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

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?“

PTSD is real…

Published on October 28, 2019 by beatingcowdens4 Comments

I catch the judgments when I mention PTSD to even those closest to us.

I have the utmost respect for our military, and our servicemen and women. They are the front lines, defending us and keeping us safe. They experience horrors I could not imagine, and I am daily grateful for them. The PTSD many suffer is real and no one would ever question it.

But, just as l know that their’s is real, I am that sure it is real in my house too.

Post Traumatic Stress Disorder does not stipulate the trauma.

Some days I try to ignore it. I try to hide it. I try to work around it. I try to pretend it’s not there. I try to lean into the pressures of well-meaning friends and acquaintances alike that we should act “normal” so as not to marginalize ourselves. I hear the logical statements about fitting in. I hear them.

We talk about “everyone has something.” We are acutely aware that we are not the only ones that suffer. We are aware of our blessings. We share those blessings with others when we can. We listen compassionately. We are believers in the notion that, “If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.”

We are aware that we can be perceived as aloof, or detached, or disinterested. We are also aware that largely by circumstances and partly by our own design, we are alone. We haven’t really ever spoken to you about why… We try to listen compassionately. We try to be the people you need. We try to be lighthearted and positive when we feel like we are being crushed.

When the diagnosis of PTSD was first given to me as part of an analysis of my beautiful daughter’s response to the constant traumas that had shaped her life, I was physically ill. And then I was really sad.

And through the years I have tried to wish it away. I have tried to convince and cajole and distract. I have tried to rationalize. I have tried to blame myself. I have tried to be angry. I have tried to pray. I have tried to walk it off. I have tried to medicate it.

I have brought her to quality therapy. I have introduced medication. We have tried strategies. We have tried simple grit. We have never quit. And there is progress. But it is not easy.

I’ve been home a few weeks now with a foot that won’t heal. I am trying to put into play some things that have been on the back burner for too long. I am rediscovering my faith, and leaning back into the peace that has anchored my soul for so long. I am learning new things, like the operating system on a new computer. I am trying to find value in the waiting to heal.

I have also had some time to watch some old home videos, transferred from the portable video camera that was state of the art when our only child was born in 2003.

I look at some of those old videos and I laugh and smile. And I hear the purity and innocence of a life untouched by physical and emotional pain, and the cruelty of the loneliness that often surrounds both. And I laugh in spite of myself while the tears stream down my face.

We are strong. We are determined. We are compassionate. We are intense. We expect a lot from those around us, because we expect a lot from ourselves. We are often isolated, marginalized, and left to live on the edge of all things social.

PTSD, the elephant in every room.

You see the diagnosis of Cowden’s Syndrome was not the start of it. The first medical intervention was before the age of 6 months…

The years of hospitalizations, immune deficiency, chronic illness, food allergies, constant GI upset, speech, OT and PT services, led right into one surgery after another, with scans, doctors visits, and a few emergency room trips sprinkled in. There were arrogant doctors and medical staff, ignoring that we were literally walking through fire trying to survive. There were teams that would not communicate, and problems we had to try to solve on our own. There were well meaning people in our lives asking if she was “better” because they could handle nothing other than a positive in the midst of this crazy, wild storm we were living in.

The diagnosis at the age of eight formalized the fact that we were definitely different. It gave an answer while raising more questions and increasing the isolation, as parents scheduled play dates with children who became friends while we rode the FDR drive for hours after a day of work and school. They went to the mall, or to the movies while we headed to PT to bring that knee back from surgery 4,5,6,7,8…. It was inevitable that the divide would grow.

I told her she could do anything. And I meant it. I still mean it.

She is academically rock solid. She is an athlete. She is a good friend to those who let her be. She is thirsty for knowledge. She is insatiable in her desire to make the world better.

She’s also angry. And its hard to see it. It’s hard to feel it, and to watch it. But, it’s real. And it’s valid. As much as we were able to do for her, the basic joys of childhood were taken from her. From colic, to hospitals, to bullying so severe it almost broke her, to being just outside the edge of every circle or group… A week in Disney every year helps, but even the Mouse doesn’t have a bandaid big enough.

We stay busy. It is the best way. But sometimes it breaks down. This has been an extra tough week. There isn’t one reason why. It just is sometimes.

As I sat with her the other night and the memories of the most traumatic surgery turned my strong young lady back into a terrified 10 year old, I was reminded. PTSD is very real.

It is real when the medical world is overwhelming you.

It is real when the pain is chronic.

It is real when the thought of getting out of bed is just too much.

It is real when you need the dog close by to even close your eyes.

It is real.

It is also real when you’re the youngest NYS Woman of Achievement in 2016 at the age of 12, or being honored with a Humanitarian Award at 15.

It is real when you’re holding a 3.9 GPA.

It’s real when you are achieving best times at Junior Olympics.

It’s real when you’re laughing with your high school swim team.

It is real when you’re in costume on the stage.

It’s just flat out real. And most of the time you have no idea what it looks like. The costume is better than Broadway. The mask is strong, crafted through years of survival instinct.

It never goes away, and yet it takes over without notice at the most inconvenient times.

PTSD is not an indicator of weakness, but rather of strength. For living with it means you could have given up, but you are pressing on instead.

I’ve passed this advice to parents through the years who are new to our diagnosis.

“It is a lot to handle.”

Don’t underestimate.

It is hard to be kind to those who are different. It is hard to be with people who are sometimes just “a lot.” It is hard to care.

But the reality really is you just don’t know. You don’t know the struggles facing anyone you pass by on the street. You have no idea.

It’s neither a contest, nor a competition.

We are not perfect. It is harder when the hurt is in its most raw periods.

But, we have goals. And perhaps they go back to the “Golden Rule” of my youth. “Do unto others as you’d have them do unto you.”

That means you keep paying it forward, without expecting it to be repaid to you.

If we all, ourselves included, can remember that everyone has real struggles, and we can all focus on kindness, I’m pretty sure we can start real change.

One smile, one inclusive invitation, one held door, one kind gesture at a time.

“Be kind always, because everyone you meet is fighting a battle you know nothing about.”

#beatingcowdens

Rare -ER? More Rare? Where to Begin?

Published on July 23, 2019 by beatingcowdens6 Comments

A new diagnosis came our way this week. On top of the existing one. I have wavered between frustration and relief. I have felt some questions answered and developed a lot of new ones. My girl got her words together before I did…

*********************************************************************

My name is Meghan. I am a 15 year old high school student. I just finished my second year of high school in a place I love. I am an A+ student, who loves to learn. I am in all honors classes. I strive to learn and grow as much as I am able. I live, laugh and love. I hang out with my friends. I lay outside and tan. I take my dog for walks. I swim for a competitive travel team where I work my butt off in the water 6/7 days in a week. I improve. I grow. I train. To anyone who only knew me superficially, it’d seem like I was living the dream. I’ve got a couple close friends, good parents, a nice house, a dog who loves me. It’s perfect. Right? Wrong.

Here’s the other side of my life most people don’t know; I’ve got some shitty genetic luck. Because on the inside, I am far from an ordinary high school student with the perfect house and parents.

I was diagnosed with my first- yes that’s right, my first- rare genetic disorder when I was eight years old. By then I’d already had so many surgeries it was hard to keep count, and a bunch of random medical problems that never seemed to add up. That disorder is Cowden’s Syndrome. It’s a mutation on the PTEN gene that causes benign and malignant tumors, increasing cancer risks and letting things pop up all over my body that hurt like a mother.

I’ve lived with this disorder my entire life. Hospitals, waiting rooms, specialists, MRI’s, and every other extremely uncomfortable medical situation you can think of became my life. To date, I’ve had 18 surgeries, multiple procedures, over 30 hospital visits, and 25+ MRI’s that have put wayyyy to much metal into my body. From countless medical traumas I’ve developed PTSD, anxiety, and depressive disorders. What doesn’t help that is the fact that I’m always in pain. I fight every damn day. I fight to live my life, and to get my body to the levels that others can reach with half the effort.

Now here’s the best part, so I’ve got a crazy smart mom, who wouldn’t stop poking around to figure out the other piece to this puzzle. Because, we both knew Cowden’s wasn’t it. There was something more, because this debilitating chronic pain in a relatively healthy 15 year old, plus other random symptoms that just didn’t add up, had to come from somewhere. So, we went back to my geneticist. And, guess what? We BOTH got our SECOND rare genetic diagnosis. hEDS( the hyper mobile sub type of Ehlers-Danlos Syndrome). Fun, right?

I know it’s a lot to write at once. It may seem crazy to anyone else who lays eyes on this post. But guess what? One very valuable life lesson I’ve learned from living this life is to stop giving so much of a damn what other people think.

Just live. ❤

Until inspiration strikes again!

(Or I’ve got some unusual free time 😉)

Meghan

*********************************************************

#beatingcowdens AND #hEDS… I guess some updating may be in order…

Difficult To Work With

Published on June 29, 2019June 29, 2019 by beatingcowdens4 Comments

I am so tired of fighting.

All the time.

My Grandfather told me many years ago that I was “difficult to work with.” He said it with love. I don’t remember the exact context. I do remember it was said with a smile.

And he was undoubtedly right about that, like so many other things.

I had a boss a few years back that told me, “If you continue to hold everyone to the same standards you hold yourself to, you will always be disappointed.” Strong words, but also not inaccurate.

I am a lot to take.

I am intense almost all the time. I have a mouth full of words that last long past the attention span of anyone I strike up a conversation with.

I am passionate about things I believe in.

I make lots and lots of mistakes. But, I truly do my best all the time.

So I just sometimes struggle to understand why it seems everything I touch or encounter is a battle.

I spend hours upon hours sorting through medical claims. I look up who paid what, and when. I call on bills that need to be refiled. I take names on post-it notes with dates and times, in case things don’t get rectified.

I file out of network claims, and then I watch them processed in error. I make three phone calls to try to sort out the change in policy, which was simply just a mistake no one will own. I take names again. I am told to wait 6 more weeks for hundreds of dollars owed to me to be reprocessed. It’s only a little about the money. It’s mostly about the notebook, and the folder with the copies of the claims, and the alarm in my phone to remind me when I need to follow up on the call again.

I send medication to the mail order pharmacy because we have no choice. And then I wait for them to screw it up. That sounds negative, but it’s simply accurate. They have an entire notebook in my world to help manage the 9 mail away prescriptions between us. There is a perpetual box on my ‘to do’ list which tells me to check on the progress of any refill.

I make appointments. The list has 20 specialists between us. They vary from twice a week to once a year. A psychologist once told me not to let the appointments interfere with “preferred activities.” So there is a matrix with the impossible task as the ultimate goal. Except none of the 20 doctors know about the other 19. Or the full time job. Or the high school honor student’s schedule. Or swim practice. Or theater. Or voice lessons. Nor do they care. And I get it. They can not hear everyone’s story. So when I call to try to carefully place that appointment in a very tiny window of time, they are always unhappy with me. They think I’m being unreasonable. And maybe I am. But, I can’t imagine why I wouldn’t TRY to get everything to keep her physically healthy and still let her be a teen.

I deal with unexpected schedule changes. Like when I carefully stack 2 appointments in one day, and then one has to move to right smack in the middle of a week long summer internship that was planned forever ago, because now instead of two doctors with Friday hours at the same facility, one has Monday and one has Friday. No overlap. So I erase, and juggle. Except I’m not great at juggling in a literal sense, so one got cancelled and hasn’t been rescheduled. Actually two… because summer can not be ALL about doctors. Nor can every day off. But, neither can every day at work or school…

“What do you mean you’re not going to reschedule today?”

So much of our condition relies on screening. Early detection is a blessing. It is the key. It is also tedious and time consuming. It is possible to be grateful and overwhelmed simultaneously.

So much of this is case management. And, when last I checked my master’s degree is in education, not medicine. But, with no one to coordinate care I have to guess a whole lot. I have to decide if 9 months will be ok instead of 6. I have to decide when to push the doctor for more lab tests when the fatigue won’t quit and the thyroid is ok but the spleen…eh, no one is quite sure about the spleen…

And there are doctor’s whose pride won’t let them return a call because I haven’t seen them recently enough.

There is the genetics appointment lingering again. Because maybe Cowden’s wasn’t the WHOLE answer…

And the “normal people stuff” like the seemingly never-ending root canals because my stress is played out in the jaw clenching that overtakes the episodes of sleep. That is on the occasions everything is calm enough for me to make it to my bed.

Or the foot injury. The “rare” lisfranc ligament partial tear. Close to 6 months later. Not a soul wants to hear me tell the story again. No one wants to believe that it still hurts badly enough that I haven’t take a real walk since last fall. I’m not lazy. I’m horrified by the state of my body in the absence of real physical activity. I am trying to be patient. My patience is running out alongside my sanity.

And the IEP. Oh, the Individualized Education Plan… and the meetings. Over and over and over again… Meghan is on the waiting list for a service dog. She has PTSD and generalized anxiety disorder. The dog is coming. The process is wearing me out.

I am a lot to take.

I am often “difficult to work with.”

I hold myself and others to a high standard.

I am intense most of the time.

I am tired.

I am so very tired of fighting all the time.

There is no choice though. No choice at all.

So, in the mean time I will be here. Strengthening my resolve. I may bend, but I will not break. I will continue to strive to show my girl that she can have a rare and currently incurable disease, while excelling at school, at sports, being active in the community, and being a generally decent human.

Last month we walked out of a screening appointment. It was not critical. It was an hour behind. We rescheduled. Also a valuable lesson.

I am tired of fighting, but I am far from done.

As my Grandfather said, I am “difficult to work with.”

I am also loved. I am flawed. I am also forgiven.

When I have no more, I put my hands together and ask… and I am never disappointed.

Through God’s Grace alone we remain…

#beatingcowdens

“I am the Lorax, I speak for the trees.”

Published on November 16, 2018November 17, 2018 by beatingcowdens2 Comments

The call came to my cell phone on a Friday afternoon a few weeks ago. It took me a few minutes to process that Sharon from the Teddy Atlas Foundation was telling me Meghan had been selected to receive the Dr. Theodore A. Atlas Humanitarian Award. The award is named for a local physician who epitomized the concept of what it meant to be a physician through more than a half century of people centered care on Staten Island.

Dr. Theodore A. Atlas Biography

I knew of Dr. Atlas, who did most of his work before my time, because I followed the work of the foundation, started by his son, Teddy Atlas Jr. The Dr. Theodore A. Atlas Foundation is a name known to locals who are inspired by stories of people helping people. I had watched this foundation through the years, grateful that people who genuinely want to help are not afraid to just do it.

Teddy Atlas Biography

I know I stumbled, and may have sounded like a bumbling fool as I asked her to repeat herself. “Yes,” Meghan will accept gratefully, I replied without asking. I was given the date and time for the dinner.

I’m not sure either of us really grasped the enormity of the honor until we looked up the event on line.

Teddy Dinner celebrity line-up

We had just struggled to get 100 people in a room for a fundraiser. Here they were looking at close to a thousand – from big names to community favorites.

When she learned she’d need to give a brief acceptance speech, she took a deep breath, and then thought. A whole lot.

We talked about humanitarian, as a word and as a concept. The more we bounced it around, the more we both knew the concept suited her. Meghan has always wanted to make a difference. She has always done what she can to speak for those who can not speak for themselves. She is not sure what her future career will be, but she is sure that she must know she is ‘helping.’

We talked about quotes. I gave a few suggestions. She came back to me with Dr. Seuss. She nailed it. As usual.

The Lorax speaks for the trees. They can not speak for themselves, so the Lorax advocates for them. It resonated with her.

Here is Meghan’s speech:

Good evening, I am extremely humbled and grateful to be standing before you tonight.

When I was 7 I never thought my life would turn out this way. I never thought I’d be accepting a prestigious humanitarian award. When I was 8 and my life was turned upside down by a diagnosis I didn’t understand, I was in shock. By the time I was nine, I realized that no one even knew what my disease was. Then I realized that if I didn’t do something, there was a chance no one else ever would.

Cowden’s Syndrome is a mutation on the PTEN Gene, a tumor suppressor gene. Because of this disorder I have extremely high cancer risks, and grow a lot of tumors. I am in the hospital being poked and prodded on a regular basis. I am constantly scanned and monitored. Every time I step into a doctor’s office I am holding my breath, praying that I will get even just two more months of peace, without a procedure. I am 15, and I have had 18 surgeries. This disease has tried to break me over, and over again. And, because of this, with each passing day I become more determined to overcome these challenges, win my daily battles, and lend a helping hand to others in need.

I am living the life of a rare disease patient. I am closely acquainted with the downfalls and struggles of my disease, and others. Because of this, I am fully cognizant that there is very little awareness about rare genetic disorders. Some of these disorders are fatal, and others can just make your daily life torturous.

My disorder specifically is sometimes classified as an “invisible illness.’ No one sees my scars and my struggles because I don’t ‘look sick.’ I present as a healthy and intelligent teenager. When I was little I used to wish all my scars were able to be seen, and that they were all over my skin. I thought that maybe people would start understanding what patients like me go through a bit more if they saw some of the ramifications of these diseases.

Cowden’s Syndrome has not just impacted my body. There are undeniable, severe mental ramifications that have come with my struggles. I have a depressive disorder, an anxiety disorder, and PTSD secondary to medical trauma. In no way am I even close to normal. I have to fight ten times harder for what someone else can do physically. I struggle mentally to live a normal live and get past the anxieties that control my daily life.

I have been bullied since elementary school there are some days where I come home, curl up in a ball and cry. It’s really hard to make friends when you’re at the doctor so much, and it’s even harder to deal with teenage drama when you’ve had to act so much older then you are your whole life. Whether it’s been because I’m different and they don’t understand, or because I catch on to things quickly, I always find myself that kid with the target on my back for bullies.

People like to say to ‘not let your hardships define you.’ Personally, I think that’s idealistic and impossible. The events that you have gone through in your life have created who you are. Sometimes I wonder what life would be like if I did not have this rare disease. Then I shake myself out of it, and realize that I’m a pretty cool person who has the ability to change lives. And, that if I didn’t have Cowden’s Syndrome, I wouldn’t be growing into the person I am.

My mother and I host annual fundraisers called “Jeans for Rare Genes.” They started out with all of the profits being donated to the Global Genes Foundation, a 401C3 organization that raises money around the world for the purpose of providing support to patients with rare diseases. Then, the PTEN Foundation, an organization specifically devoted to patients with PTEN Hamartoma Tumor Syndrome (Cowden’s Syndrome) was born. Once this organization was created, we began fundraising for them. To this day, our annual fundraiser is one of the biggest donations that goes into this organization and I am proud to know that our work is making a difference.

There are less than 2,000 diagnosed Cowden’s Syndrome patients in the US. Sometimes it is hard to see the light at the end of a lonely tunnel. The PTEN Foundation is close to putting up a patient powered registry that will start things moving in the right direction. We have a long way to go. We need funding for research, and then we need medication and hopefully a cure. There is far too little awareness about Cowden’s syndrome and all rare diseases in general. They are very real, and very present in our society.

This honor will serve as a stepping stone for me. My awareness efforts are not nearly done. In fact, I view this as a new chapter in my life, where I will have the confidence and courage, needed to continue raising funds and awareness, and that I may hopefully be a part of changing the lives of other rare disease patients.

In the words of the Lorax in the famous Dr. Seuss book, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”

With the number of people who care in this room tonight, I look forward to a future of hope and promise. Thank you.

The speech ended with Teddy Atlas committing $5,000 to the PTEN Foundation on Meghan’s behalf.

It made me extra glad that Kristin, the PTEN Foundation President, who has become a dear friend, had made her way to New York from Alabama to celebrate with us.

Yesterday, November 15, 2018, NYC was almost totally crippled by an unexpected snow storm. In all of my years here I have never ever seen anything like it. I have seen worse storms, but NEVER the crippling state of things I saw yesterday. I left work to get Meghan at school at 2:20. On a busy day it takes me 22 minutes to arrive at her school for pick up. At 4:10, after crawling for HOURS and getting so close, I was being pushed up a hill out of a pile of snow. I was in such a state, feeling frantic that I was literally not able to get to her. And even though I knew she was safe, it was a helpless feeling I’m not looking to duplicate any time soon.

At 4:15 she sat in my car while we turned around to head back. At 5:35 the 8 mile round trip was complete, but we weren’t out of trouble. Three hours on the road and I never saw a plow or a salt truck.

My parents agreed to drive in their very capable pick up truck. My husband made it safely off the bus from Manhattan. It was far from the poised and put together departure I had hoped for, but we got there.

I’m not going to lie, there were a few moments there where I thought, “WHAT THE HECK? Why does EVERYTHING have to be surrounded by drama?”

But I pulled myself together. There are far bigger problems in the world. We made it. We were safe. We were together. Meghan’s dear friend greeted us there. I looked around and soaked up the enormity of the honor my 15 year old was receiving.

I looked around the room full of energetic, generous spirits.

I looked in the booklet on the table and found this. Despite a few minor errors, the idea that this was published here. Now. For everyone. Well, it kind of blew me away.

I listened while Ciaran Sheehan sang, with chills down my spine. Having played leading roles in two of Meghan’s favorite Broadway shows, “Les Miserables,” and “Phantom of the Opera,” he was the one she wanted to meet. And she did.

My girl is not perfect. She struggles. We argue. She sometimes acts like a teenage girl and I have to remind myself she is one. She is intense. She is focused. She is determined. She is deeply principled.

She is learning to find balance. She is learning to laugh. She is learning to pause. To believe. She is letting herself be successful. She is working daily on becoming the best version of herself. She is my hero.

And Meghan, as one of the “trees,” I am happy to have a “Lorax” like you.

Because as Dr. Seuss said, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”

You are way more than

#beatingcowdens

You’re going places kid. And I’m so grateful to be along for the ride.

No Excuses. No Apologies.

Published on September 30, 2018October 1, 2018 by beatingcowdens2 Comments

Recently I asked that Meghan’s “Present Levels of Performance” on her IEP be updated. She no longer receives many services, but I find great value in keeping this section current.

There is a great deal of misunderstanding involving Individualized Education Plans (or IEPs) and many people feel only children who struggle academically have an IEP. This is just not true.

My daughter has had one in place since Kindergarten. She has consistently maintained high honors, and as a matter of fact was Salutatorian of her 8th grade class, and is in an intensely challenging International Baccalaureate program at her high school.

IEPs by definition, are to “Individualize” the Education Program as needed. Meghan’s needs are not academic, as much as they are residual connected to the Cowden’s Syndrome, the PTSD, and the medical trauma. The resulting anxiety affects every area of life, and is far deeper than “teenage angst.” We work extensively outside of school to address this in many ways, but sometimes we need the school to be on the same page.

Much like you give a medical history to a doctor when you see them for the first time, and you update as situations change, the IEP is to be fluid and updated as changes occur so all personnel will be aware of Meghan’s needs.

I make a habit on the first day of school of copying a few key pages of the document and giving it to her teachers. Even though they have access, and technically it is their responsibility, I am also a teacher. I get the pressures placed on us. So, I make their lives easier by giving them what they need and an invitation to reach out to me with any questions. Her teachers are historically receptive and appreciative.

This year I was reviewing that section on the document realizing how much was no longer accurate, and how it should be more detailed.

I sat with Meghan to write the summary below:

Meghan is a 15-year-old sophomore in the IB program at School. Academically she is consistently above average in her classes, attaining high honors every marking period for the 2017-2018 school year.

She is a student athlete as well, participating on the School varsity swim team, as well as Trident Aquatics, a 12 month competitive swim program on the Island.

Meghan has several medical diagnoses. The most far-reaching is “Cowden’s Syndrome” a mutation on the PTEN (tumor suppressor) Gene, causing benign and malignant tumors as well as vascular malformations. Recently PTEN mutations have been correlated with low levels of (infection fighting) immunoglobulins, which Meghan also suffers with.

Because of the low immunoglobulin levels Meghan has frequent infections that often require antibiotics for resolution. She suffers with gastrointestinal distress with each course, and needs to avoid gluten and soy. She also has an allergy to dairy.

Meghan’s medical challenges are far-reaching. She has had 18 surgeries, 8 of which have been on her right knee. There was an arteriovenous malformation (AVM) in that knee. While it has been controlled, the long-term effects will last forever. Meghan has leg and foot discrepancies on her right side. The blood was restricted from flowing to her right foot for so long, that it stopped growing 6 years ago. The left foot is a full size larger than the right foot. That right-sided weakness has been repeatedly treated in physical therapy, but still presents as a struggle with stairs, and long walks. While she endures these activities, they can cause pain and excessive fatigue, and extra time may be necessary between classes located far apart.

Meghan had her thyroid removed in 2014 and the resulting need for synthetic medication has yet to be regulated. Her current endocrinologist follows her 4 times a year, adjusting, tailoring, and trying to balance her levels.

Meghan had 2 D&C procedures during 7^th grade. Those procedures yielded precancerous tissue in her uterus and prompted the need for birth control pills to try to stop the cellular growth. Those pills have also been difficult to regulate and balance.

Meghan has been hospitalized countless times in addition to her surgeries. She has also undergone over 30 MRIs and close to 10CT scans, each requiring IV. She spends countless hours being poked and prodded at doctors, monitoring her cancer risks. She is acutely aware of her mortality at an age when most teens are barely aware of their social interests.

In the spring of 2017 Meghan was diagnosed with Post Traumatic Stress Disorder, secondary to extensive medical trauma. She was also diagnosed with major depressive disorder.

In the fall of 2017 Meghan began to develop panic attacks. Subsequently, she has also been treated for panic and generalized anxiety disorder.

She sees a social worker weekly and has guidance on her IEP in school. She sees a psychiatrist monthly who manages the medication, which currently consists of and antidepressant and another script for panic attacks.

The panic attacks were well controlled for a time, but flare up in acute anxiety. This summer saw several severe episodes. We are working together to help her through all of this.

Meghan is waiting for a service dog, which should arrive in the next 4-6 months, to address the PTSD. In the mean time, we are teaching strategies to deal with necessary stress, and tools to eliminate unnecessary stress.

I presented this document to the team to update the IEP. I was a little startled when I was met first with a challenge on the diagnoses. No problem I told them. I would send the doctor’s notes.

I love her school, I do. But, I was in fact also told “She doesn’t LOOK sick” and “She doesn’t LOOK stressed.” While I had to breathe a few times before responding, I came up with “You’re welcome…”

We’ve worked quite hard on all of that. My girl has goals. Life goals.

Last week Meghan was approached to remove the section regarding the D&Cs from the document above. She declined. She was pushed, and told the information was “far too personal.”

Forever practical, Meghan reminded them the document was about her, and should include factual information.

Again pressed, she reminded the staff she helped write the document they were holding. She wanted and NEEDED her teachers to understand the validity behind her anxiety and PTSD symptoms.

The final time they told her the information was too personal she reminded them that she had done nothing wrong, and had nothing to be embarrassed about. Meghan is a factual child. She likes actual truth being reported. She knows better than to be embarrassed about truth. She knows ugly truth is a real part of life with Cowden’s Syndrome. She also knows that secrets give power to things that don’t deserve it.

These things happened to her.

She did not ask for them.

She did not cause them.

She will not hide them.

She will not apologize for them.

She will not let them define her.

But the things that happen to us do change us. HOW they change us is the only thing we can work to control.

I will continue to work the Mom end to get this updated.

I am beyond proud of her growing confidence, and her desire to educate.

I am proud of her desire to be a scholar and an athlete in spite of all the adversity.

I am proud of her respect for the clock as she grows as a swimmer, and her desire to be the same as everyone else, by beating the same clock.

My girl is, and shall remain

#beatingcowdens

And that is why we continue to work on the journey towards treatments and a cure.

Please consider joining us or making a contribution. You can reach us at jfrg.pten@gmail.com

#beatingcowdens

delete

Published on September 1, 2017September 1, 2017 by beatingcowdens2 Comments

Don’t you sometimes just want to hit the delete button?

We were going through vacation photos and I was struck by how easy it was to eliminate images that we found unflattering. We were able to simply click a button – and they were gone, for no one else to ever see. Eventually our only memories of the trip would be reliant on the images that remained, so in some ways it was almost like those unflattering moments never happened. Right?

I love my social media accounts. I do. But sometimes I scroll through feeling a bit down, inadequate and lonely. Everyone looks so happy. Everyone is surrounded by friends. Everyone’s house is clean. Everyone is taking wonderful vacations. Everyone is resting in their pool on a weekday afternoon…

Then I realize I do the same thing. No one wants to see a picture of my unmade bed, my tears of frustration, or the times when the family doesn’t really like each other too much. No one wants to hear videos of me bickering with insurance companies, or dealing with the day-to-day realities. No one wants to know how often some type of issue simply keeps us house bound.

I started this summer as I do every summer, full of hopeful anticipation that it would bring health, and rest, and time to read, and do lots of nothing. And, like most of the summers before, that is not at all how it turned out.

I could insert a photo of my unread books, or closets that never got cleaned out, or the files that never got shredded. I could flash you a shot of my EZ Pass statement, for the countless trips to the doctor… you get the idea.

As we journey through this world of rare disease, and chronic illness together, I use this blog to keep my perspective straight. Yet, some days it’s hard not to feel like the plate is just a little too full. And somehow, some way…

This summer Cowden’s Syndrome took a run at us- hard. The knee has been, and continues to be a work in progress. The isolation it causes is hard to describe. The sinus infection caused chaos because the medications wrecked a sensitive stomach. The knee medicines added fuel to the fire. Renegade hormones took their toll too. We are still deep in this journey to figure out PTSD and its manifestations, and ramifications, and where we all fit in. Cowden’s Syndrome has done some damage.

Yet, despite all the things we want to delete from the summer, there were some beautiful, simple, and just fun times. There were friends that visited. There were connections with dear old friends, and some new ones too. There was a fun birthday party – something we have not had in YEARS! And, there was Disney… still magical.

With all this on my mind as I went through the vacation pictures, I opted to save some that in previous years I might have deleted.

It was late one night and Meghan wanted to go back to the Magic Kingdom. I took her back myself. We made our way up main street and headed to “Dumbo” the first ride she ever rode in Disney – 10 years ago. We waited on line, and rode our elephant side by side.

I’ve never been so pleased to take a “selfie” in my life.

Then we used a Fast Pass for the Seven Dwarfs Mine Train. Three years ago I didn’t even ride roller coasters. Now, I’m so used to the ones in Disney I don’t give them a second thought. As we headed over the first hill the sky lit up with the fireworks display over the castle. We were in awe. I think it will probably be one of my most magical Disney memories ever. This picture, although not flattering, captures that moment so well.

There were many moments this summer I wanted to “delete.” But, then there were others.

So in an effort to give you a little more “real” and a little less “facebook fancy” I decided to keep these. And, I even decided I like them.

Because life is not pretty. Sometimes its downright nasty and ugly. Most of life is not us in our best clothes, and hair. Most of life is sweats and sneakers… that are hopefully clean and matching. And if we delete all of that, and spend all of our time looking for the perfect, well, I think we’ll miss some magical moments.

Cowden’s Syndrome is not going away. Plans are going to get messed up and changed at inconvenient times. There are going to be lots of housebound days full of isolation and loneliness.

But, as I go through my camera roll, I am going to concentrate on deleting less. I am not going to judge a picture by a random perfection scale. I’m going to judge it by the magic within.

We asked a Disney employee for a quick shot on the iphone…

And with this girl, I will learn every single day. I am just so lucky to be her mom, and I won’t delete any of it simply because it’s hard.

We remain forever

#beatingcowdens

The Comeback…

Published on July 31, 2017August 1, 2017 by beatingcowdensLeave a comment

“…There is no mountain you can’t face

There is no giant you can’t take

All of your tears were not a waste

You’re one step away…” Danny Gokey

We listen to a good deal of Contemporary Christian music. There are other tastes among us, but often, especially in the car – we listen to this. It’s been a few years since we’ve had a church where we all felt comfortable and at home, although we possess strong, deeply rooted faith. This music helps keep us focused when things can otherwise seem blurry.

This particular song surfaced a few weeks ago. Meghan was battling to make a comeback from knee surgery 7, and seven was NOT a lucky number.

When you’ve been through the operating room 18 times and it’s still a week before your 14th birthday – you can call yourself somewhat of a professional at recovery.

We left the hospital with our list of directions. We went to the surgical follow-up. We scheduled PT. We even held an extra week before restarting swim. There were crutches for a very long time – used responsibly. So, when she had done everything right, and her body decided to push back – hard, she was understandably angry and very frustrated.

No one really had a solid explanation for the fluid that overtook that knee almost 5 weeks post operatively. But, there never really is a solid explanation. I’d like to say we’re used to it. But, I don’t like to lie.

There were more crutches, and more PT with the BEST PT in the whole wide world. (We LOVE Dr. Jill – because she works on the WHOLE kid. She gets that they are more than the body part giving them trouble. I know of NONE quite like her.) There was increase in strength and range of motion. There was a return to (half) swim practices.

There has been diligent icing after swim. There has been stretching and strengthening because, quite frankly, she WANTS to feel better.

We joked around during the month of June, how nice it would be if we could make July a “doctor- free” month. We longingly imagine the same scenario every year. What if summer could be time to relax? What if we could take day trips? What if we could come and go, and rejuvenate?

I just counted 20 medical appointments between us over the last 31 days. There are 2 more tomorrow.

Chronic illness is a real drag at any age. When it happens to a child or a teen it makes everything that is already hard about growing up – even more of a challenge.

When you are in an almost constant state of recovery, you can find yourself tired. Fighting so hard just to get back to where you were can make you feel like a hamster stuck in a wheel.

Chronic illness, constant pain, surgical recovery, ongoing surveillance, and all the other “fun” things that accompany Cowden’s Syndrome – or any other “it’s sticking around FOREVER” illness can leave you wiped out.

It’s hard to build relationships, friendships, or even a social group when you aren’t able to do so many of the things people take for granted every day. There are days you quite simply run out of “spoons.”

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

But, in life there are more times than not that we have choices. I try to model for my daughter, but so often she models for me. You can choose to sit alone. You can choose to let pain, fear, anxiety and frustration take hold. You can choose to be sad. You can choose to be mad. Or you can realize that life is hard. Everyone’s life is hard. Life is also full of blessings.

When you realize that this is your life, and you decide you’re going to make the best of it- that’s when you dig in. You climb up that mountain, one step at a time…

I admire many things about my daughter. She is not perfect – neither am I. But in her soul, there is a “Never Give Up” attitude that permeates all things. There is a constant quest for equity and justice, not just for her, but for all she interfaces with. There is a compassionate need to help others. There is a desire to be successful in spite of her circumstances – not because of them.

She always says she loves to swim because regardless – she has to meet the same time standards as everyone else. Somehow it makes each comeback a little sweeter.

No one else would likely know, or realize, or remember. But, we know.

First year on the high school team. The season starts right after school. She’ll be ready.

#beatingcowdens

#beatingcowdens

#beatingcowdens

#beatingcowdens AND #hEDS… I guess some updating may be in order…

#beatingcowdens

Good evening, I am extremely humbled and grateful to be standing before you tonight.

In the words of the Lorax in the famous Dr. Seuss book, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”

With the number of people who care in this room tonight, I look forward to a future of hope and promise. Thank you.

#beatingcowdens

Meghan is a 15-year-old sophomore in the IB program at School. Academically she is consistently above average in her classes, attaining high honors every marking period for the 2017-2018 school year.

She is a student athlete as well, participating on the School varsity swim team, as well as Trident Aquatics, a 12 month competitive swim program on the Island.

Because of the low immunoglobulin levels Meghan has frequent infections that often require antibiotics for resolution. She suffers with gastrointestinal distress with each course, and needs to avoid gluten and soy. She also has an allergy to dairy.

Meghan had her thyroid removed in 2014 and the resulting need for synthetic medication has yet to be regulated. Her current endocrinologist follows her 4 times a year, adjusting, tailoring, and trying to balance her levels.

Meghan had 2 D&C procedures during 7th grade. Those procedures yielded precancerous tissue in her uterus and prompted the need for birth control pills to try to stop the cellular growth. Those pills have also been difficult to regulate and balance.

In the spring of 2017 Meghan was diagnosed with Post Traumatic Stress Disorder, secondary to extensive medical trauma. She was also diagnosed with major depressive disorder.

In the fall of 2017 Meghan began to develop panic attacks. Subsequently, she has also been treated for panic and generalized anxiety disorder.

She sees a social worker weekly and has guidance on her IEP in school. She sees a psychiatrist monthly who manages the medication, which currently consists of and antidepressant and another script for panic attacks.

The panic attacks were well controlled for a time, but flare up in acute anxiety. This summer saw several severe episodes. We are working together to help her through all of this.

Meghan is waiting for a service dog, which should arrive in the next 4-6 months, to address the PTSD. In the mean time, we are teaching strategies to deal with necessary stress, and tools to eliminate unnecessary stress.

#beatingcowdens

#beatingcowdens