Tag: Cowden’s Syndrome

The Future of Healthcare

Published on by beatingcowdens4 Comments

I could write for days and never fully tell all that is spoken through those eyes. I could detail wars, physical, mental, and emotional that would have decimated those who think they understand strength. And I may, but not today.

Today I will tell you to pay attention. Look closely. This right here is the future of healthcare. This is the face of hope. This is the face of grit and determination that comes only after you have dug yourself out of the trenches over and over again and refused to allow yourself anything less than success. This is the smile that says, “I will go the distance for you. I will not quit. You deserve better.”

You deserve better. YOU. The sick. The frustrated. The marginalized. The dismissed. Those of you on the very edges of that “bell curve” of medicine, in the places no one ever looks or understands. The Zebras in a world of horses. You deserve compassion. You deserve to be treated by someone who believes you can feel the best your body is capable of feeling.

It took a long time to see that smile. It may in fact have been the first time in close to two decades that I ever saw THAT smile. But, let me tell you, now that it surfaced, there is no stopping it.

This young lady told me many years ago she was going into healthcare to “do better.” And every single time we hug, my certainty grows. She will “do better” because she understands. She has felt it, lived it, and clawed her way through the depths of it.

Rare Disease Day is this month, a day when we try to raise awareness of rare diseases across the globe. As patients of one of those diseases, whose estimated occurrence rate in the United States translates into about 1,700 patients nationwide we feel this every minute of every day. We understand the urgency in ways that are impossible to articulate. We need to be seen. We need to be heard. We need healthcare professionals who will fight for US.

You don’t see the unsteady footing over there in lane 1, from two distinctly different-sized feet, and a leg still weaker than we’d like from a tumor buried just deep enough to make things extra hard. But, you see that focus? You see those eyes looking forward to the wall? You can almost hear the goals in her mind as she prepares to start the race. You have no way of knowing what it took for her to get there, on the block of this championship college swim meet. But, you don’t need to. You just know she belongs right there. She fought like hell to get there, and she will not be taken off course.

That race she is about to swim, it is 66 laps. A full mile of nothing but raw determination, and the ultimate head game. This kid is long game. She is not a sprinter. She never backs down from a grueling battle and she never gives up. She is the future of healthcare we need.

This kid. She is butterfly. Exhausting, like life. It can suck the wind right out of you. And yet, she has learned to breathe through it and sometimes make it look flat-out basic. This is the future of healthcare. We need to step into the room and tell our hard stories and tell them to professionals who can breathe through to the end. We need to ones who will not stop fighting the challenging races with us and for us.

This kid, she is not only a lone wolf. She knows that being part of a solid team is utterly essential to success. She will not miss the handoff, and she will fight like hell so that she and her teammates get where they need to be. This is the future of healthcare, where egos are less important than results, and when we work together EVERYONE is better.

These are smiles that say we don’t have to be on the top of the podium to get the job done. These are smiles that say, sometimes it takes a village and if we all do our part every single time we ARE better. THIS is what the future of healthcare looks like.

This swim meet last weekend was not all about swimming. It was about character, drive, and determination. It was about using what we have as a tool to get where we need to be, not as an excuse to stay behind.

This was about knowing that sometimes, you will hit a personal best every single time you go off the block.

It was about celebration, and accomplishment, not as an end, but as a means to press forward always.

It was about taking the time to cherish the successes because no one stays at the top of their game all the time. It was about remembering what it feels like to soar so that you can always dig back and remember you have more.

It is not always about getting a medal. But this weekend it was about that too. She wears that medal as a symbol that we are stronger than almost anyone realizes. She wears it to remind herself that the next time she is at the very bottom of the heap, wondering if she has the strength to get back up – she does. We all do.

We hugged for a long time in the hotel room that night. We talked about the others we “know” with Cowden Syndrome. We talked about how even in our small community there is such a wide berth of challenges. We took a moment to honor all of our “sisters and brothers” and dedicated that medal to all of them. Because a win for one of us, is a win for all of us.

And we talked about Ashton, our sister in Australia, gone far too soon. A bright light whose “you do you” mantra is one we speak with reverent smiles.

Sometimes you are on top of your game. Sometimes you can barely get off the couch. Sometimes you win. Other times you don’t. But every day we wake, work, fight and honor, and strive to be our best selves.

Remember this face folks. The future of healthcare is here. This young woman will be a Physician Assistant who makes a difference. She will make the world better for all of us one step at a time.

In solidarity with all of you, we remain

#beatingcowdens

And, if you have a minute, unite us with RARE DISEASE warriors around the globe by leaving a comment here?

Unanswered Prayers

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Sometimes my unanswered prayers end up being what I am most grateful for.

Sometimes what happens is not what’s “right.”

Sometimes we can fight to change it.

Sometimes we have to stop fighting and move on.

Sometimes we have to consider that there might be a bigger picture we can’t see yet.

There are a handful of songs that have shaped me as a person. Among them is “The Gambler” by Kenny Rogers. Somehow the chorus has come into my mind at some of the most challenging times in my life.

“You got to know when to hold ’em,
Know when to fold ’em,
Know when to walk away,
And know when to run.
You never count your money
When you’re sittin’ at the table.
There’ll be time enough for countin’
When the dealing’s done.”

My life, sometimes my very existence, feels like it has been one fight after another.

I don’t mean aggressive battles among peers or friends. I mean battling “the system.” Whether it was fighting the limousine company that tried to change the contract 5 days before our wedding in 2000, (yes we walked away, got to the wedding in another limo, sued them, and won,) or health insurance companies that don’t want to pay for tests, procedures, scans, and surgeries Meghan and I have had, or doctors themselves who sometimes just don’t listen, the list of fights goes on and on.

I have a stellar record in this never-ending stream of confrontations.

But at what cost?

I sometimes worry my memory is failing. There are so many things I can not recall. I am sometimes comforted by the movie “Inside Out” and the notion of my brain making room for the things that matter.

The last decade has definitely been among the most formative of my life. Mom always said you do more changing in your 20s than in your teens. I’m not sure where that leaves your 40s!

Sometimes I shake my head in amazement at the journey that included removing a few organs between us, attacking a few tumors, hospitalizations, appointments, graduations, celebrations, and loss. Sometimes the loss hurts maybe more than it should.

I was lucky enough to arrive in my 40s with grandparents. Not many people can say that, and yet not a day goes by when I wouldn’t gratefully accept another one with them.

My father died in 2013, soon after I turned 40, and the ache from that loss, after we had so recently found each other is constant.

And that brings me back to “The Gambler.”

“You got to know when to hold ’em,
Know when to fold ’em,
Know when to walk away,
And know when to run…”

I’m not sure anyone knows Dad referenced that chorus in December 2013 in his VA hospital room when I was tasked with telling him his kidneys were shutting down in response to a cancerous tumor in his pancreas. He was so calm. I wanted him to fight so badly. I wanted to keep him with me. I wanted to scream. But he simply told me it was time. He had fought plenty in his life. And he had overcome. But, this time he knew…

School was not ever Dad’s strong suit, but he was a student of life. He knew the numbers, the stats, and the odds. He knew the reality of how his situation was going to end.

Unanswered prayers. Maybe they prevented things he never would have wanted. Maybe they were what we all needed. I am not sure, and I look forward to hugging him tightly again one day. But for now, the lesson of the value of those unanswered prayers is something he left behind, that I can call upon right now when I need it most.

I fell in January of 2019 in my classroom. I was teaching and a chair moved as a restless student changed position ever so slightly as I circulated the room. My feet did not anticipate it, I could not have seen it, and my left foot stayed on that chair while the rest of me hit the ground. Hard. It was one of those moments where I just knew things would never be the same.

I filled out all the accident reports before leaving for x-rays and MRIs. And, as so often seems to be the case, things got complicated.

My injury wasn’t properly diagnosed until March of that year, much later than I needed that diagnosis, as the damage done walking on a partial Lisfranc tear during those first 8 weeks proved irreparable.

I have fought for that foot on repeat since 2019. Surgery in 2020 did nothing to make things better. As a matter of fact, the addition of 3 screws, well, let’s just say the foot is unimpressed by their presence. And, the rock/ hardplace scenario continues as the surgeon told me removing them will make things worse.

A year of remote teaching did nothing for my foot, although that year, unanswered prayers brought me closer to some amazing colleagues, students, and families.

Teaching in person seems to accelerate things in the wrong direction.

I applied for accident-related disability retirement in 2021 and again in 2022. The denial that came this time, which follows a transcript of me being berated by a doctor who has never been in a classroom, shook me to tears on more than one occasion. The decision actually reads that the fall was not an accident.

I am pretty sure it is the textbook definition of an accident.

I was chastised for going to work. No one could explain how I should treat this injury if I stopped working and lost my medical coverage.

My foot is in never-ending pain. My left hip aches. My right knee is wearing from a constant subtle limp. Complex Regional Pain Syndrome is quite real if you ever wondered. Sleep is often more of a goal than a reality.

I should fight. I should appeal again. I should write a letter of complaint for the way this doctor handled me. I should. But, I am not going to.

I can’t fight this one.

And as many times as I have modeled for my daughter on repeat that she should fight with all her might, I am going to model this time, that sometimes you need to “… know when to walk away, know when to run…”

“If it costs you your peace; it’s too expensive,” and this fight is way over budget.

I spent a few years pulling back. The world has gone mad. The battle of #beatingcowdens alone is typically enough to keep me busy. In this post-pandemic and politically divisive country, I could not continue to be the additional heaviness in every conversation – so I stopped having them. I missed a lot in other people’s lives I am sure. But I think pausing to reflect on my own unanswered prayers, has put me in a better place than I was before.

People can judge all day about my new desire for some global and systemic ignorance. I know all too well that “knowing” is subjective and often solves nothing.

Unanswered prayers – well, maybe they are answered, just not on my terms. Maybe I just need to pause and think and shift perspective, no matter how hard it is.

And as a 49-year-old mom of one amazing young woman, wife to a seriously incredible human, a rare disease patient, and a cancer survivor, I have decided this battle for my foot has to get set free.

Who knows, maybe the answer came in forcing me to slow my roll and look around with more feeling and sincerity than ever before? The only speed I ever knew before was fast. I did not even know there were lower settings on the dial of life.

I have prayed a lot for the healing of my foot. I prayed a great deal that the medical review board would be compassionate and see the facts of my case. Both were not answered as I asked, but maybe they were answered in a way that was better or necessary.

In just the past few years I have spent a week on my knees as my husband, the healthy one, endured that week in the hospital battling Covid pneumonia. He came back to us, and our relationship, our central triangle has never been stronger.

I have prayed to have my child delivered back to me safely from more operating rooms than I care to count. I prayed fervently for Ella, Meghan’s faithful service dog, to arrive in time for her to transition to college. At college, both Meghan and Ella now flourish.

I have prayed extensively for things that I was blessed to see.

I have prayed for things that did not come to be.

I have prayed for peace, clarity, and understanding when things did not go as I hoped.

I have prayed for patience and wisdom, especially for things I can not comprehend.

And I find, on repeat, that when I sit still and really listen, I can find blessings pretty much anywhere.

I have come to wonder if maybe my unanswered prayers are just answered prayers I don’t quite comprehend…yet.

So, I am looking to take this life one day at a time. I am trying my best to make the world a tiny bit better and find joy in the little things. I am moving much slower. I am noticing things I never saw before.

And, remarkably, I am finding peace in this slow-paced gratitude.

Trying each day to be a better human, we remain…

#beatingcowdens

Romans 5:3-5

This is 49!

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Some days I look in the mirror and wonder who that lady is. Some days I hop on a scale chasing numbers that were there 30 years ago. Some days I am self-conscious about the gray hair and crows feet that stare back at me from the mirror. Some days I work extra hard to cover the age spots taking over my once fair, plain skin. Some days I am harder on myself than anyone else would be.

Today I looked at this photo from yesterday. I cringed a bit. I scrutinized as only the subject of a photo can.

Then I stopped.

Because the truth is, I am not the me of 30 years ago. Or 10 years. Or 5. Or even 1.

That is where it goes wrong sometimes.

It is so easy to tell my daughter to be present. To forgive herself. To not worry about how she thinks she compares to the standards of a flawed world. To not sweat the small stuff. But, sometimes I am a giant hypocrite.

Today I forced my own hand.

You see, this is 49. There is no living in this moment again. I can be miserable, or I can be content. In reality, if I have learned anything, I have learned that is one of the choices that changes everything. And it really is a choice.

Everyone you meet fights battles you know nothing about. And even when you think you share those battles, you only know what they choose to share with you.

Life is heavy. We can’t talk about our fears, our worries, and our sadness all the time. We can’t ask for others to fully absorb the weight of what we carry into each day. We can’t compare levels of difficulty. And we can not ask the world to adjust for us. Some of us are exhausted before the alarm goes off. But we still need to show up and make it happen.

So what can we do? I think we have to acknowledge where we are, and where we have come from. I think we have to offer gratitude to the higher powers in this universe. I think we have to carry a bucket of grace wherever we go, drinking from it when we are thirsty, sharing it when others have none, and allowing our own to be refilled by others.

But who am I? I am no more or less than you.

I am stream of consciousness writing,

I am 49.

I am wrinkles and declining vision.

I am scars and cellulite.

I am always prepared with a bottle of hair dye.

I am always hungry for chocolate and thirsty for caffeine.

I am sneakers and jeans and T-shirts.

I am quiet until I am not.

I am a long history of medical drama.

I am a professional at surgical recovery.

I am an athlete inside of a body that doesn’t know it yet.

I am a daughter, a sister, a granddaughter, a niece, a cousin, and a friend.

I am a wife.

I am a mother.

I am an absolutely ferocious beast at protecting my girl, her health, her rights, and her heart.

I am a sentimental fool.

I am a forgetful mess.

I am a nervous wreck.

I am an advocate.

I am a rare disease patient.

I am a medical biller on the side.

I am a teacher.

I am a life-long student of life.

I am one who loves deeply.

I am loved.

I am a believer in angels.

I am sure our loved ones never leave us.

I am ok with sloppy dog kisses, as I try not to overthink joy.

I am not 19, or 29, or 39, and I’m glad.

I am confident that lessons learned make me a stronger version of myself.

I am 49.

And I promise to work every day to be my best self.

#beatingcowdens

How was your summer?

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It’s my least favorite question connected with back to school. It sometimes makes me feel like I failed when I have nothing dynamic to report. And if I were to reply with honest answers, I would overstay the expectation of the question asker who was undoubtedly just being very polite.

This summer was not one for the record books. It included just under 50 medical appointments for the three of us. I know this because the billing errors that will follow and take up hours in the months to come necessitate me keeping a careful record of these appointments in my calendar of choice.

The highlights included a bright green cast removal, an in-depth surgery in May, three colonoscopies and 2 endoscopies between us, and a pile of appointments for the busted nerves in this left foot of mine. All the necessary maintenance on the home, with two separate AC repairs, 3 car inspections, a windshield repair, and a new navigation system helped handle any free time that might have popped up. Rare disease x2 meets real life.

Meghan managed to begin the Patient Care Hours that she will need in order to apply to school for Physician Assistant studies in a few years. She also took a 7-week “Professional Development” course, voluntarily and on her own dime where she and Ella continued to enhance their team.

Beautiful Ella

My girl was able to wean off one medicine, switch another to “as needed,” and change a third to one that better suits her, all time-consuming accomplishments as well. And while she is not running yet, she is comfortably walking a fast-paced 5k with ease on the regular.

And while we never got “away” this summer, we got to Broadway, and made a trip to her favorite NYC Bakery.

How was your summer?

I guess that like so much else depends on how I choose to look at it.

Rereading my own writing above, I guess I could say “accomplished.” At least I know why I am tired.

Our disease is forever. Sometimes there are extra days to fit in things that are not related to it. Sometimes there are days to fly free, to shut off the phone and shut out the doctors. This year, not so much.

But amazing things happen inside my little house. When this house is busting at the seams with 3 humans and 3 medium-sized dogs, it is exploding with love. I did not clean a single window, closet or curtain this summer. My house, like me, survived. But somehow its foundation keeps getting stronger. We raised a human who loves us enough to know she can escape to our “bubble” and rest her wings before flying again. The gratitude for that alone, that she CAN fly, that she DOES fly, and that she knows she can come back here to rest SAFELY before she SOARS again; that gratitude carries me through the most exhausting times.

This summer was a battle for so many I know. And it continues to be a battle for so many for physical, mental, spiritual, financial, and emotional health, this year it seems more than in my recent memory. The prayer list gets longer and longer. And sometimes I wonder why. Other times I am sure my head will explode if I try to overthink it. I think the struggles of all, especially the medical struggles, permeate your soul when you live with a rare disease and spend the core of your life weaving in and out of medical obstacle courses. That one is hard to explain, except if you know, you know.

We moved Meghan back in yesterday. Second year of college and time keeps marching on. This world is such a crazy place. Life is just utterly unpredictable.

How was your summer?

Move-in Day 2022
My Whole World
Three Furry Siblings

Maybe I will just flash a few photos and smile. No matter how exhausting and lonely this journey is, I somehow think we end up ahead. We three have a connection beyond words.

Hug your people. Be mindful of what you say. Laugh often. Love much. And then, laugh again.

#beatingcowdens

What if it all works out?

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What if?

That is hands down my least favorite question. It is one that puts my head in places I’d rather it not go. I believe very much that a positive mindset can have a positive impact on your mental and physical health. Do not ever confuse that with the Toxic Positivity that I ABHOR. They are not one in the same. That being said, my trips to dark mental places typically begin with “What if…?”

So of late, I’ve presented myself with the challenge of “What if it all works out?”

October 2021

When I last wrote Meghan was in the recovery phase of a layered procedure to address a precariously placed vascular malformation in her upper thigh. And, while she is not pain-free, the crippling nerve pain that had started to occupy every hour of every day has faded to black. This pain is different. And maybe for those who have not lived her life, it would be too much. But anything is better than that nerve pain. Anything. She will have an MRI/MRA to check the status of the surgical site in August.

She has been fully weaned off the Lyrica, a drug that was doing its job on the pain but doing an ugly number on her physical and mental well-being. Her thyroid meds have been raised. The muscle relaxant is much lower. And she is starting to have some mental clarity back. She has begun walking, a few miles at a time to get her physical strength back and to give some muscle back to the leg that was just too painful to do much with.

She set a goal. She wants to run a 5K. To some that may not seem like a big deal, but this girl was told at the age of 8 that she could not run. At all. She had to quit soccer. She had to drop dance. She could not join track even though she longed to run. She landed in the pool because it was all she had left. For her, it is an epic goal. This week she got the blessing of her orthopedist to go for it. Slowly. She is hoping to be ready this fall.

What if it all works out?

Don’t worry. We are not delusional. We know the long and windy road will continue before us forever. We know that we often have to pause at the rest stations along the way. We even know that sometimes we have to pause at DIFFERENT rest stations, because she is not me, and I am not her, and we each handle the struggles that come at us differently.

We have not forgotten about this, which we will carry forever.

But, what if it all works out?

I am overwhelmed by appointments on the regular. I am sometimes downright angry that so much of our life is punctuated by traffic and travel. Not to beaches or parties, but to doctors and hospitals. I am sometimes totally twisted that there seems to be no time to breathe and that “regular people” appointments, job issues, car trouble, and nonsense seem to come at us like sideways hail in a storm where the umbrella is inside out and useless. I hide from those I love, unable to repeat the same story over and over like an old and worn record.

But I listen. And I hear. I remember. I know of sick parents and terminal illnesses. I know of cancer battles, aging struggles, and injuries. I pray for families whose children are frighteningly ill. And my heart aches for friends who have buried their children.

What if it all works out?

There is a chance. There is always a chance. That we will screen and scan and bob and weave the worst of what Cowden Syndrome has to offer. My girl, despite her obstacles, has an impressive GPA, a relationship where they treat each other with incredible respect, a career path on the horizon, and life goals to make this world a better place.

What if it all works out?

This week we had appointments two days in a row. 35 miles, roughly 2-2.5 hours each way to Long Island. One was to her favorite orthopedist who never leads us wrong. He wants hand therapy for the healing fractured scaphoid (just “regular stuff” finding its way…) if we can manage it. And, he wants to see her again before school starts in August.

The next day we went to see a Pediatric Rehabilitation and Medicine doctor. We met him as part of the “new team” in December and he was brought on to address issues of pain. In December we could not change anything about the pain management as the goal had to be to survive until the procedure in May.

However, we were both intrigued enough to want to hear what he had to say when things settled a bit. Literally the only opening the entire summer was a 2:30 on 7/7. We arrived after a ridiculous drive and he did not disappoint. In this day and age, a doctor who is covered by insurance and takes an hour or more with you while LISTENING is unheard of.

More miraculous for us, is when issues of chronic pain and a generally overloaded sensory system were brought up, they were met with concrete medical validation, complete with images of the brains of patients with similar struggles. He met Meghan where she was and had a thorough discussion with her, appreciating that she had enough knowledge after a grueling year in Anatomy and Physiology to talk to her on her level.

What if it all works out?

It’s tough to be a teenager. It is exponentially tougher to be a teen whose life is filled with so much pain and medical drama. It is the worst to be a teen when you have lived through and endured more than most adults, and those same adults discount your reality, your pain, and your experiences. It is rare and refreshing when a doctor does not. Apparently, there are a few on Long Island that are worth the Belt Parkway.

He was able to validate what she knew. That she can FEEL everything in her body with abnormal acuity. But he didn’t throw a drug at her, he took notes and kept her talking. Then, when he had a suggestion for a medication to trade out, not add on, and potentially eliminate two and add one, he still wasn’t done. I’m not sure which one of us brought up her purple feet as she had been sitting in sandals for almost an hour on an exam table, but that sparked another conversation. I listened as he asked questions on a list I had been checking off for years. I smiled behind my mask, not because I was glad about what he was going to say, but because it made sense and he was LISTENING.

This is the same doctor who questioned her diagnosis of Hypermobile Ehlers Danlos because it did not feel quite right to him. After a lengthy conversation including all the right questions, and some heart rate checks he said “POTS.”

Postural Orthostatic Tachycardia Syndrome, brought so much clarity for her. Especially in the middle of a week-long hardcore battle with her stomach.

And finally, there was potentially explained everything from her heat intolerance to the painfully twitchy foot that sometimes drives her mad, and everything in between.

What if it all works out?

Why am I not flipped out by this? Because nothing changed. All the symptoms she was having in the office on Thursday have been with her in varying degrees for her whole life. And, truth be told, many I recognized in myself. All that happens with a diagnosis, a label, if you take it for what it is, is that you are validated. Finally. And in this life, it matters. And maybe from this, and switching a few medications around and changing a few things, she will be able to go even further, and do EVEN MORE.

Doctors who work with you, teach you to maximize what your body CAN do. And since Cowden Syndrome is not a disease for the faint of heart, we need all the strength we can get to keep moving forward. Our doctors are mostly a “guide on the side.” They are there to provide scans, medication, and sometimes procedures. But, mostly they are who we need to teach us how to maximize our lives in these bodies. They are to help us never feel weak, less than, or incapable. When they do their jobs right they are to explain and empower.

Meghan has her first GI screen this week. On Tuesday there will be a colonoscopy/endoscopy baseline. It comes at a good time because that stomach has been in a FOUL mood this last week. And we are hopeful that it shows, as GiGi used to say, “A whole lot of nothing!” And then, maybe we will take a break for a week or so and put the doctors on pause.

For today, I come to you from a place of “What if it all works out?” A place of gratitude, grace, and grit.

I am a messy hair, no make-up, living on grace, making-it-up-as-I-go-along loner. I am not ignoring you. I am busy seeking joy on the Belt Parkway and the BQE, and believe me when I tell you, that is a full-time job!

#beatingcowdens

Matching shirts and car selfies. “Vacation” 2022

Gratitude, Grace, and Grit

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May is PTEN Awareness Month.

Gratitude is a practice I try to engage in regularly. There is so much to be grateful for. My child is thriving despite countless challenges. I know of too many parents who can not say the same, by no fault of their own.

This May of 2022 my 18-year-old marked her 20th surgical procedure. We are acutely aware of PTEN, Cowden Syndrome, and its ramifications. Some could say our whole purpose here is PTEN Awareness.

The challenge though is to raise awareness outside of our diagnosed population and our inner circles and spread it to the medical community so testing diagnoses come earlier. The humanization of this condition is critical. The appreciation for its unique challenges is essential. This has to begin with empathy from front office staff, scheduling appointments for real people, trying to hold down real jobs or maintain real school schedules, and keep the “normal” aspects of life together while simultaneously navigating the screening and surgeries inevitably required of Cowden’s patients.

The realization that even within our “rare” diagnoses, no two patients seem to travel the same road needs to provoke the medical community to consider our individuality within the anomaly of a 1 in 200,000 disorder. We need more empathy and less sympathy. We need creative solutions to unique problems. We need people who believe us instead of “patient blaming” and shaming us for symptoms and pain that are poorly understood.

In short, #beatingcowdens involves a combination of “Gratitude, Grace, and Grit.”

I tend to wear T-Shirts with short sayings to keep me motivated through each day. I am fairly sure most people don’t see or read them, but in reality, I choose them more for me anyway.

Monday I had my “Gratitude, Grace and Grit” shirt, very purposefully selected as Meghan, Ella and I loaded ourselves into the car for a contrast MRI/MRA of the vascular tumor in her right thigh, and presurgical testing for that same tumor. A lifetime of surgery and less than stellar interactions have left their mark on my girl. IVs and blood draws hold some of the most intense trauma and there have not been enough consecutive positive experiences to make contending with them any easier.

The anticipation on the 35-mile/ way too long in traffic/ ride was palpable as always. Yet, we found things to chat about that made me simultaneously proud and sad. We always want to remove the hurt from our children. She is quite a stellar young woman, stretching her wings at college, and beginning to fly. We stopped a long time ago wondering what life would have been like without this mutation. In our hearts, we know it shaped us, separately and together.

We are unapologetically Christian. I was raised in the Lutheran Church, an ELCA congregation where I was baptized, confirmed, married, and had Meghan baptized. My beliefs are firmly rooted among other things, in this verse from Ephesians 2, verse 8: “For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God…” Her faith journey had more twists and turns than mine, as changes at critical points in her childhood left her often in a faith freefall. But, my brother-in-law an ELCA minister kept the door open for her always, and before she left for college she was confirmed in the faith of her baptism, one she had struggled to find her path to, but now embraces.

We blasted “Spotify” at times on the drive, and multiple times found our way back to this song, https://www.youtube.com/watch?v=q8anLMKB9N8 “See Me Through It” by Brandon Heath. Chuckling as we repeated the line “When the sky falls, who am I gonna call, the one who put it up there in the first place!”

We have learned to make our own fun, and to make our memories valuable. We’ve learned to use the time we have together and appreciate each other where we are and with all we have. It’s been the most important lesson and has allowed our relationship to develop as ironclad.

The MRI was long. The IV was painful. The pre-surgical testing was annoying. The blood draw was difficult. Those are the uncomfortable sentences people don’t want to hear. We left the hospital in exactly enough time to smack into the start of rush hour.

However, the overall story here, this time, is one of extreme gratitude. The MRI was scheduled at the exact time we needed it, organized by the incredible Interventional Radiologist who is new to us, but seasoned and skilled. It leaned right into the pre-surgical appointment and I was utterly grateful for the man who promised to get it all done in one day, and then personally followed through.

That Doctor. The journey to him was one where all the stars aligned. The orthopedist who is utterly well-respected by both of us and has been a regular in our rotation for a decade knew we needed a new team for this. That orthopedist, trusted by both of us, sent us to a hematologist who has an interest in vascular malformations.

That hematologist had us at hello. Literally. It was days before Meghan was to leave for her freshman year at college. The pain was worsening. There was no time to get to see her in person. So she consulted. Via telehealth. For over 90 minutes. And she prescribed medicine that took the edge off. And she stayed in touch. And titrated doses. And called me back. And emailed. And cared.

She gave us a list of doctors to see and suggested the Interventional Radiologist. And more magical than that, she made sure that we got to see 5 doctors in 2 days during the VERY short window Meghan was home for Christmas. All of them were worth it. One of them was the Interventional Radiologist who we desperately needed.

Meghan’s options were not encouraging. The direct stick embolization in 2019 was nothing short of a disaster. This tumor was deep. Excising it was advised against by the orthopedist as he could offer no promises after cutting through that much muscle that the leg would ever be the same. But, instead of pushing Meghan into a box, this doctor listened, and he thought. And he treated her like a human. When we went into his office, her images were already up, on a huge screen. He looked at me and told me that Meghan’s tumor must hurt. And while I understood on whatever level a bystander could, the extreme pain she was in, I so desperately appreciated the doctor who was advocating for my girl. SHE must have felt a relief even I could not fully understand.

Here in front of her was a real doctor, expressing how oddly placed her tumor was. Explaining how and why the pain was often just unreal. And, offering to try something new. Something outside the box. Because he wanted to help. He connected already with the orthopedist we love. He mentioned consulting with other hospitals and was willing to talk to anyone, to literally move mountains to try to help. He suggested cryoablation-freezing the tumor out. And we were intrigued because it made sense. And, it just might work.

We talked about the week of May 16th as a target date. It was the week after final exams and made the most sense. They made it happen. This doctor consulted, studied, game planned, changed plans, kept Meghan and I informed, and answered any question she had, and then some. Gave her his email. Called her at college. He treated her like a real, actual important human being. A whole person.

And so Wednesday morning, May 18th, we walked into the hospital at 6:45 AM. By 8:45 she went one way and Ella and I another. The doctor called me mid-morning to update me on the transition. He knew I’d be worried. Then, almost 4 hours later Ella and I met him in the hallway as he showed me pictures of the tumor, then the area where the tumor had been prominent. Then the site before and after the cryoablation. He said from his seat it went as close to plan as it could have.

I wanted to hug him. I doubt he had any idea how much his efforts mean. I doubt he truly knows that being treated like a human was so strange, and so utterly amazing.

Maybe this PTEN awareness month we will reach another doctor who wants to learn. Maybe we will reach a doctor who wants to think outside the box, and will understand that it is sometimes critical that they do so. Maybe we will reach a person who schedules appointments who will understand the desperation in our voices when we need to schedule that next one after work. Maybe we will reach someone who needs to hear this message and will use the knowledge to impact a patient in a great or small way. Maybe they will leave us a message here and let us know.

Or maybe the very special Interventional Radiologist, and the hematologist who took the time and the risk without a face-to-face, and the orthopedist who never ever gives up will see this and know they have made an epic difference. Maybe that is enough. Because we will never be able to repay them, and no kind word is ever wasted.

We are still in the early stages of recovery. We have no idea what the long-term response will be. But, we have opened a tiny window and allowed HOPE to creep back into our worlds, and that, well, that is everything.

Gratitude, Grace, and Grit. #beatingcowdens takes all three and then some.

To be continued…

#beatingcowdens

The Rain…

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I walk past a sign in my hallway regularly. It has the familiar phrase, “Life is not about waiting for the storm to pass, it’s about learning to dance in the rain.”

I think about other cliche phrases like, “Into every life, some rain must fall,” or, “You can’t have a rainbow without a little rain.”

And I picture a mom and a daughter in their rain boots, splashing and laughing with a rainbow peeking through the clouds.

Then I retreat further into my corner, chastising myself for even being a failure at that.

I am a rational person. I am numbers, data, and spreadsheets all day. I understand the gravity of world events. I comprehend and ache for epic loss, severe illness, and struggles right around the block. I have gratitude for abundant blessings. I adore my husband. I am watching my daughter flourish on her own at college. I believe in God, and have faith that we are in a resting place on the journey to eternal life.

Yet, I struggle.

And as I have mentioned so many times before, the reality of “parallel truths” sometimes aches in the depths of my soul.

The rain, right now, feels more like a neverending storm cloud. Some days I do not see the sun at all, even when I know it is shining brightly. And I mean that literally and metaphorically.

I have always been one to keep it real. Especially here. I want a mom who finds this page for the first time, soon after a diagnosis like ours to feel there is hope. There are kindred spirits along the road they are about to get on. Yet, I will not ever lie to them. They already know the truth in their hearts. This is not an easy journey.

It took a long while to rid my daily encounters of those who are prone to “toxic positivity.” As I said before, I am acutely aware the blessings of this disease come from the “warning flares” we get along the way. And as I watch others suffer from cancers they did not see coming, I give thanks.

But, I am tired. And I am allowed. This endless cycle of medical procedures, of surveillance, of surgey, of billing battles, and the like, is not for the faint of heart. And if I want to maintain the strength to continue this journey at the top of my game, I need to allow myself to find a bench and sit and rest. I need to acknowledge sometimes it is raining sideways, with hail, and lightning. Sometimes I have no jacket on. Sometimes my hair is matted and I am chilly from weathering the storm.

In the more than a decade that we have traveled this road, I have learned stamina is essential. I have learned it is often lonely. I have learned that there are no holidays. I have learned that “regular life” still comes for you, even on this Rare Disease pathway.

And if I am honest my biggest struggle currently is my search for a new “release.” I love to walk. Well, I loved to walk. Hours, miles, music in my ears, sunglasses on my face. Apple pay for a bottle of water now and again. It was how I kept myself together in the early years. A new pair of sneakers and a FitBit. My luxuries. Except, my foot. January 2019. Before the world shut down, everything changed. And honestly, the single thing that has been the hardest to overcome, far more than the loss of my breasts, my uterus, my thyroid or anything else this disease tries to take, is the loss of those free, endless, peaceful walks.

Because on those walks I would appreciate the birds, the flowers, and the smiling children. On those walks, I would sometimes sing at the top of my lungs without a care in the world. On those walks I let it all go, I detoured off the main road, and I always found my way back, better, and stronger.

I can’t walk far right now. Every step sends pain up my left leg from the foot that twisted on a child’s chair in my classroom over three years ago. I CAN walk, but it hurts. And instead of setting me free, it makes the weight of the world heavier. And when I try to push, I am reminded of the new pain in my opposite knee, and the muscle knot in the side of my leg, where the body tries to compensate for the limp I try to hide. On the days I work, I count each step. I ration the Advil. I take the stronger medication at night, so I can try to sleep. I wrap it, I brace the other knee that is failing, carefully under my jeans. I am never without the painful reminder of that injury.

I don’t know if it will ever get well. I have not given up trying, but I just don’t know.

And sometimes, like when the Cowden’s syndrome seems to be at play for a bizarre sudden overgrowth of the gums, and the fitting of a crown becomes oral surgery along the way, or when the girl falls miles away and breaks her wrist, or when the HVAC fails with an open-ended repair bill, or when the husband’s company closes, and the list keeps going, and everything changes, I get totally overwhelmed. And I fall behind on Cowden’s things and “regular” things. I kid my daughter that she is allergic to change. I am sure it is something she got from me, besides a faulty PTEN gene and wild curly hair.

I want to take a walk.

But instead, I sit. In the middle of the storm. I sit cold and soaking wet and cranky and lost. And I long for a release.

But, inevitably someone sits beside me. Someone I dearly love. And they hold my hand and give me a hug, and they just sit. And slowly, out of the corner of the sky comes the tiniest ray of sun. And before I know it, there are birds and a rainbow. And being wet doesn’t feel so messy or lonely anymore. And as the sun starts to warm my body and dry my clothes, I find the strength to stand up and move forward. It’s not dancing, but it is moving. Even if it is ever so slowly.

I reach out and hug my husband, and my daughter. And I remember my second favorite release is to nurture my underattended blog.

#beatingcowdens

Ugly Cry

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I cried this weekend. Not just the tears down your face from a sad movie cry, but the gut-wrenching sobbing cry that leaves your head pounding and your eyes swollen shut. And, it wasn’t just once. It was at least three separate times, and the weekend isn’t over yet.

I wasn’t going to write about it. I mean nothing specifically terrible happened. As a matter of fact, I drove 130 miles each way to watch my girl swim this weekend, and to give a little love to my second best girl, Ella.

I could have stayed in those stands forever. It was the place I felt the most purpose, and a heart full of pride. She has swimming goals. But my mom goals for her have already been exceeded. There are kind teammates, friends who laugh together. There is a boyfriend, and a best friend, just attentive enough that I know they have her back, and Ella’s too. School is exactly as hard as it should be, and she landed comfortably on the Dean’s List, far exceeding my own first semester.

But the weekend wasn’t all there. And truth be told there are entire weeks that have to happen before the weekend.

I was in the middle of ugly cry three this afternoon when it crossed my mind it was time to write.

I started this blog almost ten years ago with the promise to myself, and to Meghan that I would, with reasonable privacy precautions in place, record a “real” story of life with Cowden Syndrome. At least, our real story. Over the last ten years, I have come to “know” too many amazing families that each deal with their own real story. I have laughed and cried and prayed over miles and continents and oceans with so many of them. There are not two of our stories that are the same. Yet, they all have value. And if ours is the story chronicled here, I deplete its value by hiding the fact that I ugly cry.

I have been repeatedly humbled by the number of people who reach out to me and thank me for telling our story. I often wonder why people even read. But I would be lying if I did not include these days. And I do not like to lie. As grandma used to say, “I haven’t the memory to be a good liar.”

The truth is this. Even ten years into this diagnosis, I get overwhelmed. It is overwhelming. Sometimes feeling like you are at the bottom of the mountain, all day every day is utterly exhausting. To constantly feel like you might be missing a scan, like you are behind on an appointment, planning a surgery, and cramming anything else into the cracks in between work and sleep can leave you burned out. I swear some days just picking up the phone to schedule something triggers PTSD. And for that, if you know, you just know. Because every office thinks they are your only office, and none of them seem to comprehend it is through your JOB that you have insurance.

Truth be told, it doesn’t all have to be Cowden things. Sometimes “regular people” things seem overly complicated and just generally hard. And when you mix together a rare, poorly understood disease and some “regular people” things, too well sometimes you just…ugly cry.

Regular readers know that I suffered a foot injury while teaching 3 years ago. And it has complicated my life in a “regular people” way, that if it was my only medical issue it could potentially be all-consuming. The return to in-person teaching this year has left my body feeling like I jumped off a steep cliff with no parachute. My body literally feels like it is in a free fall from the hours of standing upsetting my balance and causing pain up my leg, in the opposite knee, and in both hips. So, adding to the fact that the school day itself, double-masked and peeling hands from sanitizer, literally leaves me “stick a fork in me” done, I have restarted physical therapy, added a new orthopedist, been working through pain medications one at a time, and recently added acupuncture to the “keep me functional and sane” regimen.

Friday, the battle over this, most of which I will be deliberately vague about the extent of, took me to a whole new low. I am floundering. There is nothing much to say to me, so I have skillfully pulled back from most friends and family. I must press on at all costs. So I keep my head down and forge ahead. But Friday I found myself on the floor of my kitchen with two well-meaning dogs slobbering all the skin they could find while I simply lost it.

Then, I shook it off as best I could and planned and laminated new lessons like it is year one teaching, not year 25. Well, because essentially as an educator this is year one. Nothing is like it was before. Or, well, maybe it is still year zero. Either way, this whole toss it up in the air, and see where it lands system we have going here involves new plans. And new plans take time. And migraine medication.

I leave a tab open on my computer for everything I am contending with at the moment. Sometimes it freezes the system and I have to reboot. A metaphor? Probably.

One of those tabs was USPS tracking. I paid $16 to mail a letter, priority, certified, AND return receipt because I NEEDED a signature. The signature card arrived, with the number “C19” and no name. I can only hope that when I need it, someone can confirm the identity of “C19.”

Another tab is for our mail order pharmacy, my constant nemesis. One medication of Meghan’s which was canceled for no apparent reason on 12/23 took me through 4 phone calls to them and 4 to the doctor’s office before I finally emailed the doctor directly Thursday evening. This is a really cool hack Moms of chronically ill kids figure out. You eventually pick up on the email handle used at hospitals and you realize despite the use of “portals” where front-end staff screen your correspondence, most doctors get their own email. So, Friday morning he sent in a script himself. Except, it went into the wrong “pocket.” There are different areas for different types of scripts with different authorization processes. So, I regularly check all the “pockets” and there it was, in one where it was going to be denied. Again.

To make it even more interesting, when I had logged in originally I couldn’t see any of her meds. Or Felix’s. So I logged back into her own account, which she had authorized me to use, and which she had consented to merge with mine when she turned 18. When we started this on 12/23 there was plenty of medication. It is now dangerously low. I placed a call to the pharmacy. 97 minutes, and 4 representatives progressively up the food chain later, I had successfully gotten the medication transferred and expedited, but not yet processed. That will be a wait and see… And, the linking of the accounts, after being told it wasn’t possible, and essentially that I was nuts, the best I got was a “ticket” put into tech. I changed all the passwords to match so when I toggle three accounts I can move faster. When the final woman asked me to hold for a survey I said, hopefully for a recorded line, but simply because I had to get it out, “No, I can’t because I will not give me the opportunity to specify how many ways each of the 4 of you have been unable to help.”

You see I had already been on with them the day before over one of Felix’s medications which they told me was covered for 60 out of every 90 days. I still haven’t wrapped my head around a reason, other than cost. So, I found it cheap enough to buy, through Amazon Rx. Yep. That’s a thing. When Walmart called me, they wanted insurance information, because “this script is well over $1200.” When I gave her the Amazon RX code she actually gasped. $131. Should be in Tuesday. I will find the time to get to New Jersey to get it.

After the orthopedist. Because the acupuncturist said I should probably ask for an MRI of the right knee when she was treating my left foot… I was hoping the lidocaine patches would do the trick… not so much.

And the dentist is Wednesday. For a tooth I am sure I have cracked. Because grinding my teeth is just reality.

And physical therapy is Thursday. Just because.

Oh, and “you’ve got mail” just informed me FAFSA (hours of my life for no reason at all) is due again soon.

And, the driver safety course is expiring.

The notepad beside my computer reminds me to make time to call insurance to see if they can authorize Meghan’s MRI now, so I can schedule it for May at the facility adjacent to the hospital, not at all conveniently located on Long Island where the new Interventional Radiologist (who actually seems like a kind, decent human who will eventually need his own post) will have a go at the vascular malformation butting up against the nerve bundle in her thigh.

We’re overdue for dermatology. The one we had left, and I am in search, but time ticks by. I need a visit to the ENT for the fluid in my ear, the psoriasis in both ears, and the migraines that are relentless and likely sinus-based. She’s due for an abdominal sonogram and a colonoscopy. And, actually, so am I. But at least I have a GI in place for her. That’ll be early July, hopefully after she is healed from the IR procedure. There are times I wonder when she will get her first job. And other times I know that BEING her is a job most people would have quit. I can only hope her first employer understands when there is no job history.

On Sunday night I clean up my notes from a week’s worth of phone calls. I do my best to make a new list to stay on task for the week ahead. I try to keep myself honest in getting things scheduled, even when I know some will continue to balloon into bigger and seemingly insurmountable problems.

On Sunday night I also reflect. And that is where I take the time to forgive myself for the ugly cries. I ground myself in the knowledge that even though so many have it so much worse, the parallel truth is that my pain, and my being overwhelmed is equally valid. No more, no less. And I am entitled to my time to yell and scream and carry on.

On Sunday night I pick myself up, dust myself off, and remember that I am loved. And then I make sure I allow an hour of TV with two doggies and the man who loves me unconditionally, ugly cries and all.

We remain #beatingcowdens – one day at a time.

Love, Mom

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Before Meghan left for college last August I worked to think of creative things to send with her. One of the things I decided on was a playlist. Sure, we have some overlapping music tastes, but it was not to be about that. It was for songs that she would be able to listen to and imagine me either telling her or singing alongside her. Since I am a TERRIBLE singer, a playlist was definitely the most kind and efficient option.

I have listened to this playlist “Love, Mom” on Spotify about a million times. The link is here-https://open.spotify.com/playlist/2O76yoB451R0Fkz8flFtvm?si=bb3117761b0a4fca

I DO NOT OWN THE RIGHTS TO ANY OF THESE SONGS!

I listened to every song over and over before declaring it a fit. Then, I listened to the playlist, first in order, then on shuffle for weeks before I “gave” it to her. We have added songs through the months and even taken one or two out. But now it seems like a chronology. Some songs that will be life advice forever, and some that were epically important as she settled away from home for the first time

  1. “The Gambler” Kenny Rogers

“You’ve got to know when to hold ’em
Know when to fold ’em
Know when to walk away
And know when to run
You never count your money
When you’re sittin’ at the table
There’ll be time enough for countin’
When the dealin’s done…

2. “Humble and Kind” Tim McGraw

“Don’t take for granted the love this life gives you
When you get where you’re going don’t forget turn back around
And help the next one in line
Always stay humble and kind…”

3. “I Hope You Dance” LeeAnn Womack

“…I hope you never fear those mountains in the distance,
Never settle for the path of least resistance,
Livin’ might mean takin’ chances, but they’re worth takin’,
Lovin’ might be a mistake, but it’s worth makin’…”

4. “Here Comes the Sun” The Beatles

“…Little darling, I feel that ice is slowly melting
Little darling, it seems like years since it’s been clear

Here comes the sun do, do, do
Here comes the sun
And I say it’s all right…”

5. “My Shot” Lin-Manuel Miranda (Hamilton)


“…I’m a diamond in the rough, a shiny piece of coal
Tryin’ to reach my goal, my power of speech: unimpeachable
Only nineteen, but my mind is older
These New York City streets getting colder, I shoulder
Ev’ry burden, ev’ry disadvantage
I have learned to manage…”

6. “I’ll Stand by You” Pretenders

“...I’ll stand by you
Take me in, into your darkest hour
And I’ll never desert you
I’ll stand by you
I’ll stand by you…”

7. “Have it All” Jason Mraz

“…May you be as fascinating as a slap bracelet
May you keep the chaos and the clutter off your desk
May you have unquestionable health and less stress
Having no possessions though immeasurable wealth
May you get a gold star on your next test
May your educated guesses always be correct
And may you win prizes shining like diamonds
May you really own it each moment to the next

And may the best of your todays be the worst of your tomorrows
And may the road less paved be the road that you follow…”

8. “How They Remember You” Rascal Flatts

“…You’re gonna leave a legacy, no matter what you do
It ain’t a question of if they will
It’s how they remember youDid you stand or did you fall?
Build a bridge or build a wall
Hide your love or give it all
What did you do?
What did you do?Did you make ’em laugh or make ’em cry?
Did you quit or did you try?
Live your dreams or let ’em die
What did you choose?
What did you choose?
When it all comes down
It ain’t if, it’s how they remember you…”

9. “Best Day of My Life” American Authors

“I had a dream so big and loud
I jumped so high I touched the clouds
Wo-o-o-o-o-oh, wo-o-o-o-o-oh
I stretched my hands out to the sky
We danced with monsters through the night
Wo-o-o-o-o-oh, wo-o-o-o-o-ohI’m never gonna look back
Woah, never gonna give it up
No, please don’t wake me now…”

10. “Rise Up” Andra Day

“…All we need, all we need is hope
And for that we have each other
And for that we have each other
And we will rise
We will rise
We’ll rise, oh, oh
We’ll riseI’ll rise up
Rise like the day
I’ll rise up
In spite of the ache
I will rise a thousand times again
And we’ll rise up
High like the waves
We’ll rise up
In spite of the ache
We’ll rise up
And we’ll do it a thousand times again…”

You get the idea… and a few of my favorites down further in the list…

15. “The Comeback” Danny Gokey

“…There is no mountain you can’t face
There is no giant you can’t take
All of your tears were not a waste
Your one step awayJust when they think they’ve got you game set match
Oh here comes the comeback…”

23. “Fight Song” Rachel Platten

“…This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me…”

29. “Good To Be Alive” Meghan Trainor

“…It feels good, don’t it?
Living your life in this quick moment
And you never ever think it’s gonna go away, but I swear
I know you’ll wake up one day and say
Yeah, I got things to do (you’ll say)
Yeah, I got mountains to move
And it ain’t about how sad it could be
It’s about how good it should be
Come on, sing…”

32. “Let it Be” The Beatles

“When I find myself in times of trouble, Mother Mary comes to me
Speaking words of wisdom, let it be
And in my hour of darkness she is standing right in front of me
Speaking words of wisdom, let it be…”

35. “Defying Gravity” (Wicked) Idina Menzel and Kristin Chenoweth

“…I’m through accepting limits
‘Cause someone says they’re so
Some things I cannot change
But ’til I try, I’ll never know!
Too long I’ve been afraid of
Losing love I guess I’ve lost
Well, if that’s love
It comes at much too high a cost!…”

40. “Colors of the Wind” (Pocahontas) Judy Kuhn

“…You think the only people who are people
Are the people who look and think like you
But if you walk the footsteps of a stranger
You’ll learn things you never knew, you never knew…

How high does the sycamore grow?
If you cut it down, then you’ll never knowAnd you’ll never hear the wolf cry to the blue corn moon
For whether we are white or copper skinned
We need to sing with all the voices of the mountain
We need to paint with all the colors of the windYou can own the Earth and still
All you’ll own is Earth until
You can paint with all the colors of the wind”

42. “Do Something” Matthew West

“…I’m so tired of talking about
How we are God’s hands and feet
But it’s easier to say than to be
Live like angels of apathy who tell ourselves
It’s alright, “somebody else will do something”
Well, I don’t know about you
But I’m sick and tired of life with no desire
I don’t want a flame, I want a fire and
I wanna be the one who stands up and says
“I’m gonna do something”…”

45. “Magnify” We are Messengers

“…God be greater than the worries in my life
Be stronger than the weakness in my mind
Be louder let your glory come alive
Be magnified…”

51. “Stand By You” Rachel Platten

“…And oh, truth I guess truth is what you believe in
And faith, I think faith is having a reason
And I know, know love, if your wings are broken
Borrow mine so yours can open too’Cause I’m gonna stand by you
Even if we’re breaking down
We can find a way to break through
Even if we can’t find heaven
I’ll walk through hell with you
Love, you’re not alone
‘Cause I’m gonna stand by you…”

This one was added recently after Meghan brought it to me. It seems she has been paying attention to her father and I all these years….

56. “Like My Father” Jax

“…I need a man who loves me like
My father loves my momAnd if he lives up to my father
Maybe he could teach our daughter
What it takes to love a queen
She should know she’s royaltyI need a man who’s patient and kind
Gets out of the car and holds the door
I wanna slow dance in the living room like
We’re 18 at senior prom and grow
Old with someone who makes me feel youngI need a man who loves me like
My father loves my mom

I need a man who loves me like
My father loves my mom…”

So, with few words of my own, and many from talented musical artists, we remain

#beatingcowdens

Photo Credit Natalie Licini http://www.jerevele.com

Parallel Truths

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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