The Future of Healthcare

Published on February 21, 2023 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?

Easy is for Amateurs

Published on January 23, 2021January 23, 2021 by beatingcowdens2 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And then tonight there was exasperation on a trip outside.

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

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

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

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

Easy is for amateurs.

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

#beatingcowdens

What will your verse be?

Published on July 27, 2020 by beatingcowdensLeave a comment

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

-Walt Whitman (O Me! O Life!)

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

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

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

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

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

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

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

What will your verse be?

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

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

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

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

Health sometimes fails by no fault of our own.

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

We often can’t choose what happens to us.

What we can choose is our response to those things.

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

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

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

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

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

What will MY verse be?

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

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

What will MY verse be?

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

#beatingcowdens

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

Published on June 19, 2020 by beatingcowdens1 Comment

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

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

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

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

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

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

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

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

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

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

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

April, our older girl welcomed him right away.

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

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

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

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

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

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

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

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

She is driven. Focused. Loyal. Compassionate.

She managed a 4.0 AGAIN.

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

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

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

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

#beatingcowdens

Pandemic Got Your Tongue?

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

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

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

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

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

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

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

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

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

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

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

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

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

I am a cancer survivor.

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

We are immune compromised.

I am a NYC Public School Teacher.

My husband is an essential worker.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We take this call to social isolation really seriously here.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I miss hugs, and offering comfort and being comforted.

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

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

#Family

#Flattenthecurve

#COVID19

Still #Beatingcowdens

“…What is essential is invisible to the eye.” Antoine de Saint-Exupery

Published on February 2, 2020 by beatingcowdensLeave a comment

“You don’t LOOK sick.”

Like all things your perception changes over time. When I was much younger if someone asked me for the most hurtful thing someone could say to me – it would have been something you’d be much more likely to guess.

But, years have passed and so much has changed.

Now, hands down, this is close to the top of the list.

I am reminded today of my senior year in high school. Madame Eicoff taught accelerated French. At the time it seemed like a great idea, and the irony that I took seven years of French and grew up to marry a Spanish man was never lost on me. One of the many ironies of life. But in Mme. Eicoff’s class we read “Le Petit Prince” by Antione de Saint-Exupery, and reading and understanding, and feeling that book in French… well, close to 30 years later the emotions are still fresh in my mind. But, I digress…

I don’t want to LOOK sick. I guess in some ways it could be a compliment.

Except it’s not.

Everyone who says it, or thinks it, or shouts it, or whispers it, does it with judgment.

And I guess my question is – What does SICK look like?

In this day and age where tolerance is expected, I feel like we are lagging behind in acceptance of rare disease and chronic illness.

What qualifies as sick?

Is it constant trips to the doctor? Tests? Scans? Referrals to more specialists? Surgery after surgery? Recovery?

Is it having doctors “Google” your disease in front of you, only to have them authoritatively verbally plagiarize the first page of the search when you have analyzed every relevant article on the first ten?

Is it time after time being made to feel you are not credible, or “less than” because no one can make it better?

Is it begging and pleading for pain relief only to be accused of being an addict, when you don’t want a pill at all?

Is it constantly plotting and planning any outing so as to utilize the fewest amount of steps to minimize the often bone crushing pain and fatigue that follows tasks as simple as grocery shopping?

I will agree there is a fine line between simple reality, and self-pity. I dance across it sometimes.

And then I play the music louder and dance right back.

This is my reality. Self-pity has no real purpose. People typically don’t want to hear about it.

But, just because it makes you uncomfortable doesn’t make it any less true.

I am not perfect. I judge. I judge for the wrong reasons sometimes. I judge people who I know nothing about sometimes. I am a work in progress. (As a dear friend often said, “I live in an all glass house.” Nothing about this is intended to throw stones.)

I am learning every day that saying “everyone has something” and really BELIEVING it are different.

I am learning that mine is no more, and theirs is no less and that is perfectly ok.

I am learning that human suffering is a universal, and “sick” carries a stigma that should be eliminated.

Because, if you are “sick” and you “look” it, you are likely “seeking pity.” If you don’t “look” it, but you have an “acceptable” (read well known) illness, you are “brave.”

Mental illness is not visible, yet depression and anxiety plague so many in astronomical numbers. Still we are embarrassed to speak of it, and it is surrounded by shame.

Chronic pain is not visible, not even behind the gritted teeth of the (insert so many people you know here) that you see every day. Living your life with pain that never leaves in and of itself can drive you mad. Think about the last headache you had. The one where you had to close the doors and shut the lights. Now think about it forever…

Real illness is often REALLY invisible.

This is neither a contest or a competition.

This is real life.

We are all real people.

And maybe it’s that simple. Maybe we need to go back to the simplistic view of a young child.Rare Disease Day is February 29th.

I am certain if you yourself are not suffering, you know someone who is.

They may look just like everyone else in the room.

I’ve set goals for self-correcting my unintended judgment of others.

I’ve found an excellent starting point at contemplating that every one of us is deeper than what can ever be seen with the eyes.

#beatingcowdens

WHAT IS A RARE DISEASE?

There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world¹, each supported by family, friends and a team of carers that make up the rare disease community.

Each rare disease may only affect a handful of people, scattered around the world, but taken together the number of people directly affected is equivalent to the population of the world’s third largest country.

Rare diseases currently affect 3.5% – 5.9% of the worldwide population.

72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.

70% of those genetic rare diseases start in childhood.

A disease defined as rare in Europe when it affects fewer than 1 in 2,000 people. (www.rarediseaseday.org)

Show Up

Published on December 22, 2019April 4, 2020 by beatingcowdens4 Comments

It was three MRIs in two days that week in November. That’s too many, in case you were wondering.

One was an extension of an August MRI, which had been a knee follow up. If you’ve been following – you know that long story. If you’re new, the AVM (Arteriovenous Malformation) she was likely born with in her right knee, has cost her 8 trips to the OR so far. It requires frequent attention.

By frequent I mean we see the orthopedist more often than we see most family. And this time the whole muscle band up her thigh had been acting odd. So we reached out to the orthopedist who asked for an MRI of the right thigh before we saw him at 1 PM that Tuesday.

By “odd” I actually mean really painful. Pretty much all the time. Painful enough that walking long distances or kicking swim practice got hard to maintain. But there is so much that hurts it’s hard to sort out where something stops and other things start. The hip had been “out” more than in, and even the chiropractor could not sort out why. The knee pain was persistent enough to leave her wondering if something was wrong again. The shooting pain, tingling and occasional numbness left her wondering if a nerve was somehow damaged.

Turns out, in typical form, she was right pretty much all around. This kid has an uncanny awareness of her body.

The doctor’s student came in first not far past 1PM. The MRI results were up, and he mentioned the AVM. We said, “In her knee?” When he said no, and mentioned one higher up in her leg, I pulled the plug on his practicing and sent for her actual doctor. Turns out the thigh MRI showed a vascular malformation in the back of her right thigh. It was somewhere in between the muscle and the bone, and adjacent to the sciatic nerve. When the images changed you could actually see the proximity to the nerve.

Hip issues – check

Knee pain- check

Shooting (nerve) pain-check

So he asked for an MRI with contrast of the pelvis. “Sooner rather than later.”

But then he had to address the issue that had been of greatest concern walking in the door.

The right shoulder had been presenting an escalating problem all during the fall swim season. She is a powerhouse my kid. She pushes through because she knows nothing else. The awareness that the Hypermobile Ehlers Danlos diagnosis added on in July could at least explain the frequent partial dislocations was little comfort to the body that was living with them. A thorough examination of a shoulder with extremely limited range of motion left us with orders for an MRI arthogram of the right shoulder. It was time to rule out a rotator cuff tear. We left with both MRI orders, and scripts for muscle relaxant and pain meds. We were told to try to get it done by Thursday. Yep 48 hours.

Thankfully Meghan’s insurance, which is the same as my husbands, (insurance coverage and coordination of benefits could take another post, so just trust me) does not require prior authorization for MRI testing.

So I got on the phone with scheduling and secured an appointment at the same facility we had been at at 11 AM for 3:30 PM. That ended up being the pelvic MRI with contrast, something we avoid until we are confident something is there. IV in place, back in the tube for another 45 minutes.

We were able to schedule the arthogram for 8AM the next morning in Brooklyn. But, not before learning that an arthogram was a pretty awful test. As I had tried to barter for a time that would not take her out of school three days in a row, I was told that the doctor had to be on site. I was asking for a quick schedule and I had to take what was available. I was wondering why a doctor had to be on site, but my girl found the answers first.

And as we contemplated the test we sat in two hours of traffic to make the 32 mile trip home.

The next morning we were met by a well meaning tech in a Brooklyn office who thought my girl was going to have the catheter placed without me. You can say all the rational things you want about her being almost an adult. But PTSD is very real. No matter how smart and articulate she is. It is flat out real. And that was about as huge a trigger as there is. So I got a vest, signed consent for whatever I was about to be exposed to and held her hand while she screamed in pain. The catheter was placed. The contrast was injected, and we were back to another 45 minuted in the tube.

The appointment at 1 the next day was overwhelming to say the least. The pain, the anxiety and the exhaustion were palpable. The news that there was no rotator cuff tear was met with simultaneous relief and exasperation. And if you don’t quite understand that it is probably because you have not lived with daily pain so intense you would give just about anything to hear that it was fixable.

Our orthopedist is nothing short of amazing, and he was able to explain to her that it was likely that repetitive partial subluxations caused muscle spasms that left the shoulder sitting just out of place enough that it was incredibly painful. And because the muscles were in almost a constant spasm she couldn’t get it back “in.” He explained the strength of her back and how some muscles are overpowering others. He broke down the directions for PT. He pulled her from the water for 7 days. He started a muscle relaxant 3 times a day.

Then, he had to explain to her that we should head back to Lennox Hill Hospital to see the interventional radiologist who dealt with her prior AVM. It had been three years since we had seen him, in hopes we were done for good. The placement of this “small” AVM (and think relative here, does a splinter hurt? Yep. So a grape hanging out somewhere in between the bone, muscle and nerve probably would too.) was difficult from an ortho standpoint. He felt that embolization, closing off the blood supply to the malformation, would give a quicker recovery than trying to dig it out.

We had an appointment on December 2nd at Lennox Hill. Just enough time to let the muscle relaxants start to kick in, PT to begin, and the shoulder to start moving slowly and painfully.

The doctor looked at the scans, did his own ultrasound and told us to schedule the procedure. We left with a date of Tuesday, December 17th for an outpatient procedure.

The date was carefully chosen by my girl. The 17th meant she’d miss only 4 days of school, and for a junior with a rigorous schedule and a 4.0 that mattered.

Also, the 17th meant she could go to Lancaster, PA the weekend prior to compete in a qualifying swim meet she had worked for years to make. She had been looking at this meet since she began swimming years prior. When she made her first, second, and third cuts over the months leading up to it, she was ecstatic. Now, she was facing this meet with a different set of eyes. The training interruptions caused by her shoulder meant she was unlikely to attain any best times. However her gentle giant of a coach reassured her she should go for the experience.

And it certainly was an experience! We left for home Sunday the 15th with the coach’s approval of three good swims. She knew it was the last time she’d be in the water for a bit.

We left home Tuesday the 17th for at 8 for a 10 AM arrival. This was surgery 19. We knew the routine. She had had nothing to eat or drink since 9 the night before. The wait was long. It was after 2 when we were waiting to leave her in the OR. And as we were leaving the team made a last minute change that they would do the procedure on her stomach. That meant a more aggressive anesthesia and an overnight stay which we were not prepared for.

We were placed in luxury accommodations, better than most hotels I’ve stayed in, because pediatrics was overbooked. We ended up in the executive suite. With nothing we needed. Felix headed home on the bus to gather supplies. He then drove back to the city and met me at the door to the hospital before heading home for the night.

I was glad we stayed. The pain needed hospital level management. The pain medication allowed for some brief silly time. She was discharged around noon the next day.

As I went to gather the car from the lot I was prepared for the hefty overnight fee, but not for the giant scrapes along my right rear panel. Clearly my car had been hit, hard. The bumper clip was broken. I had just enough time to file a claim with the garage before she let me know the transporter had her in the main lobby.

I settled her into the car in terror because she could not get a seatbelt on. I prayed so hard during that white knuckle drive down the FDR and through the tunnel. We arrived safely home 45 minutes later where a neighbor saw us struggling and helped her up the stairs into the house.

As I write, it is the afternoon of 12/22. If you’ve read this far you know it’s been a long month. But the longest days came after we arrived home.

This kid is busy. All the time. She is at school. She is at swim. She is at lessons. She is at the doctor. She is at PT. She is NOT used to being home.

Because I think most of us can relate that when you are still there is time to think. And thinking is hard. When you are still there is time to feel. And often feeling is hard.

My girl is used to being just on the outside in most social situations. I do not know why. I can theorize for days, but it doesn’t matter really. It just is. So when you are on the edge, you get your interactions with people when you are there. When you are not there you get the often difficult to process feeling that you are not missed or your absence isn’t noteworthy.

There were some cards, and some well intentioned messages from well meaning family and friends. They lit up her whole being.

If I’ve learned anything from watching her recover and rehab time and time again, it’s this. When you’re not sure what to do, show up.

I don’t mean in person necessarily. Although those visits can bring brief humor and relaxation. The irony of this technologically connected world is that we are more distant than ever, when it is so easy to show up.

When in doubt, send a text. There is no need for gifts or grand gestures. Offer a face time call. Let someone know you care, especially in the first 4 days when then pain is often the worst. It’s ok to reach out because these phones are all on mute. And you won’t bother someone sleeping, you will only make them smile when they wake.

Whether it’s one surgery or 31, the chronically ill patient appreciates it.

There are so many super-convenient ways to show up.

So many that we are practicing showing up more for others. Because the world is round. And you may not ever repay the kindness sent to you, but showing up for someone else can change everything.

#beatingcowdens and#hEDS

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

Forced Pause…

Published on September 16, 2019 by beatingcowdens1 Comment

My sister had a series of hamsters when we grew up. I don’t remember how many. I actually don’t remember much besides the smell of the cage, and the wheel they used to run in. They never seemed to tire of it, and each spent long periods of their day there. Maybe it’s because they were caged with few other options. Maybe they didn’t know any better.

Regardless, I’ve thought about those hamsters a lot lately.

I feel very much like we live on the wheel. Every day is centered around executing a well-oiled machine where an insane amount of activities, assignments, and appointments fit into a tiny window. So at an early hour we hop into the wheel in a sense, and we run all day.

When you’re in the wheel you may think about nothing except for the next task. Or you may wonder if there is a better way to get through the day. You may long for a break from the routine and the schedule. You may wonder what you’d do if…

We are chronically busy. Sometimes out of necessity and sometimes by design. Sometimes, in the case of those of us with chronic illness it is a little of both.

In my house we are busily maintaining health, through frequent appointments and therapies. We are also busy trying to fit a regular life around it. There is constant motion.

Until there isn’t.

I spent so many moments wishing I could take things a little slower. I wished I could have some time, for a full nights sleep, to clean my house the way I want it, to visit with friends, to take long walks, and…

And now I’m here.

A January foot injury at work has morphed into a monster that refuses to heal. Stress and strain and alternate gait patterns protecting the original injury continue to set the healing process in the wrong direction. A stress fracture of the cuboid bone continued to worsen. It’s now my first official “fracture.”

It is time for me to pause.

This time there is no rushing out of the boot. There is no making believe its all ok. There is waiting. Resting. Minimal weight bearing. There will be additional imaging to clear the healing before I head to physical therapy. There are only very short car trips to doctor’s appointments and to transport my girl.

I am here. In my house. Alone.

And it sounded to heavenly when I was dreaming about it in the middle of the chaos of the day to day.

Now it sounds a lot like the tick-tock of the clock hanging over my head.

It feels a lot different when I have to let someone else teach my students.

It is not as productive as I’d hoped, since all the cleaning and sorting and organizing I promised myself if I ever had time is currently off limits with the whole restricted movement thing.

It is a battle not to let my head overthrow me with its worry about “real” Cowden’s issues that may at any point smack us in the face. It is tough not to think about the backlog of surgeries that will come, but have now been placed in triage.

And yet I have to make a choice.

There was a very inspirational GoalCast in my Facebook feed this morning.

Claire Wineland Dies at 21 and Leaves Beautiful Message

And I’d encourage you to watch it if you have a moment.

Her life was way more challenging than mine. Yet she made a choice that I still struggle with sometimes.

These last few months without the proper use of my feet have often left me battling depression. I do not have it all together, or have an inspirational message as this young woman left behind in her short time on earth.

What I do know is if I choose to wallow in this I will miss the “pause” that has been placed in front of me.

Instead I will make the conscious choice to make what I can do, more fulfilling.

I am going to try to write a lot more. I am going to have some people visit. I am going to handle a few “sitting down projects” that are in my path. I am going to open the windows and appreciate the fall weather even if I can’t walk in it this year.

I’m going to look at my orchids, and their beauty and crazy, stubborn irregularities that make them magical for me.

I am giving small pieces of my life back to reflectiveness and prayer and simple mindfulness.

Someone took the wheel out of my cage.

For however long it’s gone, it’s on me to decide how to view it.

If you take the time to watch the link above you’ll understand when I say today I am looking to add some lights and a few throw pillows.

This is not easy. If you’re reading this you likely go through hard things too.

I am a work in progress. Thankfully God’s not finished with me yet.

I’ll be here with my feet up.

This too will pass eventually.

#beatingcowdens

Six Wheels and a Boot

Published on August 31, 2019August 31, 2019 by beatingcowdens4 Comments

At any given point during our 10 days in Disney, our party of three also had six wheels and a boot.

We must have looked unusual to anyone who passed us by.

I traveled with a virtual pharmacy in my purse, which is really simply a string bag on my back, because who really wants to be fancy anyway?

The week before we left we had a PILE of appointments. I think I lost count at 17 in the 5 days. One of them was the orthopedist Meghan sees a few times a year. He was catching up on the new diagnosis of Ehler’s-Danlos Syndrome, paying careful attention to her knee, which by all accounts has been her ‘Achilles heel’ her whole life. There had been pain in that knee for weeks prior, which is always a concern. One of the surgeries she has had repeatedly has been to correct the tracking of the patella. Anxiety is warranted.

This doctor suggested an MRI to confirm the knee was tracking correctly. He also said that she was ‘not to walk consecutive distances longer than one block’ at least until the pain in the knee settled. He prescribed a painkiller and a muscle relaxant. He told me she was not to walk the parks in Disney. She needed to spend most of the day confined to a wheelchair. And while there is gratitude for the temporary nature of this situation, there is a mental and emotional adjustment to enduring it.

This was not a totally new arrangement for us, as the knee has limited her walking in the past. However, there is always the hope that with age things will change. And while Meghan is healthier and stronger than I have ever seen her, the realities of Ehler’s-Danlos and its wear and tear on the connective tissue are real and very present. So, out came the wheelchair.

And, one of my appointments was an MRI follow up for the foot that has been a disaster since I fell at work January 8th.

The initial fall partially tore the lisfranc ligament. Which might have been easier to recover from, except ligaments don’t show on xray. So the initial diagnosis was a sprain. Which was treated with 5 days rest. Then 2 weeks later when the pain was more than it should have been and my primary asked for an MRI, GHI decided I didn’t need one yet and I could wait 6 more weeks. So, I forced the foot into a shoe for a total of 8 weeks post injury before I couldn’t stand it anymore. At that point an MRI finally picked up the partial tear.

I was booted for about 6 weeks. I was pulled out of work and off my foot, but largely too little too late. I returned and handled the foot conservatively, waiting to feel better. Or at least closer to being able to walk like I did on January 7th.

Every other week there have been check ups at the podiatrist. Two visits to a specialist in NYC. Days blended into weeks and my patience started to wear thin. I began Physical Therapy, but even the PT was baffled by the amount of pain in the foot and encouraged me to keep looking for answers.

A repeat MRI was scheduled for 8/2. I obtained the results on 8/14. While the pain in the foot should have been an indicator, I was not prepared to hear that I needed to return to the walking boot, as I had a likely stress fracture in the cuboid bone, and a neuroma in between my second and third toes. This mess courtesy of my body compensating to protect the lisfranc ligament while it healed. I had unconsciously shifted all my weight to the outer part of my foot. I was to limit my walking. By that night I was back in my walking boot ordering a knee scooter for the trip to Disney.

I remember after the fall in January, and even after the diagnosis in March, feeling so happy that I would at least be healed and back to walking before our trip. The best laid plans…

So when we headed out for a 5AM flight on 8/18, we had all our suitcases, a wheelchair and a knee scooter. We checked three bags, and Felix pushed Meghan while I scooted behind. We were a sight.

And after waking up at 2:30 for our flight and traveling via scooter through the Magic Kingdom, I wanted nothing more than to go home. Immediately. I felt like I had done a bad step aerobics video over and over on only my left thigh and butt cheek. You might not realize the strain on the thigh when you rest the knee with a way-too-heavy boot hanging off the back. There was just no way I was going to make it.

So Monday morning I released Meghan and Felix to the Magic Kingdom. I sat in the hotel room. I cried for about 10 minutes. I called my mom. I made a cup of tea. And then I made a plan.

I researched a new set of eyes to consult on the foot when I arrived home. I rearranged our return flight to a more civil time to I could book an appointment for the 29th with confidence. I stretched. I took way too much Advil.

And sometime that morning between the NSAIDs and the caffeine, I started to feel the magic. I sat on the hotel balcony. I strengthened my resolve.

I am not sure at all why it seems everything is so hard. I couldn’t fathom why I had sent my otherwise healthy kid off in a wheelchair, while I sweated inside a walking boot, all the while healing from the Fine Needle Aspiration thyroid biopsy two days prior for thyroid nodules recurring on my previously quiet and well-behaved remaining thyroid lobe. (Partial thyroidectomy 1993 – dx multinodular goiter, 18 years before I had ever HEARD of Cowden’s Syndrome)

In that moment most of what we were facing had nothing at all to do with Cowden’s. And yet, the same choice existed in that moment. I had to decide that I was going to make the best of it. I had to decide that I was not giving up my family vacation for more medical nonsense. I had to decide to find a way to enjoy. Because the struggles, the pain, and the drama would all be waiting for me at home whether I found the “magic” or not.

All the positive thinking in the world was not going to make anyone’s pain go away. Not even a stomach burning amount of Advil and a few strong cocktails could do that. But, I am a huge believer in a positive mindset. And in that Monday morning overlooking the Hawaii themed resort, things started to fall into place in my mind and my heart.

We get 2 weeks a year to spend as a family, free of other obligations. We get 2 weeks a year. And I wasn’t going to waste it.

I joined them later that day, and never left them again. We traveled together – a family of three, six wheels and a boot. We laughed a lot, we argued a little, and generally found the best in each other. We met up with my sister and her family for a super fun night together.

We got to Mickey’s ‘Not So Scary’ Halloween Party for the first time. We saw more characters than we’ve seen since she was quite young.

Finally, after many years of staring at the giant “Hot Air Balloon” in Disney Springs, I got myself on. Because, Why not? Magical.

We found that our resort had a stand serving dairy free Dole Whip – the first time my 16 year old ever had soft serve. Magical.

Some people wonder how we do the same vacation year after year. They wonder how we don’t tire of it all. For us, there is a magic that can’t be explained, only felt. There is wonder in eating safely in restaurants and having access to a bakery free of gluten, dairy and soy. There is joy in eliminating something so basic as food isolation, and sharing meals, sometimes as a family of three, and other times with some Disney friends.

There is magic running into Pluto in the lobby of your resort, or finding the Seven Dwarfs waiting to meet your family.

There is magic in roller coaster selfies, and Figment reminding us to use our imagination.

There is magic in all things familiar, and always finding something new.

There is magic when you seek it, even with six wheels and a boot.

Because there will always be battles to fight. So sometimes they can just wait 2 weeks.

The foot problem is not solved. It’s time to find some serious answers. I won’t open the school year for the first time in 22 years. These next few weeks will be about making plans to heal.

There is no magical solution for my foot. There will be more MRIs, and more doctors.

My patience will be tested in new ways. I am not sure what to expect, and that makes me nervous.

But there will never be a single second that I regret adding 4 wheels and a boot to my own self to enjoy and appreciate the magic with my family.