The Story of the Girl and Her Mom

once upon a time

So, four years ago they diagnosed this girl with a rare genetic disorder called “Cowden’s Syndrome.”  Soon after they diagnosed her, they diagnosed her mom too.

And the mom and the girl read everything they could find, which really wasn’t very much.

And they asked a lot of questions.  Some from the doctors, but mostly from people on the internet who had this Rare Disease too.

They learned a lot.  They also learned there was a lot to learn.

They learned about cancer risks, and how very high they are.

They learned about screening tests.

They met lots of new doctors.  Some were super awesome, and others were super awful.

They fired the awful ones, and kept the awesome ones.

The doctors sent them for tests, and screenings, and blood draws, and all sorts of poking and prodding.

At the beginning it was pretty much all they had time for.

the girl who is always there

The girl had lots of surgeries, and lost her thyroid, and then they called her a “previvor” because they said she got it out just in time before it was cancer.

The mom, she had a bunch of surgeries too.  In one they found cancer.  But she was called a “survivor” because it was all gone.  (Thanks to the girl who got diagnosed first and saved her life.)

The girl and her mom ran from doctor to doctor.  They sat in traffic for forever.  They stayed in hospitals and had surgeries, and tests.  Everyone treated them kind of strange.  Like they were aliens or something.  Their condition was so rare that hardly any doctors even understood what they were supposed to do.

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Over time the girl and her mom got a better idea of what really mattered and what didn’t.  They started to be more assertive about doctors, and schedules and planning.  They started to say, “not right now,” sometimes, knowing that a few weeks wouldn’t matter, but a few months might.

The girl and her mom talked a lot about Cowden’s Syndrome.  They talked a lot about Rare Diseases.  Sometimes they were really angry.  Sometimes they were sad, and other times they were grateful.  They saw what some other people with Rare Diseases went through.

The girl and her mom had LOTS of long talks, real talks about tumors, and tests, and cancer, and life.

They worked on some things separately and some things together.  But they agreed to get busy living.

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That didn’t mean they could ignore the seemingly endless doctors appointments.  They all had to be done.  It meant they could schedule smarter.  It meant they would talk about what symptoms had to be addressed right now and which ones could wait.  It meant they had to get really good at communicating.

This isn’t always so easy since the girl is almost a teenager, but they are getting pretty good at it.

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The girl had 4 surgeries this year, some more major than others, but she spent lots of time recovering.  And she learned that she liked to be busy.  She likes to sleep too, but she likes to be busy.  With kids.  Often.  She also likes to be active.  A lot.

The girl and her mom still have this Cowden’s  Syndrome, and sometimes for reasons no one understands, they hurt a lot.  Sometimes the pain makes it hard for one of them to push on.  Sometimes the tired almost feels like they can’t go on.

But the girl and her mom, they push each other.  They push each other to press on because laying down and giving up is not an option.

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Their days are long.  The mom works full-time.  The girl goes to 7th grade and makes high honor roll.

Their afternoons are full of drama club, the girl’s love of theatre, and lots of swim practice.  The days are often 13 hours or more of constant motion.

The girl and her mom, they decided that they might have a Rare Disease, but it definitely wasn’t going to “have” them.

So they decided that whatever comes their way, they are going to be active, healthy, strong, fueled with nutritious food, and built of muscle.  This way if Cowden’s punches, they will punch back harder.

Sometimes the mom wonders if life would have been different without the girl.  The mom wonders if alone she would have been able to push on.

But she doesn’t have to wonder.  Because they have each other.  And, because this weekend they spent 3 days at a swim meet.  And the girl knocked major time off her events.

And, when they came home, the daddy, who is the glue that holds them together, had warm chicken, and rice and vegetables, the healthy fuel  – all ready.

And the mom and the girl were so grateful.  For each other.  For the desire to fight.  For the strength from good food, and faith, and the love of a dad who backs them up every step of the way.

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And as the mom drove the girl to youth group at their church, they talked, about the swimming.  And about the fundraiser they are planning. So that Rare Diseases scarier than theirs get some attention.  “For the Babies,” and so that there can be research for this Cowden’s Syndrome.  So that maybe it can get stopped in its tracks.

And as the mom walked home enjoying the fresh crisp air of Fall she was filled with gratitude.

For this story of BEATINGCOWDENS has only just begun.  And each chapter holds more promise than the next…

Recovery – Everything is Relative

recovery

 (Merriam – Webster)

Medical Definition of RECOVERY

:  the act of regaining or returning toward a normal or healthy state
Recovery.  Is it a place?  A state of being?  A state of mind?  Who knows?  But, we spend a lot of time here.  It’s really sort of a family affair, although without a doubt the one who takes the brunt of it is always Meghan.  Four times in the last 10.5 months, and most recently three times in the last 6 months,  there has been general anesthesia, and necessary recovery.  That is a record for her that I pray she never surpasses.  
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In November and May it was the knee – one emergency, one planned. In between it was the hand.  A pesky, tiny AVM, gotten before it got to be too big of a deal.  She JUST was cleared to take a break from the recovery PT on Thursday.  And on Friday it was the wisdom teeth.
We laughed a lot before the teeth came out.  We called her an overachiever and kept the mood light reminding her that years from now she would be able to boast being the first, when her friends inevitably would need theirs done too.  This surgery had a glimmer of “normal” attached to it – although distinctly unique in her age.
But, being unique isn’t always a place you want to be.  Especially at 12.  Sometimes you just want to blend in a little.
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It’s less than ideal to have a weak knee with a persistent AVM.  It’s no fun at all to grow AVMs – even tiny ones – in the palms of your hands.  (One in EACH hand to be fair.)  It doesn’t make for good conversation, when your experiences are operating rooms, and your excitement comes from which doctor hurts less when they put the needle in.  Which 12-year-old would really know how to respond?  It’s certainly not the place you want to be as the FIRST wisdom tooth survivor of all your friends, when none have seen their own swollen puffy cheeks, or have any idea the pain as the incisions begin to heal and the stitches work their way through.
And I knew the prcedure even surprised the surgeon.  When I went to her as she woke up, the medication plan had changed.  Initially she was to recover on Tylenol.  I was handed a script for a narcotic pain reliever and instructed to be sure she used it.  It’s never dull.  Or easy.
fly then walk
It’s no solace to her that I understand THAT surgery.  Because I had it AGES ago, and I don’t remember too much except pain.  And, I won’t be in school with her tomorrow to give her Tylenol, or reassuring glances, or soft food.
Recovery, when she was little included furry stuffed animals, and lots of rest time.  It included balloons, and all sorts of pomp and circumstance.
Recovery, now is more about the sporadic texts and occasional pop-overs while she tries to maintain her school work.
Recovery now includes the realization that it’s very definition of “returning toward a normal or healthy state,” could prove to be elusive, indefinitely.
We do a lot of talking.  We all know how fortunate we are.  We all understand how much worse all this could be.  We have depth of knowledge of those around us who suffer.  We think.  We pray.  We miss our friends.
grass is greener
Recovery, on this beautiful holiday weekend, involved trading walks in the fall air, for open windows.  It involved being nearby all night, because I was allowed.  Recovery means family time.  And maybe that’s one of the things that keeps us sane.
Perhaps “recovery” has become a routine venture.  And THAT in and of itself could lead to a whole lot of other conversations.
Tomorrow it’s back to business.  The plan is to swim by Thursday.  After all, there is a meet this weekend.
Our goals in this house far exceed recovery.  That’s way too repetitive.

We like a challenge.  We are BEATINGCOWDENS!

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“An Accumulation…”

I once read a story where a special needs mom described her daughter’s seemingly “over the top” fear of needles to a phlebotomist who had no frame of reference, compassion, or desire to understand. The phlebotomist had written the child off as poorly behaved, and the mom as one with no control. This mom said plainly to the phlebotomist, “It’s not you. It’s not even the needle any more, at least I don’t think so. You are AN ACCUMULATION of botched blood draws and rolled IV attempts. You are an ACCUMULATION of her being stripped of her control, and of all the pain that has come from those needles.”

That story stuck with me in the deepest way. And I have told doctors, nurses, and phlebotomists alike, whose egos are sometimes easily bruised by an incredibly anxious 12-year-old, not to take it personally. That is if course unless they get it wrong and add to the problem…

Tomorrow morning Meghan will head to the oral surgeon for general anesthesia and surgery 15.

The surgery itself this time is not that unusual.  The wisdom teeth are impacted and the bottom two will come out tomorrow.  Years of orthodontics are complete, not to be damaged by over-anxious wisdom teeth making an unwelcome early appearance.

I say it’s not unusual. Except that she’s 12.

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If you think about when you had your own out, my guess is you were somewhere between 17 and 21.  And, at the time you had them done you knew at least a few people your age who already did it.  And you were in turn “there” for your friends that followed.

Except once again she’s braving unchartered territory alone.

For those that have challenged her on calling this “surgery,”  I will remind you that is probably how you referred to yours.  At the oral SURGEON, under anesthesia.

There have been countless well-meaning adults, telling her about their wisdom teeth, and how it’s no big deal.

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And while their intentions are good, I bet there aren’t going to be too many people absent from her junior high this year to get their wisdom teeth pulled.

As “normal” as things are, they just aren’t.

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By the time her friends get theirs done they will not remember, and I’ll likely have to vouch for her story that hers came out at 12.

The oral surgeon’s office called to remind me she shouldn’t eat or drink after midnight.  They shouldn’t worry.  I stopped any use of NSAIDs, and fish oil, and unneccessary multivitamins a few days ago.

We’ve got this.

She just shouldn’t have to.

It’s a recurring theme.  But, we will endure.  Because we have no other option.

Defrosting the chicken for tomorrow’s soup.

We are BEATINGCOWDENS!

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The War Ain’t Over Yet…

Tonight wasn’t one of our better nights. And, as we drove home, and sorted through a few things, I offered Meghan this outlet.  I told her writing helps me sort out my thoughts and get refocused.  Here is Meghan, as our GUEST BLOGGER….

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Tonight I couldn’t finish practice. Yesterday I hurt my knee, my kneecap clicked back out at practice and I got shocking pain through my leg. A lot. So I pulled the rest of practice and iced my knee when we got home. I went again to practice today and hurt my knee so much that I couldn’t continue. I went home in tears feeling like I just failed. I gave in tonight. I lost this battle, but I will win the war. Tomorrow I will not play gym, for I will save my strength for swimming.

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So, I will go back to Wagner on Saturday, and I will finish practice and do it well. I love swimming, and I love the pool. When I swim I feel like I’m actually at peace. I won’t lose my favorite thing in the world. I will keep fighting, and Cowden’s Syndrome will not win the war. I WILL.

I cannot be normal, and I cannot play as much as I’d like to with the kids. I always have to watch and be careful about what I do to my body. Well, I am not going to let that stop me. I’m going to succeed and I’m going to live my life to the fullest.

Cowden’s Syndrome may win quite a few battles, but I will win this war. I will keep fighting and I will stay strong. I will get some injuries along the way, but I will recover.

Hey Cowden’s, did ya hear me? The war’s NOT over yet, and you will not be the victor. Take your small victories, for today was one of the days when I did give in, but it won’t be happening again any time soon.

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