“Hey, I follow you on Facebook…”

There we were in the back of DSW looking for a pair (or two for accuracy sake) to fit the feet of my girl for “Aunt Em” in her school’s performance of “The Wizard of Oz” next week, and a woman approached us.  She was happy, and friendly, and it seemed excited to see us.  Meghan and I had never seen her before in our lives.  But, she seemed to know an awful lot about us.

dorothy and aunt em

“Hey, I follow you on Facebook!.  I am amazed by your story.  And you guys stay so positive all the time.  Such an inspiration!”

I’m not sure either of us knew quite what to do, so we smiled politely and said our thank yous.

Then we looked at each other.

Did someone just recognize us?  Like we matter?  A complete stranger?  Wild.

There are times I write, or we write, and I feel it is simply a therapeutic output into cyberspace.  Yet, we receive messages, some from all over the world, confirming our story is getting out there.  We know all about digital footprints.  But Wednesday, well we finally saw our own – face to face.  In the shoe store.

Why do we tell our story?  Why do we keep at it through the mundane and the heart-stopping?  Meghan says, because the truth needs to be there.  When someone looks, they need to find real people like us, getting by, every day.

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I guess she’s right.  She often is, although I don’t make a practice of TELLING her that…

Spring Break 2016

It sounds almost funny to say it.  But, we are ALMOST used to it. See, there ARE no breaks.  There just aren’t.

Doctors appointments take time.  On average 4 hours roundtrip to Manhattan considering wait time and traffic.  I have work.  Meghan has school.  We miss more than we should of each.  Routine appointments are for days off.  That’s how it has to be.  But, then you add in a flu-like virus from who knows where, and you insert about 3 extra visits to the pediatrician, on top of a cardiologist, just to be safe, well by the time you get to the routine sono of the thyroid bed (where the gland was removed to check for regrowth,) and the dermatologist, and the endocrinologist, and the traffic, and the very fair school project…  There is just about enough time to switch a closet or two, wash a few windows, and about HALF the curtains you intended to, while sneaking in one LONG trip to the grocery store.

We spent the early part of the break watching a few movies on Amazon Prime.  This is a real treat for Meghan because I am ROTTEN at sitting still.

Ferris Bueller

And somewhere in between “Ferris Beuller” and “Annie” we grabbed a few lessons.

Annie

From “It’s a Hard Knock Life…”

“Don’t if feel like the wind is always howling?
Don’t it seem like there’s never any light?
Once a day, don’t you wanna throw the towel in?
It’s easier than puttin’ up a fight..”

Sometimes when I come into the house I love, instead of feeling calm and relaxed, my heart starts to race.  I think of the papers, and the phone calls, and the bills, and the scheduling, and the terror of missing something, and the compulsion to keep up with the basics, and I just want to sit on the floor and cry.  Sometimes I even do.  Sometimes I even get grumpy for a while.  Then, usually when no one is watching I’ll grab a dog and rub a belly, or do something silly to try to shake off the enormity of it all.

I remind myself it’s about every little piece.  It’s about one day at a time.  It’s about counting the days with no headache instead of always the days with knee and hip pain.  It’s about looking at the pile, neatening it up.  Making a list, and leaving it there to go for a walk.  Some days I get it better than others, but I’m a work in progress.

Yesterday, we did well with the pediatrician.  He drew some more labs, but feels she’ll be well enough for full activity Monday.  The dermatologist, routine Cowden’s Screen, was without incident too.

Today, the new endocrinologist (only our second visit) proved himself to be a wonderful addition to the team I am so desperately trying to form for Meghan.  I DREAM of the day I get them all together, assign a captain and let THEM help me.  But, for now, he is bright, inquisitive, and willing to toss out the “rules” when he treats Meghan.  So the hormone that we had to ditch, the medicine that was out to save the uterus that now has to save itself, well that medicine can mess with T3 Uptake, one of the thyroid hormones.  Meghan has a hard time converting T4 (Synthroid) into T3, so we actually supplement with T3.  Most doctors have no idea.  He said lets raise it and check her in 2 weeks.  Works for me.  Feeling like a validated human is priceless because this child is so exhausted all the time, it’s just not ok.

He scanned that thyroid sonogram report, reassured us about a renegade “reactive node,” and moved it to the “watch list.”

The next few weeks are set to be a whirlwind.  I can only pray her body is up for the task.  Lots of good, and happy things on the agenda.

It’s a busy life.  I wanted to see some people this week.  I wanted to reconnect with at least one friend.  I know they are out there.  And yet again, the week didn’t allow me any advance planning.  Can’t expect people to wait around for me.  So my music and my computer keep me company, with the laundry and the dishwasher, while Felix and Meghan celebrate at a Sweet 16.  It’s good for them to get out together sometimes too.

#Beatingcowdens

requires focus, stamina, and its own brand of mental toughness.

We’ve got this.

 

“…plans to give you HOPE and a future.”

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When you’re in the middle of it, it’s often hard to see it.  You’re in the middle of it, trying to be careful, protective and nurturing.  You’re in the middle of it, often wide awake hours longer than your body wants to comprehend.  Sometimes you’re terrified.   Sometimes you’re confident.  Often you’re in prayer.  This thing.  It’s big.  Too big.  Like a giant web with unmanageable offshoots.

Somewhere in between trying to get back to school after a night in the ICU last Sunday, and this Saturday morning when she woke, not ready to swim, but with a raging 102.5 fever, I lived a few years.

The last few nights I’ve lived a few more.

Fortunately, I take pretty good care of my body, and when she’s well I make covering between 7 and 9 miles a day a priority.  I make eating well a priority always.  I invest in nutritional cleansing by choice.  It’s a lifestyle.  I focus on taking the stairs when I can.  Laughing with the elementary school children as I hit the 4 flights in our building over and over is good for me, and them.  Some people train for marathons.  I train for life.  It’s a bit of a marathon itself.

Buddha-Quote

It’s quiet here.  Nothing stops a conversation faster than telling in honest frank terms the newest challenges Cowden’s has thrust in our faces.  Last week there was the trouble breathing and the debacle of no answers at the ICU.

Tuesday the orthopedist recognized uncharacteristic tightness in al her muscles.   Her hips and legs were in full spasms.  He was confused.  Updating him on what was new since our last visit included the D&C amd precancerous cells in the uterus.  It included letting him know she is now on 10mg a day of progesterone.  To say he was unsettled be an understatement.  He let us in on his fears that the hormones were causing muscular issues, and that he feared her vascular malformation could indicate a tendency towards blood clots which this hormone level left the door wide open for.

Sigh.  Growl.  He left no bones about where he stood.  He withstood our questioning about risks and benefits.  He disagreed with the hormones.  End of story.  I asked if we were to return in 6 months.  I was told 2 months.  He’s concerned.

And as the week went on she continued to just feel worse.  For the second week in a row, only one swim practice.  An indicator of the severity of things.  By Thursday I reached out to the Adolescent Gyn.  She called while we were in the pediatricians office stating how poorly Meg felt.  All the suspicious virus tests came through negative.  CBC was normal.  Our Pediatrician spoke to the Gyn.  With reservation on her part, and too much “soft evidence” cited by him. the decision was made to pull the hormone.

no guarantee

This is NOT a decision to be taken lightly, for so many reasons.  The least of which, yet still significant, is the generalized body discomfort that came with the months prior to the D&C, and prior to the hormones.  It was torture for her.  Then, there was the clear declaration, (because everyone likes to speak to the very smart 12-year-old,) that this hormone treatment, this move to arrest cellular growth in the uterus was the BEST way to help ward of cancerous tissue trying to form.  In other words this hormone causing chaos in her body was her best shot at avoiding uterine cancer.

So to be in my head was not a good place.  To be in the head of my girl…  No words.

She woke up Saturday morning very unwell.  I don’t recall the last fever.  This one was 102.3 at 9AM.  Back to the pediatrician we went.  Tamiflu and 2 antibiotics.  Hit whatever it is hard, real hard, and keep her out of the hospital.  That was the plan.

So far it seems we’re on the right track.  The fever is waning.  The breathing is sometimes tricky.  The phlegm is thick.  She’s tough.  She’d hydrated.  She’s resting.  She’s doing her part.

There are decisions that have to be made while #beatingcowdens that no one should have to make.  There are guesses and speculations we have to play into, with no guide and no proven statistics.  We have to focus on today.  We have to make decisions based on today, and quality of life issues right now.  But even these are insanely complex.

We have a strong girl.  We are thankful.  We have a God who has a plan.  We are thankful for that as well.

There are times, as humans, we want to know more.  We want a guarantee.  We want insight into the plan.  It is a sign of our weakness.  We are working on it.  Our God will continue to guide us, strengthen us, and move us forward.  Be need to breathe in peace and faith.

Some days this is not an easy task.

faith peace

To our friends, please know we don’t hide.  We don’t avoid RSVPs to be difficult.  We don’t back out at the last moment because we want to.  We miss you.  We are anxious for easy, comfortable gatherings.  Life just seems to toss things in the way – often enough it gets difficult to dodge.

It’s ok if you don’t have words when we throw heavy stuff on you.  It’s ok.  Sometimes just to listen is all we could ever ask for.  Please listen.

We have not lost touch with your lives.  We understand we are not alone in challenges.  Do not feel you have to protect us by not sharing.  You trusting us, makes us feel valuable.  It makes us feel we matter to you.

See just because #beatingcowdens has overtaken our lives doesn’t mean we’ve lost touch with reality.  We want to see your baby photos, and hear about first steps, and awards, and sporting events.  Call. text, Email, write.  Know we haven’t left you for a better deal.  We, like you, are just keeping our heads above water.

We remain always, #beatingcowdens

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

And with the week that was, so much of this post from last April rings true still. While I gather my thoughts, this will do…

beatingcowdens

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…

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#BeatingCowdens #NoMatterWhat

The week was tough.  The pain was real.  The reflux was persistent.  The fatigue, bone crushing.  There were three missed practices and a missed school day, simply because she couldn’t.  That NEVER happens.

By Thursday, when she had clocked too many hours of sleep for me to count, I started trying to pull some things together.  My “Mommy Senses” were tingling.  Things were going downhill fast.

I checked through the files.  When was that last brain MRI?  She should probably have another because the headaches won’t quit.  And, if I want to blame the hormones, which my instincts do, we have to rule out any other possibility.  But, we fired the neurologist.  UGH.  How I dread training new doctors almost as much as I despise working with rotten ones.  On the hunt…

And the GI.  She is a wonderful woman, but she is on a personal leave.  We can’t keep at this level of reflux meds.  It will start to hurt her bones.  But, I can’t imagine letting her try a day without some attempt to shield her stomach from all this crap.  I hated all the GIs.  As Pop would have said, “I’m difficult to work with.”  And, THAT was on a GOOD day,  When someone isn’t doing right by my girl, I’m IMPOSSIBLE.  Hunting again…

New doctors.  Tough to find.  Take up hunks of time while we get used to each other… and in the mean time, we wait.

But waiting seems like such a bad idea.

Saturday she dragged herself out of bed for the CYO meet at CSI.  She swam three events, beautifully.  But, before the 50 fly, her favorite, she was struggling.  She motioned to her head.  I made a mental note.  She swam like an all-star, turning in her best time again.  And then it all went quickly.

She was on the deck obviously struggling to breathe.  I grabbed her stuff, and had Felix get the car.  We switched seats at the house and I drove her to Urgi Care.  By now she was feeling better, but still weak, and tired, and full of reflux.  At least she could breathe.

Urgi Care triaged and told me to get her to the Emergency Room.  90 minutes past the swim meet her heart rate was still at 120+.

 So in went the IV.  Out came just about enough blood, but not exactly enough to cover the blood tests the pediatrician wanted.  Then the order for the abdominal CT, and the contrast dye to be swallowed.  Two hour wait in a tiny crazy room.  Heart monitor, IV fluids.  No dehydration.  No obvious signs of infection.  And a negative CT scan.

 There was a ticket to the Peds. ICU for monitoring overnight.

 Some dinner from Daddy at 10 pm.  ICU monitors everywhere.  Medical history to the resident.  I come with three typed pages of summary in tow.  Medication and history in the computer.  Heart rate coming down.  No real ideas.

The night passed and I spent more time than I should have ALONE in the PICU.  No nurse.  Nobody.  Made me wonder why we were there.

I watched the heart monitor like it was my JOB.  I took notes.  I watched the 120+ heart rate hit the mid 40s.  I watched the blood pressure dip to 92/37… I walked and watched and walked some more.

 In the morning when they showed up again, they told me a heart rate in the 40s was ok for an athlete.  Not to worry.  Then I asked how 120 could be “mildly tachycardic” if 40 was “normal.”  Can’t have it both ways.

The evening resident blew the meds.  Even with the cheat sheet.  The overnight nurse dosed her with illogical concoction of thyroid meds, despite my cheat sheet.  The day resident paid more attention.  Definitely more than the dietician who served her a tray with milk AND soy.

There was a negative chest x-ray as they grasped at straws.

The thyroid numbers were all in range.

What would you do?   I challenged the resident.  What organ do you pick to save?  What medication do you give up?  I didn’t expect any answers, but I wanted to get in her head.  Just a little.

 Time to discharge.

With a list of new doctors to find on my own.  And absolutely NO answers.  So the next time she goes to swim, or play, or do anything, I have no way of guessing if this will be our new normal.  Can’t keep a 12-year-old in a bubble.

Onward.  Focused.

#Beatingcowdens #nomatterwhat

 

DO SOMETHING!

Do-Something-Today

The story of how a New York City girl got the ear of a West Virginia Congressman is a long windy one that involves the depth of love and dedication the United States Marines hold for their own.  That loyalty and brotherhood extends through generations in ways that would be difficult to explain in words.

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That, will be the story for another day.

For today, what you need to know is one of those Marines, who I hold very dear, heard me when I spoke.  He listened when I told him how my father apologized upon learning Meghan and I had been diagnosed with the PTEN mutation that causes Cowden’s Syndrome.

Once Dad understood the PTEN mutation, he became very sure that he “brought this back from Vietnam.”  Dad was certain that his exposure to Agent Orange in the jungles of Vietnam had changed his body.  He was also sure that the toxin was responsible for what my genetecist deemed a germline (inherited) mutation in Meghan and I.

We know for sure that Meghan got her mutation from me.  What we don’t know with certainty is where mine came from.  My mother and younger (half) sister on my mother’s side tested negative for PTEN.  My father was never tested.  Before I could ask, he passed away from Pancreatic Cancer in December 2013.  However, we do know my mutation was not “de novo,” or spontaneous.  We know it was germline, “most likely passed through the sperm of your father,” my genetecist explained.

So, all we had to go on were Dad’s instincts, which I knew were in no way going to ever prove causative to the US Government.

But I reached out, and I acquired anecdotal evidence from my online support groups where 4 people other than myself indicated a first degree relative with a similar toxic exposure.  In a disorder as rare as Cowden’s Syndrome (1 in 200,000) with group sizes in the low 100s in most cases, these were numbers worth noticing.

Sometimes a theory is all you need.  And when you eliminate the need to “prove” and you focus on the need to “educate” and “raise awareness,” sometimes you can make progress.

Today, the story is about how Congressman David McKinley  (West Virginia) and his staff listened when we spoke about Cowden’s Syndrome.  And they did something.

I was put into contact with Lou Hrkman, the Executive Assistant to Congressman David B. McKinley, P.E. (WV-01). (412 Cannon Building Washington, DC  20515 (202) 225-4172) through that Marine I mentioned earlier.  Alan doesn’t give up.

I shared an explanation with Mr. Hrkman, of Cowden’s Syndrome, and more specifically PTEN Mutations.  I told him about the impact on our lives.  I told him about my father’s instincts.  I talked to him about how, with a syndrome like this, KNOWING SAVES LIVES.  We spoke about veterans and toxic exposure.  We spoke about the thought that exposure could alter genetics.  We talked about RARE DISEASES, and more specifically, RARE GENETIC DISEASES.  We spoke about how if the doctors at the VA were trained to look for these disorders, or to be more aware, or to educate veterans, or to look for these disorders in descendents of veterans, that it is likely LIVES WILL BE SAVED.

This week I was contacted by Mr. Hrkman, on behalf of Congressman McKinley, to draw my attention to the last paragraph on page 47 of the…

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It says…

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And there it was.  In print.  For the VA Hospital System to be held accountable for education.

It is not passed yet.  The specifics of the bill need to be debated in Congress, but he is confident.

We who are so anxious to be heard, to be noticed, to be recognized, this is a huge first step.  And while I realize many of you are not relatives of Veterans, I feel it is SO important that we take this opportunity to raise awareness NOW!

I asked Mr. Hrkman what people can do.

Here was his reply…

It sounds quaint, but writing or meeting with your congressman is the best thing you can do.  Members take notice when their constituents are interested, especially on a personal basis versus a mass mailing or robo call thing. If you write your member, specifically reference the document I sent you (Military Construction, Veteran’s Affairs, and Related Agencies Appropriations Bill, 2017) and the page number. (Page 47)  I would also contact Vietnam Veterans and other Vet groups, but Vietnam Vets are especially affected.

PLEASE, right now, my American Friends, contact your representative in Congress.  Let’s make them HEAR US.  ALL OF US.  This could be the start…

PLEASE, share this post far and wide.  Tag anyone who you think might help.

It’s time for us to DO SOMETHING…

“Do Something” by Matthew West

I woke up this morning
Saw a world full of trouble now
Thought, how’d we ever get so far down
How’s it ever gonna turn around
So I turned my eyes to Heaven
I thought, “God, why don’t You do something?”
Well, I just couldn’t bear the thought of
People living in poverty
Children sold into slavery
The thought disgusted me
So, I shook my fist at Heaven
Said, “God, why don’t You do something?”
He said, “I did, I created you”If not us, then who
If not me and you
Right now, it’s time for us to do something
If not now, then when
Will we see an end
To all this pain
It’s not enough to do nothing
It’s time for us to do something

I’m so tired of talking
About how we are God’s hands and feet
But it’s easier to say than to be
Live like angels of apathy who tell ourselves
It’s alright, “somebody else will do something”
Well, I don’t know about you
But I’m sick and tired of life with no desire
I don’t want a flame, I want a fire
I wanna be the one who stands up and says,
“I’m gonna do something”

If not us, then who
If not me and you
Right now, it’s time for us to do something
If not now, then when
Will we see an end
To all this pain
It’s not enough to do nothing
It’s time for us to do something

We are the salt of the earth
We are a city on a hill (shine shine, shine shine)
But we’re never gonna change the world
By standing still
No we won’t stand still
No we won’t stand still
No we won’t stand still

If not us, then who
If not me and you
Right now, it’s time for us to do something
If not now, then when
Will we see an end
To all this pain
It’s not enough to do nothing
It’s time for us to do something [x3]

This Matters

A few weeks ago, as we were preparing for World Rare Disease Day, my principal allowed Meghan to speak to my school.  She did an assembly for the entire school, first grades 3-5 and then grades K-2.

In both assemblies she showed her video, although we clipped the beginning from the little guys.

In both assemblies she spoke about Cowden’s Syndrome, following her mission to raise awareness.

Our Student Council actively worked to collect denim as part of a fundraiser for the mission.  They were amazing.

One little girl, our first grade friend Emma shared her journal with Meghan.

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Meghan and Emma
                                                     Meghan and Emma

Then she shared the journal with the whole school.  We are so proud of Emma and thankful for her bravery.  It felt really good to know the mission of awareness was working, coupled with intelligent compassion as young as first grade!

We had the fundraiser on the 21st of February.  The $13,000 has been dispersed, but the lessons remain.

Children in my hallways ask about “Meghan” as if she is one of them.  They want to know how she is, and what she’s up to.  A few even ask when she is coming back.  These are the young, bright eyed reasons I love my job.

Plus one more

About 2 weeks ago a young lady sought me out to give this to me.  This was a labor for her, truly a labor of love.  Writing is not easy, but clearly compassion is a natural emotion for her.

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We are getting somewhere.  Meghan wants the world to know.  With promising children like this on her side, she’s developing the advocates young.

With much love and gratitude, we remain

#beatingcowdens

This is Our Reality

Alone, in a crowded room.

alone in a crowded room

As I look around frantically trying to figure out exactly where, or how I fit, with anyone, my mind wanders.  I can’t seem to make conversation, or to pass the time socially as easily as others.  I watch.  I retreat as soon as I can.  I can’t quiet my head.  And, knowing the whole line of thinking that occupies my mind some days makes everyone uncomfortable, I step back into myself to cycle through reality.

occupied mind

“Those hormones?  Are they causing her headaches?  Or is it something more sinister?  How would I even know?  Do we need to use another MRI?  What if it is the hormones?  What choice do we have?  The doctor said she has to stay on them to stop the development of those “irregular cells” in the uterus they found in December.  They’ve already begun to schedule another D & C for July.  “You have to make sure…”  The uterus is a prime site for malignancy in Cowden’s Syndrome.  I got to keep mine until Meghan was 8.  Will she get to keep hers?  Will she have the chance to make the choice whether she wants to bear her own children?  And, even if we save the uterus and she wants to, will it be viable after 15, 18, 20 years of hormone treatment?  And at what cost to the rest of her body?  What about the breast cancer threat that looms large to a young woman whose Cowden’s Syndrome alone puts her at an 85% lifetime risk.  That coupled with a mother and grandmother who have had breast cancer… sigh…why is it even a topic of conversation when she’s 12?  It seems so unjust.  This issue shouldn’t have to be addressed now, well not ever really, but especially not now.  And when she has the headaches I have to give her something.  What about the headache medicine?  What about that esophagus we are trying to heal?

 

Is it those medicines that caused the horrendous reflux after Easter, or was it her MINOR indulgence into a few SAFE sweets?  Why should a slight indulgence cause such discomfort and vomiting?  Why does she have to be so careful all the time about everything?  No wonder she is so serious.  And what if it is the headache medicine?  What am I supposed to do to help her?  Tell her she has to deal with it?  I can’t imagine “toughing out” a blinding headache.  

 

The knee.  Oh the knee.  She tries not to complain about it, but I see when she struggles.  The AVM is finally stable, but the leg takes a lot of work to develop.  She works hard on it too.  But, the stamina isn’t there.  Hours in a pool yes, on land, no way.  Standing too long, walking the mall, or for a short walk, things we take for granted cause such pain.  And pain causes fatigue.  And on the occasions she relents and allows the wheelchair into use, she struggles.  Not for the need to use it temporarily, but for fear of insulting those who have to use it all the time.  She is proud.  She is frequently humbled.  She is conflicted.

 

And who wouldn’t be?  16 surgeries before the 13th birthday.  The need to be tough all the time, while you feel weak.  The desire to be stronger.  Having to fight, hard, for physical accomplishments.  Having to accept the ones that will never be.  Never giving up.  Pushing to be better.  To make the world better.  

 

She’s not perfect.  Never has been.  And oh, there are DAYS…  But she is good, in her heart.  She means well.  She has no spite or malice, and I can pray it remains that way.  I can pray that the children who don’t get it, one day come to understand her, just a little better.  That one day they can accept her,  for the good in her.

 

I scheduled 3 doctors appointments for the next three weeks.  Dermatology, orthopedics, and endocrinology.  The first is a screening.  Cowden’s Syndrome, melanoma risks.  Her father’s increased risk of melanoma on another unrelated genetic disorder.  Her grandmother’s melanoma this summer.  Every 6 months they told me.  Bring her every six months.  The others will work on long-term plans.  Spring break.  Every holiday, every vacation.  Every day off.  Doctors.  Not the mall, or a friend’s house.  Doctors.  For what?  And I’ve toned down the list quite a bit.

 

There are two bills of my desk.  One for her and one for me.  Both a battle.   Always a battle.  If it’s not the reality, or the appointments, it’s the bills.  And we are so fortunate to have insurance.  But, the hours.  Oh my goodness, the hours…”

 

I try to shake it off.  To stay focused on the good.  On the positive.  On the blessings, and they do abound.  But, so often it’s just me, and my head.  Working to get out of my own way.

I miss my Pop.  I miss my Grandma even though she’s still here.  I miss their goodness.  I miss my Dad.  I miss his listening ears.

I quiet the voices a little and try to follow the conversation around me.  I smile politely and nod.  I stay quiet.  “It’s good.”  “We’re good.”  That’s about all they can handle anyway.  Even the ones who genuinely do care.  Why drag someone to a place where there is absolutely nothing they can do or say?

cheshire cat

This is our reality.  This is Cowden’s Syndrome.  This is every day.  As long as we have breath, and strength, and stamina to shake off the pain, place the smile firmly where it goes and press on, we will.

Because the real reality is that every person in the room may have a similar string of thoughts in their head.  The reality remains that EVERYONE HAS SOMETHING…

been through something

I booked dinners for our Disney trip today.  I like to plan ahead.  Plus, Disney gives me a little extra strength, so that we can remain always,

#BEATINGCOWDENS!