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.
hope-despair
           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.

Rumi-On-Silence
           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.
Ultrasound_Machine
           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.
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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).

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           The ride home involved some of the toughest questions I’ve ever had to answer.
truth
           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.

We remain BEATINGCOWDENS!

(This blog, like all other ones of a personal nature, was approved by Meghan.)
AND WHILE MEGHAN CONTINUES TO DESIRE THE REAL STORY BE TOLD, PLEASE FAMILY AND FRIENDS, RESPECT HER “CODE OF SILENCE.”  SHE WILL TALK IF SHE WANTS TO.
IF YOU ARE ABLE, WE WOULD LOVE TO HAVE YOU JOIN US AT THE 2ND ANNUAL “JEANS FOR RARE GENES” FUNDRAISER.  A BRIANCHILD OF MEGHAN ALL PROCEEDS BENEFIT THE PTEN FOUNDATION AND THE GLOBAL GENES PROJECT.  JUST CLICK THE LINK BELOW.

https://www.eventbrite.com/e/jeans-for-rare-genes-2-tickets-19343557100?aff=eac2

A Lesson in Brave

brave4

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.

brave2

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

Love you my girl,

Mom

brave1

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.

O22lQ

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.

onthego

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.

organize

 

“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 (www.PTENfoundation.org) and the Global Genes Project (www.GlobalGenes.org).  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…