To My Daughter’s Team of Medical “Professionals…”

I went to college, and graduate school, and took 30 credits above my Master’s Degree in Education.  I earned a job as an elementary school teacher, in the school I attended as a child.  And, after 18 years on the job I still love those moments when I am alone with my students, and things just “click.”  But, nothing happens by accident.  And despite the belief that a teacher’s day ends at 3PM, many a long night has been spent with those very students in mind, planning lessons, and creatively trying to reach them where they need to be met.  I am not always successful in my execution, but I am confident in my planning and preparedness.

Because, you see that is what I was always told a professional is, and does.  You LIVE your “job.”  You are still the teacher, in the mall, in the restaurant, or even in CVS.

As a professional educator, I take pride in TRYING to meet the needs of my students at their level.  It is my responsibility to help every child, not just the easy ones.

But, lately I am wondering if every professional has that same feeling.

Now, I mean no offense to the various healthcare professionals who go above and beyond for us, and for their other patients.

It’s just, well, the rest of them.

Having Cowden’s Syndrome sometimes feels like, well like I would imagine it might feel to have a plague, or leprosy.  People, doctors, whomever, look at you tentatively.  They look with caution.  They don’t want to get too close.  They are afraid to treat what they don’t understand.

And worse – no one wants to be in charge.

We are the worst kind of liability – more dangerous than a safe full of cash or a rare artifact.

Everyone wants to see us, all the time.  But, they just seem to want to check boxes that say they’ve met their “I’ve seen a Rare Disease” quota, and send us on our way.

I am the CEO of my daughter’s medical care, and while frighteningly competent to do the job, NO ONE is listening to me.

To My Daughter’s Entire Medical Team:

You are dropping the ball here.  Someone step up and take charge.  Talk to each other.  Get your egos out-of-the-way.  LISTEN to me.  LISTEN to her.  Put her picture on her chart to remind you she is a REAL person.  

She is charming and beautiful.
She is charming and beautiful.

Believe her when she says it hurts.  Even when it is not “supposed” to.  Validate her.  

And sometimes. as unpleasant as it is to see, there is lots and lots of very real pain.
And sometimes. as unpleasant as it is to see, there is a lot of very real pain.

 

She talks a lot when she’s nervous.  Care about what she has to say.  Care that she is nervous.  Learn about her love of swimming and reading and performing.  Adapt your plan, your day, your treatment to fit MY child, just as I would do to yours in my classroom.  Treat her as a whole person.

We are tired of spending hours in the car, missing practices and play, and relaxing time, just for you to feed us a line of “maybe,” “watch that,” and “come back.”  We are tired of going places where no one wants to give us answers, or even answer our calls.

We are tired of surgery.  But we do it.  Over and over.  

It's a real person enduring those procedures.
It’s a real person enduring those procedures.

Call back when I have questions.  Like within 24 hours.  Because I carry my phone until it leaves an imprint in my hand when I wait for you.  Nothing else gets my concentration while I wait for the ring.  I carry my list for fear of missing that precious window with you.

Oh, and by the way, the foot with the AVM had stopped growing. Take a look. Someone.  Please.  It’s a bit disconcerting.

She’s hot.  Often. And at odd times. And I’m not just talking a little uncomfortable.  Anyone want to help address that one?

And yesterday the dermatologist said it’s a vascular malformation in her hand.  Another one.  Please don’t tell me it’s not all connected.  I’d rather you tell me you don’t know.

Don’t ignore her symptoms because you don’t understand them or can’t explain them.  Trust me when I tell you, she’s not making it up.  Any of it.  She spends her time trying to make the world better for other people. Isn’t it about time you all got it together and started making HER world better?  

And when the knee is at it's worst, there is still a way to press on.
And when the knee is at its worst, there is still a way to press on.

The pain in the knee is constant.  Yep, I know it “shouldn’t” hurt either.  But, she doesn’t even ask for medication anymore for fear of the same issues her last pain medicine caused in her GI tract.  She just endures.  All day.  And then she goes to drama, and then she swims, and manages an average of 97% and the National Honor Society.  She limps a bit by the end of the day.  It’s the mornings that are the toughest.

To you she is one of many.  To me she is my one and only.  And this child,  young lady, has the capability to effect great, positive change in this world.  I know you are tired.  I know your schedule is busy.  I know research takes time.  Start by listening to us.  Listen.  Care.  Let her know she matters.

Then maybe, just maybe, she’ll start to trust you.  Then, slowly, together, you can try to make her life more comfortable.  Because, with or without you, she and I are BEATINGCOWDENS together.

Sincerely,

Her Very Determined, Sick of Excuses Momma Bear!

Flip It…

dead-poets-society-1

Some time in the middle of this winter that lasted forever, I started to notice people complaining about a sidewalk near my school that was often left icy and uncleared.  The grumbling that would take place was sometimes quite extensive, and I admit to spending a day or two doing some internal grumbling myself.  Then I decided to cross the street.  It was a simple idea.  Just because I had ALWAYS walked on that side of the street, didn’t make the other side a worse choice, nor was it inconvenient.  It was just different.

Soon after I decided to cross the street I found I was less cross myself in the mornings, most of which were rushed and hurried, navigating snow and ice covered streets and looking for parking safe for my very low Sonata.  One day I even found myself talking to one of the neighbors near the icy house.  She volunteered to me that the elderly couple was not well, and while neighbors did their best to keep up, it wasn’t always possible.  Made sense.  My grandparents are in their mid 90s and live in their own home.  They have kind neighbors who often clear their walkway before family can reach their home.  But, what if they didn’t.  And what if we didn’t live close?  It’s easy to judge.  I’m guilty too.  But I’m working on a simple move, we’ve come to call – “Flip it!”

bigger picture

We talk “Flip it!” when it’s something that can be fixed.  When it’s a negative thought that can be changed.

I’m not suggesting the world go all “Ms. Mary Sunshine” all the time.  As a matter of fact the person who always flippantly replies,”Could be worse,” to EVERY situation, often drives me mad.  Sometimes things just stink.  Sometimes they are even worse.  But, for most of us, for the day to day stuff, if we just grab a different perspective, things change quickly and significantly.

Problems

I think all this came to mind tonight as I sit, preparing to return to work after Spring Vacation.

This was not a fabulous vacation, but yet nothing awful happened.  We cleaned lots of things.  We saw a few doctors.  I made some phone calls. We got through some necessary spring shopping for my girl who managed to outgrow her entire wardrobe again.  Yet, I have this feeling in my stomach, this queasy Sunday night anxiety, that reminds me no matter how much I like my job, I’d rather be home with my girl.  Even in this “preteen” phase of our lives, she makes pretty good company.

rainbow not thunderstorm

So, as I started to get down, I was reminded of a dear friend, buried under more than her share of worries, who called to tell me she was being laid off. By no fault of her own, I might add, and I was jolted by the reality that the job market isn’t as good as those of us in pretty secure jobs like to think. It made me think that going to work tomorrow, in a building where I am comfortable, with staff and students that are generally nice to be around, and where I will get paid via direct deposit on the 1st and the 16th is a privilege.  The alarm will hurt a little.  But I will, “flip it.”

Shopping wasn’t easy.  There are shoe challenges for this beautiful girl whose feet are each growing at their own pace.  But, we found what we needed, even when I had to buy two pairs and toss one of each a few times.  There is a dress for Arista, and a dress for the swim dinner, and one for her grandfather’s 80th birthday.  There is a beautiful young lady.  So while the shopping pricey, that job security was a comfort.  When shopping for shoes was terribly frustrating, like a kid in a candy store who can’t eat anything she wants, we remained grateful.  In the most basic forms of gratitude, she has her mobility, she has immense upper body strength to compensate for a weak knee.  We have the means to keep her dressed as she needs.  Can’t always have what you want – but, rather what you need.  “Flip it.”

perspective

We didn’t make church as a family of three today.  Meghan didn’t leave her bed till after 1, even with the blinds wide open and the bright sunny day on her face.  The fatigue was too much.  The thyroid hormones still unbalanced.  The exhaustion from just being “normal” is too intense sometimes.  But I got there.  To celebrate our pastor.  To worship in a room full of kind souls.  To watch a baptism, and to pray.  I was alone, but yet I was reminded that I am never alone.  “Flip it.”

On April 20th we will make an unscheduled stop to the dermatologist.  There is a suspicious mark on Meghan’s side.  While no one is panicked, living with Cowden’s Syndrome, and our obscenely high cancer risks, make everything all the more unsettling.  We will get it checked, and hopefully it will become quickly a memory.  But, we won’t wait.  Cowden’s Syndrome is a burden.  There is never a break from screenings and testing, and checking.  But, we get to strike first.  And no matter how overwhelming this battle becomes some days, I am always close in heart with my loved ones who have battled cancer, and those who are battling it now.  Our screening and preventative medicine while cumbersome is a gift.  “Flip it.”

My heart and my head are full all the time.  Sometimes I can keep it in check, and other times I need to remind even myself to find  way to “Flip it.”

In every house, on every street, in every city, in every state, in every country in the world, EVERYONE HAS SOMETHING.  It is our awareness of others, our ability to see things from another perspective, to know when to make others laugh, and when to hold their hand, to know we are not alone in our struggles.  That is how we define where our life will go, and the mark we will leave on the world.

-always-be-kind

We remain – BEATINGCOWDENS…