, that became part of me – help give me the strength to endure.

My faith is strong.  My understanding of others, and the need to always look at things from a different perspective is a large part of how I define myself.

Growing up.  Changing.  Doesn’t mean ending, but rather new beginnings.

It may be a while before Meghan is old enough – or even interested in my favorite movie, but I will teach her – one step at a time.

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Every day – we work in this house on new beginnings.  We work on finding our voice, and moving forward.

We try to live a little, learn a little, and to keep God involved in it all.

We make a few denim ribbons, we raise awareness, and we keep the reality that we are fortunate.

All this from a “Family Friendly” Church service centered on ‘growing up.’

I consider myself successful as a Mother, if my girl grows up – Cowden’s or not – with these ideas helping shape who she becomes.

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What’s in a name?

It has definitely been a week, (ok – month…year) for reflection.

I started this blog in May of this year, after some encouragement from another Cowden’s sufferer.  Once I realize how to do it, I was prompted to name the blog.  I didn’t really give it much thought.  I went with the first thing that popped into my head.  And so, “beatingcowdens” was born.

The name seemed appropriate at the time, and I guess it still is.  But because situations, and people are ever changing, I don’t think the name means the same thing to me as it did 7 months ago.  Back then I had already had my double mastectomy, and I think I still was under the notion that if we got out in front of enough things we truly could “beat” Cowden’s Syndrome, the same way you “beat” a football team.

Well, I have come to realize to “beat” it would be to “defeat” it, and since I lack the power to change my genetic makeup, that simply can’t be.  So now, I view it as a process.  I spend each day, “beating” Cowden’s.  Every time I get up.  Every time I go to the doctor.  Every time I fight to get better, and recover.  Every time I explain to my daughter that it is all about HOPE and determination.  This is all part of the process we call “beating” Cowden’s.

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So really, what is in a name?

I guess it’s all about perspective – but then again, isn’t everything?

I had plenty of time to think about the whole “name” question today, as Felix, and Meghan and I took a trip to Bethlehem, Pennsylvania.  We accompanied the Moravian Churches on a bus trip to tour Bethlehem, and to take in the Christmas Vespers at Central Moravian Church.

bethlehem 5After a few hours in the bus, we got to tour the town.  We walked up and down Main Street, enjoying the little shops, and a nice dinner.  It was a welcome switch from the normal craziness of doctors, and illnesses, and therapy.  It was better than filling out paperwork related to the car accident.  It was, even through the chilly mist, a nice family day.

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Although I must admit, as we gathered into the church for the service I still felt a bit odd.  For so many years, and until so recently, I sharply defined myself as a Lutheran.  Now, I was looking up at a Moravian star, marveling at the wonders God can work, and the sometimes unusual ways our prayers can be answered.

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Personal issues with the Pastor at my home church left me unsettled and in many ways devastated earlier this year.  So, I turned to God and asked for guidance as I looked for a new place to bring my family to worship.  It was a long process, with lots of prayers, but some time in late August, I drove up Victory Blvd.  I made a left and parked.  I went into Castleton Hill Moravian Church on what I thought was a whim.  I later thanked God for sending me the message I had been asking for.  I brought my family the following week, and we have been attending faithfully as a family ever since.

So as I sat tonight in the Moravian Christmas Vespers service, I asked myself, “What’s in a name?”

I know a good deal of Lutheran theology, and I am learning the history of the Moravian church.  There are countless similarities, and a few differences – all of which I like.  Knowing that no place or person is perfect, and everyone has their shortcomings, I like the welcome feeling I get at each worship service.

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So as we settled into the top row of the balcony of Central Moravian Church, I stopped and prayed.  I asked God for peace from the constant turmoil that seems to surround our lives.  And, as I sat there with my husband and my daughter a deep peace settled on my soul.  Here in this almost 300 year old building, I found peace and comfort in the fact that my family was now enjoying church with me.

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What’s in a name?  Lutheran, Moravian…. I don’t think God cares.  He looks for a heart that is right and focused.

I couldn’t get through a day, especially not sharing this diagnosis with my daughter, without the firm belief that we are being watched over.

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