Today, it has been thirteen years since my first book, Beyond Breathing, went live.

Today, it has been 5,441 days since I last hugged my daughter.

I know exactly how and when Beyond Breathing began. It was December 12, 2006, when I received a sympathy card, a long letter, and an enclosed $100 check. The card and donation were in memory of my daughter Jena who had just ‘moved up’ to heaven due to complications of having cystic fibrosis (CF). They wrote in the letter that the $100 was to go toward sharing my story, insisting my story was worth sharing. I was angry, grief-stricken, and shoved the check, and the letter, in a drawer and ignored it until sometime in February of 2007.

One cold day in early February 2007,  I came across that letter and the un-deposited check. I felt obligated to write something and decided to forward the $100 check to The Cystic Fibrosis Foundation (CFF). I turned on the computer and angrily wrote:

“On Monday, December 4, 2006, at 9:57 am, my beautiful daughter, Jena Marie Cassalina, lost her life to cystic fibrosis. She was thirteen.”
The first time I wrote those words, I looked down and saw my worn blue rubber CF awareness bracelet. The inscribed word, breathe, stared at me, almost mocking me. Breathe, it said. Breathing was something Jena was no longer doing and breathing was something I was finding so hard to do. It was just one breath that kept me from my daughter. Jena was beyond breathing. Breathing, I now know, is something way overrated.

I stared a long time at what I had just written. An avalanche of emotions had risen up from deep inside of me as I felt my obligation to that check had been sufficiently met. I shoved the $100 check into an envelope, threw it in the mailbox, and I just curled up in a ball and sobbed. I had no idea those words would be the beginning of my healing and they would become the introduction to an actual book that I would eventually write and publish, about my life.

What I didn’t expect after writing those words was the emotional release it gave me. Through writing, I expressed anger, sadness, and a host of other emotions that were buried along with my daughter. Over the next six months, I went back to that computer, added to that paragraph, and wrote more cathartic memories. Through tears and downright gut-wrenching sobs, my emotions poured out of my broken heart and onto each page. It was my diary; it was my way out of the mourning abyss I was barely living in.

At one point I started to read some of the stories to my girlfriends, who all suggested that I share the story with others. I thought they were being kind, supportive, and I didn’t think much of it until I received an email from a friend a few weeks later.

What I didn’t know was that Marc had emailed my entire journal, my personal diary, to a mutual friend who was a prolific writer, a sportscaster, and an extraordinary CF dad.  Marc had emailed my entire diary, the one  I had only shared with my girlfriends, to Frank DeFord.

On October 20, 2007, I received an email from Frank. It was the first time I was informed he had read my private and very personal journal. After yelling at Marc, and being thoroughly embarrassed, I read Frank’s email. He loved it, told me I needed to publish it, and then went on to be the ‘hard-nosed editor’ and began editing what he thought was a book was actually my diary.

I ended up apologizing to Marc, took Frank’s advice, and eventually published Beyond Breathing. The title went live on October 27, 2008. It was my diary published for all to read. I had written every word and had designed the original cover myself. I put in as much symbolism as possible to describe Jena. If you look in the clouds, you can see her lungs, there is a rose on the red baton representing the transfer of my little girl from me back to God, and it’s all in motion as I believe love never ends.  My only final and deciding reason for hitting the ‘submit’ button to publish my diary was that if anyone wanted to meet my daughter, they could, in the pages of the book.

Truthfully, I didn’t think anyone would actually read it.

I was wrong.

So very wrong.

When I received the very first hardcover copy of the book from the publisher, I dedicated my memoir to Jena and placed it on my bookshelf, next to my Bible, and said a prayer up to heaven hoping she was proud of me.

My memoir has sold well above any expectations I could have imagined and within six months I had received the Editor’s Choice Award, Readers Choice Award, and Star Award, and a bunch of wonderful 5-Star Book Reviews. The self-publishing company then took Beyond Breathing to their ‘traditional’ arm of publishing and sent me on a few book tours, re-designed the book cover, and connected me with Penguin Publishing.  The new cover went live on March 24, 2009. Thirteen years later, my memoir still sells copies every single month. I guess folks still want to meet my Jena, and for that, I’m forever thankful.

As a 13-year anniversary gift, I’d like to give back to those who have supported me, met my Jena in the pages of Beyond Breathing, and continue to do all they can in support of all those with Cystic Fibrosis.

I’m giving away 13 free signed copies of any one of my three books, including Beyond Breathing to the first 13 requests. (See details below)

All I ask is for you to cover the $7.95 for S&H. (Beyond Breathing is also available on Amazon for $13.40)

Interested in my other books?

See You at Sunset (list price: $13.99)

Embracing the Beauty in the Broken (list price: $13.99)

I’d gladly send you signed copies of any two books for $20, or all three books for $30 and those prices include total S&H costs.

It’s an anniversary that I just wanted to do something special.

Inbox me, DM me, or email me at: MargareteCassalina@gmail.com for information about signed books.

After you read it, let me know how many pennies show up in your life. And if you have read it, let me know what touched you the most. Every story is worth sharing.

Thank you.

The post The 13-year Anniversary of Beyond Breathing appeared first on Margarete Cassalina.

Remember the challenging board game: Clue?

The object of the game is for players (characters) to strategically move around the game board (a mansion), collecting clues from which to deduce which suspect murdered the game’s perpetual victim: Dr. Black, and with which weapon, and in what room.

I loved the game as a kid because you had to gather information, you had to think, deduce, and render a conclusion. It seemed like a wonderful journey and adventure in mystery. I was fascinated by the whole concept. I might guess wrong, but even the wrong answers would eventually lead me closer to the correct result.

I loved wondering…who’d done it? But I was also curious about how they got there.

Like Clue, life seems to be its own challenging adventure. Ask the right questions. Make an effort. You get to decide your moves around the board. Think, deduce, and eventually your wrong answers lead you closer to the correct result.

In my own personal game of life, I’ve certainly had my share of challenging adventures. Don’t we all? Which is why I’ve always been surprised by the same similar questions:

• “How do you stay so positive?”
• “Why are you not angry?”
• “How did you move forward after that?”

I used to just answer, “I don’t know, I just take it one step at a time.” Though true, I began to question, is being positive a skill, a decision, or merely a personality trait?

Being positive, or rather finding the positive in a given situation, is a conscious choice I make just about every single day. It’s not always easy when my emotions seem to gain more ground than I’d like. It’s not easy when I see cruelty, hear ignorance, or feel as if heartache is just too much to take. So, I asked myself how can I diminish, or remove that anger and negativity? Well, it’s not unlike the skills I used as a child while playing Clue. Except now the perpetual victim isn’t Dr. Black, it’s negativity, it’s anger, it’s fear.

• I gather information: Do I have all the facts? Did I listen with an opened mind and heart?
• I deduce: Is this worth being happy or sad about?
• I conclude: I choose to be happy. I choose not to let this break me, hurt me, or keep me from living my best possible life. I choose my own conclusion.

If we just negatively emotionally respond to all the challenges and hardships in life, then we’re just helpless victims. If we decide that we can control how we choose to respond well, then, that makes the difference in the quality of how we live our lives. We can’t control others, we can’t control catastrophes or all the heartbreaking hardships that befall on us, but we do have a choice of how we choose to respond to them.

Now mind you, this way of thinking didn’t happen overnight and it’s not always easy. I’ve lived through enough pain and heartache to be angry at the world until my last breath. I’ve been angry, very angry. I’ve been hurt, to the core of my being hurt. I’ve wallowed in deep despair and depression. But one day I sat down and wondered, do I want to live the rest of my life letting outside circumstances control my joy that lives within me?  I questioned who I was and how I wanted to live.

That day turned into a day of writing and soul searching. By the end of the night, I had created my own ‘mission statement’ about who I wanted to be and how I was going to get there. This is what I wrote:

“I will continue to grow emotionally, intellectually, and enjoy the journey that is my life. I intend on doing this by reflecting on past experiences, grasping new concepts, and seeing the bigger picture. My life’s adventure will continue to challenge me with possibilities and opportunities for which I will be grateful. My writings, my books (Beyond Breathing and See You at Sunset, Embracing the Beauty in the Broken), will be a catalyst with which I will utilize to compassionately help those with grief and their own personal journey. I will actively seek to be inspired, and I’ll aspire to be inspiring. I will live with purpose and meaning. I will continue to be a dedicated volunteer to the Cystic Fibrosis Foundation as a fundraiser, advocate, and voice for those who battle this disease. I will seek enjoyment and fulfillment in my personal life through reading thought-provoking books, writing with candor and contemplation, and spending quality time in meaningful conversations with family, friends, and complete strangers. My greatest source of strength comes from God and those who see my authentic truth. My quest is to evolve into the person I was meant to be, the person who has faced her childhood fears of inadequacy and now has the tenacity it takes and has learned the skills needed to face future unknown obstacles with courage and grace. I will strive to incorporate attributes like passion and perseverance, inspiration and motivation, friendship and love, in all aspects of my life. I will regularly focus on the importance of taking care of my mind, body, and soul while I pursue my objectives. I will trust myself not to lose faith in my ability to overcome challenges no matter how hard they may seem. My character goal is to be known for having integrity, persistence, and passion for life, knowing my most valuable commodity is my time, and my most cherished possession is the ability to love with all my heart.”

Yup…that’s it. My mission. And now, I’m me on a mission. I read it every time I seem to need a booster shot of perspective.

I believe you always have a choice on how to see life, and the one constant I found in life is that life constantly changes and so does the way you see it. Some things I’ll choose to cry over and some things I won’t. Some things are worth my time and some things just aren’t. Some people make dreams happen while other people make excuses. I know I’ll still make wrong choices, and life will continue to throw challenges my way, but I will continue to pursue a life in kindness, gratitude, love and with as much passion I can muster.

Think.

Deduce.

Render your own conclusion.

Now, back to Clue and Colonel Mustard. Maybe he did with a candlestick, in the Cellar, to light the way for others?

Maybe Miss Scarlett did it with a wrench, in the kitchen to fix something that was seemingly broken?

What about you? How have you removed the anger lurking just beneath the surface? Did you do it with compassion, on the internet with kindness in your comments?

Or maybe you did it with humor, in the Study, with heartfelt forgiveness to someone who didn’t deserve it?

Perhaps you stood up to debilitating fear with total honesty, in the living room, to your spouse?

No matter how you do it, gather the clues until you get to the correct answer. Get in the game, decide for yourself, don’t be a pawn to your own emotions. Remember, it’s your life and if you don’t decide “Who’d done it?” someone will decide for you.

Find your mission, it’s not impossible, and make your adventure your own wonderful journey.

Game on!

The post Your mission? Here’s a Clue appeared first on Margarete Cassalina.

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Margarete Cassalina, the author of the award-winning memoir, Beyond Breathing, and fictional novel See You At Sunset, has released her 3rd book: Embracing the Beauty in the Broken which has just received the Editor’s Choice Award.

“Embracing the Beauty in the Broken is an incredibly moving, inspirational book. The book’s premise is summarized well by the epigraph to the chapter “Obliteration”: ‘Strength isn’t about how much you can handle before you break; it’s about how much you can handle after you’re broken.’ That idea is something I will take with me long after today. Nobody escapes life without being broken in some way, and by courageously and vulnerably sharing your story, you are providing a beacon of hope. Kudos to you!” –Editorial Review Board

October 22, 2019

 Embracing the Beauty and the Broken is more of a conversation with a friend than a book. In thirty powerful, raw and real, chapters of conflict and resolution, Margarete shares compelling stories of loss and overcoming obstacles with authenticity and humor. Each life-crisis shared provides a valuable message of choices, decisions, and the power of teachable life lessons. One lesson is that we are not defined by our past. You can learn how to push past years of self-doubt, unforeseen obstacles, and heartbreak by being encouraged to take action in your own life in the “Take it or leave it” sections of the book. At the end of each chapter, Margarete provides practical exercises and resources for anyone wanting a more in-depth exploration of their own personal growth and journey. This thought-provoking book inspires positive personal internal development by giving the reader hope, motivation, and the confidence to live their own best life.

The post LIMITED Time, Limited SUPPLY – Embracing the Beauty in the Broken appeared first on Margarete Cassalina.

Hi there!
You may be new to me, my website, or my blogs. I thought I’d take a moment to introduce myself and hope you do the same.
Me? I’m an open book.
Actually, I wrote a book about my life and it seems to have touched a lot of people.

I’ll get back to the book in a minute but let me give you a little personal history.

This is my wedding picture; circa 1991. Laugh all you want but high hair and the mullet were in-style back then…trust me.

My backstory won’t be nearly as long as you might think. But to play it safe, grab a drink, alcoholic or not, I certainly won’t judge, and let’s get to know each other…okay, me first.

Marc and I got married in January 1991 because we “had to.” I mean really, who gets married in 4 weeks, in a snowstorm in January unless there is a really good reason?

My incredible reason, aside from adoring Marc, was born on July 17, 1991; we named him Eric Anthony Cassalina. Eric was also born with a blockage in his intestines, called meconium ileus. Those issues turned into a diagnosis of “Cystic Fibrosis.”

What’s Cystic Fibrosis you ask?

Cystic Fibrosis (CF) was unknown to me then, the 22-year-old new mom.

What was CF?
How did Eric get CF?
How can we get rid of CF?
Is CF bad?

One sentence from the doctor who diagnosed Eric with cystic fibrosis said, “CF is a fatal genetic disease. The median life expectancy is nineteen.”

BREATHE

By age one, Eric was doing very well regarding his health.  Marc and I thought Eric’s health would be different than what the doctors predicted. We thought we could handle anything. We were young, in love, and invincible. Our biggest mistake was that we thought it was easy to breathe.

Our daughter Jena was born in March during the blizzard of 1993. She too was diagnosed with Cystic Fibrosis.

Though both our kids were born with CF, Marc and I never let CF define who they were. We made sure of that. We traveled around the country in our RV, we created our own unique way of ‘normal,’ and we lived in spite of CF.

Jena loved to draw. Sometimes the drawings were heartbreaking. Here is her picture she drew to describe her “Two Worlds.”

I was a stay-at-home mom for 17 years making sure all the treatments were done correctly and on schedule. I was diligent in making sure all the doctor appointments were made every three months, and all the medicine was taken on-time, every time. Regardless of compliance, cystic fibrosis is a monster that is relentless.

Knowing I needed to do more, I began advocating for The Cystic Fibrosis Foundation on Capitol Hill and even met Hillary Clinton while in the hospital at Westchester Medical Center. The picture below was taken while Jena was in the hospital for a lung exacerbation; you would never know she was “sick” would you?

When Eric got his driver’s permit we thought that would be the most frightening time of our lives…

That was until CF had other plans and in October of 2006 Jena was evaluated for a double lung transplant at the Children’s Hospital in Pittsburgh.

CF is a horrible disease.
Jena never did get her new lungs in time and she lost her battle against CF on Monday, December 4, 2006, at 9:57 am.

I will never be the same.

This is why I write.
I write to create CF awareness.
I write to pull myself out of a void.
I write to share my story and to have you *meet* my amazing daughter Jena. She once told me that pain is not a valid reason for stopping…so I didn’t.

She showed me beauty in nature and that each breath is precious….it is.
She encouraged me to be at ease with what I can’t control…no other person has ever taught me so much.

I laugh and cry each day, I call these “Jena moments”…and I move forward because life is a journey not to be wasted.
I can relate to anyone who has lost someone they love and for that, I am truly sorry.
Be rest assured, love never ends. Ever.

This blog has been a place of personal growth for me, a place to put my heart into words and share my thoughts with anyone who’ll read them.

When Jena “moved up” to heaven in 2006 I was a total wreck; barely alive. The writing was, and still is, my therapy.

I consolidated the pages of my diary into a manuscript which I sent to a friend who said I had to publish them. The next thing I knew I had published a book that has received the Editor’s Choice, Reader Choice, and Star Award. Go figure.

The first time I wrote those words, I looked down and saw my worn blue rubber CF awareness bracelet. The inscribed word, breathe, stared at me, almost mocking me. Breathe, it said. Breathing was something Jena was no longer doing and breathing was something I was finding so hard to do. It was just one breath that kept me from my daughter. Jena was beyond breathing. Breathing, I now know, is something way overrated.

The book and I went on tour and I was able to meet some fabulous people who have shared unbelievable stories. (Check out my ‘brag book‘ of some pretty cool folks I’ve met along the way!) Beyond Breathing was even in production to become a movie, but perhaps that’s another blog.

I continue to advocate for the Cystic Fibrosis Foundation and served as National Leadership Council Member for 10 years, National Public Advocacy Co-Chair for 3 years, and National Volunteer Leadership Co-Chair for 2 years. As National Public Advocacy co-chair, I helped pioneer volunteer advocacy efforts, leading volunteers to Capitol Hill, and helped the launch of the Cystic Fibrosis Congressional Caucus which assisted in getting a newborn screening in all 50 states. Regionally, in New York, I served as Board Member of the Northeast Albany CF Chapter and locally, I organized and ran numerous events to increase awareness and has raised funds to support the research to find the cure.

I continue to pursue life with purpose, meaning, and passion. I am fortunate to be able to speak straight-from-the-heart about life, motivation, perseverance, and cystic fibrosis to folks around the country like; American Airlines, ADP, Novartis, and Vertex Pharmaceuticals.

When I share my story and my book Beyond Breathing, the biggest feedback I receive is that I am raw, real, and passionate. Then someone always will ask, “When are you going to write another book?”

In August of 2017,  I published my second book, See You at Sunset, where I bridge you from my non-fiction life into the fictional world of my imagination while still adhering to my passion of bringing awareness to cystic fibrosis with a little love story thrown in for good measure.

Facing this new era of my life, the 50s, I began to reflect on life and all the challenges I’ve faced and all the ones I have yet to embrace.  In November of 2019,  I published my third book:

If there’s one thing that life has taught me is that it is your choice how you handle any given situation. It is your choice to see joy whenever you can and savor experience monumental moments like my son getting married in May 2017.

Thank you for your time, your heart, and I hope you stop by again soon.

Relationships take time, so don’t be a stranger, be a friend and sign up for future blogs, leave some comments, and let me know how you are and what you’re thinking. You can never have too many friends.

Until then, get outta here, go stretch your limits and see where life takes you.

The post I guess I should introduce myself… appeared first on Margarete Cassalina.

Margarete Cassalina, the author of the award-winning memoir, Beyond Breathing, and fictional novel See You At Sunset, has released her 3rd book: Embracing the Beauty in the Broken which has just received the Editor’s Choice Award.

“Embracing the Beauty in the Broken is an incredibly moving, inspirational book. The book’s premise is summarized well by the epigraph to the chapter “Obliteration”: ‘Strength isn’t about how much you can handle before you break; it’s about how much you can handle after you’re broken.’ That idea is something I will take with me long after today. Nobody escapes life without being broken in some way, and by courageously and vulnerably sharing your story, you are providing a beacon of hope. Kudos to you!” –Editorial Review Board

October 22, 2019

 Embracing the Beauty and the Broken is more of a conversation with a friend than a book. In thirty powerful, raw and real, chapters of conflict and resolution, Margarete shares compelling stories of loss and overcoming obstacles with authenticity and humor. Each life-crisis shared provides a valuable message of choices, decisions, and the power of teachable life lessons. One lesson is that we are not defined by our past. You can learn how to push past years of self-doubt, unforeseen obstacles, and heartbreak by being encouraged to take action in your own life in the “Take it or leave it” sections of the book. At the end of each chapter, Margarete provides practical exercises and resources for anyone wanting a more in-depth exploration of their own personal growth and journey. This thought-provoking book inspires positive personal internal development by giving the reader hope, motivation, and the confidence to live their own best life.

The post FOR IMMEDIATE RELEASE – Embracing the Beauty in the Broken appeared first on Margarete Cassalina.

M. Bellerose juggles her time with the corporate world and yoga workshops. She’s very passionate about uplifting other women through positive talk, meditation, and inspirational stories. During her free time, you’ll find her meditating in the local park with her two-year-old pug, Toby

Cystic fibrosis (CF) was once considered a death sentence. But with advancements in modern medicine, that is no longer the case. Now it is possible for people with CF to live a full life. But they will need your full support for that to happen. With that being said here are some pointers on how to best support someone living with CF.

Don’t go at it alone

One of the most important things you can do is form a support team, as doing so will benefit both caretakers and patients. In this case consider what Erin Mahoney, lung transplant program administrator at Loyola University Medical Center, has to say: “The adage ‘it takes a village’ still rings true in the care of the cystic fibrosis patient.” Granted you might not actually need an entire village. You do, however, need several people, including other family members and a primary care physician. Knowing a pulmonologist, nurse coordinator, dietitian, psychologist, respiratory therapist, pharmacist, and social worker will help you fully support your family member or friend with CF.

Have food ready at all times

Writing for Cystic Fibrosis News Today, long-time CF patient Janeil Whitworth emphasized the importance of food. She writes that people fighting CF “need to consume a ridiculous amount of calories to fight infection and sustain our bodies, which work extra hard to function.” Thus, it would be wise to have food ready at all times. Remember, even seemingly mundane tasks such as preparing meals can be physically and mentally draining for CF patients. So, save them the time and effort by preparing healthy food for them as necessary.

You’re allowed to have moments of weakness

As written before here, it is extremely difficult to be a CF Mama. You’ll have to do a lot just to take care of your loved one. Aside from that, the experience can be emotionally wounding. Watching them go through painful medical procedures can be heartbreaking, but you’ll have to be strong for them. That being said you’re allowed to have moments of weakness. Allow yourself to have “pity hours,” but not days. That’s normal. Just make sure you come back stronger.

Find something they enjoy and do it with them

Very Well Health, in an article on living with CF, points out that exercising even in small amounts can “translate to improved lung function.” In this regard, exercise doesn’t have to be exercise per se. It can be anything that the person with CF loves doing, like gardening, or taking a stroll in the park. Whatever it is, make sure you do it together, or in the company of friends and family.

Know your medical options

The support that you will provide will even more invaluable in the coming years given America’s worsening medical workforce crisis. Quartz’s in-depth feature on this crisis notes that the U.S. will be short 46,900 to 121,900 physicians by 2032. Worse, 44% of those currently working in healthcare reported feeling burnt out already. This concern, unfortunately, extends to other medical professions, notably nursing. Maryville University’s look into the healthcare industry in the U.S. shows how it is under severe strain with a predicted shortage of 100,000 family nurses. It is vital therefore that you know where the nearest hospital or clinic is that can help your family member or friend with CF. This will ensure that they get any treatment they need as quickly as possible.

It is important to remember that you are not along in supporting someone with CF. Find your own support system too, as this will give you the backup to take care of a person with CF.

Content intended only for the use of margaretecassalina.com

By M. Bellerose

WANT TO BE FEATURED IN AN UPCOMING  BLOG or FLAWSOME FRIDAY?  —> CLICK HERE!

The post How to Support Someone Living with Cystic Fibrosis – by Guest Blogger M. Bellerose appeared first on Margarete Cassalina.

*Note: Flawsome Friday is a part of a blog series. 
Each Flawsome Friday post will feature a guest blogger sharing their personal opinions and experiences in the hopes of inspiring, motivating, and connecting with others. 
Comments are welcome below. 

  

Q & A with Flawsome Christina DeMaio, NY

“Tuesday’s with Morrie made me appreciate our time on this earth in a whole new light.”

Q: What makes you flawsome?

I would like to think it’s because I’m a work in progress. I’m not perfect and probably never will be but every day I choose to put more into this world than I take out.

Q: Who has been your biggest teacher, mentor, or influence in life? Why?

The biggest teacher, mentor, or influence of my life is not just my dad or just my mom, but both of them. I know it sounds so generic, however, it’s not.

My dad gave me my drive and determination to know if I hit a wall I climb over it break it or find a way around it and to never give up. My mom, she gave me my compassion, my heart, my grace, to love others and make their day better with a call, letter, cooking dinner, prayer they may not know and patience.

Q: What scares you but you still want to do? 

Giving up control. I am a slowly learning life happens on gods time, not mine and I can’t always sit in the driver’s seat, I still want to get married one day it scares the life out of me to think about but I know when it will be the right time I’ll feel it.

Q: Bucket list item? Or something you want to do if you knew you couldn’t fail?

Open a restaurant. I’ve always said one day when I retire I will do it. I love cooking. I have passion for enjoying the moments of it thanks to fond memories of my family, I enjoy making people happy and enjoying the moments of life but I also know from my younger years what it takes to run a restaurant and it’s no joke running and owning a restaurant. I always dreamed I could have gone to my great grandpa’s restaurant, The Rib Room in New Paltz, NY (now Snug Harbor) and I know cooking for fifty people on Palm Sunday and thirty people on Christmas Eve, our traditions together as a family live on through him and his recipes!

Q: What’s your favorite book? Why?

I’m not a big reader, however, Tuesday’s with Morrie, it made me appreciate our time on this earth in a whole new light.

Q: What’s your hobby, side-business, or passion? Why?

Favorite passion our family business 6th generation Minard farms making cider I know it like the back of my hand and I love what I do!

Q: Where is your favorite vacation spot? Why?

Cape cod reminds me of childhood and now most recent vacation with family especially niece and nephew

Q: As our first guest blogger, how does it feel?

I’ve never written a blog but I’m glad I have a beautiful lady who I consider a friend who was once a stranger to learn from

Want to be FEATURED in an upcoming Flawsome Friday?

—> CLICK HERE!

The post Flawsome Friday with Christina DeMaio appeared first on Margarete Cassalina.

“Whether you think you can, or you think you can’t – you’re right” –Henry Ford

Think you can’t go extreme?  Think again.

Going extreme is more than hiking. It’s more than strapping on your boots, throwing on a backpack, and enduring three months of grueling training. It’s more than you signed up for, you just don’t know it yet.

So here’s the thing, I’m a writer and I love analogies. If you mix that with this past Central NY Xtreme Hike for Cystic Fibrosis weekend, where I hiked 12.4 miles, in 10 hours, to summit 3 Adirondack mountain peaks (Algonquin, Iroquois, and Wright) all in the name of cystic fibrosis, then you know this blog was bound to happen.

Tell me, what does extreme mean to you?

Whether you’re conquering a mountain or being forced to deal with a diagnosis, or you’re courageously starting something new, it’s what you become on the other side of your comfort zone; that’s your extreme.

Brace yourself, here come my analogies, broken down, to explain what I mean.

FIND A MENTOR

I’ve been deeply involved with cystic fibrosis since 1991 when my son Eric was diagnosed. Then in 1993, I doubled-downed when my daughter Jena also received the same diagnosis. I’ve been passionately in this fight for over 28 years and each year when I meet new families I get re-engaged trying to do all I can to support the efforts in finding a cure.  My heart goes out to the newly diagnosed families because they have no idea how to navigate this new path they’re on. They’re scared, frightened, and when they ask for my advice or support I empathize with their fear and do my best to guide them from where they are to that next small step in front of them. I would not dare assume they could navigate from my vantage point taught through all the trials and tribulations I gained from being Eric and Jena’s mom. They only need help one step at a time.

I was on the receiving end of such support while seeking help to train for the Xtreme hike.  Marc and I began our group training three months prior to the set hike date of August 24, 2019. Our fabulous, and highly experienced hiking guide, aptly named ‘Adirondack Jack’ knew how to give us the right steps at the right time.

“How do you train to hike the Adirondacks?” he’d ask us. Without missing a beat he’d answer with a grin, “Hike the Adirondacks!”

Adirondack Jack created a 3-month schedule that would build our muscles and stamina from where we were to where we needed to be in August. It was one grueling and exhausting hike at a time.

Q: Can you think back to anything that you began that you knew you needed support? Did you search for a mentor or seek professional help to deal with a diagnosis, or help to get you ready for a new job, a new life, a new personal goal? 

For me, I already had hiked three CF Xtreme hikes before I signed up for this one.  The prior hikes consisted of more miles, higher elevation, and I had hiked longer hours but this Adirondack hike I knew would be a beast. I knew I needed guidance.  If you’ve never hiked in the Adirondacks, you should try it. An Adirondack mile, I quickly learned, is like no other mile I have ever done before; just like each hurdle in your life is unlike any other obstacle before.  Just because you’re familiar with a seemingly similar challenge don’t be quick to assume you can handle it and don’t put so much pressure on yourself to have all the answers. Find a mentor.

YOU DON’T NEED TO SEE THE WHOLE PATH TO TAKE YOUR FIRST STEP

It’s August 24th, hike day. It’s 5:00 am and we’re all excited to begin. With our headlamps lighting only three feet in front of us somehow it’s enough to see all the tree-roots, small boulders, and twisting inclines in our path. Each minute passes with every step we take, and slowly in the darkeness, we move further along. Eventually, Mother Nature joins in and she slowly illuminates our path just as we reach our first rest stop, a waterfall.

In life, sometimes we can’t see three feet in front of us, or we can’t believe that we can handle even 10 more minutes of the stress-filled life we’ve just been dealt.  Yet, if we take life in chunks we can handle it. Even if it’s just three feet at a time, or in 10-minute blocks, somehow Mother Nature, God, or the Universe will join you, lighting your path, helping you reach your first stop of rest.

When you think you can’t deal another minute, tell yourself, “I can get through this for the next 10-minutes.” When you think you can’t take another step, just promise yourself you can take just one more. When you’re at your worst, please know it’s okay if all you can do that day is breathe. Take those dark times in small chunks of time and at some point, your path will get brighter. Do what you can, when you can.

TRUST, HAVE FAITH, AND BREATHE

As the hiking day progressed, I soon realized that we were not really hiking but rather boulder climbing. There was no leveling out, just tackling the relentless steady incline of the mountain. Each step was spent calculating foot placement on the large rocks, muddy waters, or navigating how to scale boulders taller than I was. My hands were constantly reaching for tree limbs to pull the rest of my body upward, and my face felt the thrashing high wind-chill temperatures of 30 degrees.

When we came upon the first of massive rock that had minimal climbing options, I looked at it dumbfounded. There was absolutely no possible way I could climb the 20 plus feet of that rock-ledge before me. There wasn’t a place to put my hand or my foot. There was not a tree limb to grab.

“I can’t do it,” I said. “It’s impossible,” I thought.

Then I heard, “Yes, you can.”

I looked up to see fellow Xtreme hiker Mike standing just a few feet above me.

“Here,” he said. Mike extended his hand toward me. “Now,” he continued, “put your foot there, on that.”

By ‘that’ he meant a sliver of a bump that jutted out from the rock.

“I don’t think I can do that,” I said.

“Trust me,” he said.

Then, I remembered what Adirondack Jack had said to me earlier, “Remember when it looks like you can’t do it, know you can. Thousands of people have done it before you, and so can you.”

With that, I reached for Mike’s hand, put my food on the pencil-wide step and up I went.

Q: Have you ever thought there was absolutely no way you could do something? Have you ever thought, ‘I can’t start something new?’ Have you ever said to yourself, ‘I can’t dare to be adventuresome, I’m too old, I’m too young, I don’t have the skill?’ Did you ever think you couldn’t possibly achieve something so impossibly hard? That’s your extreme.

I’m deathly fearful of heights, I mean not a just little, I’m talking full out, pass-out phobia. Having said that, I also know that I refuse to let fear dictate an experience or keep me from a goal. In the past, I have tried to climb the fire towers that are often at the top of the mountains we climb. I have never been able to get to the top of one, in fact, I have never tried because I remind myself of my fear of heights. I become my own worst enemy.

Then I started training with this amazing group of supportive people. By the second training hike, I felt courageous to try another fire tower. I only made it up one flight, the phobia set in and had to go down. Back on the ground, this group cheered me on. They cheered because I attempted. With newfound braveness, I kept attempting with each training hike. One after the other, I eventually climbed to the top of my very first fire tower. It was Mt. Adams, it was July 27th, it was the day before my 51^st birthday. Having not shared my upcoming birthday to anyone, somehow this group knew and they all joined me, at the top of the fire tower, and sang Happy Birthday to me. #BestBirthdayPresentEver

What I’ve learned in life is when you allow people to see your weakness, to see your raw and real you, be courageous, and trust them. It’s a chance worth taking. These guys knew my challenges, knew my weaknesses, and never did they exploit them. Instead, they supported and encouraged me. Being vulnerable isn’t a weakness, it takes a lot of courage to let your guard down and say, “Hey, I need help. I’m not sure I can do this alone.”

HUMBLE HEROES

At the pace I was hiking, there was no way I would be in the first hiking group. There were a few hikers that I call ‘sonic’ because you’d see them for a bit and then poof they’re climbing like Spiderman with the speed of Sonic the Hedgehog. These guys led the way and we all need leaders. With muddy boots, they left footprints in which I could follow. When they had a misstep, they quickly let you know the better path to take. They reached down with hands to pull you up, they literally gave you their backs so you could go on. They were on the trail first and that honor gave them the gift of clearing all the thick cobwebs that covered the trail. Never did they slow down unless it was to give a lending hand or wait until the entire group was together to take an epic picture. Leaders don’t leave you, they make it so you work hard, at your own pace, so you can accomplish your goal of success. They may go at a different speed now but remember they too climbed those mountains for the very first time once. They know your path, they know what you can do, and leaders know, whether emotional or physical, that pain not a valid reason for stopping.

SUPPORT WHERE IT COUNTS

It’s those friends that bring over soup when you’re sick or a friend that will text you, ‘You can do it!’ when you don’t think you can, or that thoughtful friend who sends a sympathy card because you lost your 97-year old grandmother yet she’s dealing with her own serious health challenge. It’s those people who support, and love you, and make your day just that much brighter. They know how to touch your heart.

It’s the folks who set this whole hike up with everything from travel arrangements to handing out band-aids. It’s the thoughtful person who makes sure your meal is dietary friendly and your gift basket is heartwarmingly personal. It’s the group who got up at 4:00 am to drive you to the trailhead, though you’re barely awake. It’s the cheering smiles, the thoughtful flip flops, and the best and coldest chocolate milk you ever had waiting for you as you finally cross that finish line.

It’s that.

It’s those people.

It’s people doing what they can, from where they are, to help others.

It takes a village to be extreme. You never do anything of value alone. You can’t. It’s the adventure seekers and those who support them. It’s climbing out of your comfort zone to live a life you never knew existed. It’s not about climbing the fire tower, or hiking really, it’s about what it makes of you to achieve it. Once you step outside your comfort zone, you’ve just gone extreme.

PATH TO EXTREME

If you’re struggling with an obstacle, a diagnosis, or a huge life challenge, do yourself a favor and look for a mentor, find a humble hero, but most of all trust, have faith and breathe. You can get through the darkest days by only seeing three feet ahead of you at a time.

To all the Xtreme hikers I hiked with this past weekend, THANK YOU!

Thank you for literally lifting me to new heights, I couldn’t have achieved them without you. See you next year!

The post We All Should Go Xtreme In Life appeared first on Margarete Cassalina.

Hey, you!

YOU’RE FLAWSOME!

FLAWSOME: A person who embraces their flaws and still knows that they are awesome!

Embrace those imperfections, those traits that are unique to you; you know what I’m talking about, the things that you think are flaws? I’m suggesting you own them.

You see, the thing that makes you different is probably the same reason you are as beautifully flawsome as you are. You just might not own it quite yet. But you will.

That’s how this weekly blog came to be.

I say we don’t hide from whatever self-imposed ‘flaws’ we think we have and embrace them, own them, share them with the world. I believe our jagged edges, our scars, and our imperfections make us real, relatable, and they enable us to forge the most authentic connection with others.

If we shine a light on what we try to hide we remove any power it has over us, any insecurity it has over us, and by doing so it allows us to live our full authentic and best version of who we truly are. When we collectively embrace our humanity and kindness toward ourselves and for one another, we allow others to be able to do the same.

Let’s be fierce, forgiving, and most of all…flawsome!

Get Featured!

I’d love to have you be a guest blogger and share what makes you FLAWSOME!

Email me for details!

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Tell me, what is WEGO Health, and why are you nominated for an award as a Patient Leader?

Good question. I asked the same thing.

Here you go; WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of Patient Leaders. Apparently, I‘m a Patient Leader. Go figure.

The website says that Patient Leaders are the most visible and trusted health consumers. They raise awareness, share information, and support their communities. A Patient Leader uses their own health journey to raise awareness, share knowledge, and help others. They leverage social media to amplify their voice, connect with peers, and build community.

July 7th, I was nominated for ‘Best Kept Secret,’ and I immediately shared my reaction and nomination on Facebook. I found it amusing, not at the nomination, but at the fact that someone, anyone, would think I’m a best-kept secret.

To know me is to know I haven’t stopped talking about cystic fibrosis for twenty-eight years. I write about it in my books, Beyond Breathing, and See You at Sunset, I speak about it publicly, on TV, and I educate complete strangers when they ask me about my ’65 ROSES’ license plate. I am ALWAYS talking about it.
So to be a ‘Best Kept Secret, I giggled.

As the days progressed, I was then nominated in FOUR additional categories:
• Advocating for Another
• Best in Show: Community/Forum
• Best in Show: Facebook
• Patient Leader Hero

I was utterly humbled by the outpouring of support for just the ONE category of Best Kept Secret on Facebook and didn’t want to repost another saying,

“Oh, wait…there’s more.”

But then I realized the impact of being a ‘winner’ or recipient of a #WEGOHEALTHAWARD could do.

I understand the importance to connect with the healthcare industry as a patient advocate, it’s something I already do, but I could now have an even more significant impact, an amplified voice.

So I wrote this blog and I’m asking for your vote, again.

Thank you to everyone who already voted, endorsed, or gave me a virtual hug for ‘Best Kept Secret.’ But the joke’s on them because I’m far from secret about my passion concerning all things cystic fibrosis.

Yes, I’m asking if you’d go back to the link, and give a quick ‘like’ on the orange bar that says ‘Endorse Margarete Cassalina’ it truly only takes 2 minutes, if that. It’s an email and a ‘like.’

And click on the ‘SUBMIT’ again for the other 4 nominations

Use the scroll Award* bar and it will continue to repopulate until you’ve voted for all 5 awards. You’re allowed to endorse each category once. So it’s a total of 5 votes per email.

I am not a fan of asking for things unless I feel they are important. This is. I do appreciate your time and THANK YOU for believing that I’ve made some sort of difference in the cystic fibrosis community at large over the past 28 years.

And truly, regardless of ‘winning’ this or not, I will continue to share, educate, and to fundraise at my speaking events, online, or to complete strangers on all health matters and awareness regarding cystic fibrosis, and their families.

You go.
I go.
We go until CF stands for Cure Found.

The post About that WEGO Health Award nomination… appeared first on Margarete Cassalina.