Losing Count…

In school I count children.  Religiously.  Especially in September.  I count them in, and out.

I count pencils, to pacify my OCD.  12 to a table.

I count days until appointments, special occasions, and vacations.  I love numbers.

I have a tendency to remember addresses, phone numbers, anniversaries and dates.

So it’s a really big deal in my mind when I realize I am losing count of Meghan’s surgical procedures.

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I keep a list in my bag, that I update often.  I have a 16 gig flash drive with a history spanning 12 years in that same ziploc bag in my purse.  But, this year.  Well, this year has been a little more wild than usual.

And every time I say it, I find the old saying, “You ain’t seen nothing yet..” coming true.  But, every year I sit at an IEP meeting talking about discontinuing some services, and we always say, “When she goes a year with no surgery…”

Good thing I’m not holding my breath.

See I wrote, and I think I blogged, TWICE in the last week, that the hand surgery was Meghan’s 13th surgery.  Except it wasn’t.  It was the 14th.

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And maybe, when I lose count, it’s time to stop counting.  Because they are all starting to blur together.

2004- Epigastric hernia surgery

2007 –  Gall Bladder Removed

2008 Tonsils and adenoids removed

2008 Back mass lipoma

2009 Oral “fibrous polyp”

2009 Embolization (internal) AVM right knee

2010 Embolization (internal)  AVM right knee

2011 Direct Stick Embolization AVM right knee

2012 Direct Stick Embolization AVM right knee

2013 excision of mass from right palm

2014 complete thyroidectomy

Nov. 2014 emergency (direct stick) embolization AVM right knee

May 2015 Arthroscopic Surgery – Right knee

August 2015 Excision of vascular lesion from left palm

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But, just as I think I should stop counting.  Just as I think that this is “normal,” or that these procedures are somehow “minor,” I realize the ridiculous nature of that train of thought.

THIS IS NOT NORMAL.  THIS IS COWDEN’S SYNDROME.  And, BEATINGCOWDENS is what we do, but it is far from NORMAL!

This week, Meghan had a fever blister break out before her surgery.  Maybe nerves, maybe coincidence, maybe a medication screw up.  Whatever.  It reminded me again, that her body is taxed.  It is tired.  I have been hunting through past blood work, another plan in place to try to deal with chronically low IgG levels.

She spent the 48 hours after the “minor” hand surgery with high fever and frightening headaches.

We had to postpone the follow-up to the “real” 13th surgery Thursday morning because she could not get into the car.

No surgery is minor.  And we run the risk of confusing things we are used to with things that are not significant.  And that is a dangerous road.

It is so important to keep validated, as an adolescent or as an adult.  When we trivialize procedures, intentionally or not, we invalidate the patient.  Cowden’s Syndrome patients will undergo insane numbers of procedures, surgeries, hospitalizations and testing in their lives.  They all matter.  Because we matter.  And while we are forever grateful every time a surgery is smooth, benign, and uncomplicated, we are all a little more rattled than we were before.

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So LOSING COUNT, is not acceptable.  It somehow trivializes the nature of what goes on here.

We didn’t get to the beach this summer.  We did get to Disney.  Thank goodness.  Because pretty much everything else we did involved traffic, a co-pay and a parking garage.

We are blessed.  We are grateful.  We are in tune to the tragedies and horrors around us.  But, sometimes it gets lonely.

We miss barbeques and parties.  We cancel at the last-minute.  We rarely socialize.  It’s not because we don’t want to.  It’s because things change so quickly we can not keep up.  And then it looks like we don’t want to.  But, it’s just not true.

We are eternally grateful to the people who reach out.  Just for a minute. Because it matters.

If you’re reading this because you know someone with Cowden’s or a similar syndrome, my advice to you is reach out.  Text.  Call.  Email.  It’s not about money, or grand gestures.  It’s the 5 minutes you spend that will truly aid in the recovery process.

Because recovery is essential.  Number 15 is just around the corner.  And even though that’s a “regular” surgery, I bet not many of us have had our wisdom teeth extracted at the age of 12.

It’s physical.

It’s mental.

It’s emotional.

It does not stop.

BEATINGCOWDENS

 

 

Repetition

It never gets easier. No matter how sure I am about how fortunate we are, and no matter how much time I spend praying for those other mothers- the ones who are waiting through surgeries beyond the scope of my emotional grasp, it never gets easier.

  
Today she walked away alone. Into the operating room without her father or myself. She’s in good hands. I really like the surgeon, and I’m a tough sell. Even having repeated this waiting twelve times before- it never gets easier.

  
I tried on the way in, to make her feel like it was not such a big deal. That was dumb. It’s a big deal. No matter what. I was trying to make her feel better. It didn’t even make ME feel better.

  
Because the truth is, we know. We know it could be worse. We are grateful all the time. But that doesn’t mean it’s not important. It doesn’t mean it’s not a big deal, and it doesn’t mean it doesn’t matter. Even if it’s the third one in the last 12 months. Even if it’s the 13th surgery.

  
Maybe especially if it’s the 3rd one in the last 12 months….

So she’s BEATINGCOWDENS… While I wait… My hero.

Anticipation…

Funny how things creep into the mind.  Then there was this Heinz commercial from the 70s.

Anticipation – is making me wait…

Tomorrow we do it again.  Surgery 13.  Vascular malformation, left palm.

Hopefully it has kept a safe distance from the artery.

Hopefully it is smooth and easy.

But, we worry.  And it’s normal.  Just because you’re USED to something, doesn’t make it OK.

Anticipation…

We will rest, although I don’t expect much sleep.

Pause…

Sometimes we need to pause.  We pause only briefly, with hope of it lasting the whole week, and the reality that there will be interruptions along the way.  We pause, knowing that pain is ever-present, acknowledging with gratitude any breaks we are granted.  We pause knowing surgeries will always be forthcoming, but for right now they can wait.  We pause because with the pace of this life it is easy to miss the little things, the important things.  We pause to enjoy noise that is not NYC traffic, or the sound of a doctor’s office.  We pause to quiet the phone calls that need answering.  We pause so we are better prepared to battle this Cowden’s Syndrome.  We pause to remind ourselves of the beauty, within our family, and around us in the world.

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Breathtaking sunset

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Hanging around the hotel

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Friendly EPCOT duck

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Animal Kingdom Safari

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Animal Kingdom Safari

Last week we were in Walt Disney World, in Florida.  It is our favorite, actually the ONLY vacation spot we have ever had as a family.  We are fortunate to have celebrated Meghan’s birthday there for the last 8 years.  Disney is crowded, and hot, and pricey, and all the things the haters of the big Mouse want to say.  But, to the rest of us, there is a magic – a magic that endures regardless of age.  It’s hard to describe it, unless you feel it, but we do.  There is magic in avoiding doctors.  There is magic in eating safe food from restaurants, and having a bakery that even makes cookies, and cupcakes for your gluten, dairy, soy free girl.  So much of what we can’t do during the year is because of scheduling, and food.  It seems silly, but with those obstacles gone, it is a recipe for success.

Even the negativity that tries to get at us, ultimately fails – http://beatingcowdens.com/2015/08/09/theres-nothing-wrong-with-that-girl/

The trip was one of the smoothest we have ever had.  (Aside from me unpacking late the first night to realize I forgot the enzymes Meghan needs to eat!  Fortunately I ALWAYS have extra, and Mom got them overnighted so they arrived in the nick of time Saturday.  Tragedy averted.  Magical.)

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And I was only on the phone with one doctor.   Once.  The WHOLE WEEK!

I sometimes look at others vacation photos and think it would be nice, and perhaps a lot less costly, to change things up.  It might be interesting to see a few new things.  I would love to travel the country one day.  But, there will be time for all of that – later.  For now it’s about magic, and the treasure of having a preteen who still feels the magic in her heart.

Plus, we have some favorite rides…

She's more brave than me, but we DID it!

She’s more brave than me, but we DID it!

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TWICE!

TWICE!

Some Magical birthday wishes…

Her first

Her first “REAL” cake in YEARS!

https://www.erinmckennasbakery.com/orlando/

Time with

Time with “BOB” our favorite entertainer…

http://www.yehaabob.com/

And a birthday tradition…

A great view…

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Spectacular nighttime shows…

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Some Mom time...

Some Mom time…

Some Dad time...

Some Dad time…

And some time to just be 12, all by herself...

And some time to just be 12, all by herself…

There was plenty of time for me to walk.  And think about whatever I wanted, or nothing at all.  And we three started each day with our Isagenix… (fool me once – but never twice… for those of you who remember last year’s debacle!)

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There were days I felt like I could go on forever…

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And days to just be a little silly…

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And as is the case every year when we pull away from our “home” for the week, I find my heart beating a bit faster.  My mind begins to race back on track.  And I don’t really like it.

This has been a wild summer.  One too many doctor’s appointments, too few days of simple relaxation.  And even as I am ALWAYS so conscious it could be much worse, I feel a bit of longing to do it all again, or maybe tack a few weeks on the back-end…

But, time does as it pleases, and eight days from now my girl will be recovering from another hand surgery.

We’ve begun to prepare for fall activities, and we are looking to sure up a date for our PTEN Foundation/ Global Genes Project fundraiser in February.

BEATING COWDENS takes stamina.  Fortunately, we’ve got that.

And even more – we’ve got each other.  And if we pause for no other reason, it is so we NEVER FORGET…

Between us we've got unparalleled strength, and never-ending love.

Between us we’ve got unparalleled strength, and never-ending love.

“There’s nothing wrong with THAT girl…”

To the Young Couple on the Bus this Morning,

You should know that I heard you.  I heard what you said as you glared at my daughter.  I saw you shake your heads in disgust and say, “There’s nothing wrong with that girl, I saw her walking at the hotel last night.”  You seemed proud of yourselves, like you had “found us out.”  Maybe that’s why you weren’t so quiet.  Maybe you wanted the others to hear, and to look at us in disgust as well, while the bus took 4 extra minutes to load my daughter on the wheelchair ramp.

I thought about what you said on and off through the day, and that alone made me mad.  The fact that I even gave you a second thought was so much more than you deserved.

Then we caught the same bus home, and I really struggled to hold my tongue as you went at it again.

But, on the way home, I was less interested in you, and much more concerned for my daughter.  She wasn’t well, again.  And in some ways we are used to it, but it’s never any easier to see.  As magical as it is here, it doesn’t change our reality.

Our reality, the reality of daily struggle with an invisible illness, is with us all the time.  And even though my daughter CAN walk, she is not physically capable of the walking required to navigate the parks.  Maybe its the 6 knee surgeries.  Maybe its the after effects of the thyroidectomy.  Maybe its the low immune subclasses, or the severe GI issues.  She tires easily.  And today, because it’s day three, she is already worn out.  And even with the help of a wheelchair, she needed us to cancel our dinner reservation and get her back to the hotel to rest.

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So, yes.  At the advice of her doctors, and the agreement of her parents, because she NEEDS a break from her life, and EVERY protection to help her feel well, she uses a wheelchair through most of the day.  And every day before we leave the hotel room we say a prayer for all those who HAVE to be in a wheelchair all the time.  We take a moment to pray for their strength and health.

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You aren’t the only ones.  There are plenty of others who look at my beautiful girl, and think that this is some type of ploy.  Which would make us pretty sick people.  Because if you really want to feel queasy, push your child around in a wheelchair.  Go ahead.  Try it for a week.  We’d rather she walk.  She’d rather walk.  So sometimes we let her try.  With advil, and about 3/4 mile round trip.  There is ice for the knee, and a shoulder to rub.  The body behaves like one 40 years older.  But, she pushes.  To keep her independence.  To feel normal.

The next time you wait the extra 4 minutes for the bus to load, don’t judge.  Don’t figure you know the who, or what or why, about the person in that wheelchair.  Don’t pity them.  Don’t feel badly for them.  Just be respectful, and assume they fight a battle you know nothing about.

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If you want to know more about them, ask.  And if you don’t – just walk right on by.  And cherish your mobility.

You just never know.

Sincerely,

The Mom of that Child You Know Nothing About

And then THIS happened…

And in the middle of the summer that wasn’t, Meghan’s drama teacher was out doing her thing, inspiring my daughter to step out of her comfort zone and reach new heights.  I LOVE the drama teacher.  And I LOVE that my girl has no fear.

Summer play.  Broadway scenes.

She is SO NOT defined by Cowden’s Syndrome… Not today, not ever.

Kudos to my Mary Poppins, and the whole cast.  (Even on their crackly public school microphones!)

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I LOVE that she has an outlet that she enjoys so much.  I LOVE that she smiles on the stage.  I really LOVE everything about the peace it brings to her.

This passion, this will help her as she works at BEATINGCOWDENS!

Invisible Illness – Stuck in the Middle with You

I don’t actually fit the “stereotype” of a middle child, as I was a younger sibling to my sister, (three years older) for 15 years, before my little sister and brother came along a few months apart.

I got the live the life of a “younger” and then later got to have some fun times, and responsibility as an “older.”

It worked.

On the other hand, this journey with this “invisible illness” we call “Cowden’s Syndrome” isn’t quite as smooth.  It has to work, but right now it’s the “typical” middle child.  It’s having a tough time fitting in where it belongs.  Actually it is definitively trying to take over, but either getting ignored, or getting too much attention for all the wrong things.

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In February of 2014 there was the complete removal of her thyroid.

In May of 2014 there was a week in the hospital from complications from the medicine that was controlling the AVM.

In November of 2014, almost on schedule, the AVM bled and required emergency surgery.

In February 2015 I addressed another vein gone awry in my leg.

In May 2015 there was the arthroscopy for the AVM knee to quartarize some bleeding.

In August, on the 25th, there will be her second-hand surgery in two years to try to stay ahead of the vascular malformations now forming in her palms.  That was an unintended result of Monday’s visit to the hand surgeon.

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There are a list of appointments to make, and bills to settle, and I seem to be doing nothing more than surviving.

More blood tomorrow.  An Abdominal ultrasound Friday.

The summer is not for carefree adventures.  The summer is for doctors.  I hate that.  But, its true.

And as we met with the oral surgeon today who perused her multiple page medical history, his cavalier remark, “She looks good,” should have pleased me.  But, if I may be frank, it pissed me off.

Not because she doesn’t look good.  She’s stunning, and tall and polite and well-mannered, and has a beautiful smile.  But that is NOT the point.

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The point is he never mentioned anything about the medical history, and in our world, being validated matters.  Someone needs to say its unusual (read unfair) for an (almost) 12-year-old to be discussing the removal of her wisdom teeth.  And while this may have nothing to do with Cowden’s (although I’ve come to know EVERYTHING unusual has SOMETHING to do with Cowden’s,) it is still just grossly unfair.  More unfair is that this is ALREADY her second stint in the chair of an oral surgeon, as a mass was removed from her gums some 5 years ago.

We remain “stuck in the middle.”

Again, I have the “healthiest looking sick kid.”

My kid who still ices her knee, and needs to walk a lap or two during swim practice, but still makes practice.  That kid will spend a week in a wheelchair at Disney, as she is not to walk more than about 1/2 mile consecutively.  The child who still hasn’t gotten clearance from her last knee surgery.  Clearly, she doesn’t “look” sick, but the stares and judgment are inevitable.  And to some extent I get it.  Invisible illness is hard to understand.

It is during this week I feel most “stuck in the middle.”  I am so grateful the accessibility issues are limited.  I do not fit in with the parents of wheelchair bound children.  Although, it is a necessary tool to allow us a much-needed vacation.  But, what is not limited are the “invisible” elements of her condition.  The chronic surgeries, the doctor visits, the traffic, the blood work, the scans, the inability to just “go”; to the museum, the beach, the park, or anywhere because it hurts to walk too long, the isolation from friends who have no limitations, the poking, the anxiety – well, they never ever go away.

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We’ve learned not to talk about them much.  But, they are always there.  Hers and mine.

She learns to appreciate what she can do, and acknowledge what she can’t.  Begrudgingly.

My kid who holds it together through all things, and has grit and determination I marvel at, will act in her summer production at school.

She learns to use the anxiety as a tool.

She masters her emotions.  She is the boss of her body.  She amazes me.

And on September 18th when she gets her bottom two wisdom teeth removed, the course of action will be no different.

They will never know the powerhouse of a young lady that just left their chair.  Until she comes back for the other two a few months later.

“Stuck In The Middle With You”
(originally by Stealers Wheel)

…Yes, I’m stuck in the middle with you,
And I’m wondering what it is I should do
It’s so hard to keep this smile from my face,
Losing control, and I’m all over the place
Clowns to left of me, jokers to the right,
Here I am, stuck in the middle with you…

To the Middle School Girls Who Doubt My Daughter…

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July 20, 2015 To the Midle School Girls who doubt my daughter’s medical conditons: I want to start by telling you, I know it’s not your fault.  You are generally healthy.  You were raised by people who are generally healthy. … Continue reading

“She’s so unusual…” and Other Ironies

This is quite a garble of thoughts… good luck!

** This blog was written over 2 days.  The BLUE type was written today, Sunday July 19th, and the BLACK type is from Saturday, July 18th.**

I’ve been asked by people who read this blog, several lately, “How do you stay so UP, all the time?”  Sometimes I find that question to be the biggest irony.  I struggle often, and deeply.  The whole purpose of this blog is a candid description of our journey with this beast called “Cowden’s Syndrome.” Let none of you ever imagine for a minute that we are “UP” all the time, cause it’s just not true.

But, as difficult of a road as this is, I have tried always to remain acutely aware of the connections we have to others, and the never-ending reality that “everyone has something.”

everyone you meet

So often my writing is where I work it out.  I type.  I think.  I read and reread.  And, cheaper than a therapy session, I am able to tease away the negativity and find the focus I need.  And when I am unsure, and it just doesn’t sound right.  I wait.  Just like I advise people to think before they speak, “Is it true? Is it kind?  Is it necessary?”  I try to think before I publish.  So last night I sat wrestling with this.  And I never hit publish.

From “Corner of the Sky,” Pippin soundtrack

Everything has its season
Everything has its time
Show me a reason and I’ll soon show you a rhyme
Cats fit on the windowsill
Children fit in the snow
So why do I feel I don’t fit in anywhere I go?

So again we hear, “That’s really unusual.”  “I’ve never seen that before.”  “Typically…”  And I chuckle, in frustration and in the irony of it all.

This time it was at the dentist.  Meghan felt something in the back of her mouth.  An X-ray revealed an impacted wisdom tooth.  She’ll be 12 next month.  The consult with the oral surgeon is on the 29th, two days after she meets with the hand surgeon (again) to discuss the vascular lesion on her palm.  Her abdominal sonogram to screen for Cowden’s related issues is on July 31st.

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This week someone will call me with the name of a foot and ankle surgeon, suggested by the orthopedist who did her knee surgery based on her foot pain and size discrepancy.  Who really knows where that will lead?

I’ve got a bone density test set for Monday, to determine if 30 years of thyroid medication, and early menopause forced on by a hysterectomy at 38, has depleted my bone density.  My next phone call needs to be to the vascular surgeon.  He had some success with the right leg in February.  The left leg is in dire need now.  That is as soon as I can settle the errors on the anesthesia bill.

The number for the “Skin Cancer Screening Clinic” at NYU sits on my desk.  Meghan and I both need to be scheduled.

I just finished completing the papers for her medication for the 2015-2016 school year.  They are copied, one is filed, and one is set to be mailed Monday.

We’ve started to discuss, the two of us, dates for the 2016 “Jeans for Rare Genes” fundraiser.  We’ve got some neat ideas.  It passes the time.

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For the second year in a row, Meghan was nominated for the Global Genes Project “Teen Advocacy Award,”  and although she did not win, it is an incredible honor to be making a noticeable difference at such a young age.  One day we will take her to California for the Global Genes Advocacy Summit.  One day her vision of a denim ribbon necklace will come to fruition.  One day.  But not this year.  Because this year I am trying to schedule vascular surgery that weekend.  Because we have to prioritize.  Right?

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I have set some fitness goals this summer.  I am setting a 10,000 step a day minimum.  I am aiming for at least 5 miles a day.  My dog is in the cross-fire of this goal.  She is my walking partner.  Because she likes to walk – but maybe not quite that far- and she can’t really say no.

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I am always struck by the ironies in life.  I am stronger than I have been in years.  In many ways I am healthier.  I have found Isagenix, and I feel better.  Stronger.  More resilient. More able to cope with life’s obstacles.

Which is good.  Because life has a tendency to be really isolating.

I suppose we all feel that way sometimes.  And many of us feel that way most of the time.  But, sometimes that is little consolation.

I am grateful not to fit in with the Moms of really sick kids.  I don’t envy them at all.

But, I can’t find a spot with the Moms of mostly healthy kids either.  Unless I don’t talk much.

Cause talking about a “healthy sick kid” is confusing, and frankly more than most people can, or choose to process.

I want to spend time with people my own age.  I have lots and lots of people I like, but not too many friends to get together with.  Sometimes I wonder what it would be like to just get together.  And chat.  Maybe over lunch, or dinner, or drinks.  Or maybe have a barbecue, or even a night with other couples.  Where everyone socializes.  And no one is overly worried about anything.  But we end up declining the few invitation we get because something always seems to be in the way.

This life is isolating.  The constant doctor’s appointments, surgeries, food allergies, medical bills, prescription drug battles, mobility restrictions, have made us difficult to “hang out” with.  And I get it.  And it doesn’t make me mad.  Because it is what it needs to be right now.  And there are friends I talk to and text with.

Do not misinterpret this as a need or a desire for pity, or sympathy, because it couldn’t be farther from that.  What I write here is a simple representation of facts that are.  They just are.  And maybe one day they won’t be.  But, I have already learned not to wish life away, not even the uncomfortable parts.

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But on nights like tonight, when two decks on my block are lit up with social gatherings, I find that I long for summer days of freedom.  I crave careless, schedule free days.  I dream of getting up one morning, and hopping in the car with Meghan and just going somewhere far away from doctors and hospitals.

Just like the curly haired people who wonder about straight hair, I wonder. But, even as I wonder, in my heart I know this journey is taking us somewhere.  Somewhere with an end I can not see.  There are stops along the way to make us stronger, wiser, and more patient.  There are lessons on empathy and compassion to be learned.  There are experiences that will turn us into the people we were meant to be.  The road is long and winding.  Sometimes the climb is tough.  But, but the view, when you really stop and look, is amazing…

Rivers belong where they can ramble
Eagles belong where they can fly
I’ve got to be where my spirit can run free
Got to find my corner of the sky…

I ended last night feeling lonely, and lost.  The song from Pippin had been in my head all day, resurrected from memories of ages ago.  Yet, I couldn’t shake it.  Where do I go?

This morning Meghan was well.  She woke up well, and early enough to make a two-hour morning swim practice, which she completed.  I had time to walk a few miles near the pool.  The sun was beautiful, and the air wasn’t quite that warm yet.  There were birds singing happily, and flowers to appreciate.

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After swim we made it to church.  It had been a few weeks since we were able to get ourselves there.

And in the bulletin I was met with a quote,

“I know I cannot enter all you feel

nor bear with you the burden of your pain

I can but offer what my love does give – 

The strength of caring, the warmth of one who seeks to understand.

This I do in quiet ways – that on your lonely path you may not walk alone.” – Howard Thurman

There was a basket of rocks where we were instructed to take one to represent us.  The rocks were placed in a bowl, and water would surround those rocks symbolizing the love of Christ.  Stories were told, personal and biblical, about love and caring for the physically, and emotionally wounded.  

We were invited to choose other rocks, to represent people we loved, who had needs weighing heavy on our hearts.  As I chose mine my eyes were full of tears.  Not of sadness for those people, but of the promise that they are also enveloped in the love of God.  My hand was full, I must admit, and I took a few moments to say a prayer over each rock as I placed it in the water.  And then, tears of pride, as I saw my daughter had selected her own “rocks” to pray over.

The closing hymn (words and music by Marty Haugen, 1987) began like this;

“Healer of our every ill, light of each tomorrow, give us peace beyond our fear and hope beyond our sorrow… You who know our fears and sadness, grace us with your peace and gladness, spirit of all comfort fill our hearts…”

And the idea that we are here to “Bear one another’s burdens,” permeated my heart.

Bear-Ye

I am not “UP” by my doing at all.  I treat my body well.  I treat my mind well.  And I allow my soul to be cared for.

My peace comes from the knowledge, the belief, the conviction that we are guided by a loving God.  That all things are not mine to know, and that through His grace alone we have the strength to remain,

“BEATINGCOWDENS!”

Appreciating the Rainbow AND the Storm

Let’s be real.  Plain.  Honest.  Real.

Sometimes we all want to throw our hands up.  Sometimes we want to quit.  Sometimes we want to hide in the closet or under the table alone.  For a long time.  Because EVERYONE HAS SOMETHING….

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No one’s life is easy.  The trick for me is realizing that and moving on.

Yep, some days I throw a fit right here in my house.  Some days I am sad and overwhelmed.  Some days I even cry, like here (http://wp.me/p2qi4v-10g)

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But, the rule is about 15 minutes.  I am allowed to have a pity party for about 15 minutes.  (Sometimes that 15 minutes happens again, and again – but not usually.)  Because then, I have to put on my big girl panties and make it work.

e card big girl panties

We play a lot of games of perspective here.  We work on looking at things another way.  “Flipping it…”  so to speak, to try to get through.

The end of school is a crazy time for us.  It’s supposed to be a time to rest, and unwind.  But, really,  it’s just shifting gears. Most of our doctors keep us on a “Six month leash,” so we do our best to schedule one round the very beginning of July.  This way if anyone needs anything else there is time before school starts again.  The other cycle is distributed around February vacation and school holidays.  The only problem with this is it grossly limits the number of ACTUAL holidays there are in our lives.  There is a good deal of “Go, go, go…”

perspective

Despite our occasional “preteen issues”  my daughter is insanely easy to please.  She wants to swim.  She wants to act.  She wants to read.  She wants to watch tv.  She wants to socialize with children  preteens who are nice to be around.  She wants to eat good, safe food, (cooked by her father not me!)

What she’d prefer not to do is sit.  In the car.  On the BQE.  On the LIE.  In the waiting room.  In the exam room.  Over, and over and over.  Yet, still she handles it gracefully.  She packs her own bag with a variety of things to occupy her time, and some snacks too.  She really does not complain. (Except maybe if there’s a needle…)

What I try to do is spare her some appointments any chance I get.  So when mine come up I try to leave her behind, and that’s what I did yesterday and today.

See, between us, there will be 15 appointments in two weeks, ending this Thursday.

This morning I made my 3rd trip to Manhattan in the last 7 days, but yesterday and today I drove alone.  Meghan was tucked away at camp.  Happy as could be.

I sat in the car, alone.  The 20 or so miles never take less than an hour, so the luxury of satellite radio, and my green tea, (plus and e+Shot when I need it) are all mine to savor as we inch along.

Gratitude-Appreciate-The-Rainbow-The-Storm

I noticed today I was very calm.  This life, this Cowden’s Syndrome life, is overwhelming, monotonous, and sometimes very stressful.  But, it’s our life. Not glad by any means, but grateful that this load has been bearable thus far.

Some of our doctors could stand to be replaced, but many are stellar.

We are looked at so carefully all the time, that the chances of us missing something important have drastically decreased.

We have real life conversations, about real life problems, and we handle them with A LOT of humor.

We have a home that is full of love, and a witty, intelligent, young lady growing here.

We have two steady jobs.

We are able to vacation, and enjoy a few extras along the way.

gratitude-happiness-2

We have become adept at navigating the bumpy road as a unit, not just Meghan and I, but her Dad as well.  We are a team of three.

We have found nutritional products that keep us energized and strong as we brave the storms.

We are often dubbed the “healthiest looking sick people.”  A comment that always makes me smile.

Some people like to use the word “blessed.”  I have some trouble with that.  If you are the person amidst terrible tragedy, are you then to feel you are not “blessed?” I may have a few questions for God, but the God I believe in doesn’t work that way.

Problems

Grateful – feeling or showing an appreciation of kindness; thankful

Now I do believe that there is always room for gratitude.  There is ALWAYS something to be thankful for.  For us, there is OFTEN a LOT to be thankful for.

Gratitude is not about always being happy, and life always being perfect.

“Gratitude consists of being more aware of what you have, than what you don’t” – Unknown

Even as we journey daily BEATINGCOWDENS, I am striving for an “attitude of gratitude,”  for myself and my own sanity, but also for my daughter, who watches and learns from breath I take.

Autumn-Rainbow-Gratitude