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.

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