The Gift of a Decade

It is 6:45 am on July 30, 2020. Ten years ago today, at this very moment, I was being wheeled into the operating room for my first open heart surgery.

At the time, I had no idea the journey I would be traveling. Surgeons from across the country shared with me that it was an incredibly complicated surgery, and through the interview process I would come to learn that this was no “routine’ heart surgery. Many of the top cardiothoracic surgeons I consulted, would count on one hand the number of times they had performed a similar surgery, information that was incredibly scary to me. This was one time in my life where I did not ask every single detail of what was about to happen, because it was just too much information.

It was overwhelming to think that I had had a birth defect my entire life, unbeknownst to me for 46 years, and was now facing my death if I did not have corrective reconstructive heart surgery immediately. Who am I kidding? I was actually facing my death if I had the surgery too!

Interviewing surgeons for a monumental surgery is scary. Who do you pick to place your life in their hands? Who do you trust? Different surgeons had different recommendations. One surgeon at Mayo thought that I could wait 90 days to have the surgery. Good thing I did not choose him, otherwise I wouldn’t be here right now! I learned through the process that you have to choose the surgeon that makes you feel at peace, the expert who gives you the courage to be wheeled into the operating room.

No one had ever shared that I would be taken into the operating room with no anesthesia, no sedatives, completely awake. I was in complete silence as they wheeled me through the hallways – quickly wondering, analyzing, what should I be thinking at this moment?

The big doors popped open. The room was bustling. Daunting. The cardiac operating room was huge. So many people, so much equipment – hard to wrap your head around the fact that I would be the person on the operating table.

The next thing I knew, they were asking me to place myself on the operating table. That was also a surprise. How do you do that? How do you climb on a surgery table knowing that this motion could be the very last thing you remember?

The moment I laid down on the operating table, I burst into tears. I was scared. I was not prepared for this. I was terrified I would never see my husband and my girls again.

I remember the anesthesiologist well. She was incredibly kind. I know she saw and felt my terror. She shared with me after the surgery, that once the entire surgical team had gathered, I insisted that everyone hold hands, and say a prayer. She said I was adamant. I had no recollection of this, and she said it was the first time she’s ever had a patient do that. Thank goodness I did, that prayer may have helped gift me the recovery that gave me the last 10 years of my life.

The operation lasted 13 hours. I was told the surgery took much longer than expected. I was placed in deep hypothermic circulatory arrest, at 18°C, while they reconstructed my heart. (That was information I was not aware of prior to the surgery) Afterwards, I was told I was on the heart-lung machine up to the very last minute considered safe, while they diligently worked to make my heart function again.

I cannot even begin to describe the pain. I would say it is a pain that individuals should never experience in their lifetime, yet I’ve had the misfortune to experience it twice. It literally is like a tsunami approaching, you see the pain in front of you, you’re afraid to meet it; it overtakes you, immerses you, and is suffocating.


Lying in the cardiac ICU, I did not think I was going to survive. I am a very determined person and I just was not prepared for how challenging this was going to be. Things got a lot more troublesome on day two after the surgery.

I coded.

I can’t put in to words what it is like to face your death, to be looking down on your body. In what felt like a split second, I was literally facing the “gates” that could be opened.

Luckily they weren’t.

Five years later, I would face that trauma again. The worst thing about the second open heart surgery is that you know the pain in front of you. No person should ever, ever, have to experience that pain. That hell. I guess if you’re searching to find a positive  reframe, I got to hit the life “reset” button twice. I could have lived without that opportunity.

As I approached the tenth birthday of my first heart surgery, I found the last week to be been incredibly challenging. I did not realize the impact this milestone was having on me until I was celebrating my 56th birthday two days ago.


My family surprised me with a zoom video call to wish me happy birthday. They celebrated me so well. At that moment, emotion overwhelmed me as I realized how many life events and celebrations I had the opportunity to witness over the last decade. The faces scattered on my screen were some of the “gifts” of a decade. They represented the “presents” I have had the opportunity to enjoy over the last ten years.


At one year old, my sweet grand nugget gave me the best birthday present of all as she embarked on the animated display of all her tricks… clapping, waving, blowing kisses, stealing the screen, and beating my heart. I am incredibly grateful I got the opportunity to meet this little girl.

My eleven year old grandson, who was adopted into our family two years ago, cheered his little sister on as she stole the show. You could see the love and joy in his face as he watched her, proud to be her brother, knowing that he is her biggest love.

Seeing my daughters sitting with their families, was the visual that made the picture clear. My girls are my entire life. Surviving the heart surgeries, and so many other life challenges, gave me the opportunity to be here today. I’ve watched my babies graduate from college, graduate school, get married, embark on their own careers, start families, and walk on their own paths of life. I could not be more proud of these strong, independent women. The joy they have brought me is immeasurable.

My husband occupies two of the boxes on the screen. He was so consumed with getting the zoom call launched, that he was connected from several devices just to be certain that the call happened. He has been my rock. My constant. He is the one person in my life that has stood by my side through tremendous hardship, pain, and has held me when I was broken. He gifted me my daughters and has celebrated with me the milestones. Over the last 10 years, we have navigated some pretty challenging obstacles, and we have grown stronger together. Words cannot express my gratitude for this man.

Littered across the screen are family members, in-laws, cousins, and childhood friends. My uncle, lost to me for well over 30 years, sits in the top right corner.  His daughters, my cousins, sit in two of the “gift boxes” on my screen. It has been within the last 10 years that I have found them, gotten to know them. They have helped me uncover hidden pieces of my life. Until two months ago, I never knew my paternal grandmother’s name, nor had I ever seen a photo of her!

Four of the “gift boxes” are occupied by cousins on the other side of my family.  They are siblings. These four boxes display the faces of the only people on the maternal side of my family that have bothered to ask, cared to listen, and have shown understanding, love, and compassion.  I am incredibly grateful for these four “presents”.

After the call, I realized that many of the individuals on my screen had never met or knew the others. Didn’t know their story, and didn’t know their name. Yet, each of them represented the many individual pieces of the puzzle that has illustrated the picture of my life. Mind blowing to recognize that I was the ribbon that tied these gifts together. Enlightening to realize, in complete display, how fragmented my life was.

I would be remiss if I didn’t mention the community of women that were not on this call. They are ladies I call my “sisters“, and often “WOMAN!” They are truly the sisters of my heart that I have gotten to know and love over the last 10 years. They have added so much purpose and meaning to my life. Many I have never met, yet we have laughed and cried together, and they know some of my darkest secrets, and have supported me through some of the biggest challenges in my life. They know more than much of the family on the screen, because they have cared to ask. This is in no way a criticism of my family, it is just a testament to the metamorphosis of perspective when you have faced incredibly difficult life challenges – you learn to lean in with concern and inquiry.

As I’m writing this blog, I’m having some real clarity. The last decade has presented me with so many incredible gifts, opportunities I would not have had experienced, milestones I would not of witnessed, had I not survived my first open heart surgery ten years ago today.   There have been so many blessings, so many things that have given purpose and meaning to my life. I am going to take the advice I often give others…

“Don’t look backwards. You cannot change what’s already happened, you cannot change the history. All you can do at this moment is choose the path and the direction you take from here.”

I am going to give myself permission to move forward with intention from the dysfunctional childhood, the sexual abuse, the betrayal, the lies, the challenges, and the hurt. While they are part of my history, they are not my destiny. I’m going to shift my gaze and focus from the rear-view mirror, the trauma and crashes in the past, to looking forward, to what lies in front of me. Trauma are points on my story-line – they don‘t have to be quicksand. They don’t have to travel with me.

The truth of the matter is, I am who I am because of the challenges, the adversities, and the tragedies I have faced, I have navigated.  I have overcome.

I will continue to choose to surround myself with individuals that make me a better person, rather than allowing any toxicity to remain in my life. Over the last decade, I have made hard choices, the most difficult choices a child ever has to make. These decisions have led to freedom and allowed my heart to grow, rather than shrink and die.

Every day that I wake up I thank God for how fortunate I am to be given another day.. another chance…to make even the smallest difference in our world… in someone’s life.  To be kinder, to love harder, to extend a hand, and to give of pure HEART.

Today, I celebrate the 10th birthday of my heart. I call it a birthday because it truly marks the “birth” of a new heart, literally and figuratively.  I am going to continue to make a conscious effort to approach every day as a new beginning, see from new eyes, and to never take life for granted.

And now here is my secret, a very simple secret: It is only with the heart that one can see rightly; what is essential is invisible to the eye.

Today, and every day, I will reflect and cherish all the “gifts” of the last decade.

Copyright © 2020 Cherie Monarch. All Rights Reserved

How many funerals?

To all insurance companies, insurance employees, executives, and owners, legislators, medical practitioners, healthcare providers, medical schools, CDC, providers, clinicians, and frankly, everyone, everywhere who is involved in the coverage, treatment, or legislation of eating disorders…

I read her post. Jordan post

My heart sank.

“My daughters struggles are over. There is another angel. I can’t cope.”

I’ve lost count of how many posts I’ve read, and phone calls I’ve received, from friends who have lost their loved one as a direct result of an eating disorder. No matter how many times I hear of the loss, it rips my heart out every single time.

The stories are always the same. The insurance company refused to cover “treatment to outcome”.

  • The insurance company denied continued coverage after only three weeks “because she is eating”.
  • The insurance company denied continued coverage because “they’ve gained some weight”.
  • After only six days, the insurance company is denying continued residential “because he is compliant. Patient can return to home environment”.
  • Admission to residential treatment programs are very serious and should only happen when one is so ill that you can only be helped with such admission…

If it were cancer… Insurance companies would not mandate you fail at a lower level of care before receiving prescribed treatment.

If it were cancer… Treatment to “outcome” would be mandated…by doctors, by the world.

If it were cancer… and 10 chemo treatments were prescribed, treatment would not be ceased after three chemo treatments, with a disclaimer “cancer appears better“.

Jordan Leigh Croft lost her life on Friday, September 27, 2019, at the age of 23, as a direct result of her eating disorder. She had been battling a brain-based, biological illness, an

Jordan and mom

illness she did not choose, for years. Her family fought tirelessly to get Jordan the life-preserving treatment and care she deserved. Jordan finally admitted to residential treatment, and was making progress. Jordan was hopeful. For the first time in years, her family had HOPE. After only four weeks, insurance denied continued coverage, because “she was eating”.  Her family argued “without treatment she will die”!

Weeks later, SHE DID.

Today is her funeral.

A funeral that likely would not be happening had insurance not DENIED life-saving treatment and coverage to Jordan, allowing her to remain in the residential support environment.

How many funerals?

How many funerals… Until there is outrage?

How many funerals… Until we defend that eating disorders are serious, biologically influenced illnesses… an illness nobody chooses?

How many funerals… Until we recognize eating disorders are serious mental illnesses that affect millions of individuals worldwide regardless of age, race, nationality, shape, size, or gender and incur considerable personal, familial, and societal costs?

How many funerals… Until we acknowledge that approximately 60% of the risk for anorexia is genetics… NO ONE CHOOSES an eating disorder?

How many funerals… Until we understand that eating disorders are treatable? Full recovery from an eating disorder is possible.

How many funerals…Until we act aggressively, understanding that early detection and intervention may improve prognosis?

How many funerals… Until insurance companies are willing to cover life-saving treatment and care to “outcome”?

How many funerals…Until insurance are willing to cover treatments their insureds are paying premiums to access?

How many funerals…Until insurance companies understand that most individuals with eating disorders do not appear emaciated?

How many funerals… Until we understand the incidence of death for an individual experiencing anorexia is almost six times higher than their peers?

How many funerals… Until we understand someone will DIE in the next 62 minutes as a direct result of their eating disorder?

How many funerals…Until we recognize eating disorders KILL? They have the second highest mortality rate of all mental health disorders, surpassed only by opiod addiction.

How many funerals…Until we grasp the cumulative lifetime risk of an eating disorder is approximately 5%.

How many funerals… Until insurance companies believe their profit is not more important than a life?

How many funerals… Until insurance companies consider their denial has life-ending consequences?

How many funerals… Until doctors, hospitals, healthcare practitioners, and emergency room attendants are able to identify, and appropriately treat, an eating disorder?

How many funerals…Until all individuals have the opportunity to receive life-saving treatment?

How many funerals…Until there are resources to support individuals and families in communities?

How many funerals… Until healthcare practitioners choose to get EDucated on eating disorders?

How many funerals…Until medical programs include eating disorder training? Of 637 residency training programs that participated, only 42 programs offer a formal, scheduled rotation on eating disorders.

How many funerals… Until healthcare practitioners realize their failure to be EDucated results in a lag time of 5 YEARS between a patient’s first visit to a physician and an actual eating disorder diagnosis?

How many funerals… Until mental health parity is practiced and enforced?

How many funerals… Until eating disorders receive necessary research funding? In 2019, eating disorders received $40 million dollars in research funding, compared with $117 million for PTSD, $262 million for Schizophrenia, and $524 million for depression.

How many funerals… Until eating disorders are treated with the same urgency and attention from the CDC and medical practitioners as vaping?

How many funerals… Until individuals are not silenced by their perceived stigma and shame of an eating disorder?

How many funerals… Until legislators demand and enforce legislation that mandates research, eating disorder training and EDucation, and access to treatment to outcome for all?

How many funerals… Until individuals and caregivers receive comparable treatment, education, and respite care as those that are affected by cancer?

How many funerals… Until the eating disorder community rallies together, stands united, and becomes a cohesive and collaborative people, demanding, mandating, NO MORE FUNERALS?

How many funerals… Until insurance companies are held accountable for the “reckless and cavalier” manner in which they administer claims?

How many funerals… Until insurance companies are charged with murder?

23 PEOPLE WILL DIE TODAY as a direct result of their eating disorder.

How many funerals will there be until we say “ENOUGH”?

How many funerals…Until we are NO LONGER SILENT?

How many funerals… Until we “choose” NO MORE FUNERALS?

These are the “faces” of a few of the loved ones my friends have lost. Faces that represent the lives that have been “stolen“, many by insurance companies who have made “for profit” decisions. When will we say “NO MORE FUNERALS”!

Imagine what would happen if we all SHARED this blog…Started the conversation!

Videos sharing the faces of a few of the precious lives we have lost…

Those Who Died too Young

Those Who Died too Young 2 – Continuing the Conversation

Collage those who died

Photo credit: Kristin Bahr

Copyright © 2019 Cherie Monarch. All Rights Reserved

Written by Cherie Monarch, a mom. To contact author or 727-422-3668

If you are caring for a loved one with an eating disorder, please join Mom2Mom – Eating Disorders Family Support Network or Man2Man – Eating Disorders Family Support Network on Facebook. No one should walk this journey alone.

If you have been affected by an eating disorder or disordered eating and would like further information or help, please Contact Alliance for Eating Disorders Awareness for support at (866) 662.1235 toll free or


Don’t Judge My Meal Choice!

10 things you need to know before you speak

To all fellow diners, waitstaff, servers, restaurant employees and patrons, school educators, friends, family, and frankly, everyone, everywhere…

Today is January 3rd, the beginning of a new year.  Resolutions and advertisements including weight loss, diets, wellness campaigns, lose holiday pounds, gym memberships, “new year, new you” plague conversations, media, our personal lives, and meals. Almost every message is one of restriction…weight, intake, food variety, portions, in order to attain society’s unrealistic standard of beauty that we are taught is defined by the scale.  Today is the day to start changing the conversation.all foods

You don’t know me. I could be anyone – a nine-year-old little boy, an 84-year-old woman,  a young or old athletic person, a pregnant lady,  a professional  football player, a healthcare provider, a person in midlife, or a 16-year-old adolescent. I may appear to be sick or look fit and healthy. I could appear to be overweight or underweight.

These are the things you need to know before you speak…

1. Don’t comment on the caloric content of my meal unless I ask you. In a society that is obsessed with diet and weight loss you assume that I want to know how many calories are in my food choice. Whether my meal is loaded with what you consider excessive calories, or whether it’s considered a “healthy” choice, it is my choice. You don’t know my health requirements or needs. You don’t know whether I have cystic fibrosis and am struggling to meet my daily caloric requirement (it may take 5,000 calories per day just to maintain my weight). You don’t know if I am a 12-year-old or a 50-year-old experiencing anorexia, struggling to nourish my body, while at the same time questioning the amount of calories I’m trying to feed myself. Your comment on the excessive calories in the meal I just chose may influence me not to eat, not meet my nutritional needs, not to nourish my body.

2. Don’t comment on whether you consider my meal choice to be “healthy” or “sinful”. It is my choice. I know the nutritional requirements and needs of my own body. It is something that cannot be seen and should not be judged by you.

3. Don’t comment on the portion size of my meal choice. I may be undergoing chemo therapy and struggling to restore weight that has been lost as a result of the cancer and chemo. Whether or not the portion size is appropriate for my body is for me to determine, not you.

4. When you serve my meal, don’t offer to bring a “to-go” container before I’ve even taken my first bite because you feel I should not eat all that food. That judgment may impair me from adequately nourishing my body. I may suffer from anorexia and you just stole the permission I had to nourish my body by making a judgment that I should not eat my entire meal. Your words could cause me to question my food intake and could be a catalyst for food restriction.

5. Don’t choose whether or not to offer me dessert based upon my size. It is not your decision whether or not I should be eating dessert. You cannot tell by looking at me whether or not I suffer with cystic fibrosis, anorexia, bulimia, diabetes, cancer, etc. You cannot tell by size alone what someone’s nutritional requirements are. Don’t judge my nutritional needs by what I look like. Remember there is “Health at Every Size”.

6. Do not comment on the fat content of my meal selection unless I ask you. I may have recently undergone brain surgery and may need additional fat to heal, because 60% of the healthy brain consists of fats. I may be pregnant and require high fat for brain development during the fetal period. I may be struggling with an eating disorder and need to restore fat content in my body in order to heal my vital organs as well as my brain; by commenting you are imparting your judgment on me, which could have a detrimental effect and stop me from eating the fats I desperately need. Or I could possibly be suffering memory loss and need additional fat to heal.

7. Don’t comment that I should be eating more vegetables or choosing a salad that is a healthier option. I could possibly be anti-coagulated with warfarin, which means that my vitamin K intake must be closely monitored. My consuming additional vegetables or greens may cause my blood to clot, which may result in me having a massive stroke or even die. Your comment could influence me to eat an excessive portion of greens, which could severely compromise my health.

8. Don’t advise or instruct me as to what my diet should be. Your nutritional requirements and ethics may be different than mine. Don’t impose your body’s needs or your choices on me. You might be my teacher, parent or friend, but you telling me to eat only fruits and vegetables, no fat, may severely harm me; I may be genetically predisposed to an eating disorder. Your instruction may cause me to lose weight, take away my permission to nourish, which could be the catalyst for any eating disorder to begin in my mind and body. I know you would not want that to happen. So instead, teach me about balance. Teach me that “all foods fit” and are good in moderation. Don’t impose your beliefs on me. Your words could damage my relationship with food for the rest of my life.

9. Don’t tell me that some foods are “good” and some foods are “bad”. Foods do not have moral value. You may be my teacher, parent or friend, but your instruction may make me afraid to eat birthday cake, cookies, ice cream, or other foods I used to love. You telling me not to eat fat may cause my brain to atrophy and may cause me to have memory problems. Having fat in my diet can actually make me smarter. My body needs 30% fat for normal function and for my brain to function. Your prescription of only “good”, “healthy”, “real” food might not meet my body’s nutritional needs. You see, I respect you. I look up to you as my teacher or my parent. Imposing your beliefs, your food rules, and your nutritional needs may compromise my health and mental state. I am not “good” for eating a salad, or “bad” for ordering dessert. I understand that your intentions are pure. Instead, please teach me that all foods fill a need –sometimes nurturing, sometimes comforting, sometimes celebratory, and always nourishing.

10. Don’t comment on my weight or tell me I shouldn’t eat something because it will affect my weight. Your well-intentioned comments about my weight could have long-term negative consequences on my health. Whether positive or negative, they could cause me to view my body with different eyes. I may be a 10-year-old, and it is very possible that your comment will affect me for the rest of my life. It may result in me having more body dissatisfaction. It may be the trigger that causes me to struggle with disordered eating, even if I am of normal weight. You may be my parent, have the very best intentions, and just expressing concern, but your comment may backfire and contribute even more to my struggles, my body dissatisfaction and my body image. It may cause me to question every bite I take for the rest of my life. Please don’t saddle me with this burden.

When did it become acceptable in our society for anyone to comment on someone else’s meal choice and nutritional needs? Who granted you the liberty to impose your food rules, restrictions, and beliefs on me? Unless you know my personal history and my nutritional needs, it’s none of your business. You need to think before you make unsolicited comments. You cannot determine my nutritional requirements just by looking at me. You do not know my struggles or invisible illnesses. Just because you choose to be vegan, vegetarian, eat “clean”, eat only “real” food, consume a no fat diet, does not mean you have the right to judge me based upon my food choices and caloric intake.

Please do not look at me and think, “You should not be eating that, it has too many calories and you’re fat.” Because even though you may not be saying it, I can read it on your face.

… and frankly, it’s none of your business.

Instead, today, I challenge you to change the conversation. Society has defined the  food parameters by which we measure others and ourselves. By creating conversation and awareness we have the opportunity to know better. To do better. Let us stop judging people by the food they to eat.  Let us not define people’s health or nutritional needs by their body size or shape.

Let us remember that “food is fuel” to our bodies and every BODY is individual and unique with different needs.

 I challenge you to start the conversation NOW by sharing this blog. 

Copyright © 2019 Cherie Monarch. All Rights Reserved

Written by Cherie’ Monarch, a mom with a passionate heart.

If you are caring for a loved one with an eating disorder, please reach out for peer support on Facebook – Eating Disorder Family Support Network Mom2Mom, Eating Disorder Family Support Network Man2Man. Professionals please join us at Eating Disorder Family Support Network Professionals.

If you have been affected by an eating disorder or disordered eating and would like further information or help, please Contact Alliance for Eating Disorders Awareness for support at (866) 662.1235 toll free or

The Gift of Time

It’s 3:45 AM. I just had my labs drawn. It’s the morning of my 54th birthday. AND I have been in the hospital almost 3 days.

As I’m laying here, I remember that tomorrow is the anniversary of the day I admitted to the hospital for my first lifesaving surgery. Monday, July 30, 2018 will be eight years since I had my first open heart surgery – it is the “birthday” of my heart. IMG_5807

Lots of thoughts and feelings to process as l am housed on the cardiac floor on my 54th birthday.  Just find it hard to believe that I am sitting in the hospital eight years later at the exact same time…AND happy I am able to be sitting in the hospital 8 years later…

Thoughts at the end of the day after my 54th birthday … it’s 2 AM.

It’s interesting how you can be receiving so many loving texts and Facebook wishes for your birthday and feel so blessed, yet feel all alone. I am so grateful for the love and the wishes, but I’m sitting here, feeling alone, in a hospital bed on my birthday which can cause one to do a lot of reflection.

Your TIME is the most precious gift that you can give to someone. But the gift of time requires being present, attentive, encouraging, listening and really hearing what’s being said, rather than talking about you. Yet time is the one thing that very few people give freely. When people do give time, it’s often out of obligation, rather than the desire to truly be present.

There is a saying that goes like this…

Time is the most precious gift you can give, because you only have a limited amount of time. The gift of money is not as valuable, because you can always make more money, but you cannot make more time. So any gift you give or receive of time, is a gift of life.

There are so many ways that this applies to me right now.  I received the most precious gift possible – the gift of eight more years of time. Time that I could watch my daughters grow and develop into amazing young women. Time that I could be loved by my husband and only hope to love him as well as he has loved me. Time to allow the opportunity to meet amazing women and families on this journey we call life.

Time is a gift that most of us take for granted. Time is not measured by clocks, but by the moments. TIME is PRICELESS.

Eight years ago some incredible doctors took their time and their expertise to give me the gift of More TIME. I underwent a 13 hour open heart reconstructive surgery as a result of congenital birth defect. I was told after the surgery that had the defect not been discovered I would’ve collapsed and died within 30 days. That surgery gave me the gift of life. As of Monday, that will be eight additional years of life. TIME that has been incredibly precious and dear to me.  When I think about what I would’ve missed over these eight years, it would have been the people that “make my heart”.

Little did I know at the first heart surgery that I would again receive the gift of time six years later… Two years ago.

I am grateful that my birth defect was discovered.  It gave me a second chance at life. A chance to do things better. Love harder.  I am lucky enough to have had several second chances. Between July 28 and 30th I reflect a lot on these two birthdays – the second opportunities.

Today in my reflecting, I realized that the preciousness of time can actually cause us to lose valuable time. In today’s world we are constantly multi-tasking and searching for ways to do things quickly and more efficiently. But in that efficiency, we lose connection. Rather than taking the time to call a friend or loved one and wish them happy birthday, we send a brief text… “Happy birthday! I hope you have the most wonderful of days.” We have taken a “second” of time to remember someone we cherish, yet we failed to connect, which is lost time. If we fail to make these connections as we walk through life, is time really precious?

In our quest for time, we often forget to spend time.

The way that we prove relationships are important to us is by investing time nurturing them. Words, without time, have no value. There must be effort and time. A relationship is defined as the way in which people are connected. But, if today’s world is just connection through texting or short email, without personal interaction, is it really connection? Or are they just brief words in an effort to preserve time?

I am not going to lie. I am guilty of this myself. Very guilty. I am a person that likes to pick up the phone, but I know I’ve forgotten the birthdays of friends who I love and cherish. I know I have sent birthday text messages instead of picking up the phone and calling. I know I have completely forgotten the special days of others.  I have failed to take time to send personal cards and acknowledgments that should have been sent. There are personal interactions that have been missed, that I deeply regret.

Today, as I sat all day in the hospital bed and waited for celebration calls from friends and family, many of which did not come, or texts were sent in lieu, I realized that the social media/smartphone world has caused a loss of personal interaction and connection. People don’t really communicate anymore. Or maybe we are seeking communication from people that are outside of our real world – maybe our virtual world has taken over our real world.

I am honored and humbled to have been inundated with a tremendous amount of Facebook posts and wishes, and I am very grateful, as my birthday probably would’ve totally stunk without them. But, maybe my search for support from the virtual world caused me to miss what was sitting here right beside me.

As I sat here thinking at the end of day, I recognized that it was necessary for me to be in the hospital this day in order to maintain life. To keep living life. And while it may not have been the birthday I imagined, it was another birthday that gave me life.  Although it was an uneventful step into a new year of life, I realized that there was one person that stood beside me this entire day.

A birthday banner decorated the sterile wall of the hospital room, flowers and balloons brought life and dimension, my favorite spaghetti and meatballs brought taste sensation, and cupcakes brought celebration.  He made every effort to make my birIMG_5788thday special on a day where I felt so uncelebrated because I was alone in the hospital room. But here he was, sitting right beside me for most of the day, doing everything he could to make the day more manageable. More celebratory. He is one of the main reasons why I’m grateful every day to have received the gift of time. He has stood by me every step of this journey and I know it has not been easy. I need to remember to give him the most precious gift that I have, which is the gift of my time.

As I’m wrapping up this blog, I recognize it took a path on its own, but this writing, along with the fact I’ve been in the hospital the last five days, and it was the birthday of my life and my heart, has made me remember how precious TIME is and that we need to continue to nurture relationships as if they’re brand new. If we treat every relationship like we do in the beginning, it will never end, but this requires time. Time that we often sequester, are hesitant to give, unless obligated. We do have a very limited amount of time in this world, but if we harbor the time we won’t actually be living life and connecting in our most valued relationships.

The reality is I have received the Gift of TIME, and LIFE, and have had several opportunities to hit the reset button. More chances than most.  And… Yes, it may take a 2 x 4, a steel beam, or one or two heart surgeries for me to find clarity… Time is valuable and I need live my life spending every second of Time connecting to those I hold dear. I want to make sure that every minute of time has been exhausted before I run out of life.

We are only given TODAY and never promised TOMORROW. Make sure you tell the PEOPLE who are special in your life, that you LOVE them.IMG_0948

My 54th birthday certainly was not full of any pomp and circumstance – but it was an opportunity to treasure the LIFE and the MAN I call my husband, sitting beside me, in that small room that had been decorated with LOVE, reflecting on our daughters, our family, our friends, and cherishing another birthday where I had been given….

the GIFT of TIME.

Written July 29, 2018 at 2:00 AM on the cardiac floor of Tampa General Hospital.

Copyright © 2018 Cherie Monarch. All Rights Reserved

I am Listening.

It’s been two years. Today is the second anniversary of my second open heart surgery.

On the heels of thanksgiving, gratitude is the first thing that comes to mind. Or maybe I know it’s the first thing I should feel. Grateful.IMG_0063

Grateful to be alive.

After all, all the doctors have told me I should not be here. That it is a miracle. That I’ve been given a gift. The gift of life. The gift of being allowed to love my family longer. Better. Harder. The gift of being given the opportunity to be a better person. The gift of getting more time to leave my footprint on the world, in whatever small way I can.

Trust me, I am very thankful for the opportunity to be here. To have another chance. To continue to love and be loved. The need for and thought of gratitude always plays through my head. But I’d be lying if I didn’t say that I grieve what has been lost.

Yes, I know that it could be much, much worse. That there are people struggling with challenges that look bigger. More difficult. And maybe that’s the problem.

Almost every day, people, whether doctors, friends, family, neighbors, read my medical records, ask my story, or know my journey, and look at me and say… I am so glad to see you’re doing well. That you’ve fully recovered.  Very few actually ask me how I feel.

They look at me, assess, and determine my physical and mental well-being, by my looks alone, and then make a statement imposing me with their belief of my health.

In less than a minute, a conclusion regarding my health has been determined, without me uttering a word.

I get it. We all want our friends, loved ones, patients to be well. We’re looking and watching for signs that they are no longer ill or struggling. We draw conclusions and share stories that give “us” relief. That allow us to tell ourselves that our beloveds are healthy and strong.

I can’t tell you how many times people have told me that their grandmother, father, or neighbor had bypass surgery, stents, or a valve replaced. The fact those don’t resemble my journey doesn’t matter. The story goes something like this… “I’m so glad to see that you’re feeling better and you’re healthy. You know my grandfather had bypass surgery when he was 78. The surgery went really well and he was home out of the hospital in four days. He went on a trip with my grandmother two weeks later and is just like new.” Or “my neighbor had four stents placed and was out mowing his yard five days later”.

In our attempts to make ourselves feel better, and to share stories that make us feel like we can relate, we often, in one or two sentences, completely invalidate the person and the journey others are walking. We are so busy talking, trying to convince ourselves that everything is just fine; we truly forget to show concern, ask questions, and really listen. I know that I have been guilty of this myself. Many times.

We do not listen to understand. We listen to reply.

The second open heart surgery sucked the life out of me, while at the same time giving me life. Today, at 53 years old, it’s hard to not be the person that I thought I would be. It’s hard to hear the stories of others which just highlight what has been lost.  It’s frustrating to not be full of energy, of endurance, and to be plagued by so many physical challenges, ones that can’t be seen. It’s heartbreaking to know you’re not going to be the grandmother you envisioned, while at the same time remaining grateful that you’re still here. It’s hard to be compared to 80-year-olds and to know that many are stronger than you. And yes, I won the ultimate prize, the gift of life, while at the same time having many things stolen from me and being saddled with many physical burdens and challenges.

My exterior appearance has almost killed me, twice, while at the same time it protects my struggles.  It helps me to appear physically stronger than I am, while saddling me with expectations from others, and from myself. The fact that I appear healthy and strong compels me to do more. To try harder, and maybe it keeps me accountable. Yet, at the same time, my appearance does not allow me to rest and takes away my permission to do so.

Today, in my reflecting, it dawned on me that there are many people that are physically and mentally unwell, yet to the outside world look perfectly healthy. They are silenced by their appearance. They are invalidated by their presentation. Their attempts to speak and to share their struggles are often met on deaf ears  – because the eyes can create false illusions and conclusions. Deception. Their appearance makes them unable to be heard.

You cannot always determine whether someone is struggling with mental or physical illness by looking at them. You must listen.

My husband reminds me often that I have a new normal. That it’s up to me to give myself permission to rest. To recognize my physical needs and limitations, and act accordingly. He encourages me to keep speaking. And maybe that’s why I started writing this blog, one that he doesn’t even know exists. 🙂

As a mother, that has run her own business for over 30 years, worked in excess of 60 hours a week most of her life, was the organizer of every fundraiser, Gala, walk, March, backstage manager, soccer mom, homeroom mom, PTA, and tireless advocate for others, maybe I am on this journey for other reasons…

Maybe I am on this journey…to learn to be an advocate for myself.

Maybe I am on this journey … to keep speaking, so that others may listen. So that others may be heard.

Maybe I am on this journey… to give my daughters permission to not be their perfect selves.

Maybe I am on this journey… to teach others that you can be a survivor and still struggle.

Maybe I am on this journey… to learn that my imperfection will give strength to others.

Maybe I am on this journey… to learn to shed tears for myself, as I’m shedding tears for others.

Maybe I am on this journey… to learn to raise my voice for myself while I am raising my voice for others.

Maybe I am on this journey… to learn to put my own oxygen mask on, before I put it on others.

Maybe I am on this journey… to learn that I can only be strong for others if I’m strong for myself.

Maybe I am on this journey… to learn that if I don’t care and nurture myself, I won’t be able to care and nurture others.

Maybe I am on this journey… to learn to speak my truth in the hopes that it will free me and compel others to do the same.

….But I truly believe that I’m on this journey to learn to listen. TO TRULY HEAR.

Through our family struggles I would like to think that I have become pretty good at validation, compassion, advocating, supporting, and responding.  But today it dawned on me that maybe we have our own struggles and journeys to really teach us to listen …whether it’s to ourselves or others.

Maybe it is listening that teaches us to have true understanding, compassion, love, and gratitude.

“When people talk, listen completely. Most people never listen.” ~ Ernest Hemingway

So today, on the anniversary of my second open heart surgery, I am grateful to be here so that I can learn to listen in a way that truly helps me understand the journey… whether it is learning to hear my own voice or soul, those of my family, or the voices of others.

I am here. I am listening.

Grateful for both.

Thank you for the honor of listening to me as I walk my journey through this blog.

Much love.

Copyright © 2017 Cherie Monarch. All Rights Reserved

If it were Cancer…

To all patients, parents, families, friends, providers, clinicians, teachers, coaches, school personnel, and frankly, everyone, everywhere who has or knows someone with an eating disorder…


It is one word.

One single word.

A powerful word.

When spoken, it’s a word that immediately elicits compassion, empathy, support, understanding, and action. It is one word that immediately garners the support of family, friends, a team of physicians, and will compel people to start walks, fundraisers, galas, go fund me’s, meal support, etc. Cancer will mandate that there be an army of warriors surrounding the family and patient as they walk this journey. And it should.

Cancer. A longtime friend recently posted this on his home page. His daughter is battling cancer. Of course, it immediately elicited my empathy and understanding. Offers of how can I help?

My friend is aware that our family had a loved one that struggled with an eating disorder. He understood that as a parent that this was the worst possible thing that could have ever happened to me. That I would have gladly taken the place of my daughter. That I would have given anything to bear her pain and suffering.  He understood that my journey of a child with a life-threatening illness was worse than my own two open-heart surgeries.

I messaged him and offered support. I shared how very sorry I was for what his daughter and his family were enduring. That I can’t imagine how difficult CANCER has been for them.

I was blown away.  What I was not prepared for was his reply…

“Actually you don’t have to imagine watching your child go through something like this. You lived it. Different disease but just just as deadly, and probably more difficult to treat. The leukemia my daughter has has a very well developed treatment protocol, that is used throughout the entire country, and there is constant collaboration between all of the treatment centers. I know that is not the same with eating disorders. Hell, you still have to fight to get it recognized as a disease, and not just some “silly little girl who won’t eat.” To me your battle seems harder.”

My conversation with my friend caused me to do a lot of reflection. Having a loved one battling an eating disorder is much like battling cancer. It is one of the most challenging and most difficult journeys of our life. Some of us may be battling to get a diagnosis; others of us may have been given a diagnosis but are trying to understand what’s happening.

The difference with eating disorders is …No one is provided with a handbook on how to heal your loved one from an eating disorder. Follow this protocol. Instead we’re left with minimal guidance, minimal support, lots of questions, no direction, a lot of confusion, and no respite care. There are conflicting messages everywhere.quote journey final

You, or your loved one, are a shell of their former self, and barely recognizable. As a parent, you’re doing everything you can to provide care, support, and try to understand what the hell is going on. You just know that a terrorist is holding your loved one captive. In fact, he’s holding your entire family captive.

When our loved one has an eating disorder,  it’s like the whole family has an eating disorder.

What is the answer? How can we help ourselves or our loved one navigate this journey with an eating disorder? How can we help others understand this journey?

When I was walking this journey with my loved one, it really helped me to reframe every step of the process in terms of cancer. If it were cancer…

The thing that is important to quickly understand is that food and stopping behaviors  is their chemo. Without chemo they will die. Without food, they will die.

Every decision, every action, every statement needs to be addressed in terms of cancer.

If it were cancer…

If it were cancer… Would it immediately evoke empathy, compassion, support, and action?

If it were cancer… Would you think you or your loved one chose it? Would you think they could just stop?

If it were cancer… Would you allow your loved one to refuse the medicine or the treatment?

If it were cancer… Would you think that it was a phase? Would you think that it would just go away?

If it were cancer… Would you think they had a choice? Would you tell them just to eat?

If it were cancer… Would you negotiate whether or not they need chemo? Life-sustaining medicine. Food.

If it were cancer… Would you ever ask what ingredients are in the chemo (food)? Want to be certain your loved one was aware of the ingredients in the chemo (food)? … So why not just serve the chemo (food) with the ingredients they need to heal their brain and body?

If it were cancer… Would you run cancer around life? Or life around cancer?

If it were cancer… Would you hesitate to quickly assemble a multidisciplinary team? Would you hesitate to find the best practitioners in the country? In the world?

If it were cancer… Would you be concerned about geography? Would you care if the treatment were in your state… or would you travel across the country without question?

If it were cancer… Would you even think about school? Would you be concerned about graduations, or college applications, and whether they graduate with their twin?

If it were cancer… Would you search out the best possible program? Or just go with one that’s closest?

If it were cancer… Would you allow a provider to wait a month, two or three until the next appointment? What you wait until next week to call for an appointment?

If it were cancer… Would you schedule treatment around holidays, vacations, school, or summer camps?

If it were cancer… Would you postpone treatment a few weeks? Would you think it won’t make a difference. Or would you start today?

If it were cancer… Would you continue competitive sports, dance, and exercise? Or would you rationalize that their body needs rest, needs to heal, and restore strength and energy to fight this demon?

If it were cancer… Would you accept partially healed? Or would you push for full recovery/remission?

If it were cancer…Would you leave a piece of the cancer tumor, or would you continue to pursue aggressive intervention and treatment until the tumor was eradicated and the margins clear? (Full healing of physical and mental state… no weight suppression, no goal of minimal weight restoration, minimal intake, and doing the bare minimum in hopes of recovery)

If it were cancer… Would you hesitate to share with family, friends, or your entire community?

If it were cancer… Would it matter if they were 12, 18, or 30? Would the fact they were over 18 keep you from insisting they complete treatment or take their medication? Would the fact they were 18 even enter your mind? Would you even consider their adult status when mandating them to complete chemo and radiation?

If it were cancer… Would you let them leave the treatment program before the chemo was complete? If 10 chemo treatments were prescribed, would you let them stop after five?

If it were cancer… Would you postpone or delay treatment because they’re looking a little better? Would you think maybe this is a phase? Maybe they don’t need treatment? Would you even care about the way the looked?

If it were cancer… Would you let them forgo the chemo because it caused them distress and made them sick?

If it were cancer… Would they leave treatment and go right back to school and life? Or would they automatically be allowed time for recovery?

If it were cancer… Would you negotiate treatment at all? Or would you lovingly and definitively state treatment will save your life… It’s not an option.

If it were cancer… Would you let them go to college? Would you let them finish the semester and rationalize it’s only three more weeks? Chemo can wait.

If it were cancer… Would you postpone an intervention?

If it were cancer… and your loved one called right after they started treatment and said I hate it and I want to come home, would you let them? Would you pick them up and allow them to leave AMA?

If it were cancer… Would you care what friends, family, or neighbors said or would you just be focused on getting your loved one well?

If it were cancer… Would you accommodate it or do everything possible to eradicate it?

If it were cancer… Would you be passive or would you be aggressive?

If it were cancer… Would you allow them to drive a car when they were so sick from undergoing chemo treatments?

If it were cancer… Would you validate their distress, yet still require them to undergo prescribed treatment? Or would you let the treatment stop?

If it were cancer… Would you be angry at your loved one? Would you lose your temper?

If it were cancer… Would anyone in the family be upset or angry? Would there be any hesitation to support the family or the patient?

If it were cancer… Would you remember that you have to take care of yourself, so that you can take care of your loved one?

If it were cancer… Would you ever blame yourself? Would you ever think that you caused the cancer?

If it were cancer… Would you be proactive and diligent about following up with your team and providers? Or would it not even be on your priority list?

If it were cancer… Would you and your spouse or ex be working together to eradicate the cancer in your loved one? Or would you be feuding on how to navigate?

If it were cancer… Would you go against the treatment team’s recommendations? Or would you think it’s not that serious, we will wait to seek a higher level of care?

If it were cancer… Would you accept the first medical practitioner recommended? Or would you ask questions and seek out the best?

If it were cancer… Would you ask me or my loved one how did you get cancer?

If it were cancer… Would you validate the struggle? Or would you judge and interrogate?

If it were cancer… Would you be empathetic? Or would you say “just eat” or “quit purging” ?

If it were cancer… And a clinician did not appear educated, would you stay? Or would you seek new expert care?

If it were cancer… Would you have done anything different? Would you have taken a different path?

If it were cancer… Would you accept any treatment to stay alive? Or would it be a battle just to get you in treatment?

If it were cancer… Would you understand why your family is so scared?

If it were cancer… Would you tell your family?

If it were cancer… Would you understand why your family wants to support you? Why they want to be involved?

If it were cancer… Would you tell them it’s none of their business? Would you tell them to walk away? Would you tell them that you can do this on your own?

If it were cancer… Would you refuse treatment? Would you battle your family? Or would you listen?

If it were cancer… Would you understand why your family wants you to be diligent in your recovery? Wants you to have the support of a team?

If it were cancer… Would you think your family is trying to control you?  Would you think that your family is trying to smother you? Or would you think my family really loves me?

If it were cancer… Would you allow your family to hold your hand as you navigate treatment?

If it were cancer… Would you allow them to comfort you when you’re struggling?

If it were cancer…Would you allow family and friends to love you? To hug you? Or would you isolate?

If it were cancer… Would you trust them and want them to help carry your pain?

If it were cancer… Would you run to them or from them?

If it were cancer… Would you listen to their concerns and their fears?

If it were cancer… Would you understand that this is the most terrifying thing that has ever happened to your family? Would you understand that their fears are justified?

If it were cancer… And your student needed to miss school would you hesitate to allow them? Or would you do everything to support them until the school can wait?

If it were cancer… Would you allow virtual school at home until they were recovered and fully in remission?

If it were cancer… Would you penalize them for missing school?

If it were cancer… Would you do everything to support the patient help them reintegrate into school? Or would you saddle them with unrealistic expectations and burdens?

If it were cancer… Would you send cards and bring meals? Would you offer to help?

If it were cancer… Would you offer to watch the kids so the carers could get a night away?

If it were cancer… Would you unite the neighbors, school families, and church members to support the family and the patient? Or would you look the other way? Would you do nothing?

If it were cancer… Would you continue to speak to those affected about your diets, workouts, latest health craze?

If it were cancer… Would you quit asking the patient to babysit because you were afraid your children might catch “it”?

If it were cancer… Would you reach out to the family if you had not heard from them for a week, a month, a year? Would you express concern and offer support?

If it were cancer…Would we be demanding more research? More funding? More grants and scholarships? Would we accept “no”?

If it were cancer…Would nations, organizations, and populations join hands to eradicate?

If it were cancer… Would you hesitate to give your employee time off? Or would you offer them to take all the time their family needs?

If it were cancer… Would you hesitate or refuse to cover treatment? Would you tell the patient or the family that treatment is not “medically necessary” and deny insurance coverage?

If it were cancer… Would you tell the patient and the family that they need to fail at a lower level of care first before insurance will cover prescribed treatment?

If it were cancer…Would you ignore the prescribed treatment of the treatment team and allow the insurance company to determine what is best practice or best care for the patient? Would you follow the mandates by the insurance company medical director who has never met the patient? Would the public and media allow any such treatment of a cancer patient?

If it were cancer…Would a patient be discharged from care without completing treatment?

If it were cancer…Would continued coverage be reviewed every two weeks, week, or three days? Would chemo treatments stop if insurance denied?

If it were cancer…Would the patient or family be battling insurance while trying to save their loved ones life?

If it were cancer…Would treatment be denied by the insurance company?

If it were cancer…Would the entire team – family, friends, providers, and insurance demand early intervention and treatment? Would every one collaborate and communicate to ensure the action was swift and aggressive? And as prescribed?

If it were cancer… Would you let any newly diagnosed patient leave your office without appointments, materials, and support?

If it were cancer… Would you help the patient and the family find appropriate support and treatment? Would you do everything possible?

If it were cancer…and you weren’t familiar with that particular type of cancer, would you align yourself with a doctor who was? Would you tell the family I am going to help you find the best care possible?

If it were cancer… Would you tell the family that their loved one needs to do this alone?

If it were cancer… Would you ever tell the family that their support is not helping? Or would you teach them how to support the patient?

If it were cancer… Would you ever tell the patient they were “not that sick”?

If it were cancer… Would you do everything possible to support the patient and the family?

If it were cancer… Would you hesitate to collaborate with other treatment providers? Or would you feel it’s a necessity?

If it were cancer… Would you listen to the family’s concerns when they approached you?

If it were cancer… Would you schedule appointments in two days, two weeks, or two months?

If it were cancer… Would you hesitate to include the parents? Would you care if they were over 18? Would you let them decompensate because there was no release? Would let them refuse to take the chemo? Undergo treatment?

If it were cancer… Would you think it is serious?

The bottom line is eating disorders are just as deadly as cancer. In fact, without treatment, up to 20% will die. They have the highest mortality rate of any mental illness and they are the third most chronic illness in adolescents. Every 62 minutes someone dies as a direct result of an eating disorder… 23 lives lost every single day!

So as you’re navigating this journey yourself, with a loved one, with a patient, or with a friend, and you’re pondering what to do or what to say, how to support someone who is struggling, determining your next step, questioning what the right path is, please try to reframe it.

If it were cancer…

P.S. This post is not meant in any way to diminish the seriousness of cancer nor negate any families horrific journey with cancer.  It is intended to highlight the seriousness of eating disorders. Imagine if everyone treated eating disorders like cancer…

Copyright © 2017 Cherie Monarch. All Rights Reserved

Written by Cherie Monarch, a mom who has lived this journey.   To contact author Email:

If you are caring for a loved one with an eating disorder, please join Mom2Mom – Eating Disorders Family Support Network or Man2Man – Eating Disorders Family Support Network on Facebook. No one should walk this journey alone.

If you have been affected by an eating disorder or disordered eating and would like further information or help, please Contact National Alliance for Eating Disorders for support at (866) 662.1235 toll free or

Don’t Look in My Lunchbox!

10 Things you need to know before you speak

An Open Letter to all teachers, coaches, school personnel, educators, parents, and frankly, everyone, everywhere…

Dear Teacher,

I can’t thank you enough for your dedication and inspiring my child to love learning. You truly are a hero to me and my child.  I want to thank you for your concern for my child’s nutritional wellbeing and wanting my child to be healthy. It is greatly appreciated. But with all due respect, it is important for you to know that I am my child’s mother and I know their nutritional needs better than anyone.lunch-pic

Here are a few things you likely don’t know:

  1. My child may have a sibling who has struggled with an eating disorder. As a result of the genetic link, my child is 10 times more susceptible to developing an eating disorder than the average population. It is important that my child eats ALL foods. I do not want my child being encouraged, instructed, or told that he should not eat certain foods. Your words could potentially be the catalyst for food restriction and negative energy balance which could trigger an eating disorder for those prone.  ooooooooooooooooooooooooooooooooooooooooooooo
  2. Foods do not have moral value. I do not want my child being taught that some foods are good and some foods are bad. Yes, some foods may offer more nutritional value than others, but all foods have purpose. Some may offer more vitamins, but others may offer comfort, celebration and nurture their spirit. Nutrition is about balance. I want my child to eat all foods and learn all foods are good in moderation. Balance is key.  ooooooooooooooooooooooooooooooooooooooooooooo
  3. You do not know a child’s medical history, needs and conditions. Therefore, I encourage you to not instruct any child on their food choice or monitor their lunch boxes for content. A student could have a hematologic condition where their blood clots faster than normal. Ingesting vegetables, which are loaded with vitamin K, could actually harm them by creating a blood clot. A child with this condition needs to have a limited amount of vitamin K. The child could also be suffering from an eating disorder or a brain condition, you can’t tell by looking at them. They may need additional fats in their diet.  ooooooooooooooooooooooooooooooooooooooooooooooooo
  4. Are you aware that the average person needs 30% fat in their diet for normal brain function? You telling my child to not eat FAT, demonizing fat, and/or encouraging them to eat NO fat or low-fat, may cause their brain to atrophy and may cause them to have memory problems. Having fat in my child’s diet can actually make them smarter. You see, their brain is comprised of 60% fat. So, their brain needs fat in order to function correctly.  ooooooooooooooooooooooooooooooooooooooooooooo
  5. It is estimated that at least 10 to 15 percent of children and up to 80 percent of all special needs children struggle with some form of feeding disorder or challenges. Some children have complex food challenges, allergies, or anxieties – they can be physical or mental. Many of these challenges are not obvious. My child may have severe anxiety in social situations or loud environments (like a lunchroom) and become overwhelmed and distracted. Therefore, they must consume calorically dense, safe foods – foods you may not consider nutritious – in an effort to meet their energy requirement for the remainder of the school day. My child may have ARFID – Avoidant/Restrictive Food Intake Disorder and may avoid foods based on certain qualities – such as texture, color, taste, or temperature. As such, my child may only have 3-4 foods total that he/she will eat. If you shame my child about what is in their lunchbox, they may eat nothing. Your words may have just eliminated one of my child’s “safe” foods – therefore harming them and erasing a source of energy.  ooooooooooooooooooooooooooooooooooooooooooooo
  6. There is little research on the effectiveness of healthy eating and weight initiatives in schools. In fact, there have been studies that have indicated that a potential unintended consequence of these programs and schools monitoring lunches was the development of an eating disorder in children who were susceptible or genetically predisposed. The children who are negatively impacted by these programs are typically students who excel in academics and extra-curricular activities and view the healthy weight initiatives as another measure of their success. So, please be careful with your words. They may compel to my perfectionistic child, my rule follower, to embark on a competition to be the “healthiest” kid. I know you would not want to be the trigger that caused a child to develop a life-threatening eating disorder or unhealthy food and exercise behaviors.  ooooooooooooooooooooooooooooooooooooooooooooo
  7. Research suggests that up to 50% of the population demonstrate problematic or disordered relationships with food, body and exercise. In our culture, there is an obsession with size and weight (thinness), diet and exercise. In fact, research has indicated that 81% of 10 year olds are afraid of being fat. Your words may result in my child having disordered eating which could include chronic yo-yo dieting, frequent weight fluctuations, rigid and unhealthy food and exercise regime, feelings of guilt and shame every time my child eats a food you have instructed is “unhealthy” or they gain weight or they are unable to maintain exercise habits. Your instruction could potentially cause my child to be preoccupied with food, body and exercise that causes them distress and has a negative impact on their quality-of-life. It could result in my child using compensatory measures such as exercise, food restriction, fasting, purging, laxative use, etc., in an effort to “offset” any food consumed. It is estimated 35-57% of adolescent girls and 20-30% of adolescent boys engage in crash dieting, fasting, self-induced vomiting, diet pills, or laxatives. You likely do you not realize the impact your words can have on my child’s mental and physical health – for the rest of their life. It is important you understand disordered eating is a serious health concern. Detrimental consequences could include a greater risk of obesity (the very thing you’re trying to prevent), eating disorders, bone loss, gastrointestinal disturbances, electrolyte imbalances, low heart rate and blood pressure, increased anxiety and depression, and social isolation. 00000000000000000000000000000000000000000000000000000000 ooooooooooooooooooooooooooooooooooooooooooooo
  8. Even if your words do not trigger my child to have an eating disorder or disordered eating, they may haunt them for the rest of their life. They may burden my child with thoughts every time they take a bite … they may question every food choice. They may analyze  every bite they take, every meal they choose, for the rest of their life. Your instruction may make my child afraid to eat wheat, chips, cookies, ice cream, or other foods they used to love and were celebratory. Please consider your words carefully. Please don’t make my child afraid of birthday cupcakes!  ooooooooooooooooooooooooooooooooooooooooooooo
  9. As my child’s mother, I know best what to pack in my child’s lunchbox. There are reasons my child’s lunchbox contains the foods it does. My choices may be driven by medical, mental, or financial needs. If you have questions regarding the food in my child’s lunchbox please contact me directly. Please do not discuss this with my child or shame them.  ooooooooooooooooooooooooooooooooooooooooooooo
  10. It is important that my child eat the lunch I have packed. If you notice my child is consistently not eating their lunch, is giving their lunch to other students, or is throwing it away or you have concerns regarding the amount of food my child is eating, please contact me directly. There may be a serious health concern. Please do not address this with my child. Please do not comment on the amount of food they are/are not eating. I count on you to be my eyes and ears when my child is at school.

I encourage you in the future to NOT monitor any child’s lunch or food choice. To reconsider and re-examine any school-based, anti-obesity, healthy living campaigns. To consider the fact that there is little research on the effectiveness of these programs. Is the potential risk of harmful effects on children’s physical and mental health and adoption of unhealthy behaviors worth the potential gain?

So, before you speak, please think carefully about your words. You see, my child respects you. They look up to you as their teacher. Imposing your beliefs and your nutritional needs on my child may compromise their health and mental state. Please teach them that all foods fill a need – always nutritional, sometimes celebratory and always nurturing.

Please understand, I know your intentions are pure and good. For that I will be forever grateful. But in the future I would appreciate it if you do not monitor my child’s lunchbox. Please leave that to me, their mother. I know their nutritional and emotional needs better than anyone.

Warm regards,

Mothers Everywhere

P.S. This article is not about monitoring lunch boxes because a child in the class may have an inadequate food supply in their lunch box or may have life-threatening food allergies. It is about the negative food talk happening in classrooms and lunchrooms, and how it affects our children. It is about food judgments and how programs that are intended to promote health, sometimes have big unintended consequences.

Written by Cherie’ Monarch.  A mom on a mission.

Copyright © 2017 Cherie Monarch. All Rights Reserved

If you are caring for a loved one with an eating disorder, please contact Mom2Mom – Eating Disorder Family Support Network and Man2ManEating Disorder Family Support Network on Facebook.  No one should walk this journey alone.

If you have been affected by an eating disorder or disordered eating and would like further information or help, please Contact the National Alliance for Eating Disorders for support at (866) 662.1235 toll free or The National Alliance for Eating Disorders (“The Alliance”) is nonprofit organization dedicated to providing programs and activities aimed at outreach, education, and early intervention for all eating disorders. The Alliance creates a bridge for those needing and seeking help by connecting people with resources and information to assist them in their recovery.


I Understand What it is Like to Not be Heard

Today is the one year anniversary of my second open heart surgery.  A surgery I vowed vehemently that I would never do again. A surgery that is so painful it can’t even be put into words. I have spent most of my life fighting and advocating for others… my daughters, my family, my friends, and my clients. It recently occurred to me that maybe I should start spending some time advocating for myself, speaking my truth, and raising my voice. That maybe it would help others navigate this journey we call life. So, I have decided to commemorate this anniversary by starting my own blog and speaking passionately about those things that make my heart beat, or keep it from beating.

Most people don’t understand what it’s like to live with an illness or medical condition and to be dying, literally, yet nobody’s listening. Not your family, your friends, or your doctors. Often times we may have cancer, heart issues, mental illness and fighting a battle every single day, struggling just to make it through the day. Yet no one is listening. You are routinely told “you look great”, “you are fine”, “we find no evidence that there’s anything clinically wrong with you”, etc.

Your struggle is invalidated EVERY SINGLE DAY!

I have lived this for the last six years. It started in the beginning of 2010. Suddenly I started experiencing physical exhaustion. I routinely road my bike for 10-15 miles every day, but was finding great difficulty riding two miles per day.  I would easily become winded.  I could not go one moment more. I went to my primary care physician and my endocrinologist. Both of them assured me “you look great, push through it, you are getting older. It’s Important that you exercise”.

I continued to persevere even though every fiber in my body was telling me something was drastically wrong.

This went on for six or seven months until I ended up in the ER in severe cardiac distress.  Of course my EKG was normal, but my blood pressure was abnormally high. Luckily the ER attending DID listen to me and did a CT scan of my chest. There he found a large aneurysm on my ascending aorta. I was discharged from the hospital without ever being admitted as he saw no immediate reason for concern. I attempted for weeks to get my primary care physician to listen. I was routinely dismissed and told that it was nothing of concern, don’t be worried, just continue to live your life.

The frustration of knowing something is critically wrong, yet being met with deaf ears is infuriating and isolating. It is as if you are standing alone on a small island in the middle of the Pacific.

I took matters into my own hands and advocated for myself. I found a cardiologist that was willing to do an echocardiogram on me. It was discovered that I had a birth defect in my heart. One that has existed for 45 years yet went undetected. A heart catheterization was performed and it was found that my heart was in severe failure. Within several weeks, and two days after my 46th birthday, I was laying on an operating table having a 13 hour open heart surgery. I was put in hypothermia. Portions of my aorta and my heart were replaced.

All of this for someone who three weeks prior they could find no medical reason for my daily struggles – a condition that has existed for 46 years!

I survived that heart surgery, but had a complication that has haunted me relentlessly ever since…24 hours a day, 7 days a week, 52 weeks a year, for over 5 years!. Every heartbeat resonates throughout my body. It starts from my stomach, sends a thrill up my chest, pounds against my sternum, and vibrates up my esophagus to the top of my head. This happens 60 to 80 times per minute. To say that this is a challenge to live with would be an understatement. It’s difficult to sleep at night; it’s difficult to focus during the day. It’s a challenge some days to make it through the day. If I am upset or get excited the vibration becomes even more pronounced and more frequent. So you spend your days trying to remain as calm as possible. You try to distract yourself.

You are repeatedly told by medical practitioners that it’s no big deal. You try to convince yourself that you can live like this. For five years I persevered through this daily torment.

In July 2015, I again get the sensation that something is terribly wrong. I start having difficulties walking to the point that I can’t walk across my house without pain. I repeatedly seek the counsel and wisdom of my doctors. A few miscellaneous tests are conducted, and again I am dismissed and told that there is nothing medically wrong. I am instructed to “push through” the pain in my legs and to “dismiss” the feeling of uneasiness and mortality being in my near future.

Seven times I return to the physicians begging them to listen to me, begging them to be more proactive. Again, I am dismissed and told that “there is little to no likelihood of anything being clinically wrong with me”.

I make one final attempt. I visit my physician and beg for her assistance. I plead that I’m dying and I need her help to figure out what is wrong. Clearly, she just thought that I was some crazed 51-year-old woman or a hypochondriac that is becoming a pain in her backside. The next day I have an “event”. I lose vision in left eye for several minutes and I have difficulty speaking. I can think my thoughts, but I can’t speak them. I go to the ER and they discover I’ve suffered a TIA or mini-stroke. I’m told that I can try to address it on an outpatient basis or if I want, I can be admitted to the hospital. I explain to the ER physician that something is terribly wrong and that I’ve been begging my medical support team to listen for five months. He agrees to admit me and run several tests. From there the shit storm begins… every single day reveals a new piece of the puzzle. It starts with my carotid being 100% occluded…that’s right…my carotid is 100% blocked for 6 inches. From there it is discovered that both of my legs are loaded with emboli. My husband and my advocates continue to push for answers.  They were relentless. It was their tenacity that saved my life. After much prodding, additional tests were completed that revealed that I had a large thrombus sitting on my heart. I am kept in neuro ICU as they attempt to dilute the clot with intense IV medication. I am woken every hour for days, weeks, as they attempt to determine if I’ve suffered another event. I am on death watch.

It is difficult to explain what it’s like being on death watch. The hours tick slowly by. Waiting for something to happen. Praying that something will not happen. You start to analyze your-life. The choices you’ve made, the experiences you’ve encountered. The thoughts become overwhelming. Facing your own death is extremely difficult. At some point you have to detach. It’s almost like you’re having an out of body experience. The feeling of eminent doom is overwhelming. Doctors are skeptical when they look at you; after all, I looked totally “healthy”. But then they would read my chart and a sense of gloom would cover the room like a blanket.

One doctor told me “you’re the best looking patient on the floor, yet you are the sickest -no one would know you’re sick by looking at you”.


Being wheeled into my second open heart surgery.

I cannot put into words the feeling of frustration and hopelessness when you know something is drastically wrong but you’re being routinely dismissed by medical professionals and others just because “you don’t look sick”. In the months that preceded my trip to the ER I told my husband and several of my close friends that I was dying. I was not overdramatic; it was just a statement of my truth. I could feel my body shutting down. Yet no one would listen. No one seemed to care. And the fact was, I was right. Slowly pieces of my body were succumbing to the plague that riddled them.

Things became very critical and it was necessary for me to undergo open heart surgery for the second time. This was my only hope, my only chance I had for survival.img_4283 I wanted to survive. Once again, one year ago today, I would undergo my second open heart surgery. My chest would be split open and my heart exposed for all to see. My prize for being ignored was I got to spend my Thanksgiving in the cardiac ICU fighting for my life. There was no turkey, stuffing,  sweet potatoes or pumpkin pie on my Thanksgiving Day. Instead,  I was intubated with chest tubes, arterial lines, catheters, and pacing wires invading my chest, arms, and neck.

As I slowly gained consciousness, I recognized the pain in front of me. I had met it before. There is not enough dilaudid to make meeting that pain any easier. The pain is like an avalanche roaring toward you. You can’t run from it when you see it coming. It overtakes you and buries you, smothering you and sucking the oxygen out of you. It was hard to wrap my head around the fact that I was being forced to endure this life altering event again. The pervasive thought was that this did not have to happen.  My heart would be physically repaired, but the mental and physical pain, anguish, and devastation would linger.

The frustration of screaming, and no one listening, would remain. The loneliness of being stranded on the island would leave scars.

Today, in my reflecting, it crossed my mind that my experience is not much different than those that struggle with mental illness, especially those that have an eating disorder or anxiety. An eating disorder is a mental illness with physical manifestations. My constant “vibration” which plagues me 24 hours a day, is not unlike the invasive thoughts that plague those struggling with an eating disorder or hound those that suffer anxiety… 24 hours a day, seven days a week. Relentless. Daunting. Paralyzing. The fact is…

You cannot always determine whether someone is struggling with mental or physical illness by looking at them.

Patients and families with sick children repeatedly seek the counsel and wisdom of medical professionals in the hopes of saving their life, but are routinely told “they look fine”, they don’t look sick, their labs are fine, all tests are normal, this is just a phase, let’s just observe over the next few months, etc. The daily struggle and frustration of trying to get someone to help, someone to listen, when you know your body or your child’s body is shutting down is difficult to put into words. You just want to scream and yell “I am dying! Why won’t anyone listen to me?”. This is much like the situation that Candy Miller in Texas encountered when trying to secure medical assistance with her daughter, Lacey Smarr. She took Lacey repeatedly to medical professionals and hospitals searching for answers, for guidance, for life-saving treatment. She even suggested her daughter may have an eating disorder. No one truly listened. After all, she looked fine. The next day, the day after her 15th birthday, her daughter suffered a cardiac event that would take her life. An event that could have possibly been prevented had someone taken the time and the energy to truly listen.

When we listen and take a thorough medical history we can hear the answers that we cannot see.

Please be clear, I am not blaming medical professionals for not “seeing” the illness in front of them. I am not blaming them for not being educated about eating disorders or mental illness because in all reality they may not even know they need to be educated, What I am blaming them for is not listening to the families and patients that come to them seeking their wisdom and their guidance, that are looking for intervention and support. I am blaming them for not truly taking the time to listen and understand the history. If you take the time to take a comprehensive medical history from your patients and truly listen to them the answer is there. It is slapping you in the face. It cannot be ignored. Much like my own experience with my heart, the answer was there. I even provided the answer, but no one took the time or energy to listen.

There is no greater frustration or pain than being routinely dismissed and invalidated when you know something is horrifically wrong and you are facing your death. Just because a patient does not look sick does not mean they are not ill, that they are not in a critical health crisis.

Today, I’m going to start speaking through this blog in the hopes that I may be heard. I will continue to support and fight for family and friends, but I am also going to start advocating for myself and speaking my truth. It turns out, that I have a lot to say. This has been exacerbated by the fact that the vibration that has plagued me since the first heart surgery has become even more pronounced, more invasive. I am not going to lie. The recover from this second surgery has been extremely difficult.  There have been many setbacks and challenges.  They continue today. The bottom line is, this did not have to happen. Had someone taken the time to really listen to me, to hear me, this may have all been avoided. So today, I implore you to speak. Please know that there are others out there, like me that understand what it’s like to not be heard. Please know that I am listening and if you continue to speak, maybe others will hear your voice.

Copyright © 2016 Cherie Monarch. All Rights Reserved

For information about heart conditions, please contact the American Heart Association.