AHCA, High Risk Pools, and My Child’s Future

I am angry.  I am hurt.  I am worried.

I have stayed out of politics through the entire tumultuous 2016.  I have serious issues with many politicians.  I am not here to talk about them directly.  I am here to talk about an issue that transcends political party affiliation.  I will not engage in a debate about Democrats or Republicans, or the should have/ would have/ could have game that people like to play with each other.

This is far  more serious, and more important than any of that.  This is about my daughter.  It is about her life.  Her future.  And, it is about the lives of millions of American citizens, myself included.

I will concede that there are problems with health care in America.  I will even agree that healthcare the way it exists today needs change.  However, when I look at a situation that needs change, I think it through carefully.  I work through every detail. I weigh out repercussions and ramifications.

The Bill that passed the House today, in my opinion was put together in an attempt to score a “win” for our President.

When millions lose. No one wins.  That’s not just the math teacher in me.  That’s real.

Three years ago I was in a car accident.  It was a terrible situation, and I was T-boned at an intersection.  I will contend to my dying day that the truck that barreled through me was speeding so fast it never should have made it to me before I cleared the intersection.  I had the stop. I stopped.  He never saw me and it took almost a block, in a school zone, for his truck to finally stop moving.  Because the stop sign was mine, I was assessed with most of the fault for the accident.  It made me furious.  I was told speeding could not be “proven” despite the absence of skid marks.  The other 6 accidents that happened at that intersection in the months preceding were not helpful either.  In the end, I was grateful for my life.  I walked away and took the penalty on my insurance.  I paid that accident penalty for three years.  And, while it did not make me happy, I did it.   The accident penalty was annoying, but affordable, less than $200 a year.

The car accident happened once.  It might happen again, but it will not happen regularly.  I am 25 years driving, with one accident and no moving violations.  I have proven I am not a reckless driver.   I have control over that.  Full control, and I take my driving very seriously.

I also take health very seriously.  Unfortunately, there are aspects of my health I do not have full control over.  My daughter and I have a rare genetic disorder called Cowden’s Syndrome.  She is 30 years my junior, and at 13 and 43 we have seen the inside of an operating room close to 45 times combined.  Cowden’s syndrome causes tumor growth.  It carries with it an astronomically high risk of many cancers, most notable breast, thyroid and uterus.  It carries also significantly elevated risks of kidney, colon, skin, and other cancers.  Many of our tumors are benign.  Some are not.  The only route we have to long term SURVIVAL is constant surveillance.

Many doctors recommend surgery to remove things that are high risk.  Thankfully, that suggestion proved life-saving for me in 2012 when a “prophylactic” bilateral mastectomy revealed stage 1 breast cancer.  I was fortunate.

Two months ago I had surgery to remove a benign tumor from my vocal cords.  It was impairing my ability to breathe and speak.

In 16 days my daughter will undergo the 18th surgery in her young life – the 7th on her right knee.  Cowden’s Syndrome carries a high correlation to vascular malformations like the Arteriovenous Malformation (AVM) that grew in that knee.  After 6 embolizations to curtail the blood flow, she now deals with the repercussions of having blood lingering in the knee.  There is wearing away of tissue causing the patella to shift.  There is extreme pain, not just in the knee, but all through her body.  Her right foot stopped growing years ago, but the left one kept at it.  Now a full size apart,  different in length and width, her 5’8″ frame feels the repercussions with every step.  She is regularly at the chiropractor in attempts to minimize pain medication and keep her in alignment.  Pain medication caused such GI distress in 2014 that she spent a week in the hospital.  Cellular changes in the esophagus are not good in anyone.  At 10, with a condition that causes tumor growth, it was certainly another wake up call.  We gladly purchase 2 entirely different shoes every time she needs a new pair.  We are grateful she walks.

That is just the tip of what this child has endured in under 14 years on this earth.  She has had her thyroid removed with 19 nodules and suspicion of malignancy at the age of 10.  We still work to balance levels synthetically.  She had had TWO D&C procedures to eradicate suspicious tissue in her uterus.  She has had a lipoma removed from her back and vascular malformations from each palm.  She has lost her gall bladder.  She fights, stands up.  Moves forward, and gets smacked in the face again.

Soon after our diagnoses in 2011, another mom told me Cowden’s Syndrome requires vigilance.  I got it.  I am on it.  All the time.  And with the GRACE of God alone, we are walking the path the best way we can.

We average between 6 and 10 appointments a month between us.  The copays and travel costs are often daunting.  But, we are fortunate.  We have two good jobs my husband and I tell ourselves.  We have good insurance.

We are careful with every morsel of food that enters her body.  We eat largely organic and non-GMO to let her body use all its energy to stay healthy instead of fighting contaminants.  Even at that she is acutely sensitive to almost all gluten, dairy and soy.

We treat as naturally as we can, often incurring bills, as these treatments are rarely covered.  Yet, still we prioritize health because we realize its value.  And we remember how fortunate we are.  We have good insurance.  We have two good jobs.

My daughter is awesome.  And, not just because she is my daughter.  She is a respectful, kind-hearted young lady.  She has the voice of an angel.  She acts in the plays at school.  She reads for fun.  She swims passionately.  She is an honor student.  She talks about her future, and what she will do with her life.  I have no doubt she has the capability to make a real difference in this world, regardless of her career path.  Today however, I am left to wonder.  Will any job ever be enough?

If the AHCA passes the Senate, we will likely be placed in an unregulated “high-risk pool.”  This is not like my car accident.  This is not a minor inconvenience.  This has the potential to decide the course she will have to take with her adult life, as her health issues will not go away.  We have this genetic mutation with all its risks and ramifications for life.  Lifetime caps, potentially re-instituted will likely be met in her 20s, if not before.

There is no way at all to prove where the mutation came from.  I’d ask you to indulge in a theory with me a moment.  My father, a Vietnam Veteran was heavily exposed to Agent Orange as a Marine in 1967-1968.  My mutation was traced to my father.  He never manifested with Cowden’s Syndrome, but somehow passed that mutation on to me.  Wouldn’t it be ironic, if that toxic exposure in the jungles of Vietnam, in an attempt to fight for his country, ultimately led to this condition in his daughter and granddaughter?  Dad died in 2013, pancreatic cancer that may or may not have been Agent Orange related.  I’m glad he is not here to see the reality that our government may be on the cusp of turning it’s back on his family.

I was raised a proud American.  In addition to my Dad, I have three Grandfathers who were World War II Veterans.  I value the principles this country was founded on.  I am grateful for the freedoms I have in this country.

I have not been raised to use the phrase, “that’s not fair,” but I will ask you to consider a few things.

Last night as I watched the news my head spun as I heard elected officials allege that people with pre-existing conditions have not led good lives.  I am not here to compare, but I will tell you our “pre-existing” condition has NOTHING to do with lifestyle choices.  And if you do not like the site this link came from – scroll to the video.  Hear it from his mouth.

http://www.politicususa.com/2017/05/01/gop-congressman-people-pre-existing-conditions-bad-people-pay.html

I can name dozens of people off the top of my head, as close as within my own family, that would be grossly negatively affected by the establishment of “high risk” pools.

Should a cancer survivor, an MS patient, a diabetic, a person with a brain tumor, a rare heart condition,  a genetic mutation, or countless other conditions be forced to make decision on the path their life should take because they are too expensive?  Are they less valuable?  Do they matter less?

Should we be asked to decide whether or not to keep critical screening appointments, or have access to necessary medication blocked by cost?

We have two good jobs, and this whole thing terrifies me.  But, I will not be controlled by that terror.

This post will reach my Senators today.  Social media can be used for good.   I have a voice.  I will not be quiet about this.

Tell your story.  And if you can’t find your own words, share mine.  Let our Senators know that we are real.  We are not numbers.  We are not a cost-cutting measure.  We have faces, and names.  We matter.  We all matter.

We are determined to remain

#beatingcowdens

We will not be silent!

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 … Continue reading

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

Isolation

I have had a lot of time to think about a lot of things since my vocal cord surgery on March 3rd.

Blog from March 4th

One of the things I’ve thought about is how I feel a little bad for kids/teens today.  I know most are over-indulged, and don’t lack for things.   But, these last 16 days, having to be very limited, and conscious of my voice use, I’ve texted- a lot.  And, I find it completely unfulfilling.

Please don’t misunderstand, texting has its place.  At full voice, I use it often.  But, if there is a topic where voice inflection, emotion, or feeling matter, I can usually talk it out.  I can’t help but think that MOST teens today have little idea how to hold an actual conversation, and that the digital media age is limiting, and severely dampening their interpersonal skills.  The constant texting leads to misunderstandings,  misinterpretations and a general feeling of loneliness that just doesn’t have to happen.  I know – because right now I am living it.

I spend a good deal of time communicating online. I use Facebook, Instagram and Twitter.  I blog as often as I can.  I “meet” others around the world with Cowden’s Syndrome.  And I am so grateful.  Typically, the internet is a major source of secondary communication.  Except right now – it’s a lot of all I’ve got.

I am still at a point of severely restricted speech.  There were significant cuts made into both of my vocal cords.  I need to practice the exercises given to me in vocal therapy.  AND, I need to be quiet.  Often.

I can speak a few minutes each hour, in a gentle voice.  But, the rest of the time I carry my phone to text my family.  Conversation is brief, and sometimes frustrating by no one’s fault.  Tension can rise quickly.  You find yourself on edge.  It’s a wild form of isolation to be present, yet unable to communicate the way you want to.

I like a nice quiet day alone as much as the next person.  The thrill of being on my own to watch a few shows on Netflix was not lost on me.  I have appreciated the silence I so often wished for.

But, like everything, I’ve also learned too much of anything is not a good thing.

I retreat to avoid my natural posture, which is lips moving.  I am ALWAYS talking.  So even when my family is around, I’ve taken to “hiding.”  It’s necessary for the healing.  But, I’m over it.

There will be about 4 more weeks of gradual movement towards full speech, all building to a (hopefully final) post-op visit on April 13th.

In the mean time, I appreciate your texts.  I appreciate your Emails.  I appreciate your support.  I am trying to store up these times of silence to see if they’ll help me through when life gets too noisy.

“You can have it all, just not all at the same time,” a wise friend once told me.

I look around at adversity, illness, tragedy, and loss.  I am aware of my blessings.  I am grateful.

I am also honest.  I live my emotions so they don’t get the best of me.  I laugh hard, and cry hard (although both are frowned upon as the voice recovers.)  It’s all about balance.

So for now,

#beatingcowdens 

will have to be done quietly.

 

 

Richmond County Savings Foundation

If you were with us at “Jeans for Rare Genes” you heard me announce we had received a grant for $2500 from the Richmond County Savings Foundation.

This story Inspirational Staten Islander to host Fund Raiser ran on February 4th.  On February 8th I was contacted by the Richmond County Savings Foundation.  The story had been read, and it was suggested we apply for a grant on behalf of the PTEN Foundation.

We are relatively new to the fundraising thing, but with a lot of help, we got on track and completed the application.  The PTEN Foundation President, Kristen, spoke with them to get the 501c3 papers squared away.   And – about 10 days later we were notified of a $2500 grant, awarded to the PTEN Foundation!

We included the grant money in all our fundraising totals for the event, but today we got to go to the office to receive the check.  We got to meet Mr. Cesar Claro, who noticed Meghan’s story.  We got to meet Ms. DeSapio who helped us so much via phone and Email.

Meghan took the day off from school, because my speaking time is so limited, and because she’s the reason all this happens anyway.  It was just right for her to be there.

We gathered in a conference room with about 10 incredibly inspirational people.  I loved how professional, yet casual the whole experience was.  Amounts of grants were not discussed.  Checks were distributed in sealed envelopes, but first , everyone spoke about why they were there and how the grant was going to help.

Meghan spoke a little about Cowden’s Syndrome, and how we are hoping the PTEN Foundation will be able to inspire research on our disorder.  She did great, as usual.

We got to hear from a teacher, and his school’s work with Habitat for Humanity.  We heard from “Metropolitan Fire” and how the grant would help their organization.

We got to meet Dennis McKeon From Where To Turn, and hear about the work his organization does on Staten Island.

We heard about the Moravian Church garden and their donations of food.

We met E. Randolph Wheagar from 2nd Chance Youth Empowerment Program, and we were inspired by their community work as well.

We met Jennifer Dudley from Staten Island Children’s Museum and learned about their efforts to “spruce up” the museum.

We met a few other incredible folks as well, one whose organization was obtaining deeds to local neglected cemeteries so they could be maintained.  In the absence of pen and paper a few are slipping my mind, but it was a fantastic experience.  It was an intense 45 minutes!

Perhaps the one that touched our hearts most was Mr. Capolongo who spoke of his son Michael with Duchenne Muscular Dystrophy.  If you are not familiar with the genetic disorder, you can get some information here. Duchenne Muscular Dystrophy  It is a genetic disorder affecting about 1 in 3,500 boys.  The body lack dystrophin, and without it muscle cells become damaged and weaken.  It is progressive.  Michael is 11.  They have 2 other healthy children.  They are a family like ours.  Dad is a policeman, mom is a nurse and a breast cancer survivor. Yet, they have managed to create a not for profit, Michael’s Cause and have raised a million dollars to help fund research, and hopefully, ultimately a cure.

In the 30 minutes we sat across a table I felt inspired, and connected.  I respect so much the positive outlook, and the awareness that even in strife, others have it worse.  I respected the acknowledgement that every day is a gift, and life can change your perspective quickly.  These are things we identify with in this house.  Those are principles we live by.

Meghan and I often feel a little more “at home” in the presence of others with rare disease.  While they are all so drastically different, the difficulty, the fear, the unknown, the isolation, they all overlap.  And what also overlaps are your decisions in how to handle them.

I was reminded of my own girl, at the age of nine telling NY1 that. “You have a choice, you can get angry or you can DO something.”  And, “I feel like I was put here to DO something.”  Watch this clip and reminisce with me.

Today we were full of gratitude.  Today we were inspired by others.  Today we were reminded of our own mission.  Today was a continuation of an ongoing goal,  and a reminder that it matters.  It all matters.

We remain

#beatingcowdens

The Struggle (for Silence) is Real!

Irony is spending 20 years wondering why your students sometimes struggle to be quiet, and suddenly, in one week, realizing how insanely difficult it is to be silent, AND, that it’s likely your need to talk constantly is part of the reason WHY you went into teaching in the first place!

Last Friday, March 3rd, this ugly thing was taken off my vocal cords.

Before – 3/3/17

And they, like so many other parts of my body, now boast scars.

After 3/3/17

So, I set up for a few weeks out of work, and a week of required silence.  I never actually thought I was ready, which is a good thing.   Because I wasn’t.

I do poorly on twitter,  Rarely could I get out what I need in 140 characters or less.  Absolute silence involved my cell phone in hand at all times.  A few times the thing almost learned to fly, as the fingers, and auto-correct could not keep up with my brain.  But, life lesson number, oh, I don’t know, 4 or 5, teaches us that life goes on around us.  Ready or not.  Even when you have to watch and not participate.

There have been many times since March 3rd I’ve been grateful that thought bubbles do not appear above my head.

On the 9th I headed to the city for my follow-up.  After learning the pathology was benign, and read only “polyp,” I was relieved.  The doctor was pleased with the initial healing and told me I could begin to use my voice.  Slowly.  He said 5 minutes an hour.  That sounded high, based on what the voice therapist had told me in the fall, but I was grateful.  I used the first 5 minutes up asking him questions.

I wanted to know whether this was connected to Cowden’s Syndrome.  I wanted to know if it was likely to recur, if I needed vocal therapy, and when my follow-up would be.

Apparently, kind as he is, he could communicate on Twitter much more efficiently than I.

Cowden’s Syndrome?  I don’t know.  There’s not a lot of literature.  This type of polyp is usually a traumatic event, something you’d remember.  But, you don’t.  And it grew really fast.  I’m not sure.

Recurrence? Maybe.  Depends how it came to be.  Be careful with your voice.

Vocal Therapy?  Suggested.  Start on the 13th.  (Whew… THAT I now KNEW I needed.)

Follow up – April 13th, a few days before I am scheduled to teach my first class post-operatively.

He was an outstanding surgeon.  Matter-of-fact.  Thorough.  Efficient.  But, I’ve known enough surgeons now to know, they don’t play with why.  They just fix it and move on.  He will “doctor” me, to the point that he will follow-up, and hopefully watch NOTHING ever grow there again.  But, in reality this is now just another vulnerable spot on this PTEN mutated body.  Because, I would stake certainty that it’s connected.  There just aren’t that many coincidences in life.

So I left Thursday feeling good.  I got 5 minutes an hour!  I tried out my voice in the car.  I tried it out at home.  And then, I picked up my daughter at school, and I was so excited to talk to her, I easily let the conversation surpass 15 minutes.  oops.

Later when I spoke to my husband I was well past 10 before I stopped.

This 5 minutes and hour thing was not for the faint of heart!

Sometime Friday I decided that stopping at 5 minutes was, nearly impossible for me to regulate.  It was quite possible I could lose my mind.

And then I texted the voice therapist to set up my appointments for this week.  And I mentioned the 5 minutes.  And that I randomly out of nowhere had vomited for 20 minutes that morning.  And her words were crystal clear. “DO NOT SPEAK AGAIN UNTIL I SEE YOU”

Sucker Punch

I went from a poorly managed 5 minutes back to a feeble attempt at silence.

I failed.

I spent 2 full days at a swim meet at with my girl.  7 hours each day away from home.  I got to rest my voice, except when I felt compelled to tell her how proud I was.  Or to wish her luck.  Or to just chat… a little.

Some people really love chocolate.  Me, I don’t mind chocolate, but I LOVE to talk.

We sat in therapy today and I got exercises for volume and pitch… all ironic because I struggle to tell the difference, but I’m an overachiever, so I try to do well.  I sound like a complete loser, but I imagine it’s the same as me attempting something that requires coordination, like kick-boxing, or yoga. My poor vocal cords may not stand a chance.

6 exercises, 5 times each.  Repeat 4x a day.  And during those 4 hours DON’T SPEAK at all.

The revised schedule she gave me had 3 minutes an hour till Friday.  Then, we’ll entertain 5 minutes again.

Tonight I pulled back into my office.  To be silent I must be alone.  I put some “breathe” into my diffuser, and tried to get my thoughts together.

Then I realized they ARE together.  I just have no place to put them.

Tomorrow the house will be full for the snow day.  Normally this would make me very happy.  Tomorrow it is likely to make me a hermit.

Grateful the voice works.  Grateful I tend to heal well….  But, some days

#beatingcowdens

is a real trip!

Silence is… difficult and required

I always hated charades.  I stunk at it.  And I still do.

charades

I would have made a rotten mime.

mime

Forced down time.

That’s what surgery brings.

This time it brings silence as well- for at least the next 5 days.

Emoticon posing like “three monkeys”

I kept moving so fast through the last few months that maybe I chose to ignore the problem growing inside me.  I mean, ignore it in the sense of not writing about it too often.  Of course, I’m not foolish enough to ignore it…

It was last spring, right about this time that I started to feel a little hoarse.  I blamed it on spring allergies.  Except it never went away.

It always struck me as odd because it came at a time during the year I was teaching less, and testing more so there was less of a strain on my voice.

Once spring turned into summer, I had to accept “spring allergies” wouldn’t work.

I searched for an Ear, Nose and Throat doctor in Manhattan, in my network. I read bios, and surgical articles, because everything seems to end with surgery anyway.  So – I find its best to pick a good surgical record to start.  Negative, or realistic?  You can decide for yourself.

The first appointment I met the speech pathologist and the doctor.  Both took baseline screens.  I was told at initial consult in July that there was a “nodule” and a “striking zone lesion” on the opposite side.  I was told it did not seem “typical” of the nodules teachers usually get, and I was told at that initial visit I would likely need surgery in the future.

Healthy image

Healthy image

But, first I was sent to vocal therapy.  And while I scoffed at the idea, I know now how valuable the experience was.  I have always sent my daughter to therapy when needed, and marveled at the success I saw with OT, PT, and Speech.  But somehow for me, it was a tougher pill to swallow.   At first.

I think when I wrote about this last I had connected with the Vocal Therapist, a gem of a woman, and a skilled class act in Speechless – October 2016  And then there was a quick entry here Laugh Out Loud – November 2016,  Basically, the therapy helped enough to reduce the swelling, and reveal more issues.  In October I was told definitively that surgery was in the future plan.  I was told to continue to practice what I had learned in vocal therapy.   I was told to rest my voice when I wasn’t teaching, and to employ a slew of new speech strategies and exercises.  I continued Vocal Therapy through December.  It has been no easy task, and I am FAR from perfect at it, but I can say I’ve made improvements at least a third of the time.  Not too bad for a few months of modifying something I’ve been doing for 42 years!

The kids at school are used to my “tour guide” microphone, which helps me resist the urge to overextend my voice.  We got in a routine, as you do when faced with a new obstacle.  There is no other choice really, because as my friend says, we just “keep swimming.”

The plan was for me to return to the doctor in early April to set up surgery for the summer.

Except plans change.  And it was getting a little hard to breathe.  I felt like I had asthma symptoms more often than I am used to, and almost like a constant feeling of fullness in my throat.

I called the doctor to move the surgery up.  We set February 20th as the date.  Sometimes I just have to trust my instincts.  Except I got a call that the OR was closed on February 20th and I had to take either February 17th or wait till March 3rd.  And for a hot couple of moments I entertained February 17th.  Except that “Jeans for Rare Genes 3” was set for February 19th.  And, me being on total vocal rest while we entertained 120 people wasn’t a great idea.

January 31, 2017

January 31, 2017

I headed to see the doctor on January 31st and he found a new problem.  There was now a very large polyp extending over the vocal cords.  It was big and it had not been there in October.  I asked about the likelihood of it being benign and I was told he was 99% sure it was all benign.  I liked the odds, but still he agreed waiting till the summer wasn’t a great plan.  We settled on a surgical date of March 3rd.  Carefully calculating the number of days I’d need to be off of work before my return, we established it should still work.

Over the last few weeks I felt increasingly short of breath during mundane tasks.  I stayed calm.  I decreased my daily activity and moved a little slower.  I knew we could make it, and we did.

So, “Jeans for Rare Genes 3,” went off as a successful event, and yesterday morning, on the first anniversary of the death of my beloved Pop, I headed to NYU to have my surgery.  I left with the prayers of great friends and family, and the intense protection of one of my Guardian Angels.

The surgery went as surgery does.  It’s strange how it’s not nearly as anxiety provoking as it once was. The whole routine has a wild familiarity, from the intake to the recovery room.  I don’t get lost anymore and anticipate their words and requests.  It’s odd, and a bit strange this job of #beatingcowdens.  I walk dutifully to the OR and get settled under my warm blankets.  I expect the IV, and the burning of the anesthesia.  I know the mask will be the last thing I remember before the recovery room.

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And its amazingly less nerve wracking when the surgery is for you and not your child.

So the biggest polyp had increased drastically in size since January 31st.  It’s gone, and so are the other issues.  We wait on pathology and a follow-up next Thursday.  I’m on strict voice rest until Thursday at least, which requires me to really isolate.  Talking to my family is reflex.  And as I said before I stink at charades.

Before - 3/3/17

Before – 3/3/17

After 3/3/17

After 3/3/17

So we carry our phones.  I put my fitbit on rest. It’s off an in a drawer.  I’ve got my laptop in my room. I’m eating my Isagenix and diffusing protective oils.  I’m organizing my brain- a little.

I’m trying not to get ahead of myself.  I’m trying to address one day at a time.  This is not my strength.  It is in my long term planning that I strengthen my resolve and focus best on

#beatingcowdens.

For now it’s been about a day.  I slipped on about 20 words total.  Not great, but I never claimed to be perfect.  The funny thing about talking is you don’t realize how much you do it till you can’t.

The laughing is even harder.  My husband is funny.  It’s one of the things I love most about him.  How lucky and I as I heal to lament that my daughter wants to talk to me, and my husband makes me laugh?  I’ll hide from my biggest blessings a few more days.  #gratitude

 

 

 

To Do Lists, Digital Footorints and Random Thoughts

I’m not one for New Year’s Resolutions.  I don’t believe in waiting for a specific day to make changes.  If they are needed, wanted, or warranted – we make them.  Right then.  Otherwise, I’m all about just being your best you- every day.

Parenting a teenager is tough stuff.  Even when your teen is just a good soul, a hard -worker, a good student, and a compassionate human.

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There are people who would challenge me that we have it easy.  They give me the default model, that raising one child has to be easier than raising 2 or 3 or 4 or 5 or more…  And maybe they are right.  I will never know.  But, they won’t either.  That’s the point.

Raising our children, or living our lives is not meant to be a discussion of “harder” or “easier.”  There are challenges present in every single scenario that comes to mind when I think of EVERY family I know.  In this house we  talk a lot.  My girl and I, we talk about those other lives we know, and their battles.  And we send love and prayers and warm wishes, as they do for us.  It’s not a contest,  it’s real life.

2016 saw the results of two uterine biopsies of my then 12 and 13 year old, with results that left us uneasy, and in a perpetual state of “cautious waiting.”  It also saw me back in surgery, replacing less than 5 year old silicone implants because one had “fallen”  And then, it saw my clumsiness as I spent 6 weeks booted with a broken toe.

2016 saw loss in my family, as we mourn Pop, and are readjusting with Grandma in her new living space.

Yet, we made it.  We came out with a few bumps and bruises, but we made it.

2016 ended with 8th graders we know taking High School entrance and Scholarship Exams.  The next weeks will bring jubilation, laughter, and tears.

Yet, we WILL make it- all of us.

The “To Do” list on the yellow pad to my right is busy.  The fundraiser is about a month away and there is lots to be done.

There is also an MRI, a vascular surgeon, an orthopedist, an endocrinologist, and a gastroenterologist for Meghan, as well as Pre-surgical testing, a tentative surgery date, and a breast surgeon follow-up, an oncologist, and an endocrinologist for me.  All before February 22.  That’s IF no one requires additional testing for anything…

We will fit in the “regular” stuff too, like swimming, and meets, and school projects, and drama… well you know what I mean.

We are working hard to fit Cowden’s Syndrome into our lives, and not to let it RUN our lives.  It’s a subtle difference on paper, but a HUGE one in practice.

And when the thought of running a house that contains TWO people with a rare genetic disorder becomes overwhelming – we try to step back and count our blessings.  Because at the end of all days, regardless of our struggles, it is good for us, and those around us, if we can remain positive.  I’m not saying we’re perfect at it – far from it actually, but it is a goal, and an on-going work in progress.

It came up this week when we were preparing for the fundraiser and talking about social media.  Actually, it has come up a bunch of times since the iPhone became attached to her hand almost 3 years ago…

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Digital footprint – how are you presented on the internet?  What if someone “googled’ your name?  Now?  5 years from now?  8 years from now before your job interview?  The whole concept of this blog has been discussed in depth.  Meghan, whether she likes it or not, at the age of 13 has an identity that is connected to her rare disease.  Now, don’t misunderstand me for a minute – a close read would CLEARLY indicate, she is NOT her disease, but she will never have the opportunity to deny the diagnosis.  That’s forever, and its important.

What she does with it, well that’s ongoing.  She’s made some pretty dynamic choices to date.  Sometimes she feels a bit like she has something to prove- so she does.

She’s been asking me for “snapchat” lately, and eventually I’ll give in.  But, I’m one of the mean moms who makes her wait.  Instagram is plenty to manage for now.

This week Meghan was nominated as “Inspirational Staten Islander of 2016.”

It prompted me to “google” my daughter.  So when I type in her name connected to our home town, these are the first links to surface…

How Meghan Ortega saved her Mother’s Life

12 Year Old With Rare Genetic Disorder Chosen as Inspirational Islander

Staten Island 9 Year Old and Her Mom are on a Mission….

12 Surgeries in 11 Years- Living with Cowdens Syndrome

Meghan Ortega- NYS Senate

I’ll take that top five any day.

And just for good measure, I switched to an image search.  These 5 were on the first page…

Meghan in her elementary school with one of her idols- Borough President James Oddo

Meghan in her elementary school with one of her idols- Borough President James Oddo

An old one - when Meghan was named "Hero of the Month" by Child Life after an early surgery

An old one – when Meghan was named “Hero of the Month” by Child Life after an early surgery

SI Children's Museum Achievement Luncheon Award

SI Children’s Museum Achievement Luncheon Award

Rare Disease shirts from the PTEN Foundation

Rare Disease shirts from the PTEN Foundation

One of my most proud - NYS Woman of Distinction, nominated by Senator Lanza in May 2016

One of my most proud – NYS Woman of Distinction, nominated by Senator Lanza in May 2016

And, just to be sure, I even tried Youtube.com, only to find a video made in February 2016

Apparently she has listened, carefully.  I don’t know what the future holds for my bright eyed activist.  I know she’ll continue to take heat from a few along the way.  I also know she’ll find the strength to rise above and press on.  Because, that is what we do.

Would she like it is she were named “Inspirational Staten Islander of 2016”?  Sure.  Will it break her spirit one way or another, absolutely not.  Her focus is, “If I win, we could get publicity to help raise money at the fundraiser…”

2017 Event Flyer

                                                                       2017 Event Flyer

If you’ve read this far I’ll tell you what I know about the poll I’ve linked you to below.  The voting takes place like a reality TV show.  I’m not sure how valid it all is, but there is a week of lots of voting.  It ends January 11th at noon.  Apparently you can vote many times before it stops you.  And then you can vote every hour.  So pretty much, if it crosses your mind, and you find Meghan inspirational, save the link and vote whenever it crosses your mind, until your device tells you to stop.

Regardless of the outcome, life will go on.  And we will continue on the same missions we’re on right now.

#BeatingCowdens together

Inspirational Staten Islander Poll – Vote all the way at the bottom

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