Easy is for Amateurs

I knew it wasn’t going to be easy. I did. I just didn’t realize it was going to be THIS hard. I mean, maybe I should have. Easy is for amateurs after all. But, I didn’t realize it. And as a direct result I am just coming back to life after a week of anticipation, frustration, exasperation, disappointment and despair, because finally we have settled into HOPE.

There are so many things that are not quite as we expected. Some, because we did not ask the right questions, and some because the questions could not have been anticipated until we arrived. Yet other things were not as we expected because so much time lapsed from contract to “Team Training” that some of the things we were seeking most seemed to have gotten lost in translation.

The trip, all 11 hours and 750 miles was nothing short of exhausting. We ended it with a stop at Whole Foods before parking in the ice covered hotel parking lot. We promptly found someone to help, and paid a generous tip to have our car emptied to our 4th floor room while we waited out of the way of the black ice and the unwelcoming bite in the Indiana air.

We had a hard time resting that night, thinking of the union over three years in the making, that was finally only hours away.

When we arrived at Medical Mutts there was a warm welcome from Eva, and there was Marvin, the friendliest cat I’ve ever met to sit with us through paperwork. Michele, Ella’s primary trainer, came with Ella, and while there was excitement, there was hesitation throughout the room. There were no “fireworks” and no “Here Comes the Sun” playing, as I had anticipated so many different times before. There were casual greetings, and obvious work from everyone, human and canine, to try to figure each other out.

That is the part you don’t think about before hand. Or maybe you do think about it. But, then there is the difference between thinking about it, knowing it, and experiencing it. Ella is not a computer to be programmed. She is a dog. And for all the reasons we love dogs, she is a dog. She is also a highly intelligent, and extremely well trained dog. The former, her intelligence and even her ability to be trained are innate. Her training though was very much a labor of love.

Medical Mutts saw promise in this girl, a stray from the streets of Tennessee. They took her in from the rescue that had taken her off those streets. They brought her to Indiana and loved her. They worked with this beautiful girl knowing that she would one day become someone’s partner for life, and give them just the independence they were so desperately seeking. It is the whole reason this facility, these people, were Meghan’s focus years prior. The beauty of taking the unloved and abandoned and giving them value and purpose, that is the real reason we ended up here, at THIS facility.

I guess I just hoped, that it would be easier. But, easy is for amateurs.

Ella’s primary trainer was Michele, a well-spoken, professional and knowledgeable woman. When she first greeted us I found her a bit aloof. In less than two hours I realized she had put a good deal of energy into Ella and was protecting her best interests. She was trying to figure out if Meghan was going to give Ella the life she deserves. In less than two hours those two understood each other and I watched aloof become focused and driven to ensure she transferred all her knowledge of Ella to Meghan.  I watched she and Meghan connect, like minded in many ways, and both were keen on making this union successful.

They worked Monday and the progress was spotty. Ella came with us to the hotel that night and all of us were in for an adjustment. We expected a dog who would hop on the bed and cuddle. But, Ella wasn’t accustomed to touch. My mind was a little blown, as we had sought this dog largely to sleep with Meghan, soothe her through nightmares, and wake her in the morning.

Tuesday they met again, and worked on some behaviors. My mind traveled from confused, to furious as I silently boiled at the thought we had waited this long for a dog that lacked what we had asked for in the first place. Further, she was distracted and needed seemingly constant redirects. When we entered the mall and both trainers seemed stunned at what they saw, I actually took a walk to choke on my tears. How after all this time could this be what was happening?

When I had originally looked at the schedule I was irritated that we had an off day Wednesday. I needed to go back to my life. What was this “off day?”

And then it was Wednesday. And I understood. It was a huge pivot in the journey. Meghan and Ella had some fun time. Ella stayed on the bed, and even let Meghan touch her. Ella played. She rested. Meghan got some confidence. They began to connect. It was so much slower than I had planned in my mind, but so few things ever go according to plan, I knew that often the best things came out of the detours.

There hasn’t been a day that we have not felt the full gamut of emotions. We’ve laughed and cried and screamed and yelled. We’ve giggled and cheered. We’ve passed out from exhaustion.

This morning Meghan and Ella had successful outings to CVS and Barnes and Noble. And I mean, really successful. They did the best team work I have seen so far. We came back to the hotel to playful “zoomies” and another training session with Michele.

And then tonight there was exasperation on a trip outside.

The pendulum is relentless. But every swing seems to leave them closer to being a functional pair. Ella is asking for contact. Meghan is reinforcing at rates that keep her interested and focused. They are growing together.

The weekend is for resting, playing and some informal sessions. Monday we brush up. Tuesday they take their public access test before we begin the journey home.

Tuesday is not the end, but another beginning. There will be so many beginnings in this journey. And maybe that’s the point.

Nothing in Meghan’s life has been as we planned. And not much has been easy or smooth. Yet every single step has brought us to places we’d never imagined possible.

Easy is for amateurs.

Meghan and Ella you’ve got this!  Let the journey continue.

#beatingcowdens

4th Grade, Zoom, and Searching for Balance

I sat on my couch Thursday for the first time since September. It was an odd feeling to sit somewhere other that the desk chair that seems to have a permanent imprint of my bottom.

I sat down after releasing my 29 “rectangles” (read my adorable remote-only 4th grade class) from their daily Zoom meeting early so that they could play in the newly fallen snow.

It is just shy of 2 years since the fall in my classroom that changed my world on 1/8/2019. The need to teach remotely, which was generated by the suggestion of my diagnosing geneticist to minimize my exposure to Covid-19, and was sealed in securely by my foot’s stubborn inability to recover, even after a theoretically “corrective” surgery on 6/25/20, had been an experience that has absorbed almost every hour of every day since September.

After over a decade of working as a “cluster teacher,” teaching predominately a math lab, I was assigned to a fully remote 4th Grade as their real, actual full-time teacher. I was given student copies of the reading, math, science, and social studies program. Teacher’s guides were in hot demand. I was given online access where it was available. Fortunately, I was also gifted with 4th-grade colleagues who value, live, and breathe teamwork.

But, even with an amazing group of teachers to work “with” I was largely on my own. Some of the teachers were fully online like me, but most were teaching “blended” or “hybrid” programs where they were in the building with different students on different days.

Google Classroom was learned through “YouTube,” as were mostly all things Google. I figured out slides, docs, and a working knowledge of forms. I navigated TeachHub, got a recurring Zoom link set up, and vowed to give them the best I could in these crazy times. I figured out BitMoji, and tried to entertain through morning slides. I learned a curriculum I never fully taught. One day at a time.

If nothing else, I am stability for them, and they for me. The class began as 16 and has swelled to 29, but our routine is solid, and I am, for the most part, there “with” them all day. The whole thing is less than ideal, for everyone. But it is life mirroring reality at this point, and a Global Pandemic is less than ideal – for everyone.

In this capacity though, in my mind, it is all about the children, I will NEVER be able to give them a “real” 4th-grade year, but I will strive to give them order, organization, consistency and knowledge they are loved. Beyond all the adults that are out of their elements. Beyond all the political opinions. Beyond the emotionally charged debates, here on my screen daily are very real children, who are being very affected by everything we do and say. There are humans in those boxes. There are humans that are in their homes for different reasons, each with their own personality and very real story.

They are someone’s child. And as my child sits on her computer “attending” a very bizarre Senior Year, I think of the 4th grade her. And I try even harder. I think of the families that are not able to sit with their children because they are working from home, or there are grandparents watching who are not computer savvy, and I think about being raised by a hard working single mother and my ever-loving grandparents. Those children are my child. Those children are me.

I have put in more that my share of 12-15 hour days. I’m not super proud of that, as I have neglected self- care and the needs of my family. My family misses me. But, they understand. I have cried real ugly tears of exasperation and frustration at changing regulations and policies. They understand that too, and bring a hug, chocolate, flowers, or a glass of wine as needed.

I will not reach all the children. I will try, but I will not. I do not like to be anything less than successful, and that reality sometimes keeps me up at night. It would be hard to ensure 29 children in front of me mastered all their subjects. They are humans. They miss people. I get it. But, I can’t fix that either.

My girl handled the college application process almost unassisted. She worked through her essay, vetted her schools, created online interviews, and “meetups.” She is applying for scholarships and has a few promising offers for Physician Assistant programs, a career goal that seems perfect for her. Thank God she is who she is. I paused only to do FAFSA and proofread a few things and the acceptances began to roll in.

While life continues around me I plod on. I arrange science experiments at my desk and I live to provide supplemental digital resources from “Teachers Pay Teachers.” I do, as I have always been taught, “the best I can with what I have right now.”

And this week, when I got to pause I had a hard reality check. I am behind on almost every maintenance appointment. Cowden’s Syndrome, as I have been told since my diagnosis, carries with it cancer risks that peak at 50. Despite my mastectomy and hysterectomy, I remain at great risk for renal cell carcinoma, colon cancer, and melanoma among others. My care team has dissolved. The hospital I once centered out care out of has lost one doctor after another. No one has agreed to take the reigns of a less than basic life. And in this time of Covid-19, it is even harder to establish new care.

Losing track of my own health for a period of time, to benefit the mental and academic health of the children I have come to care greatly for was a necessary distraction. Now as we face the holiday season and the start of a new year, it is time to strengthen my resolve and figure out a way to strike a balance.

I need those children as much, or more, than they need me. But I need to strike that self-care balance. I need to step away from the computer, and silence the phone from time to time.

I loathe establishing care at new offices, attempting to break doctors in, when their very schedules disrupt every aspect of my life, and their care has often proven sub par.

Maybe the last few months I have been quiet because instead of #beatingcowdens, I felt a lot more like we were SURVIVING.

I have a feeling we are not alone. I wouldn’t know for sure because I’ve lost touch with almost everyone. These are crazy times. Take good care of the little people in your life. Know that however you feel about what is going on in the world they hear it and feel it.

I continuously remind myself to “be kind always.” Now more than every, everyone you meet is fighting a battle you know nothing about.”

We remain forever sometimes barely surviving, but ultimately

#beatingcowdens.

Seventeen- The Days Are Long But The Years Are Short

August 9, 2020

Dear Meghan,

HAPPY 17th BIRTHDAY my girl!

This is not the birthday we planned, but it will be amazing in its own way.

These last few months have been a lesson for the world, that plans are sometimes abruptly interrupted and that life is often unfair.  This is not news to us.  We’ve been replaying that lesson together for many years; cheering each other on, and holding each other up through surgeries, recoveries, setbacks and all the things that come with our diagnoses.

The difference this year was that everyone else was at it alongside us.

I know you well Meg, but I have learned even more about you these last few months and I could not be prouder of you.

You tend to see the parts where you struggle.  Sometimes it weighs you down.  I see the parts where you succeed.  I see the parts where the struggle is productive and you grow.  That’s why we’ll always be good together.

There is no denying that there were times this year where frustration, sadness, isolation and loneliness tried to win.  But, as I’ve said to you so many times before, you have a 100% success rate when it comes to overcoming obstacles, and this year proved no different.

You took the “remote learning” for what it had to offer.  You missed the classes that had been engaging you and challenging your brain, but you never gave up.  You spent the end of your Junior year as you did the beginning, finishing with the same perfect report card while doing a whole lot of “self-teaching.”

Swimming was wiped out in March just days before a meet that was to be your comeback.  You were trained.  You were ready.  It was cancelled.

You mourned a few days.  You worried about how to keep in shape.  Your body had never allowed you to do much land training.  You tried video after video.  You addressed your own frustrations.  You found a way.  Now, when I see you hitting a heavy bag probably in the best overall strength of your life, I can’t help but smile.  When I see photos of an 8 mile hike, when a year ago walking .5 was too much, my heart sings.  You push your body to always be better.  You don’t give up.  You inspire me.

You had gotten us to agree to that tattoo months earlier – but you couldn’t be out of the water the required time after it was done.  Then suddenly swim practice was no longer.  So, you did it.  With our blessing you took back a little of your body that day.  You took back some control.  You started to heal your soul a little more from so much trauma.

Without access to standardized exams, without the ability to tour campuses, without your college office, you knew you had to take matters into your own hands.  Focused on your desire to be a Physician’s Assistant you carefully researched Universities.  You created a list.  You reached out to swim coaches.  You set up your own calls.  You narrowed things down.  You called again.  You got connected to admissions offices.  You are well on your way to completing applications.  You could have sat back and whined.  You could have waited.  You refuse to let anything stand in the way of your goals and dreams.  When college is ready for you in the fall of 2021 you will be well-prepared.

You had a birthday vacation to Disney with your very best friend planned to the day.  You were so grateful and so excited to experience your happy place with a great deal of independence, and super fun company too.  We watched the numbers.  We stalled.  We watched some more.  Then finally I had to pull the plug.  Your birthday is one of my favorite days.  It was hard to hand you disappointment like that.  You took your time to process and picked your head up again.  There will always be 2021…. The magic will still await.

Faced with the unusual situation of being local on your birthday you talked through all the feelings.  You wanted to do something to make joy out of disappointment.  You decided you were going to use your day to make others happy.  You chose Ronald McDonald House, as you remember vividly the treatment you received when we spent a night in 2014 before your thyroid surgery.  With a little help from Aunt Lisa, you were connected to the CEO of the RMDH New Hyde Park.  I listened as you spoke to him and was just full of pride at your maturity and ability to handle yourself.  By the time you finished he was as excited as you were.

You spent hours generating a digital flyer.  You texted and posted and shared.  You set up a contactless donation option for items on our front porch.  Signs were made.  People started to reach out.

When people asked what you wanted for your birthday, you sent the flyer.

That level of selflessness causes parents hearts to actually burst with pride.

There are many things this year is not.  Many things you wished it was.  You are starting your Senior Year of High School in very uncertain times.  Your resilience is amazing.

It is not all smooth.  It is not all easy.  There are COUNTLESS bumps, and pot holes and craters in the road.  “The other shoe” drops constantly.  Sometimes as a sneaker, and other times as a steel toed boot.  Regardless, you dust yourself off and press on.

“Get up.  Dress up.  Show up.  And NEVER give up,” was written for you.

I can not promise you a smooth year.  No one can.  What I can promise is that if you continue to remain driven, focused, compassionate and loyal, you will succeed in all you do.

My wish for you is that you can spend some time this year learning to love your own strengths.  I hope that you can spend less time worried about the struggle, and more appreciating the outcome.

Explore.  The world is waiting for you.  And the world will be better for it.

I love you more. Always,

Mom

 

 

 

 

 

What will your verse be?

“…That the powerful play goes on and you might contribute a verse.”

-Walt Whitman (O Me! O Life!)

“What will your verse be?”- Robin Williams (Dead Poet’s Society)

I couldn’t sleep last night. This echoed in my ear over and over again. Dead Poet’s Society has long and forever been my favorite movie, and Robin Williams my all time favorite actor.  But, I must admit neither often keeps me awake unless things are on my mind.

My father-in-law passed away last week.  His funeral was Saturday.  Parkinson’s was ruthless and took its time ravaging his body.  Yet, through the end his spirit never wavered.  During more than one conversation we had over the past few months, he would often say, “God in the front.”  He would tell it to me in English, and in Spanish, but I won’t pretend to be able to even type the Spanish version.   The conversation often led back to the same sentiment.  “Everything went wrong when we stopped putting God in the front.”  He meant in life.  In the world.  In the chaos.  In the anger and the hatred so often around us.  To him it was simple.  It was powerful to hear him explain it.

I realize not everyone shares my faith, and I am ok with that.  What I do wish for everyone is a belief in something that can help you maintain your poise and grace through indescribable agony or just generally difficult times.  Because none of us know what our future holds.  But, as Walt Whitman said, even after we have left this earth, “…the powerful play goes on, and you might contribute a verse.”

What is my father-in-law’s verse?  To me it is everything.  My husband.  My daughter.  Their light.  Their souls.  Their spirits.  Their hearts.  He contributed to this world two of the most spectacular humans.  The powerful play goes on.  He rests now.  But his verse, it has ripple effects.

A very young grandchild of a family friend had a very near miss on a life and death experience this week.  He is recovering.  I spent many hours talking to God about what his verse could be, and how much he could still do here on this earth.  Heaven had enough angels.  It was not the first miracle I have witnessed.

A photo taken by my Dad of a much loved statue. He is forever now one of our guardian angels.

What will your verse be?

I’ve reached a point in my life, where I will not give people the power to affect me negatively.  My older sister has given me this advice countless times, but it is finally starting to register.

Meghan and I have talked a lot about the Nature vs. Nurture debate these last few weeks.  We’ve played what if games with a ton of scenarios.  The thing about this debate is the only truth is, it’s both. Nature and nurture impact who we become.  Sometimes one is more powerful than the other, by no fault or credit of anyone.  But, it’s undeniable that they cross over.  All the time.

Bad things happen.  We can’t always choose those things.

Relationships with both family and friends sometimes sour.  We can’t always fix it.

Health sometimes fails by no fault of our own.

Sometimes there’s a global pandemic, and everything gets turned on its ear.

We often can’t choose what happens to us.

What we can choose is our response to those things.

And often, it is the response you choose that can lead you to peace in the darkest hours.

Life is not easy.  I am not telling you I’m never mad, or sad, or flat out angry.  I’m human.

But, lately I’ve been choosing to spend less and less time in the dark places.  And while I recognize getting to the point where you can make that choice is in and of itself a battle for some, I know that everyone moves at their own pace.  For me I’m at a place where I’m choosing the light.  I’m choosing not to give people power over my happiness.  I’m choosing to put “God in the front.”

I am 4 weeks post op from a major foot surgery, and still non weight bearing.  The other day I went out on my crutches determined to drop a package at the post office and put gas in my car.  Three separate people stopped to offer me help at the post office, and a kind old gentleman insisted on pumping my gas.  I saw so much good.

I choose to think its always there, but it stuck out so much more because I am prepared to seek it.

What will MY verse be?

I’ve been thinking about that a lot.  The truth is, I don’t know.  But, I do know I want to start forming it now.

Having a rare disease, and also just having open eyes and ears has grounded me in the reality that there is no promise of tomorrow on this earth.

What will MY verse be?

I’m not sure yet. But, I’m working on it.  One day at a time.

#beatingcowdens

Blessings and Sorrows….

Blessings and sorrows are not mutually exclusive.

Disappointment can exist alongside gratitude.

You can have hope while being grounded in reality.

Faith doesn’t mean you’re never sad.

Laura Story wrote the song, “Blessings” many years ago.  It is a song that has played on repeat during a few of Meghan’s hospital stays.

The chorus,

“Cause what if your blessings come through raindrops?
What if Your healing comes through tears?
What if a thousand sleepless nights are what it takes to know You’re near?
What if trials of this life are Your mercies in disguise?”

 Is full of seemingly opposite concepts.  Yet so often through our rare disease journey, and our Cowden’s Syndrome mountains, and Ehlers- Danlos obstacles, this song has just made sense.

And now, during this time of pandemic and isolation, and anxiety it resonates even more.

We are freakishly accustomed to isolation.  Passing through surgeries and rehabilitation, and hospitalizations and illnesses as if they are as normal as a traffic light on the corner of a city block, means that you look at things a little differently.  Any time not spent recovering is seemingly spent traveling to and from appointments that yield little besides new appointments.  And yet, their very existence can consume every spare moment.

Cowden’s Syndrome is a constant “flashing yellow,” a caution sign, so to speak.  It is a blessing that we are equipped with the knowledge that as a people so susceptible to a variety of cancers that we must pause to aggressively screen,often twice a year, for our most sinister well known risks, (breast, thyroid, uterus, kidney, colon, skin…) and that we must investigate each new bump or lump, because you just never know.

And yet that blessing comes sometimes through raindrops, of plans foiled, and journeys rerouted.   All worth it if we have remained as we say, #beatingcowdens.

COVID-19 has rerouted most of the world this spring.

And we have learned.

We feel.  We laugh.  We cry.  We sit still.  We take walks.  We eat together. We pray.  We read.  We pet the dogs.  We sing.  We celebrate.  We mourn.  We watch TV.  We act with caution not terror.  We care about others. We read. We learn.  We talk to each other.

We “attend” church weekly for the first time in YEARS, as we have a church too many miles from us with a message we deeply need, suddenly available in our living room.

We did not pass a single graduation sign without a moment of empathy for what the graduates missed.  We celebrated every birthday drive by with loud honking horns.  We sent virtual cards when the store wasn’t an option.  We thought about sports events and recitals and parades and everything someone, somewhere had their heart set on.

We talked about everyone missing something. Every house, on every street had plans interrupted, and life rescheduled without warning. “Everyone has something.”

And in the most unusual way, for the first time in a long time, we felt a camaraderie with so many.  Everyone’s life was upended.  Everyone’s.

Don’t misunderstand, I’m not happy about any of this.  I just feel like it is easier to talk to people.  That may sound odd.  But currently people “get” isolation a bit better than before.

As swim season cut short days before a college showcase she was prepped and ready for, it wasn’t just HER.

As the SAT, and ACT play miserable games with enrollment and dates, she is united with the class of 2021.

Remote learning was… well I’ll just leave that there and say, necessary based on the state of NY in April.

We saw a 20th anniversary celebration derailed.  And yet, we had the most incredible evening.

I cancelled tickets to my first solo journey, a PTEN conference that was to be in Boston.  But, I celebrated the fact that this time I actually WAS going.  I will get to the next one.

I took the refund for the missed Billy Joel concert.  It took 2 decades for me to get the nerve to want to attend any concert again.  It may take another 2 before I want to be in a crowd that large.

Disney – our August safe zone for 12 summers is cancelled.  There is no way I could do it under these conditions.  Just none.

There were tears cried for all of the above.  But, there was also the awareness of gratitude, for health of family and friends, for two secure paychecks, and extra time with two adorable dogs.

The maintenance appointments are beginning to get caught up.  Some have been live, and some virtual.  I am undoubtedly excited about keeping some virtual medicine where the visits will allow. So far we are all faring well.

We are staying close to home.  We are choosing our interactions wisely.  We are choosing not to be crippled with fear, but rather empowered with logic, faith and compassion.

And when we head out into the world we mask.

We look daily at COVID numbers around us, and quite frankly they are disturbing. Locally we are in good shape now.  But things change quickly.

We spend these days enjoying sunshine.  We are in gratitude for a beautiful yard, and thankful that swim practice has begun again.

I promised to not complain about the 5:45 AM wake ups. And I’m trying to be true to that.

We have real conversations here about a fall schedule, without letting it overwhelm our days.  We talk about scenarios.  Her sport is a fall sport and it grows increasingly likely that her Senior season is in jeopardy.

We have conversations about school.  We know that we want to return.  But we do not know if it will come to be, at least not right away.

We have summer goals.  They are different this year.  And maybe that’s not always a bad thing.

We allow ourselves to feel every emotion here.  And for us, it helps.

Whether you’re fighting a rare disease (or two) or wrangling a teenager, now more than ever we are one.

Forgive yourself.

Blessings and sorrows are not mutually exclusive.

Disappointment can exist alongside gratitude.

You can have hope while being grounded in reality.

Faith doesn’t mean you’re never sad.

#beatingcowdens

 

  • completing my first post from my iPad on the couch as the FOOT recovers from some pretty extensive, non Cowden’s related surgery.

Adapt.  Onward.

I’m not afraid of the dark, and other COVID-19 revelations…

For Cowden’s Syndrome patients, there are surgeries.  There are different kinds for different people.  But, inevitably there are surgeries.

When most young people talk about being afraid of the dark, many parents dismiss their concerns.  They put a night light on for a bit, and they tell them there is nothing to worry about.  Because for typical children, “dark” is that brief time in their rooms before they fall asleep.

But, if you have had about a surgery a year from the time you were too young to fully comprehend the gravity of the tumor causing condition you live with…  the “dark” also comes awaiting anesthesia on an operating table in a cold room full of strangers.  The “dark” always comes after an uncomfortable IV placement and hours of waiting your turn, thirsty and hungry.  The “dark” always comes before you wake up in inevitable pain.

The nightlight in my teen’s room came from scraps her dad collected at work.  Really cool scraps.  And since he’s an electrician, adding the LED was easy.

That light has been in place as long as I can remember.  It provided a gentle glow when the nightmares from the PTSD triggered by one too many manually induced episodes of “dark” would provoke relentless nightmares.

It lit the room for the years my presence was necessary to get past the falling asleep part.

You know, that in between place between awake and asleep…

That time when all the thoughts you try to push away find their way in…

And then the dog took my place, the dog and the light.

But bad hips made it tougher for the dog to remain a soothing, breathing presence in the night.

So in January we got our older girl into a bed downstairs and we found a shelter dog at the Brooklyn ASPCA.  He was abandoned.  Tied to a tree in a park.  He was about 6 months old and in dire need of love. (and structure, and training, but MOSTLY love)

April, our older girl welcomed him right away.

About a week into his stay in his new home, Jax curled up on my girl’s bed and fell asleep.

Turns out he is soothed by the breathing of another too.

This week after MONTHS of being home my girl told me it was time to take the nightlight down.

“I’m just not afraid of the dark anymore.”

People who haven’t lived our lives will say – ‘It’s about time’  But, she and I know it’s time, when it’s time.

So many things have happened these last few months during this COVID-19 crisis.  Maybe the most remarkable is the family time we’ve shared.  We have learned even more about each other, all three of us.

She asks tough questions, of herself and everyone she speaks with.

She holds herself to the same standard she expects of others, and truthfully those standards are so high she’s often disappointed.  It’s a balancing act.

She is driven.  Focused.  Loyal. Compassionate.

She managed a 4.0 AGAIN.

I will pass Tinkerbell off to another beautiful girl, and hope the Pixie Dust blesses her dreams.

“I’m just not afraid of the dark anymore…”

My beautiful girl, with your heart and God’s grace you will change the world.

As for me, I’m not quite ready to part with my nightlight, as we remain…

#beatingcowdens

What about the crayons?

The questions were simple enough.  “What about basic supplies?  What about the laptops?  What about the crayons?  What about the things multiple hands touch over a short period of time every day?”

The man at the end of the call asked the questions of the teacher’s union president.  It was following a discussion of what we will need to do to safely re-open schools in what many hope will soon be a post COVID-19 world.

The call was 5 days ago.

I have asked myself “What about the crayons?” innumerable times since I heard this teacher ask.  The union president was stumped, but to his credit, collected this teacher’s contact information to add him to future focus groups.

There is so much we just don’t know.

I have tried to stay present, not to stray too far from the moment.  I have tried to remain in an attitude of gratitude for my ability to work from home, the health of my family, and our financial stability.

But, my mind strays from tragedies, milestones missed, and seasons not played, to an uncertain future.  We receive conflicting messages daily, through multiple elected representatives, doctors, and ordinary citizens.  Everyone feels adamantly one way or another about a variety of issues.

But, what about the crayons?

It’s a basic enough question, that may seem like no big deal if you haven’t spent the last 23 years in an elementary school.  It’s the kind of question that will easily be brushed aside regardless of how many times it’s asked.

But, maybe it’s one of the most important questions.

Through the years of teaching I have seen a lot of changes, and I have not always embraced them willingly.  Some, I would argue still, are pure nonsense.  Others have made me a better educator.  In reality, like so many other things in life, what I agree with is not wholly relevant.

When I started teaching we had desks.  Students had desks.  Teachers had desks.  Everyone had their own supplies.  Students largely worked alone.  Slowly, there were times it was appropriate to do “group work” where we would move desks together for collaboration, only to later return them to their original separate space.

Through the years, desks became tables and teacher’s desks were eliminated.  There were bins on tables for shared items.  Books were kept on shelves, and folders kept in bins.  Everything required a monitor to hand it out.  The tables were 6 sided, making separating children a challenge, you know, for those activities that shouldn’t be done in groups.  So we added “dividers” also stored, and distributed as needed.

Slowly, desks have made a comeback, as everything old is new again, and supplies are often kept in the desks for the older children, but many of the youngest still work from tables.

We are supposed to teach them to collaborate.  We are supposed to teach them to work in groups.  We are supposed to teach them to get along, in addition to, well, TEACHING them.

About 10 years ago I shifted from teaching in a classroom of my own students to teaching as a “cluster” teacher, in a position to provide preparation periods for the classroom teachers as per our contract.  I serve as a math cluster, a position many see as odd, but one I love.  My role in this position is to help all children love math.

I have evolved over the years from a hesitant, controlling teacher, to one who embraces productive student noise and activity. Although I see students from kindergarten through 4th grade, my room still has those six-sided tables.  Most lessons are hands on, using everything from play-doh, to stamp pads, to puzzles, to counters, to fraction bars and many more.  My children share pencils, 12 at a table.  They also share scissors, and glue, and rulers, and hundreds charts, and teaching coins, and that is only some of what is in every table bin.  As 5 classes a day, 25 classes a week, and roughly 600 students a week sit at my tables and handle my math tools, monitors count and keep order.  Desks are washed often and hand sanitizer flows freely.

But, there is no part of me that thinks it’s enough.

The giggling joy of children battling number facts, playing dice games, building numbers with play-doh, and solving number puzzles together has become a sound that I truly enjoy.  My room is noisy, active, and largely fun.

It’s a stark contrast to some other aspects of life.

I take seriously the task to encourage a passionate love of math.  I am thrilled to be a safe space, where tests are minimal, informal assessment rules, groups are fluid and the majority of children get to feel successful.

Maybe I learned how important that excitement for education was after our Cowden’s Syndrome diagnosis in 2012.  Something about surviving a sneaky cancer, and watching your own child lose a good deal of innocence on exam tables, and in operating rooms, makes you more in touch with the value of “productive, happy noise.”

My girl was in 3rd Grade when we were formally diagnosed, but in truth she has ALWAYS been dealing with health issues.  I watched her elementary school experience.  I know as an only child with two working parents, largely unavailable to meet others to play, social isolation came early.  I know she had tons of alone time, and subsequently too much adult time.

I know the teachers that changed her life for the better, to whom I will be eternally grateful, and I know the ones who just changed her.

She never liked math.  I could always get her to understand, but it made her nervous.  It still does.  She never “played” math.  Like so much else, it was a task to master, not an experience to have.

Maybe because it was easier to read during the hours of waiting, in traffic, in offices, in hospitals, and during recovery.  Or maybe because it wasn’t fun.  I’ll never know.

She never really handled crayons much either.  Or math tools.  And she was allergic to the wheat in the play-doh….

So, I set out to make my math room a place that could maybe change the perception of one kid.  Maybe I could help one kid believe they could be good at math, or that math was fun.

I have a system set up.  There are 5 bins of every math tool you can imagine.  When they need crayons there are three fresh boxes poured out into bins that match the color of their table baskets.  The older kids usually have a focused lesson in different levels.  The little guys often rotate through a few activities to keep them moving and keep things developmentally appropriate.

Which brings me back to the crayons.

As my colleague on that call pointed out, it was laptops, crayons, and everything in between.

It is my entire program.  It is all things hands on and developmentally appropriate for our youngest learners.

No one knows.

I have had many sleepless nights since we began

#beatingcowdens

Very few things leave a mom as unsettled as her child’s health.

But, a close second might be asking a primary teacher, “What about the crayons?

 

 

 

 

Connected…

I was staring at the screen looking at 14 other mothers.  Women who have at least one child with the same PTEN mutation my girl and I have.

A quick scan of the “room” on this Zoom call showed me newly diagnosed, seasoned veterans, moms of teenagers, and moms of toddlers.  There were some mother/child combinations, and some with “de novo” or spontaneous mutations.  We lived mostly in the US, although one joined us from Australia.  Even as I watched my screen and jumped in to the conversation where I could, my mind was racing.

I “know” at least a few dozen more PTEN moms, and yet, Facebook algorithms being what they are, the call notification didn’t circulate as widely as it could have.

A few of these moms “know” us from this blog.  That was flattering and mind-blowing simultaneously.

It was like a “first date” with old friends-ones who I’m not likely to meet in person any time soon.

Listening to each one talk I wanted to spend hours with them.  I wanted to hear their stories in intricate detail.  I wanted to know about overlaps and differences.

Each story made me feel like I could fill out a giant Venn Diagram.

As moms I am sure some of us are alike, and some different.  In some cases if we lived nearby we might be the best of friends, and in others mere acquaintances.

Yet I felt an instant bond with every single one, and as I am notoriously terrible with names I admit even writing a note or two next to some names to help me remember their story.

We all had a common desire to be heard, and to hear.  We wanted to be heard by our children’s doctors, which with only 2 notable exceptions as locations seems to be a coast to coast failure.  And we wanted to hear other stories.  We wanted to feel less alone.  We wanted to know what happened with other people’s children.

I think on this call my girl was the oldest at 16.5 years, but there were others who had been diagnosed longer, as she was already 8 when our diagnosis came in 2011.

I had plans to attend the PTEN Foundation Symposium in Boston in May.  My plane tickets were refunded this week. I had hesitated canceling even though I knew for weeks in my heart it was not to be.  I hesitated because I was just so excited to meet some more moms like me.  Moms who have spent their child’s entire life being detective, advocate, voice, cheerleader, motivator, educator, and have earned their own type of medical degree from decoding research they once thought was impossible to understand.

I know there will be other gatherings, and I am grateful to the PTEN Foundation for that.  But, the need to connect runs deep.

I wonder why I feel so compelled now to meet others.   I have been doing this quite a few years with only a small handful of PTEN moms.  And truth be told I’ve been advocating for this kid’s medical mysteries since 2003!

I just saw this shirt pop up in my newsfeed.  I’m well aware of how deeply ads are targeted to us personally.  And it definitely is true.  I am by nature more introverted, especially in large groups, finding it easier to write than speak.

Except lately I miss people.  Not all people. Don’t worry I haven’t totally lost it yet.  But, the kind ones.  I miss the kind ones.

Something about a pandemic can help you reevaluate the importance of connection.

My family of three has spent so much more time together than we have in a decade. It has been a blessing in this difficult time to reconnect.

I have spoken to a few more old friends too.  Previously we were too busy to text, and certainly too busy to call.

I have learned how easy it is to Zoom, and FaceTime. I know now the value of face to face contact – even through a screen.

I have to ask myself if in a different time I wouldn’t have made an excuse not to get on that call.

In my heart I know the answer.

And I’m grateful for the forced lesson in the value of connection.

#beatingcowdens

#strongertogether

Pandemic Got Your Tongue?

NYC #COVID19

NYC #Covid19

There are things you could do without ever experiencing.  Clearly #COVID19 is one of them.

I live in NYC.  I have lived here every one of my 46 years.

I was born and raised here.  I graduated from public school, SUNY and then CUNY.  I work in the elementary school I graduated from.  I have lived in the same zip code pretty much my whole life.

I watched my local community rise up many years ago when my young cousin battled Leukemia.  I remember that, even over 30 years later, whenever a neighbor I don’t know is in need.

I watched my local community, many aspects of which were decimated by the horrors of 9/11, rise up in indescribable ways.

I watched my community draw together again after Hurricane Sandy wiped out neighborhoods.

We worked together.  We prayed together.  We loved on each other.  We gathered together.  We shared what we had.

I live amongst compassion, bravery, dedication, resilience, tragedy, and grief.

I also live amongst some selfishness, stupidity and inflated senses of self importance.

The greatest city in the world gives you all that and then some.

Despite having a small social circle, I am a mother, a wife, a daughter, a granddaughter, a sister, a niece, a cousin and a friend.

I am a patient with a PTEN mutation called Cowden’s Syndrome.

I am a cancer survivor.

I have a teenager with 2 rare diseases, and a brain that runs 24/7.

We are immune compromised.

I am a NYC Public School Teacher.

My husband is an essential worker.

Daily the news reports are often silenced in my house.  I know what’s going on around me.  A few numbers across a screen give me what I already know.  Hope of blossoming spring has been muted by tales that nightmares are made of.

I spend the days trying to remotely engage young minds in math games.  It is, if nothing else, a welcome distraction.

Suddenly, this community that does so much better when we can gather together is isolated.

Our friends are sick and dying quickly.  To much of the country and the world they are numbers.  To us they are humans with names and families.  We can not visit.  We can not comfort.  We can not gather.  We are leaving our loved ones at the emergency room door, praying we will see them again.

We, alongside the whole world, are fighting a virus that seems to have a strangle hold on my home town.

People like to make themselves feel better, but the truth is this virus does not discriminate.  We can barely even find it, let alone attack it.

We are chasing it.  It clearly has the upper hand.

We have been told to #flattenthecurve but, I fear the sheer numbers of us make this so much harder.

My husband comes from work removes all layers, scrubs, showers, washes all outer garments.  He gave up public transportation to reduce his “touch points.”

We are grateful for the home we have.  We are grateful for each other, for the internet, for Zoom and FaceTime, and virtual church.  We are grateful for washing machines and space, and luxuries never to be taken for granted again.

We are grateful for computers that allow for everything from Advanced Biology to voice lessons and test prep.

We leave for 2 walks a day at off peak hours.

The stores I used to walk in and out of because I could, are saved for when lists accumulate and there is need.

We order food a few times a week, a calculated risk carefully played out because the restaurants that have openly supported our fundraisers through the years, deserve our support now as well.

The schedule has slowed from its chaotic pace.  Swim season just isn’t.  There is no college search right now.  Doctors are cancelling, and rescheduling.  Routine check ups are on hold.  And honestly I don’t mind.  Even this chronically painful foot is waiting its turn while really important things happen at the local hospitals.

We take this call to social isolation really seriously here.

Selfishly, I might even enjoy a little of this forced family time.  A year from now my girl will likely have her college chosen and be starting her transition out of our nest.

Having Cowden’s Syndrome has done a lot of work on my perspective through the years.  I’ve learned that you can’t keep waiting for it to be over.  That’s true of everything in life.

A dear friend has told me often, “You can have it all, just not all at the same time.”

You have to live each day, from beautiful to unspeakable.  It is the only way to preserve feelings of compassion, empathy and focus on the greater good.  You must laugh and cry, and scream and yell, and feel all the feelings.

I have scanned 3 and a half years of letters Pop wrote to Grandma in the years he was deployed during WWII.  Those years preceded a marriage that lasted over 70 years.  I think of them all the time, but even extra these days.  I think about how hard it would have been to socially distance from them, but also about the lessons they could have taught all of us in patience, resilience and sacrifice for the greater good.

I’ll use some of the next days to read every one of those letters before uploading them to create a hard copy to be shared in my family for generations.

There is a lot to be learned from the “Greatest Generation.”

Sometimes I get angry at flippant or arrogant folks I see, in person or on the news.  The people who think they are too good, or exempt from this global pandemic.  The people who don’t think they have to do their part.

Then, I decide to focus on the overwhelming number of people who are doing whatever they can to make this better.  All those essential workers we learned about in the first grade unit on “Community Helpers” are the ones I focus on with gratitude.

I am not better than this virus.  I am just as susceptible as the good people across the globe who are struggling with these infections.

I isolate not out of fear, but out of respect.

I isolate out of respect for those who can’t.

I isolate out of respect for our first responders and essential workers.

I isolate out of respect for those who are living with this virus.

I isolate because maybe one less person will get infected because I did.

I miss the way our city has come together in all other times of tragedy.

I miss hugs, and offering comfort and being comforted.

I will message the people I miss so much, and check in on them.

And, instead of complaining the time away I will spend more of it in prayer for those who need very much not to feel alone, reaching out through the technology I’m blessed to have, with gratitude that if I am forced to isolate I have a comfortable home and a few of my best friends to be with.

Jax is a welcome distraction.

Sweet April

#Family

#Flattenthecurve

#COVID19

Still #Beatingcowdens

 

 

 

Rare Disease Day- Video Recap

Rare Disease Day Video Flashbacks…

This year World Rare Disease Day is Saturday February 29, 2020.

As we prepare to do what we can to raise awareness of Rare Diseases… I’m reblogging this post with some videos Meghan created as a younger person with Cowden’s.

Keep in mind, the most recent here was 2017.

ENJOY!

beatingcowdens

World Rare Disease Day is February 28th.  People all over the world will work to raise funds and awareness for over 7,000 Rare Diseases worldwide.  In our house things are buzzing, as we prepare to teach the world a bit more about Cowden’s Syndrome.rdd-logo-2

There will be so much time to write.  Soon.  Right now we are preparing for Rare Disease Day 2017 and “Jeans for Rare Genes 3.”  All the preparing brought me back to her video from last year.  And then I looked at the year before, and the one before that.  And I was struck by how much she has grown, not only in her technological ability, but also as an advocate, and a voice, and a human.

There will be no video this year.  It was time for a change of pace.  But, I thought it appropriate to post these here, now.  She keeps me grounded…

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