Dear Stress, Let’s Break Up…

Because truly I’m getting bored of you. I’d like try to spend some time with Serenity, or Sanity, or Relaxation, or maybe Peace.

I know I’m bad at ending relationships. I get attached even to things that are just wrong for me.

I make excuses. I have a hard time letting go.

And you, well you are relentless. You keep finding ways to get in my face.

Yesterday you played nasty. I had a simple appointment. Do I need the implant replaced or not? And somehow it turned into an insurance nightmare and a need to consult with a new plastic surgeon. The surgery will be. But at least it’s not urgent. Sheesh! I needed to fit in a consult with a NEW doctor?  You know how much I LOVE new doctors right?  AND EXTRA trips to the city.  My complete favorite.

And as I tried to reach Meghan’s doctor to get things scheduled I hit so many roadblocks it was like you were just taunting me with your tongue out. I get it. Long weekend. Except it’s TOO long if you’re waiting on things like this.  I cried.  I admit it.  You got to me.

But you know what Stress? You’re taking up too much energy. And once again my kid set me straight. She swam one heck of a practice tonight. She will swim her December meet. I owe it to HER to work around her passions.  We even chuckled, knowing the reality of what she COULD be facing, and the super importance of her swimming, and singing, and acting. No matter if the doctor understands. God help me no matter if it delays things a few days. (Breathe in breathe out…) cause we have to prioritize.

Stress you don’t like focus. You like chaos. You like drama. You like mayhem. I doubt you’re gone for good. But we are so over you.

Excuse me while Peace, Serenity and I dig out the Christmas tree.

I will release you with my mind. I will release you with my energy. I will release you using ADAPTOGENS.  I’m really not interested in you…

We’re too busy- BEATINGCOWDENS!

(Breaking the) Code of Silence

The song by Billy Joel…

“Code Of Silence”

Everybody’s got a million questions
Everybody wants to know the score
What you went through
It’s something you
Should be over now

Everybody wants to hear the secrets
That you never told a soul before
And it’s not that strange
Because it wouldn’t change
what happened anyhow…

…And you can’t talk about it
Because you’re following a code of silence
You’re never gonna to lose the anger
You just deal with it a different way

And you can’t talk about it
And isn’t that a kind of madness
To be living by a code of silence
When you’ve really got a lot to say…

           And as happens sometimes when there is a lot on my mind and I’m left alone with my thoughts, music creeps in.  Today Felix and Meghan are on a youth retreat with our church youth group.  They are spending the weekend.  I cleaned a bunch, switched to the winter drapes and started to transtition into holiday mode.  It’s been a few tough Decembers.  After losing my Dad in December of 2013 and then in the fall of 2014 saying goodbye to Grandma Gen, Uncle Jerry, and our beloved Allie dog, I was intent on getting some time to get my heart and soul peaceful for Christmas.  But, despite my best efforts and lots of early shopping complete, my heart is heavy with worry once again.
           I know people will say you can’t worry and have faith.  If that’s true then my faith needs some work.  But, I think its my faith that keeps a leash on worry and keeps it far away from depsair.  And for that I am grateful, although things are getting a little tricky here again.

           I began this blog years ago with no expectation of personal privacy.  I have been gratified by contacts made all over the globe, and have enjoyed having the ability to nudge people towards support or just read that our story gives them hope.  But, then I began to write about my daughter.  And we had tons of conversations about digital footprints, and things we can’t take back.  She has been like a champion, willing to share her story through me in the name of education, advocacy and awareness. She wants a place where people can read about REAL people REALLY dealing with Cowden’s Syndrome every day.

           Yet, in her day to day life Meghan is a bit reserved.  She is careful with her words, and trusts sparingly.  She is constantly aware of the different lens through which she views life, in light of her medical experiences.  She is acutely sensitive to the fact that even the children who care, are unsure how or what to do if she talks about her real life.  PLUS, so much of what goes on is hard for us to process.  There is just no way to expect a typical 7th grader to go there.  Heck, I can’t get the adults I confide in to wrap their heads around any of this.

           November was supposed to just be me.  Traveling to the plastic surgeon to determine if my right implant ripped, and scheduling surgery if needed.  I go there Tuesday.

           But, November has already been very busy.  We met earlier this month with a new doctor, an adolescent gynecologist at NYU.  She listened to Meghan’s story.  A story that began with what we hoped was just an erratic start to a teenage menstrual cycle.  She reviewed the ultrasound from July with the “abnormal endometrial thickening,” and she asked some questions to my girl.  Who at 12 is clearly adult size, just shy of 5 foot 7 and a very trim 115 pounds.  My girl had her notebook and answers.

          Then there were more questions.  Because since the middle of August there have been less than 10 days with NO bleeding.  So there were blood tests to check hormone levels.  And there was a repeat sonogram scheduled.
           There was also conversation with this very young, very attentive doctor.  A  doctor who made no bones about researching Cowden’s Syndrome and telling both of us that she found 2 cases in the literature of Cowden’s patients with uterine cancer – mean age 13.5.  Ouch.  She told Meghan that she had some investigating to do.  And then we would know more. We already had this information stored so the minds race.

Cowden Syndrome

Approved by the Cancer.Net Editorial Board, 11/2014

What is Cowden syndrome?

Cowden syndrome (CS) is part of the PTEN hamartoma tumor syndrome. Hamartomas are benign, meaning noncancerous, tumor-like growths. Other clinical syndromes that are part of the PTEN hamartoma tumor syndrome are Bannayan-Riley-Ruvalcaba syndrome (BRR; diagnosed in children), Proteus syndrome, and Proteus-like syndrome. CS is characterized by a high risk of both benign and cancerous tumors of the breast, thyroid, endometrium (uterus), colorectal, kidney, and skin (melanoma).


           The ride home involved some of the toughest questions I’ve ever had to answer.
           And then the hormone levels came back utterly confusing.  The doctor said they make no sense.  It didn’t gel with the tickened lining and the bleeding.  It didn’t gel with anything.

           And the ultrasound Thursday at 4 pm was read by Friday.  Warp speed for you experienced parents.  The doctor called me at 7 Friday night.  The conversation led us to the necessity of a biopsy.  Too many things aren’t right.  “There is no formula, no plan to proceed in a child this young.  We just have to trust our instincts.”  I like her.  She cares.  But again, I’ve been doing Cowden’s longer.  I have to be alert.

           Welome to my world doctor.

           We’ve heard this song before.  “Could be…” “Maybe…”  “We’re concerned…”  and it’s been fine every single time.

           It’s just the weather is getting colder, and after school trips to Manhattan hold no appeal.  Missing work, making it up, racing to the swim practices she loves.  We’ve done this all before.  Different reasons.  But there seems to be very little real break in between.  And the pace is hastening.

         This week is Thanksgiving.  We’ll put the tree up.  We’ll work on some cards, and I’ll help Meghan organize a few more things for the Jeans for Rare Genes Fundraiser.

           Monday I should hear about a date for the biopsy.  Hopefully.  Then there will be at least 5 days after that date for pathology.

          And the “Code of Silence” permeates a few other non Cowden’s areas of life.

           This young lady I have is strong.  She is funny.  She is tenacious.  She is a swimmer.  She is an actress.  She loves to sing.  She is NOT Cowden’s Syndrome.  But IT is trying to play dirty with her again.  And I just don’t like it one bit.


(This blog, like all other ones of a personal nature, was approved by Meghan.)

A Lesson in Brave


To My Girl,

This week we wait.  Again.  We wait to see how nasty Cowden’s wants to play, and in what ways you’ll need to show it who is the boss.  Again.

You have every right to be frustrated.  To be mad.  To be fearful.  You could be negative, and self-absorbed.

But instead you’ve chosen to be brave.

And I have no words to express how proud you continue to make me every day.

You are strong.  You are brave.  You are focused.  You are successful.

I have learned so much from you, and I continue to learn.

Whatever this week brings, we will handle it.  Together.  Cause there is NOTHING in this world capable of stopping you.


Just remember if you need a hug, a shoulder, or an ear – I’ve got all three.

Love you my girl,



Making the Most of It All…

Sunday night, coming home from a swim meet, Meghan outlined her goals.  Among them included, “no surgery for a whole year.”  To someone who hasn’t had 4 surgeries in the last 12 months, that may not seem quite that important, but to Meghan it was at the tip-top of the list.

Over the last several years she has spent more time living in “recovery” than just living.

Your Recovery Green Road Sign Over Dramatic Clouds and Sky.

She dropped 16 seconds total off her event times at this month’s meet, and 17 last month.  Insanity.  Except to a young lady who is now growing into herself, and her abilities.


She wants to swim.  Hard and often.


She wants to soar academically – no average under a 95 will do for her.

She wants to act, and sing, and be on stage.

She wants to participate in her youth group, and retreats, and live her faith.

She wants to raise community awareness of Cowden’s Syndrome and rare diseases.

She is on the move all the time.  I know, because I am with her.  Or helping her stay organized.  Or transporting her at least.

This weekend we drove 200 miles.  Today at least another 60.  LOTS of time for car chat.  Lots of time to get to know each other well.


Sometimes she drives me crazy.  Sometimes I frustrate her so badly she wants to scream.  Sometimes she does homework, reads, or works on projects.  But, lots of other times we talk.  About anything and everything.  And as much as I hate traffic, and long distances, I’ve learned to make the most of our time in the car.  I’ve learned to appreciate my captive audience, with the realization she won’t be in my back seat forever.

Captive Audience words on a ransom note in cut out letters in a message to forced or trapped customers or people

As a matter of fact after today’s appointment, she could easily be in the front seat.  All the time.  At a very trim waistline, and a height of almost 5 foot 7, she presents as YEARS older than she is.  Which I sometimes have to remind myself when I am busy expecting her to have it all together.  Sometimes she still needs me to help her along.

Today was the knee surgeon.  Six month follow-up.  He sees the shift in the patella.  He feels the scar tissue, and the clicking.  But, he said, she can wait.  She can wait until she’s ready before he cleans it out again.  With Cowden’s it’s a fine line.  How much pain can you deal with?  Because every surgery will lead to an overgrowth of scar tissue which carries its own issues.  Drag your feet.  Know when enough is enough.

Next we will have an MRI to check on the AVM.  As long as that’s stable, we should have a bit of time.  A bit of time to do some things besides recover.  A bit of time to be a bit more like a “normal” busy 12-year-old.  Well, like a “normal” 12-year-old planning a fund-raiser for more than 150 people with her favorite Disney entertainer… But, hey, she dreams big.

This kid. My stength. My motivation. My hero.

This kid. My strength. My motivation. My hero.

Tomorrow she goes to another doctor.  And about this one I just pray.  A lot.

In two weeks I get to remind myself I have Cowden’s with an unplanned visit to my plastic surgeon to question a poorly behaving painful prosthesis.

Plenty to preoccupy the mind.  In our immediate and extended family.

One day, one event, one obstacle at a time.

I did start my Christmas shopping.  After 2 years of holiday sadness, I am craving joy, and celebration.  I am craving the anticipation of the birth of the baby Jesus.  I am determined to remove myself from the holiday hustle and bustle.  I am determined to set my mind right.  Because none of us ever know.  Really.  And there is no promise of tomorrow.  Really.

But organization makes me happy.  And it’s about being happy.  And making the most of it all.  All the time.



“BE the Change You Wish to See in the World” – Ghandi

be the change

With another fall season upon us, life is in full blown crazy mode.  And, to be honest, we wouldn’t have it any other way.

Yesterday, my 12 year old FINALLY throughly enjoyed a Halloween.  It was such a thrill to watch.  FINALLY, she was able to trick or treat, EAT a few treats, AND keep up with some serious walking with friends.

Of course, she slept until almost 1 pm, even with the time change, and woke up unable to move her AVM knee.  These are the repurcussions we expect.  She is not “normal,”  but when she can pretend for a while when it really counts… well that is a great success.  And even as she lay still most of the day, she smiled.  She sang.  Joy.

Fall is full of things, and so far she’s managing nicely.  With a marking period to end Friday, Pupil Path tells me grades are at an all time high.  Practice 4 times a week has her swim times at an all time low.  And, drama twice a week is leaving hopeful anticipation as “The Wizard of Oz” is soon to be cast.

She is working with me to plan our second fund raiser in February.  We chose a date close to World Rare Disease Day, with the continued desire, and intention to bring awareness to our rare disease, and over 7,000 rare diseases worldwide that affect 10% of the world’s population.  We are acutely aware that to be heard, we need to join collective voices.  Individually we matter little to most of the healthcare system, overwhelmed, uneqipped to diagnose and treat us.  Together is the only way we have a chance.

Last year we raised over $12,000 and donated it to the PTEN Foundation ( and the Global Genes Project (  This year we hope to exceed $20,000 in donations.

We have brought in Bob Jackson, a performer from Walt Disney World.  He will be flying up to entertain our guests.  Our whole family LOVES Bob, but Meghan especially will not hear of celebrating a birthday until Bob sings to her.  We’ve spent her last 8 birthdays at Disney.

Here is a youtube video that is a great indicator of the FUN time Bob brings!

We have lined up sound with Partners in Sound, and we have Balloon Charlie returning to also help entertain the children.

We have established a children’s menu in hopes that families can enjoy the afternoon out together.

There will be raffles and lots of laughing.

There will be comfortable JEANS and good friends.

We are setting up a facebook group called Jeans for Rare Genes 2016 Staten Island, and we encourage you to join.

We have tickets to the event available through Jeans For Rare Genes 2 – Tickets and Donations link

Meghan is living life as a 12 year old who just happens to have had 15 surgeries.  She is a 12 year old who just happens to have a Rare Disease.  She is a 12 year old who realizes that as challenging as life is, so many others suffer worse.  She is my hero.  She is MY role model.

Together we will make Jeans for Rare Genes a thrilling success.  Hope to see you there!

Time with

Time with “BOB” our favorite entertainer…

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.


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.


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.


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.


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.


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


 (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.  
view from the top
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.
cs lewis hardship
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!


“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 … Continue reading

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….


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.


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.


Do What You Love

It was almost 8:40 last night as I drove down Grymes Hill with Meghan.  She hadn’t been home since we left for school at 7:20 that morning. She was facing a shower, dinner, homework, and a later than normal bedtime.  She had spent the afternoon registering for her after school drama program, and had spent the last two and a quarter hours in some combination of intense exercise- on land and in the water.  She was exhausted and it was evident in her face. But, not it her voice or her mannerisms.

“I know I’ve got you running all over the place Mom, and I know it’s a lot of hours.  But, I have to tell you that I LOVE it.”

I couldn’t help but smile in spite of myself. We all want for our children to do what they love. And here she was; registered for drama, swimming 4 days a week, pushing the herself at school, enjoying church youth group, and planning a fundraiser for February.

She feels rotten. A lot. But she pushes. And I have to believe that is how we have to live this syndrome – this life.  Maybe I’m a good influence after all.

She plays in pain. Constantly.

She is always recovering from or anticipating something. But instead of waiting for the storm to pass…

She’s clearly dancing in the rain.

We have our spats. We’re supposed to. But, we balance each other too.

We keep each other motivated. We keep each other grounded.  Her diagnosis still makes me physically ill.  But, it does not, can not, and will not define her. I’m convinced.
Do what you love I tell her. Do what makes you happy. And she does.

And I do too. Watching her for hours, on the bench, in the basement by the pool makes me happy. Watching her on stage makes me happy. Watching her persevere makes me proud.

We will do this- together. We are BEATINGCOWDENS.