“… Turn on the Light!” -Albus Dumbledore (J.K. Rowling)

Last week my daughter pulled on a shirt before we headed out to the doctor for the umpteenth time this summer.  I didn’t think much of it at first.  I was grateful she was dressed and pulled together, and ready without event.  As a matter of fact, I was in full on grown up mode, rushing her almost 5’8″ frame and her crutches along to get us prepared for the obligatory ridiculous traffic as we traveled what seems to be the longest 30 miles ever.

I don’t think I even read the shirt until we were in the waiting room a few hours later.

I had read the Harry Potter series as each book came out – beginning as a 5th grade teacher more than 20 years ago.  My daughter enjoyed the series in its entirety in a brief period during her year in second grade.  I enjoyed the books, each one, but it took a reread or two to analyze things on a deeper level for me.  Dumbledore, the wise guide had an infinite amount of wisdom to offer.

Whether she realized it or not, my girl was sending a message that morning – to both of us.  There is an ongoing battle, here, and I suspect in many lives, to live the days as they come.  We try to “get out of our own way” and “our own head” as the case may be.  And it is not easy.  When we look further ahead than the day, sometimes even the hour, or moment, it is easy to get swallowed up.  The darkness comes hard and fast.  Too many appointments, too much worry, too many “what ifs,”  too much time wasted, too many plans unfulfilled.  No one likes the dark.

So don’t stay there.  Turn on the light.

Thank you J.K. Rowling, for giving us Albus Dumbledore.

That appointment Tuesday, it wasn’t great.  There are still no real answers.  There is swelling on the knee.  There is pain.  There was confusion from the surgeon.  He decided we had rested the knee.  Now, it was time to add two medications to treat the knee, a neoprene sleeve for swim, and PT back in the equation.  For 2 weeks we will move it and see if that helps.  Nothing more than educated guesswork.

I hate it when we have to guess.  But, I am grateful for a surgeon willing to logically troubleshoot.  We visit him again in 2 weeks.  He is confused, but he is smart.  And he will not quit.

So with a surgeon who made the choice to keep working on it – my girl did the same.  Every day we have choices to make… all day… every day.  Those choices shape and mold us.

My daughter was to be part of a beloved theater group these first two weeks of July.  Some of the most compassionate, talented and caring young people are in that group, guided by adults that are not afraid to give everything they have for the betterment of the children in their charge.  Last year, she had arguably one of the best experiences of her life, and when the word came that she could not participate, that the knee was not prepared for that amount of standing – she was crushed.  But, being who they are, the staff, and the students alike not only allowed her, but welcomed her to be with them during rehearsals.  As we watched two amazing performances of “Aladdin Jr.” on Friday night, I know she wished to be on the stage, but the pure joy of excitement for the success of these children – her peers- was evident.

She could have sat home and sulked.  They could have said she could not come.  Instead, the best possible outcome came from unfortunate circumstances.  Another major life lesson.  Executed flawlessly.

My daughter has dreams.  Big dreams.  She aspires to be a better human, and to assist those who struggle.  She wants to learn her voice, and sing to the best of her ability.  She desires to perform, on stage, often.  She seeks venues for community outreach and has goals to raise awareness and funds to cure PTEN Mutations like our Cowden’s Syndrome, and other rare diseases.  She strives to be an athlete.  The same thrill of competition that creates great anxiety, lights a fire deep in her soul.  She also has hopes, standards, and expectations for herself.  She actually, most days, can do a lot of the parenting work without me.  But, sometimes when those dreams and goals are forced to pause, and rest for whatever issue is going after the body at that time, its nice to remember the words of Dumbledore, “It does not do to dwell on dreams and forget to live.  Remember that.”


Exact, precise language.  That is how my girl likes it.  We sometimes kid that she will be an attorney.  At the very least, an advocate for herself, and maybe others.  There is little gray area with Meghan.  She likes people who are kind.  She does not like people who are not.  End of story.

Or is it?  In this age of adolescence there are times when lines are clear, and times when they are blurry.  Emotions run high.  There are times when things are said, and done that are deliberate, and mean and awful, and other times where things FEEL deliberate and mean and awful where that was not the intention.

That changes things for the speaker, but rarely for the recipient.  With intent being often left to the interpretation of the recipient,  words can cut more sharply than a sword, and pierce the soul and the spirit.  Words hold great power.

The absence of words, those kind sentiments, thought, but never spoken, can injure as well.

My girl is far from perfect.  I myself am far from perfect.  We have many conversations between ourselves about the power of words.  Sometimes we hurt each other’s feelings.  Usually we talk it through.  Our relationship invariably gets stronger.

That’s because we speak.  And we hear.  So many times when words have hurt, a conversation could clarify so much.  An honest reflection that not a single one of us is perfect in our speech or actions is invaluable for growth.  Friendships grow, not over text messages through an iPhone screen, or photo exchanges… friendships grow when we take the time to talk, and laugh, and listen and hear and care.

And, perhaps many times, when you are lonely or simply alone, those are the times words, or their absence, can hold the greatest power.

Nature vs. Nurture.

An especially complex conversation in light of genetic discoveries happening every day.

In this house my daughter, although she first learned of it as she turned 8, was born with Cowden’s Syndrome- a PTEN Mutation leading to a high incidence of benign and malignant tumor growth.  She was born with this condition, because I was born with this condition.  That statistics and numbers are real.  They are hard core.  They are disturbing.

A 2012 article about PTEN related cancer risks.

However, because we are BORN with this Syndrome, it does not mean we will develop every possible manifestation.  We have AVMs and thyroid issues, and lipomas, but of yet, no colon issues at all.  I had breast cancer, early stage.  So did my mom who is not a PTEN patient.  We have large head size, but not autism.  You get the idea.

I believe we are born with certain things.  I believe that Meghan and I were born with Cowden’s Syndrome, and I even have theories about its origin.

I also believe that EVERYONE has something.  We are either born with it, or it develops.  Whether it is a physical ailment, or an unfortunate circumstance, there are forces affecting each of us.

Life is not smooth.  But within life there are choices.  Every day there are choices.

Choose kindness.

Choose compassion.

Choose love.

Choose forgiveness.

Choose happiness.

Choose to find your “Never Give UP.”

Choose to trust.

Choose to take risks.

Choose to care.

Choose to push yourself.

Choose to believe you can.

Knowing, that sometimes those choices will hurt.  Sometimes they will leave you angry or even furious.

Know in your heart that those are the only choices.

As you “grow to be…” it is those choices that will help you navigate the path to be the very best version of yourself.

Some people go their whole lives and never meet their hero.  I gave birth to mine, and her stamina and drive continue to inspire me daily.

#beatingcowdens

Relax, Nothing is Under (My) Control

Today I  dropped my daughter’s iPad.  Down a flight of stairs.  With no case.  I’ve never seen quite so many pieces on a screen.  But, it still turns on.  And somehow we all managed to remain calm.  My husband set the appointment at Apple for Weds. night.  Yes, we have “Apple Protect.”  Yes, I know there may be a deductible.  And, while I called myself several names, I was most impressed that all three of us remained very calm.

Maybe we are learning.

Relax

NOTHING is under control really, except how you handle the things that are out of control.

Yesterday I had the dog to the vet.  In a little under a year since we rescued her, she has ballooned from 42 pounds to 65.  I guess she feels content in my house.  We must be doing something right.  There was this rash on her belly.  And $300 later, with a shot of antibiotics, some antihistamines, and this cone on her head – it’ll be ok.

April cone

Except in the middle of the night.  Then she needs her Mom to love her cause she can’t get comfortable.  But, hey, really sleep is overrated.

On Thursday we went to see the ENT.  He checks Meghan periodically since the hospitalization 18  months ago to gauge how her reflux is affecting her throat.  It was a bit redder than usual this time.  So, we juggled a few medicines and left with directions to find a GI.  Easier said than done.  Our last one was fantastic, but she took a break from practicing, and our local options are less than fantastic.  So we will seek, and hopefully find…

On Wednesday we had the 2 week follow-up from the biopsy.  We left with a script for progesterone which is apparently our only option.  It’s necessary to slow the growth of those precancerous cells, and hopefully get them to go away.  Verified with the head PTEN researcher in Cleveland, through my local geneticist.  I hate hormones.   Hopefully she tolerates it.  Hopefully the cells behave themselves.  Three month follow-up, then we schedule the next biopsy.  She needs another biopsy so we can have a “clean” one.  That’ll be in June.  Something to look forward to.

On Wednesday after the doctor, Meghan and I took the train from downtown to Times Square to see Daddy at work.  This is truly one of the highlights of her year and there was no way we were missing it!

NYE ball 2016

Favorite Family Picture! Wearing our "NEVER GIVE UP!" thegsf.org
Favorite Family Picture!
Wearing our “NEVER GIVE UP!” thegsf.org

On Tuesday we stayed home.  She missed play practice.  She was recovering.

Monday had started out full of energy – with a huge nail in my new tire.  Thankfully the car has warning lights to tell me when the pressure is low, and thankfully I got up early, because soon after I got home from getting it fixed, she woke up.  In pain.  We ended up spending Monday in the Emergency room at NYU.  All told about 8 hours, a CT scan, a chest X-ray and blood tests, they found an elevated WBC, and free-floating abdominal fluid.  The doctor said it’s likely a cyst burst.  She was vomiting so badly that morning I never knew WHAT had hit her.  Just something hard.  The fluid, in my very sensitive to her body, girl, was likely causing the severe pain – just being there.

 

One LAST IV for 2015
One LAST IV for 2015!

Maybe it was triggered by Sunday’s Swim Practice at the Long Course (50M) pool on Long Island.  Maybe not.  We’ll never know.

Christmas seems like only a blur.  Mom had it this year, a kind respite for me.  Some time spent with the family.  Some time to just be together.  It was perfect.  And I am so grateful.

 

My Family 2015
My Family 2015
My Sisters 2015
My Sisters 2015
Meghan with her Great-Grandparents 2015
Meghan with her Great-Grandparents 2015

The week has been wild, and I guess that’s why I’ve been quiet.  But, I am proud to say we have laughed despite the chaos.  I can’t think of a day this week I haven’t laughed so hard I cried.

NOTHING is under control.  At least not under MY control.  And I am going to TRY really hard to be more OK with that.

The schedule for 2016 will not lighten up even a bit.  I have an ultrasound Saturday, Meghan has an MRI on the 14th and the knee doctor on the 25th.  It will not slow down.  I must stay organized, and healthy, and focused.  I must continue to eat well and exercise.

Most importantly I must laugh.  Often.  With my family.  With my friends.  The adventures will continue.  But

IMG_5580

Happy New Year to all!

NYE ball 2016c