“… 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

A Perfect Storm

 

Sitting, sopping wet, in the middle of the ocean, in your small row boat.  Your feet are wet.  Your fingers are wrinkled.  You are cold, exhausted, and often frightened.  There is no access to the weather channel.  Your connections to the real world have all but vanished.  You focus every ounce of your strength on keeping the boat afloat.

You try to maintain a sense of calm, but your insides are turning worse than after a serving of spoiled mayonnaise at a summer barbecue.

There are moments when you think.  Hope.  Pray.  That it will settle down.  There are moments when you dream of enough sunshine to shed your wet clothes and warm and dry yourself.  There are moments when you can almost see what appears to be a friendly ship in the distance.  And in those fleeting moments you even remember what it felt like to socialize, to chat, and to laugh – about every day life.

Your faith reminds you that Jesus is in the back of that boat.  You know better than to let your insecurities wake Him.  You know in your core that you are loved, and protected.  

And then another wave crashes over the side.  You can not put your hand on the oar.  You lock eyes with your husband in front of you – always with you.  You put a hand on your girl, sopping wet beside you.  You strengthen your resolve.  

I have been fading out of touch these last few months.

I love writing.  It is my therapy and my release.  It clears my mind and cleanses my soul.  Except there is a balancing act to be had -tenuously protecting privacy while fulfilling what we believe is our calling to share a raw, honest view of our lives “Beating Cowdens.”It is hard to realize breaks in time.  Things blend together so readily it is hard to discern where one event starts and another stops.  There is only rarely a pause between medical appointments, some for the same issues, some for new ones, and others for maintenance.  Some appointments are mine, and some belong to Meghan.  All but a few require hours and hours of travel.  It safe to say they cost us on average 5 hours a day.  But, those 5 hours are not of my choosing.  I can’t say, decide to get up at 5 – deal with the appointment and be ready to start the day at 10.  That’s just not how it works.  Most are scheduled somewhere between 10 and 3.  That means by the time we get home, there isn’t much time to do anything.  Or, we spend the day waiting to go – so there isn’t much to get done.  There are no summer day trips planned.  Making plans to catch up with friends is something we avoid – because we so often have to cancel.  The cycle continues.  There is just getting by.  And some dreams that maybe we can get to the beach one day this summer…

Somewhere early this year Meghan started to be done with it all.  This is not an easy place to be in by any means.  She is a month shy of 14, and this is her journey for the REST of her life.  Teenage years are nothing most of us would want to revisit.  The extra complications of finding your way amidst a chronic sense of isolation (the knee precludes too much walking, it prevents basic sports games most of the time, it leaves the competitor side-lined too much, the allergies mean the food has to be different, the pain is unusual and constant and managed in some “unorthodox” ways, the number of times she has to say “no” because she has an appointment, an ER visit, or something else medical is astounding and limits the invitations, ETC., ETC…) coupled with an understandably defensive posture, and a desire to just BE, can make for some lonely times.

 

Her sleep patterns went off the charts some time in February.  My sleeper just couldn’t fall asleep.  She’d lay still for hours.  Her pattern was restless and fitful.  I watched my girl pull away from her swimming.  I fought to push her.  Even after her best meet ever in March – I could no  longer get her up to a morning practice.

Meanwhile, I never made connections that are so clear now.  In January we were released from the Interventional Radiologist who had completed the 5 embolizations over 6 years on the AVM in her right knee.  He released us to the care of the orthopedist who had already performed an arthroscopic lateral release in 2015 to help shift her patella into place.  It had begun to slide as a result of residual damage from small amounts of lingering blood in the knee.  By early this year the warning signs had begun to develop that the knee was off.

A visit to the orthopedist in February confirmed what Meghan undoubtedly knew.  He offered her the chance to try to intervene conservatively and put a brace on to hold the patella in place.  Maybe it could “convince it” to move on its own…

She took it in stride, like always.  We bought leggings to accommodate the giant addition to her thin frame.  She dug in and pressed on.

While all this was going on the chronic congestion that had begun in November worsened.  The ENT noted swelling, but called it allergies, the obvious choice this season.  There was a nasal spray added, and a week of a decongestant.

Attendance in school started to be a struggle.  There was fatigue.  Low grade infections.  There was pain.  So much pain.

The chiropractor visits became more frequent.  The leg length discrepancy made more noticeable by the limping to accommodate the brace on the shifted knee cap.

My surgery in March helped nothing.  There was so much vocal rest required it tossed us all on edge more than normal.

Swim practice was lessening.  Focusing on school was a chore.  Sleep was becoming near impossible.

The breathing worsened.  We justified the “worst allergy season ever.”  Her voice started to feel the effects of this chronic congestion.

In April the inevitable was spoken.  The knee would need a repeat of the 2015 arthroscopic lateral release.  We wanted to schedule it immediately.  The first available day was her the opening night of her school play, a play she had earned the lead in.  The next opening was almost a month later on May 20th.  We would have to wait.

The pain increased.  The frustration increased.  The sleep, and subsequently the desire to swim decreased.

The “Coaches Award” at the swim dinner made her feel honored.  She respects her coach so much.  But, she couldn’t reignite the fire.

The surgery in May went well, even though I had worried with the increased congestion that they could not put her under anesthesia.  But, it was fine.  She went through the 2 hours like a seasoned veteran.  That made number 18.

Rehab was tough.  The pain was significant.  But, it faded gradually.  Our favorite PT began to work her magic.

She got around on crutches, figured it out and made it work.  Again.  Always.

She got off the crutches exactly in time for 8th grade prom.

 

She was healing.  Physically.

She made it back into the water.  She swam the 18th of June, and the 19th too.  She started to talk about it in a more positive way.  The 20th was awards night for 8th grade.

My 8th grader was named Salutatorian for a graduating class of almost 400.  She received several academic awards that night. I sat in the auditorium with the last few months, and years running through my mind.  People knew some, but no one, not even I knew ALL of what it took to be her, every day.  And here she was, not only doing it, but excelling at it.  It was a good night.

Until she came home, and put up her feet.  And there, on the side of her surgical leg was a 4cm x 6cm mass, with rapidly increasing swelling.  Breathing, we strategized.

We took the crutches back out.  I stayed up most of the night making sure there was no bleed on the knee.  I sent her to school the next day to get her cap and gown and yearbook “like everyone else.”

Then we headed to the surgeon.  His nurse practitioner sent us to the ER.  They could not get their acts together and after 7 hours discharged her on crutches with a script for an MRI.

 And an IV that went unused…

She was to be “minimal weight bearing as tolerated.”  They wanted her back at the doctor that Friday.  I finally spoke up and said no.  She was going to her graduation Friday – NOT tainted by a medical appointment.  We settled on Tuesday.

However, with no answer, she was to graduate on crutches.  So, a friend suggested if she had to use them, she should “own” them.  My husband spray painted them white.

Sunday we drove to Long Island for that MRI.  The one I knew they would not do locally.  30 miles.  2 hours and 15 minutes home.  We caught up with some friends that day.  Good thing.  We needed them so badly.

As she was in the MRI machine for her knee she told me something was “blocking” her nose inside her head.  If you’re a Cowden’s Mom – you just went to tumor as fast as I did.  My head spun.

Monday the ENT was able to ease that worry.  He told us it was a mass of infection.  That likely she had had a severe sinus infection for 8-10 weeks.  He anticipated 14-28 days on biaxin to get after it.  That was alongside a short course of oral prednisone.  He nose was so inflamed there was almost no air passing.

A sinus infection usually has me out of commission in about 3 days.  I just shake my head in awe sometimes.

Tuesday the 27th we trekked out to the surgeon again.  The MRI showed the mass to be a huge fluid filled pocket.  There is also fluid all through the knee joint.  He looked, and looked.  He has done many surgeries.  He is skilled.  He shook his head and finally told us he did not understand.  He had “never” seen this before.  And now we had to wait for her knee to tell us what to do next.

Cancel camp.  No Drama Camp she had loved so much.

Postpone PT indefinitely.

No swim practice yet.

And there we were – facing another summer…

But somehow, all of this seemed to weave together.  The perfect storm.  The knee, the sinuses, the sleeplessness, the fatigue, the low-grade illnesses, the sinus infection…

Somewhere through all this we spent a few visits with a brilliant doctor who diagnosed Post Traumatic Stress Disorder.  PTSD.  Like with the soldiers, or other trauma victims.  “Secondary to significant medical trauma” she said.

It all made sense, except the “post.”  There is nothing really “post” about this ongoing scenario.

That, and the Salutatorian thing.  As impressed as I am – I am still in awe.

The journey continues, and we will above all things remain…

#beatingcowdens

It’s Complicated…

I was in the stairwell close to the 5th floor of the nursing home where my grandmother resides when the phone rang.  I paused, startled by the ring, and trying to suppress my slightly out of shape panting before I acknowledged the call clearly coming from the medical office we had visited earlier that day.

It was Tuesday the 11th.  “Spring Break” had begun Saturday the 8th.  Early that Saturday morning I had left on a road trip alone to the Marine Corps Base in Quantico where I had the privilege of watching a Marine who served with my Dad receive the Bronze Star with Valor – almost 50 years after the day it was earned.  It was a whirlwind trip – 5 hours down that morning, and a busy, fun, emotional day that lasted well past midnight.  I returned to Staten Island by 12:30 PM Sunday, in time to catch Meghan’s 1 PM Swim meet.  Felix took “off” the workweek and spent Monday and Tuesday overseeing the installation of air conditioning in our house.  It was 24 hours well spent – 12 each day- but the inevitable trail of dust and dirt needed to be tended to as well.  So, I had headed to this appointment alone with Meghan earlier in the day.  Now I was trying to visit with Grandma, although she’s often unsure I was ever there… I still know.

I took a deep breath before I answered.

A lovely young woman, whose cheery voice caused me to immediately forget her name asked, “Is this Meghan’s mother?”  That is my favorite title- depending on whose asking.  I tried my best to muster and equally cheery, “Yes, it is.”

“Oh, good.  I was asked to set up Meghan’s surgical date.”

Sigh,  Even though I knew the call was coming – it doesn’t get easier.  I also knew I had very specific directions from Meghan that I was to “get it done as fast as possible.”

“How soon can we do this?”  I asked.

“My first available is May 11th.”

“REALLY?  A whole month?”  I thought of the anticipation and the anxiety that would build as the pain increased.  Then I realized something worse.  May 11th is opening night for “Bye Bye Birdie,” her school play.  Cast as Rosie she’s been preparing forever.  There was just no way.  I swallowed hard.

“What if I can’t take that date?”  I held my breath,

Cheery changed her tune.  I’m sure she thought I was being difficult.  I tried to explain.  No luck.

“The next date is May 20th, then you’re into June.”

I was playing out the June calendar in my brain.  ComicCon with Dad, school dance, graduation, West Virginia… forget about the Long Course Swim Season and the 2 meets we knew she’d have to scratch out of, and the last CYO Swim meet she’d ever be eligible for- that was out too.

There was never going to be a good time to be out of commission.

Deep breath.  “Any chance you’ll have cancellations?”

“No.”

“Ok then.  May 20th it is.”

And after telling me I’d need to give up a day the week before for formal pre-surgical testing, which is a first for us, as she grows up, I didn’t bother to explain I’d just missed 16 days of work for vocal cord surgery.  I just said, “Thank you.”

Meghan’s relationship with her right knee is complicated.  It started giving her trouble before she could talk, as her first babysitter will attest to hours rubbing that knee.  As she grew, it got worse.  It always seemed to bother her.  She pushed, and pushed.  Eventually it was hot to the touch and pulsating.  The diagnosis came in 2008, after multiple mis-diagnoses, including “her pants are too tight.”  Finally, a team at Sloan Kettering, adept at ruling out cancer, was able to diagnose a high flow arteriovenous malformation (AVM) in that knee.  We were sent off to Interventional Radiology at Lenox Hill, where the doctor confidently told us he could eliminate this AVM in “one procedure – 2 tops.”  Between December of 2009 and February of 2012 there were 4 embolizations on that knee.

The doctor seemed almost relieved when she was diagnosed with Cowden’s Syndrome in the fall of 2011.  It seemed as if he felt better about himself, like there was another explanation to justify why the darn thing just wouldn’t quit.  By that point she was being run through the surgical mill, so we welcomed the 2 and a half years of monitoring.  It seemed to stabilize.

But, as everything overlaps and one thing leads to another, there was pain.  There was pain that she was repeatedly told should not be there.  Yet, no matter what they said, the pain was there, and it was consistent, and it was real.  She pressed through.  She stopped soccer and tried dance.  The knee was cut out for neither.  She found her way into the pool in the spring of 2013.

By that fall we had signed her up for a 12 month competitive swim team, and things were looking up.  She swam a full year, getting stronger, becoming more confident, and finally feeling like an athlete.

There were other surgeries in between.  And there was that knee pain.She had been prescribed Celebrex to substitute for the Advil that was being consumed in clearly excessive quantity to allow her to function.  And the Celebrex was wonderful.  Until it wasn’t.

And in May of 2014, two months after a complete thyroidectomy (thank you Cowden’s) she lay in the hospital in severe GI distress.  It took a week to stabilize her.  I was scared.  Out went the Celebrex, fried food, and a whole host of other goodies.

But, little did I realize, that Celebrex was likely the reason the AVM had quieted down.  Apparently the drug has properties that work on blood flow.  A few months off of the Celebrex and all hell broke loose.  Literally.  It was November of 2014, the Tuesday night before Thanksgiving when she collapsed outside of swim practice, unable to walk.  Our travels that night took us directly to Lenox Hill ER because we were sure it was the AVM in action again.

Proven right when the surgeon showed up early the next morning giving me a surgical time for her, they drained 50ccs of blood from the knee that day.

Blood and bone and tissue are not friendly.  It’s like neighbors invading space.  You can tolerate it for a while, but it doesn’t take long before the damage is irreparable.  It became evident there was structural damage beginning because the blood had begun to wear things away and allow the knee cap to move to places it did not belong.

We were advised to consult with an orthopedist, and we did.  He wanted a coordinated arthroscopy where both he and the interventional radiologist would be in the OR together.  It became an orthopedic procedure.  The patella was moved back where it belonged.  Things were cleaned out.  Recovery was smooth relative to the emobolizations.  We were told it would last a few years.

In January 2017 we were pretty much released from interventional radiology.  We were told the AVM seemed quiet and we need only bring her back if she becomes symptomatic again.  In February the knee pain started again.  Slow, but steady, it kept growing in duration and consistency.  At a routine visit the orthopedist mentioned the potential need for another arthroscopy.  He reviewed the January MRI and showed us where the patella had shifted again.  He said her growth plates were “wide open” (a scary thought at over 5’7″) and that this would continue to be an issue at least until she finishes growing.  He offered her a “patella stabilizing brace” for 6 weeks, to see if it would do the job he wanted done.

Tuesday the 11th he looked at her knee for less than 2 minutes before he started making plans for the surgery.  He explained to us what he needed to cut and move, and why it was time to get it done.  We had the necessary conversations about length of time out of the pool, and other restrictions.  We left, quiet and resolved.  The only thing she asked me was to just get it done as soon as possible.

So when the phone rang in the hall last Tuesday afternoon, I felt sucker-punched, again.  Regardless of how many times I tell myself, and her, that it “could be worse” and we have to “look at the bright side,” the reality is that sometimes it sucks.  And that’s just the frank honest truth.  Scheduling your 7th knee surgery in 13.5 years is just not ok, not even a bit.  I was grateful for Grandma, and the ability to be distracted for a bit.  Without her memory, she is just real.  That was a good day.  And that day she loved having me.  I cherished the visit.

I spent Wednesday in the grocery shopping marathon, and Wednesday night at swim.

Thursday was for an extensive blood draw for Meghan and a triple dermatologist appointment.  Meghan headed to play practice, and I traveled to my vocal follow up in NYC.

My report was adequate, but not what I had hoped for.  Still swelling.  Still be very careful.  Still rest when you can.  Still exercise caution when you get back into your program on the 19th.

Friday was for vocal therapy.  And for trying to put the house back together.  And for painting upstairs, and washing the dist off the curtains, and visiting my in-laws.  It was our 17th Anniversary.  We sneaked an hour or two for dinner together…

Saturday was voice lessons, and…

Somehow it bled into Sunday, and Easter and some time with family.  But, it was immediately back to the painting.

By Monday I was waiting for the blood results, hoping to catch a call from one of the three doctors on the order.  We hit the orthodontist to have the retainer tightened, and a few things at Costco before it was time for swim…

I am focusing on the sunny days.  I am trying to find some time within the chaos to be still.

I asked Meghan why she was so uptight the other day.  It really was a stupid question.  This was the grossly abbreviated version of ONE aspect of her real life.

And tomorrow she will have to practice smiling and responding to the question “How was your break?”  in the only socially acceptable way.  “It was fine, how about you?”

Fine… it has so many meanings.  We don’t want to bring people down all the time.  It gets hard to have a conversation sometimes though.  Felix and I realized in the years since we’re married, one of us has been in an operating room somewhere in the neighborhood of 34 times.  A lot of our days are spent recovering.  Physically, mentally and emotionally recovering.  Fighting financially against incorrect billing, and generally trying to breathe.

I’ve said it before and I’ll say it again, we would not trade our lives for anyone’s.  However, just like in anyone’s life, some days are better than others.

I’m anxious for a vacation not peppered with appointments and surgeries.

Until then, maybe I should teach Meghan to answer “How was your vacation?” with “It’s complicated…”

#beatingcowdens

Deep Cleanse

I had a list of things to accomplish while I recover from my vocal cord surgery on 3/3.  I have been unable to work, preserving my voice for exercises given by my therapist, and brief conversation.  But, aside from the inconvenience of not speaking, I have felt pretty well.

That left me with a little time to get a few things done.

I could not push it physically, but I sorted papers, shredded, sent Emails that were overdue, and generally handled things that had fallen by the wayside during the busy nature of life.

I discovered, much to my disappointment, that my attention span for reading has decreased exponentially since spending so much time at a computer screen these last few years.  I vowed to get to work on that.

I also discovered that I have an account on the family’s “Netflix”  and I learned how to sit still long enough to binge watch some “Law and Order.”

There was time over these three weeks for some honest self-reflection as well.

Sometimes it’s painful to put truth right in front of our own faces, but I had the time to do the work, so I went for it.  I already wrote about isolation,  and I had some time to think more deeply about what role my own actions play in that.  I was able to reconcile that some of it is unavoidable, and some can be mended by me.  Balance.  I’m on it.

I also took a hard look at my own emotions and how they affect my house.

It is so easy to get “stuck” in the role of caregiver.  It is so easy to live a task oriented existence, making sure things get done, and arranging the logistics of life.  We may only have one child, but you add into the equation, two of us with a genetic disorder that involves countless appointments, surgeries, therapy and follow-ups things get dicey quickly. Add in that every appointment in NYC is a MINIMUM of 4 hours, and sometimes 6 or more, and the billing that comes with these appointments is at least a part-time job on its own, well, your head can spin.  Then, you think about the issues that surround friends and family, illness, disease, financial hardship, emotional distress, and your heart can hurt.  When you join that with “regular” stuff, like 2 working parents, a scholar, athlete, theater buff kid, food sensitivities, prescription medication, and anxiety all around – well, it can easily become all-consuming.  And it did.

I sat in my office one day, looked around and realized I was unhappy.  That was a tough realization.

I am not unhappy with my husband, or my daughter, or the countless blessings in our life.  I just became so consumed with getting things done that I forgot myself.  Literally.

Sometimes its good to reflect.  It’s the only way to get things done.

Last week my sister sent me a box of essential oils.  I was skeptical.  I bought a diffuser.  I feel like peppermint in the air while I work is good for my soul.  So is trying something new.

Tuesday I went to Kohl’s. A quiet activity easily done alone.  I felt the tension start to release.  I picked up a few things for me and for the house.  I went out because I WANTED to.

Something amazing happened Tuesday.  My husband and my daughter both remarked that I looked happy.  I had a story to relay at dinner that was about me.  The mood in the house was lighter.

Wednesday I took a nap in the middle of the day.  Because I could.  Again, I found myself with a little less pressure in my shoulders.

That night I promised myself and my family, no matter how busy things got I would find a way to spend 15-30 minutes every day on SOMETHING I could say truly made ME happy.

I’m a work in progress.

I chose to do a deep cleanse on Thursday and Friday.  I was working on my mind, but I had to bring my body along.  It had been too long.  I had gotten a little lazy in my habits and in my routines.  I have this incredible nutritional system at my fingertips and in my home, and sometimes I forget to use it to its full potential.

I woke up this morning having released 5.1 pounds of junk.  I started the day with a protein shake full of strawberries.  I shopped with my girl this morning.  Then, I got to listen to her singing lesson.  Now, they watch a movie while I get to write.  Then, my little family is off to dinner together.

This week the spring plants that sprouted on 3/3 started to really grow.

The caterpillars that came in on 3/2 have all become butterflies today.

Maybe we all used the same period to try to transform a little.  Nothing like a few new butterflies to remind you about new beginnings.

I am focused on this journey now.  I may falter along the way, but I will hold true.  This feels right.  This feels good.  And when I feel right and good, it is much easier to remain

#beatingcowdens

Light Through the Lens…

I think I blinked, and the calendar changed from October to December.  Some weeks I can do nothing more than plan day by day, because to look too far is overwhelming.  But, I “lost” the fall in a beautiful way.  I lost it shuffling my girl to places she loves to be, and helping her apply to high schools she is excited about.  Four years ago I could not have imagined she could keep this schedule.  She battles for it every day and I admire every ounce of her determination.  I take nothing for granted, and I know a huge “doctor cycle” is soon to be upon us.  Meghan’s appointments begin late this month.  Mine will overlap, likely culminating in vocal cord surgery.  But, for now, for this moment, I am grateful for this chaos.  The hint of “normalcy” is not to be left unappreciated.

Today though, I blocked out some time.  Today I needed some time to sit in my office and look around.  There are beautiful images on the walls of my office from New York City to Washington state – and places in between.  Each is carefully watermarked “Leon G. Thompson,” a process that took my husband countless hours.  There are thousands of such images on my laptop and several backup drives.  You may have no idea who “Leon G. Thompson” was, but I can tell you these pictures are more valuable to me than any you’d find in a museum.  Leon G. Thompson was my father, and these pictures are what he left behind on 12/4/13 when cancer snatched him from us far too soon.

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“A Few Good Men,” has been far more than a movie title in my life.  I was blessed to have 3 grandfathers that shaped who I am.  I am equally blessed to say I have had two fathers mold me into the woman I have become.  My Mom’s husband Ken came into our lives when I was a teenager, but he has been, and continues to be an unshakeable source of everything from “fun facts,” to computer tech, to house repair and all things in between.  There is a special place for a man who steps into a marriage with 2 teenage daughters in tow, treats them as his own from day one, and never skips a beat.

My father, well… let’s just say the early years were rocky.

What I know now, but I didn’t know then, clarifies a bunch.  Dad, a Vietnam veteran came home lost.  The earliest years are peppered with memories that don’t leave “the warm fuzzies.”  The years after that hold memories of fun visits.  Dad would come by sometimes.  There were movies, and visits to the park and the zoo.  There were restaurants, and exciting novelties.  But, there was not consistency.  There were chunks of empty time.  There was a lot of wondering.

Contact got more steady in the teenage years, especially after my brother was born.  There were more visits, and more phone calls.  But, history sometimes repeats itself, and there were years that faded away again.

Later, after high school, and probably after college too, there was more.  Maybe I was ready.  Maybe he was.  I’m not sure.  But, slowly and carefully, over years, a relationship began to form.  By the time I got married, I was able to dance with my Dad, (and Ken, and my Pop :-)) and I will cherish the memory forever.

After my daughter was born, he started showing up more.  And I liked it.

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Hard times came for Dad, and the restaurant industry finally failed him.  And that low for him, was the point our relationship became solid.  Nothing happens overnight, but he was here.  Close.  Interested.  Available.  He helped pick up Meghan.  He came to birthday parties, and dance recitals, and swim meets.  He came by for Father’s Day and even celebrated a birthday with us.

It was during that time that he first spoke the words I’d been waiting to hear since the second week of my Abnormal Psychology class in college.

“I have PTSD.  Do you know what that is?”

“Yep.  I know.  (and I exhaled a sigh I’d been holding in for years..) And it all gets better from here Dad.”

He was stunned.  He had no idea that his entire adult life spent making poor choices, ducking relationships, and often shying away from those who loved him most, were just a few of the symptoms of PTSD. (Post Traumatic Stress Disorder)  He couldn’t imagine that I had already pieced together that unspeakable horror encountered with his Marines in the jungles of Vietnam had impacted, to the point of changing, and really shaping his entire adult life.  13 months in that war, and not a day, a single day, ever went by without it influencing his thoughts and behavior.  I was able to pick up from a text-book the reasons why he had shied away from our relationship.  I was able to know in my heart that he couldn’t risk expressing his love, showing up, or being truly “present.”  But, in that moment, hat moment when he said it THAT is where I got him back.

I can’t say I remember the day.  And I may be wrong on the year too.  But, it was sometime around 2009.  Finally, he was working on his own healing.

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And he worked hard.

We spoke more regularly.  Once a week usually.  Sometimes it was his turn.  Most of the time it was mine.  As I struggled through raising a chronically ill child, he became my sounding board.  He was my confidant of all things.  He was where I went to bounce the tough decisions.  Because, life had left him a great listener.  Raising a child with a rare disease, means often having to make really tough choices alone.  When your disease affects only 1 in 200,000 people, experience with it is limited.  When Cowden’s Syndrome manifests differently in each of that small number of patients, including myself and my daughter, there is an even lower confidence interval with doctors who often just have no idea by no fault of their own.

It is hard to hear over and over again that a child is ill.  Especially, when it is your child, or your grandchild, or one you love so much.  I have had to make so many unorthodox medical decisions, that I often just needed someone to hear my thought process, and let me analyze, and over-analyze. I have gone against the doctors to trust an instinct that was strong in my mind and my heart.  Dad was the one who could hear it all out.  He heard me without speaking.  He listened attentively.  He offered advice only when I asked, and offered encouragement always.  These were not situations where I just needed my ego stroked.  These were tough conversations to have, and he never ever shied away from one.

He simply would bring me back to reality.  He’d ground me by telling me to use Meghan as my guide.  Check on her health, physically and emotionally.  Focus.  Trust my instincts.  Be able to correct wrong decisions whether they are mine or theirs.  Still now, three years later I find myself aching for those conversations.  She is stronger.  She is tougher.  She is amazing.  But, there are still so many battles to face and so many difficult decisions to make.  That’s when I retreat to my office.  I sit in his chair, and I look up at the path of snow in central park, or the Washington mountain top, or the waterfall, or the rainbow and I think.  I talk the conversation through as if he were here.  Because I know he is.  I just have to listen really carefully.

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Dad told me once that I understood PTSD because Meghan’s medical battles had left me some ways in a similar state to him.  When she was younger, and so sick, that perpetual fear of losing her, the hospitalizations, the surgeries, left me with a need to he “hyper” aware all the time.  While I could never profess to connect this to the horrors of war, he did.  And I think it allowed him to open up with some of his own stories.

Through those years I heard tales from his mouth I had never known.  I heard of battles, and losses and names of people, and places.  I listened so attentively.  Quietly.  As he had done for me.  Sometimes I even took pen and paper to write down his story.  Because I wanted to hang on every word.  Because you just never know.

I found out Dad was sick when I made that Friday night phone call in October 2013.  His voice sounded a little off and he told me he was in the ICU at the VA Hospital in Brooklyn.  When I asked him if anyone knew he said he wasn’t too sure.  But, he said, “now you do.”  And he laughed, as only he would at that moment.

I got to the hospital the next morning and we went through the details.  At that point no one knew anything.  Confused doctors was a topic we had spoken about at length.

The 10 weeks that followed were just a long blur.  There were about 4 weeks of me forcing his hand to allow me to take him back and forth to his appointments.  Sometime after that he admitted he couldn’t drive himself.  That was a tough day.  I had already called in my sister, and it was time to reach out to my brother in Texas.  Family meeting.  The “team” assembled.

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And through the some of the toughest weeks, I bonded in ways that can never be broken, with a sister I have always had, and a brother who I was getting to know better than I ever had.

Dad was admitted to the VA on Thanksgiving of 2013, and one week later, on December 4th, we were by his side when the angels came to free him.  No more suffering.  No more PTSD.  Pancreatic cancer at age 65.

I dialed his number for months after.  I still know it in my heart.

I spent the months after he died cleaning out his apartment.  Dad was not a man of many “things.”  His iPhone held no Email, and only one photo.  “Never want to put too much information in one place,” said the man who in his soul operated always with the mentality of a 19-year-old combat Marine.

As I cleaned I took every single scrap of paper he had ever written on and clipped them together.  I laminated them.  It was to be the only way we would ever “talk” again.  It is Dad’s quotes scattered through this piece.

He loved light.  And I guess for a man who had spent so much time fighting the darkness, his love for light made sense.

Dad was, to our family, and friends, a photographer.  “Tom” would have a camera around his neck at all times.  He took joy out of capturing happiness.  He took pleasure at photographing family events, and sharing his photos with everyone.  As we sorted through the pictures, in the months and year or so following his death, we saw some incredible images.  We sorted out the family shots from the scenery ones.  We put up a sharing site for all those family images in case anyone had never seen them.  And we protectively shielded his “scenery” images, and carefully watermarked them, and kept great pains to keep them off the internet.

At some point we will organize an art show in his memory.  We will print, and sell his treasures.  We will find a place to donate any profits that will honor his memory.  We will let the world see what he saw.  Dad used that camera lens to showcase the light.  To view the beauty in the world.  Consistently, when I look around I see “Light Through the Lens…” and in doing so I keep his memory alive.

Dad did not leave us rich with money, or objects.  He left us rich with visions and memories.  The former keeps you satiated for a little while.  The latter can keep you fueled forever.

The last gift Dad left for me, was one I did not see coming.  In the weeks preceding his death it had become apparent to me that there was a specific incident in Vietnam that clearly should have warranted him a Purple Heart.  I gathered data for him, presented the case, and even after denials came in, and he had passed, I kept fighting.

Holly, a treasure in Dad’s life and ours, had held onto a list of names and addresses from a Marine Corps Reunion they had attended many years prior.  I reached out to every Marine in that list, and if they were still alive, they reached back.  Over 20 of them.  45 years later.  I grew up knowing Dad had 7 brothers and a sister.  I had no idea of the Marine brothers scattered around the country.

I have had the pleasure of meeting many of them.  And this past summer I brought Meghan to meet a few too.

Alan was the first to answer my letter.  From West Virginia he called to tell me he remembered crossing time with Dad.  He researched the story I told him about the incident.  He found it totally credible, and helped me exhaust every option and every appeal to the Department of the Navy.  Ultimately that battle was lost on what I call a technicality, but by that time I had a friend and a confidant in Alan, previously a stranger.

My Dad, although not loyal to a particular church, by the time he died had a solid faith in God, forgiveness, and an afterlife.

I do not know the book this came from, but I found this among his clippings…

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My Dad in his passing, solidified my relationship with my sister, essentially “gave” me my brother who I had never really “known” but will NEVER let go of, AND, secured for me a confidant in Alan, and gave me the gift of loyalty that Marines save for their own and their families.

He left thousands of photos.  Snipits of his own words, and memories of times that we got it right.

I sometimes always wish that he would answer when I called him on the phone.  But, I know.  I know that he is flying free.  And I know, that while he needn’t be saddled with the cares of this world, that he checks in.  That he is nearby when I need him the most.

So when we are driving in the car and Meghan snaps a shot of a sunrise, or the light coming through the clouds in the sky.  When she sees the beauty of the world around her.  When she looks for the good. When she keeps her friends list short and neat, I see my Dad.  I feel him.  I know he’s right there for that moment.

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Courtesy of Meghan on a road trip to WV to meet the Marines.  Always being guided by the light…

Only when you love deeply do you feel great loss.  They all hurt.  The oldest to the newest.  I can not change the way I love.  When I love it is with my whole self.  Otherwise, why?

This one hurts differently because it took so long to get it right.  But, I rest with the gratitude that we did get it right.  And once you get it right, if it’s truly right, nothing before that matters anymore.

You may never know the strength you gave to help us remain

#Beatingcowdens

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Semper Fi Daddy, Always.

04/18/48- 12/4/13

Loved.  Missed.  Remembered forever.

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Default to Kindness

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Meghan loves to swim.  I mean, athletically it wasn’t where she started, but the knees.  Six surgeries on the right knee, and there was to be no more soccer, and no more dance.  After the 6th one, there was to be even no more breaststroke.  There is no gym class in school.  There is limited walking.  There is one foot, a size bigger than the other.  The “off sides” that that creates in her body can be quite painful.  But, the pool…

Oh, how my girl loves the pool.  She is an athlete.  She is a competitor.  And the pool allows her to be both of those things to the best of her ability.

For the 3rd time in the 4th year since joining swimming, this September brought a new coach for her, and a new group of teammates.  There was anxiety about the switch on so many levels.  But, as we always say, life has a funny way of working out.

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This coach is a perfect fit for her.  They practice hard, and often.  He is structured, and firm.  But he is compassionate, and constructive.  He watches.  There are sometimes 50 or more swimmers in the pool when he coaches, and I swear he does his best to make some comment to each of them every practice.  And, after they compete, his feedback always connects to practice.

And practice, for Meghan, has not been a problem.  While maintaining a “Pupil Path” account that no one could ever critique, and planning a major fundraiser, and looking for high schools, and managing doctors appointments, and a mom who doesn’t feel quite herself, this girl has, most weeks, attended practice, Monday, Thursday and Friday afternoon, as well as Tuesday, Friday, and Sunday morning.  Quite literally, swimming is good for her health.

Swimming can be a very solitary sport.  It takes a good deal of mental toughness to stare at a black line for hours.  Interactions with teammates on deck or during dryland (out of water training) are cherished.

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Even then, as the “new kid” in the group, you can sometimes wonder about the relationships.  Meghan has been very careful not to share too much of her Cowden’s story with these swimmers.  She wants to be viewed as one of them, and she is doing a good job holding her own, all by herself.

And then there was today.  We were at a meet and she was scheduled to swim the 200 yard butterfly.  If you swim, no explanation is needed.  If you don’t let me give you a frame of reference.  For the group she swam with today, 72 girls swam the 100 yard freestyle.  10 signed up to swim the 200 yard butterfly.  It is not an event for the faint of heart.

Meghan feared disappointing, herself, her coach. me.  She was scared out of her mind.  So scared that it was out of character.  Out of character for a child that has had 17 surgeries, and countless tests. ER visits, and hospitalizations.  She was that scared.

And as the race approached I watched helplessly from the stands as she began to unravel.  And I watched with a grateful heart as teammates picked her up and put her back together again.

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The one who I can only say was acting as my angel, talked her right onto the block.  It only took a second of my attempt to video the race to see that something was terribly wrong.  There sat her goggles, first mid face, then in her mouth occluding her breathing.  In butterfly you can not break stroke.  At the end of the first 50 she stopped.  She was done.

My heart sank, and ached for her.  I wanted to pick her up and hug her, and take her back to the rocking chair I used to use when she was a baby.  But she’s 13 now – so I could only watch.

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The official came to her and asked if she wanted to try again in the next heat.  There were 2 lanes open.  She said yes.  And as they placed her in one heat, her friend, my angel, came to the official and asked if Meghan could swim, “in the lane next to me.”  She said yes, and as Meghan barely got settled on the block, another teammate flagged the official to wait a moment.  Meghan’s goggles were still not on.

The start went fine this time.  The goggles stayed on.  And she did it.  The whole thing.

By the time she got to her last 2 laps, most of the other girls were finishing.  But, then there was more magic.  There was cheering, from her teammates and strangers alike.  There was a push for her to get finished, to press on, and to make it.  So, she did.

I think I cried the last two laps.  I was struck by this child of mine, her life, the adversity, and the stubbornness.  The ability to not give up.  The desire to be normal, and to succeed. And as she touched the wall her team mate, that same angel, swam right into her lane and gave her the biggest, most genuine hug.

She did it.

Not too shabby for the first time.  And more than one teammate whom she respects greatly told her they gave her credit for getting up and trying it again.  So did her coach.

Meghan isn’t the “cool” kid.  She sometimes struggles a little.  But, she remains true to herself at all times.

Today, she got to see the kindness in others.  It was pure.  It was genuine.  It was unsolicited.  It was the best kind.

13-18 year olds can be a tough group.  But these kids showed today that when they are left at their “default” setting, when they are alone and see soemone hurting, they will choose kindness and compassion.

She is asleep.  Tomorrow is another day of swimming.  But, those events won’t cause this angst.

Gratitude fills my heart, that once again even at the toughest moment, good shines through.

And as she said goodnight, she told me, “Next month, when I swim the 200 fly…”

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Endurance.  Persistence.  Stamina.

#beatingcowdens

 

Speechless

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Resting your voice is not like resting your knee, or your shoulder.  Resting your voice is more like resting your heart, or your lungs.

Something is kicking my butt.  And I’m not sure what it is, but I am so not in the mood anymore.

This has been one chaotic stretch.

FInally recovered, mostly from my way too soon implant exchange in August, and my broken toe 2 weeks after, I am battling with trouble in a place I least expected to find it.

This summer I heard, “vocal cord nodules” for the first time, after feeling somewhat hoarse since April.  I was quickly reassured by tons of people that these are “normal” and would resolve if I was careful.  The doctor didn’t say too much, besides directing me to begin vocal therapy and return in three months.

I knew enough to listen when I was told to start therapy, and I did.  Begrudgingly, and convinced it was bogus, I made my way to the recommended therapist.  We got in a few visits before school, and then had to switch to weekly as my schedule just wouldn’t allow more.

For about four sessions I felt utterly ridiculous.  Then I started to “get it.”

I struggled when I started work, and was told to purchase a “tour guide” microphone.  I did, and the small 20 amp speaker with its wireless microphone have been an incredible help.  Despite looking like a frustrated pop singer, I am able to talk longer, and with less strain.  I am learning to speak differently, and in ways that are often unnatural to me, all with the desired end result being to reduce the stress, impact, and inflammation on my vocal cords.

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I saw the doctor for a follow-up on October 11, and I got a very “Cowden’s-like” mixed report.  I was told that the vocal therapy had decreased the inflammation.  (YAY!)  However, the reduction of inflammation makes me a better surgical candidate. (I had really hoped I could just make it go away.)  AND, there was now a new, or newly visible “striking zone lesion” on the other side.  Both of the lesions were not “typical,” and would not resolve alone.  Both lesions appeared to have vascularity to them.  And, the “striking zone lesion” was irregular in shape.

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Despite his 99% comfort that the lesions were benign, I left with instructions to continue therapy, and to plan on having surgery close to the summer to remove the lesions.  I was told for the first time ever, that I would need to practice COMPLETE VOCAL REST for 7 days post operatively, AND for the next 7 days, I would speak approximately 1 minute for every hour.  The next several weeks would entail a slow progression back to my full voice use.  The thought of it completely freaked me out.

At voice therapy, there were conversations about Cowden’s Syndrome, and our tendency towards over-scarring.  The very real possibilities of what excessive scarring would do were discussed in a casual conversation.  By this time I am comfortable, and confident in the therapist.  She is smart, witty, and honest.  She’s real without being painful.  She also cares – about me, as a human, a teacher, a mom and a wife.

So, I had really hard conversations with my husband about the future, and I strengthened my resolve.  I charged my microphone, and I found the voice that exists out of my throat.  I have started to shorten my sentences.  I’m learning.

About 3 weeks ago it started to get worse.  Slowly and steadily worse.  Every day I would do my exercises, and I just couldn’t get the sounds.  My air was becoming a battle.  The inhaler became a part of many days.  I slept as much as I could.  I stayed hydrated and took extra vitamin C.  I ran no fever, but my chest felt full.  My head was pounding.

I stopped using the phone for anything but texting.  That was NOT the turn of events I needed, as I was struggling to keep up with people anyway.

Finally, I went to the urgi-center.  I was told I had “a lot of fluid” in my head.  I changed the allergy medicine.  I took a nasal spray.  I got a short course of antibiotics because it was lingering, even though I had no fever.  I upped the saline, and the steam.

I barely, and I do mean barely, got through the day Friday.

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Saturday I sat at therapy, so frustrated.  She was so patient.  So wonderful.  She told me she had been researching Cowden’s Syndrome, and there wasn’t a lot out there on its connection to the vocal cords.  We had kind of established that even if the Cowden’s didn’t cause the lesions, we still have to proceed knowing my body has Cowden’s and it affects everything.  We can NOT scar the vocal cords.

She had looked at my exams from July and October.  Side by side.  Frame by frame.  And very clearly stating, “I’m not a doctor, but…” I hung on every word.  I processed them with respect.  Some of our best help through the years has come with the premise of “I’m not a doctor, but…”

Vocal rest.  That’s where we’re at right now.  I am supposed to rest my voice when I am not teaching.

This is NOT an easy task.  I’ve been at it for 4 hours now and I may lose my mind.

This is isolation at its worst.

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The lesions won’t heal themselves.  I can just get ready for when I need to heal.  I can prepare for a lifetime of speaking in a way that babies my voice.  I can practice being silent when it is so much the antithesis of my nature.

This time beating cowdens will require patience, strength of mind, and stamina.

It’s messing with me.  But I’ve got this.  I’ve got this.

If you don’t hear from me… try my email.  Or texting.  My typing skills will be improving greatly….

#beatingcowdens

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