Parallel Truths

Published on December 31, 2021December 31, 2021 by beatingcowdensLeave a comment

This is the day when we often sit and think about sad things. It is a day we often reflect on all the reasons we can’t wait to be done with the current year, wishing better for all in the next. I have not blogged much this year. Mostly because I don’t like to write when I am in a negative headspace. You can infer from that whatever you’d like…

So as I sat down to wish away 2021, I remembered many years ago when Meghan and I used to practice ‘flip it.’ And while sometimes, yes, it was a matter of literally flipping things “the bird,” often it was a lengthy conversation about how we can take the unfortunate circumstance and flip it to our benefit, at least mentally.

This is a careful process because we abhor toxic positivity. Some things just stink. The end. Little is more frustrating than dealing with another appointment, injury, procedure, test, and so on while having someone tell you to look on the “bright side.” However, we have found through years of digging reflectively that life can hold “parallel truths.” This was easier for us to process. The truth that upsetting and sometimes painful or tragic circumstances exist and need validation can be accompanied by other things happening simultaneously that are full of blessings.

2021 for us was definitely a year of Parallel Truths. While covid changed, abbreviated, or eliminated so many things, we grew. We grew as a family and individually. We grew in our faith. We grew in our resilience. We grew in our convictions, and most importantly our love and respect for each other. While I can say I wish the pandemic had never been, I can also say that God was active and at work in our lives this whole year. Parallel Truths.

January brought us on a cross-country road trip. Meghan and I traveled to Indiana so she could finally be paired with Ella, her long-awaited service dog. It was hours in the car, time to talk about all things and just be together. The drive was incredibly long. Yet, we shared laughs that were also endless.

In February, while still holed up at home, with no indication of when the in-person senior year would begin again, my girl finalized her college commitment.

March brought Covid right into our house and knocked out Felix harder than any of us had dared to imagine it could. The “healthy” one was out of commission for a solid month, with 6 of those “covid pneumonia” days being in the hospital on oxygen.

When he was well enough, he began to learn his “Cricut” machine and slowed himself down. My OCD had me throw away our mattress (yes I KNOW it was irrational) and kept us as a party of three for Easter Sunday in April.

In May, during a year of teaching remote 4th grade, for more hours a day than I even like to recall, the most delightful surprise came to my front lawn from families that made every hour of that school year worth it. I have never in my almost 25 years worked harder. And I have never been so appreciated by a group of students and families. Again. Parallel Truths. As much as I missed my own family during those long days and nights, those 29 faces will be a part of my soul forever. We lived through it… together.

May also took our beloved April dog, our rescue of 6 years from us quite suddenly. April was the girl who kept Lucky going after her “sister” Allie died in 2014. April was the sweetest. Our “vanilla.”

And May, as things began to slowly open brought joy as well. Meghan, who had through circumstances simply beyond her control, been without a church for quite some time, found her way to the Evangelical Lutheran Church of America, the church of my childhood, and of her baptism. She connected with Uncle Eric, a Pastor at the time at Good Shepherd Lutheran in Plainview, and spent a year of Confirmation classes on Zoom to receive her Confirmation in May. It was a culmination of so much, and an absolute intentional public confirmation of her baptism. It was something she so badly wanted to have done before college. Humble gratitude.

June brought graduation that was in person, from the stands on her school’s football field. I was ecstatic that there was an in-person celebration at all, and even more thrilled to have the early session on a hot June day.

July brought us to Disney and proved to Meghan and Ella that they make a heck of a team. We were impressed time and time again by them, further reinforcing that it had been worth the wait.

August was full of packing and preparing. Anxiety and uncertainty were palpable. Yet – they were ready. My full Mommy emotions are in this post. “Beating Cowden’s Goes to College” https://beatingcowdens.com/2021/08/25/beatingcowdens-goes-to-college/

A mother/daughter tattoo of the ASL “I love you” sign that we have shared since the kindergarten bus got us a little extra ready, and then she was off.

September and October mashed together as we all settled into our new routines. There were some poignant goodbyes as she shed some of the weight of many years of being on the “outside” of life. There were some amazing “hellos” as friendships began to form, trusts began to build, and laughter could once again be heard. Fall break was at just the right time, to nourish her belly and our hearts. Fall swim left us able to watch live competition for the first time in ages.

November brought a dear sweet Cowden’s sister and her husband to dinner with Felix and me.

It also brought Meghan and a lovely Canadian friend home to spend Thanksgiving making their way through NYC.

Facetime conversations at college often looked like this.

Christmas magic brought her home for only a short time, as winter training is a real part of swimming. And between the lights and the magic and the peace of being just far enough away from home, Meghan and Nate found each other this fall, and a smile I have not seen on my girl’s face for 10 years has returned.

2021 had its downs. There were plenty. I don’t take pictures of them. My sister and her family were called to a church across the country, and on a short amount of notice, they packed their lives to once again be a plane ride away. I miss them.

There were medical appointments, and even an ER visit last week. There is a chronic foot injury that has been relentless and unforgiving. There are plenty of things that were lost, interrupted, and abbreviated.

Yet, I have to focus today on the parallel truths. In our house, there were real and important blessings this year. Maybe because we finally had to sit still long enough to appreciate them? I’m not sure. As the days and years go by I am reminded almost daily that there is no promise of tomorrow on this earth.

As I head out every day I do my best to follow Grandma’s rules:

“Before you speak, think. Is it true? Is it necessary? Is it kind? If not, just KEEP STILL.”

This world is on its ear. All I can do is practice the same grace given to me daily.

And today that grace came in the form of a 14-month-old coonhound mix who we named “Buddy.” He was rescued from a local organization a few hours ago and has already brought us all joy.

Blessings to all for a beautiful 2022!

#beatingcowdens

Covid in the House

Published on April 4, 2021April 4, 2021 by beatingcowdens5 Comments

Sometime early March I had decided I was going to schedule a vaccination against Covid-19. I am not sure what made that decision crystalize. I have been teaching 4th grade remotely this year, deemed “high risk.” I have spent a large portion of the last year in my house. But, not the whole year.

I have ventured to grocery stores, and even to visit a handful of family members. We took a cautious trip to Indianapolis to pick up Ella in January. But, largely my winter coat is barely dirty and my biggest excursions were around my first floor, or to play chauffeur.

The decision to take anything, a medication, a supplement, or a vaccination, is never made lightly here. We have seen the real effects of all things on our bodies, and we are cautious. We walk a fine line of risk/benefit analysis which can be exhausting.

I live and work in a suburban community near the heart of New York City, where the rules keep changing, conspiracy theories run amok, and liberals and conservatives are often so focused in their own views that no one sees a middle ground. I live in a city that a year ago rushed to close everything, that never tried a gradual opening, and now, a year later sits with numbers that are pretty much exactly where we were last year.

Numbers that if you ask me, are still disturbing.

We are exhausted. We are in dire need of normalcy. On this my neighbors and I agree.

So, as the weather started to show signs of spring and I drove past droves of unmasked clusters of people everywhere, I committed. I understood then that for me, the risk/benefit had been decided. I would get the vaccine to try to protect myself from what felt like inevitable exposure as local numbers continued to climb.

I have long since given up rational conversation on this emotionally charged, over politicized, yet very real health issue. You might be surprised in a conversation with me to learn where I stand. You might assume you know. You’d likely be wrong. But, I digress. If you ever want to chat it out like grown ups, we will FaceTime, or zoom, or sit on my deck. Whatever you’d like.

But, like all of the best laid plans, my plan to vaccinate came to pass a little too late.

As I was seeking an appointment at a site closer to my house, I came to learn that securing an appointment for a vaccination rivaled seeking concert tickets for my favorite artist back in the day. I kept it open in a browser window for almost 2 weeks.

On March 12th I was 6 days into a self imposed “Facebook Break,” exhausted by the some of the drama I was struggling to scroll past. And, if I might add, just generally exhausted.

Felix came home from work that night and just did not look well. He was a little warm and tried to tell me that he had a bit of food poisoning from a bad turkey sandwich. I sent him to bed with 2 tylenol. He asked if I was coming. I carefully set my bed up on the couch. I knew. I just knew.

By the next morning I arranged a covid test for him and was far less than surprised when he was positive on the rapid, and already symptomatic. Meghan and I tested negative later that day, with a PCR sent out to be sure. He alerted his shop that he was positive and would be out of work 10 days. We set ourselves up to quarantine. I was internally terrified.

We geared up with lysol wipes, hand sanitizer, double masks and the like. We separated as best we could. And, even as no one in his shop came up positive, he was certain NYC Transit was likely his exposure spot, as unavoidable as it was. He was doing ok. We thought it was going to pass through as no big deal. Right through Monday we were even ordering dinner.

Tuesday Meghan didn’t feel well. Aside from some minor stomach upset I was feeling well. But, I decided to take us both to be tested again. As we were waiting for the rapid, the initial PCR came in negative. And, almost as soon as I was swabbed my rapid had a positive. Meghan’s followed a few moments later.

Tuesday night, we called the doctor for Felix. But, they don’t see covid patients. They don’t have video visits. Just a phone call. They ordered a lab panel. But, the earliest appointment to get the labs drawn was still a week out. No one was willing to help. They wouldn’t give him any meds. We were on our own. Maybe I should’ve known the office would respond this way. But, I didn’t. And honestly, 10 years into this rare disease world, my expectations of the medical community are quite low. Sadly, often with good reason.

Tuesday, Wednesday, and probably Thursday I cried an awful lot. This is the kind of thing that everyone wants to “help” with, but you can’t bring a single person anywhere near you. As I yanked on my big girl pants and did my best to keep things together. I shortened my day and taught my class each morning, figuring I needed them as much as they needed me. Plus, there are no subs in this remote world. So, I thought moving all that air around just might help my asthmatic lungs.

Meghan slept most of the time and she and Felix felt terrible. By Thursday though, youth was winning and Meghan was coming around. Felix, on the other hand seemed worse. He just couldn’t get around much at all. He was having a hard time eating just about anything. He was having a hard time walking from the bed to the couch.

In the spirit of keeping things interesting April, our older dog had surgery on Friday the 19th. It was a full disclosure surgery with next to no exposure on hand off Thursday, and pick up Saturday.

I can not begin to recreate the weekend. It just happened. One minute at a time.

Maybe I should have been afraid earlier. Maybe I should have pushed earlier. Maybe our doctor’s office should have stayed in touch. But, eventually we knew what had to be.

I brought Felix to the Emergency Room on 3/24, 11 days after his positive test. That was a hard ride. I left him with his phone, a charger, and a copy of his health care proxy paperwork. I pulled over to gather myself a few minutes outside of the facility and he texted me he’d be there “at least a few days.”

I heard a lot of things in my ear the next few days, the most helpful came from my pastor, my brother-in-law, who by virtue of this remote world has been able to fill both rolls for us here. Mostly though, Meghan and I just functioned.

The fear had been for us. The fear had been for me with my asthma. The fear had been for Meghan and I with our Cowden’s Syndrome. The fear had not been for our larger than life Felix. The one who NEVER EVER got sick. And yet, there was the world, on its ear.

Felix came home on Palm Sunday. We will all get more lab work than usual the next few months. We will hope this thing is not going to stick around to make life more complicated. But, as with all things, you just never know.

So, this virus is not nothing. That we can tell you.

What to do with that information is really not an easy thing. Nothing is linear. There are no simple answers.

What I can tell you is that it looks a lot different inside your house.

It was hard to tell our parents we weren’t doing ANY indoor gatherings right now. It was hard to tell them we were not adding any more risk into anyone’s world. It was hard. It was uncomfortable. Because we had gotten VERY comfortable taking few, if any precautions with our families. Fortunately, it worked out. I shudder to think…

We are exhausted. We are healing. We are grateful.

We believe in God. And we believe in prayer.

And I can tell you this virus, however you want to feel about it, is a potentially deadly weapon.

We won’t be clear for our vaccines for a few weeks.

We will be on line and ready. Because if this thing comes after anyone I love, I HAVE to know, I did EVERYTHING I could to stop it.

I can tell you for sure after Covid in the House – it is a different perspective here….

Happy Easter folks! And, nope, we do not iron when we’re home alone! 🙂

#beatingcowdens

Remote Teacher…

Published on February 25, 2021March 6, 2021 by beatingcowdens2 Comments

My heart aches for the kids. Everything about my mom self is so painfully aware of what they have missed. There is no age group, from Pre-K to College, that has not suffered great loss. I have no answers. I have only thoughts about children in their living rooms, staring at screens, and thoughts about children learning masked in gyms and auditoriums. I hurt for their parents that had to decide which horrible option was better, and for the kids who fear things that are too heavy to be carried on young shoulders.

I cry real tears for my senior. My class of 2021 girl who has no real way to celebrate her full scholarship to a private university. There have been 12 days of school, since March of 2020. There will be no prom. I am not sure that there will be a graduation. I find it unlikely there will be a yearbook.

Global pandemic.

I get it. I truly do. Nothing is as it should be.

But, I have to talk about something we don’t talk about enough.

We are angry. We are looking for a place to but blame. So we throw it around anywhere we can. And often. Way too often. It lands on the teachers.

I know. Before you stop to tell me. I know. I know about the teacher who logs on for 30 minutes a day. I know about the teacher who doesn’t know her student’s names. I know about the one who is in Aruba. Teaching on a beach. I know.

But the ones we don’t talk about are the other ones. The dirty little secret of the educational debacle that is this pandemic.

There are so many teachers that have gathered all their resolve and put themselves in front of a camera every day. There are teachers who sit at that camera from 8-2 with minimal breaks, and then turn the camera off only for the real work to begin.

Sometimes we need to talk about the teachers who had a change of assignment so drastic they had to relearn curriculum for things they haven’t taught in over a decade. Those are probably the senior teachers. The ones that don’t cause trouble. The ones everyone is sure can handle everything.

Those teachers probably began the year with student copies of books that their kids don’t have. So they can take pictures and post slides for the kids to follow along, while they lecture students on things that really will only sink in when they are demonstrated, touched, and played with.

Those are the teachers who didn’t know what Google Drive was. Who taught themselves through YouTube videos. Those are the teachers who then taught the kids to navigate a digital notebook. In a house where they aren’t allowed to print. And no one is home. And their grandparents want to help, but they don’t know what to do. And the language barriers preclude even a conversation with an adult in many cases.

Those are the teachers setting up science experiments at their desks. Under a subpar document camera they bought on Amazon while creating google forms, and slides of everything.

Those are the teachers who are trying to make things easier for the kids while checking on the mental health of those same kids, which their heart and their mind and their soul and their eyes tell them is failing.

Those are the teachers setting up virtual classrooms and trying to motivate kids in any which way they can. Those are the teachers who feel like they are teaching in shackles.

Those teachers. The ones trying to make it ok, they hear you.

They hear you when you talk.

They hear you when you say to stop paying the teachers. They hear you when you malign and belittle an entire profession for the sins of a few. They read the words because they are so cut off from people. Until they sometimes have to just turn off the news and the social media and isolate themselves further.

They hear you. They see you.

They don’t answer you. Because they are sitting. At their computer.

Ignoring their health. Many are where they are because of very real health issues.

They are tired.

They are neglecting their families. And doing what they can to save the children in their care from the loss of an instructional year.

They are there for HOURS. Reading the words your children type. Providing the feedback your children need. EVERYTHING takes FOREVER.

Those teachers are hurt. And they are hurting. They are in an impossible situation. They are lonely. They are alone. And they will not give up.

They would not want that for their own children.

They got into this profession to do better for the children. All of the children.

So I will leave you with a message from all these teachers. It is the same lesson we are giving the children. But, I think the grown-ups need it more.

Be kind. Always.

You know that teacher who you are really grateful to have in your world right now? Reach out to them and tell them.

Trust me. They need it.

They don’t need money. They don’t need gifts. They don’t need fame.

They need to know that their work matters. They need THAT fuel.

And, please. Stop. Think before you speak. Or type. We are all that we have.

#beatingcowdens

4th Grade, Zoom, and Searching for Balance

Published on December 19, 2020January 16, 2021 by beatingcowdens2 Comments

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

Published on August 9, 2020August 9, 2020 by beatingcowdens1 Comment

August 9, 2020

Dear Meghan,

HAPPY 17^th 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

Blessings and Sorrows….

Published on July 13, 2020July 13, 2020 by beatingcowdens1 Comment

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…

Published on June 19, 2020 by beatingcowdens1 Comment

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?

Published on May 18, 2020May 18, 2020 by beatingcowdensLeave a comment

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?“

Pandemic Got Your Tongue?

Published on March 31, 2020April 4, 2020 by beatingcowdens2 Comments

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.