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 – https://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!