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!

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

  1. You hit the nail on the head and I can’t help but compare to Ashton’s situation. I knew within a few days that Ashton’s situation was CS related but I was ” shut down” by a neurologist who had heard the name CS in a lecture the previous week, and with no knowledge whatsoever about this condition decided it was unrelated. To be vindicated 18 months later gives me no joy. What gives me joy is the current doctor who listens to her ( an adult now), me ( an experienced patient with CS) and works with us all as a team, never professing to have all the answers but at least listening to suggestions. He is indeed a rarity.

  2. sorry but now I’m on a roll. The doctors who say ” oh it will be benign. don’t worry about it” or ” its only a small lipoma, why worry” …well the first time I took the first bit of advice my next lump was a cancer and because I was taking your advice it went from grade 1 to Grade 2 till i checked it. The small lipoma was pressing on a nerve and hurting like hell. all we ask for is that you listen and show respect…now I’ll shut up!!! xxx

  3. Hi my name is Sarah Cliff and we live in Plymouth in England. My son Taryn who is nearly 19 has just had Cowden’s Syndrome confirmed. I would really like to talk to someone who has experience of CS as my son has been miss diagnosed since birth. Now we are at the beginning of adjusting to the news that Taryn has CS and the information in the UK is practically non existent and the hospital hasn’t even got a leaflet on the disease. Taryn has a brain tumour, tumours on his thyroid and a parotic tumour at the side of his face. No one is concerned that he has lost 4 stone in weight except me. It does not appear that the UK manages this disease proactively but rather reactively as they find something they will deal with it. Would really appreciate a heads up on how to best monitor and possibly treat this condition.

    Kind Regards

    Sarah Cliff

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