The Zero Sum Happiness Game (Or, What I Want My Daughter to Know About Being Human)

America is a happiness-obsessed society. This observation has been made so many times that it is almost a platitude to say it. Oh, I’m not claiming that we are actually happy people. In fact, most surveys indicate that we Americans are less happy than people in many other cultures. I will leave the explanations for this to people far more astute than I am. But suffice it to say that happiness is a value so enshrined in the American psyche that it even made it into our Constitution. “Life, liberty, the pursuit of happiness…”

Don’t get me wrong. I’m not arguing that the desire to be happy is bad or even unrealistic. But there does seem to be an underlying assumption in popular culture that the ideal to strive for in this life is one hundred percent happiness. One hundred percent of the time. The fact that we must know that this is not rationally possible doesn’t seem to change the fact that we try to be. And we just don’t do very well as a culture accommodating other-than-happy in our everyday lives. We avoid anything that might make us the least bit sad or uncomfortable. And we really wish that other people would avoid sad and uncomfortable topics when they chat with us. So when the lady that always mentions the funny things her dead daughter used to do starts talking about said daughter at a dinner party we smile politely but quickly change the topic. Because what she is talking about is, well, sad.

In the days before Chloe died after a prolonged battle with a terminal neural disease, my husband and I had a conversation with a grief counselor about coping with the future without Chloe. The counselor was an amazingly insightful woman and when we asked her if we should plan on getting on some sort of medication to handle the grief her response was, “Don’t confuse sadness with depression. Your 2-year-old is dying. You are supposed to be sad.” I was supposed to be sad. The phrase jarred me, but it also gave me an immense sense of relief. This crushing, bruising, overwhelming sadness was appropriate. Even somehow necessary. See, the problem with a “being completely happy” goal is that it becomes a zero sum game. What if something so devastating happens that one hundred percent happiness isn’t possible? The alternative is no happiness. Game over.

Admittedly, papering over the deep gashes of my own personal brokenness is tempting. I don’t want to stare at the chasm where my daughter used to be and wrestle with how to fill it. Or admit that I can never fill it. And culture doesn’t make the balancing of joy and pain easy. I find infinite escape hatches from the pain. I can Facebook façade post unpleasant realities away. I can medicate the pain away. Maybe even religious explanation bad-things-happening-to-good people it away. Anything but actually stopping and doing the hard work of learning to let grief and happiness coexist. But there is a resting that comes from admitting that I cannot be perfectly happy and that this deep emptiness will never go away. To really meditate on the fact that there is inherent in human existence pain and brokenness. That ignoring my own brokenness will only lead to more brokenness and isolation.

In the weeks after Chloe’s funeral my oldest child (who was 4 at the time) asked me constantly “mommy, are you sad?” I had made the decision to be as honest with her as possible, and so at first I simply responded with what I truly thought was an honest answer: “Yes, I am very sad, honey.” But anyone with young children knows that if a child continues to ask the same question repeatedly, there is a good chance that the grown-up is missing something and would do well to give a more thoughtful response. And one day I was finally ready for her question.

“Mommy, are you sad?”

(Pulling her up on my lap.) “Yes Eva, I am very sad. And there is a little part of my heart that is sad all the time. But you know what? There is a big part of my heart that is very happy.”

And I proceeded to tell her all of the things (including having her with me) that made me happy. At the end of the list I hugged her and said “So I’ll probably always be really happy and a little sad all the time from now on.”

That is the last time I have had the “happiness discussion” with Eva. I hope it was as formative a moment for her as it was for me. I hope she grows up to be a woman that can deeply grieve the loss of her beloved sister, hate the brokenness in the universe that causes death and sickness, go out dancing with friends, and laugh uproariously at lively dinner parties all at the same time. I hope she learns to gather the jagged shards of loss, disappointment, joy, and happiness that are so mixed together in this universe and not try to construct a perfect life with neatly interlocking pieces out of them. I hope she simply holds the brokenness in her hands. If she learns to do this there is a good chance that she will never be one hundred percent happy. But she will be honest. Some things are better than complete happiness.

Finding A Name

You can find more blog posts from Erica Barnes here: http://www.chloesfight.org/category/blog/

Mother’s Day came and went and with it the familiar struggle to find a label for myself. I like definitions for things. Labels are comforting and secure. Call it a personality trait, but I often feel if I could just find a word that describes the person I’ve become since losing my daughter I would somehow be able to own that title and act the way a whatever-the-word-is acts. I once heard a person say that we can find titles for all kinds of loss. A woman who loses her husband is a widow. A man who loses his wife is a widower. A child who loses his or her parents is an orphan. But, so the argument went, the loss of a child is so deep and painful that humanity hasn’t been able to find a word for it. Maybe that’s true. The thought resonated with me when I first heard it. But in the years since losing Chloe, I have come to a different conclusion for why we haven’t found a special title for a person who loses a child.

Chloe was a spunky, beautiful, curly headed 2-year-old with a life of breathless wonder ahead of her. My husband Philip and I had already woven more hopes and dreams for her future than I could count. When she was diagnosed with a terminal degenerative neural disease and only a slim chance of a cure, my husband and I did what any young parents would do for their baby; we fought like hell to save her life (or ensure she would live with the best quality of life possible) and adjusted our expectations as best we could. With every new piece of nightmarish diagnosis we tried to shift our parental paradigm to what her future may look like. “My God, Chloe may not be able to dance at her own prom. I just want her to be able to walk with a walker. Ok, I just want her to be able to walk AT ALL. Ok, the disease is going to cause intellectual impairment. I just want her to graduate high school. I just want her to be able to talk a little, maybe express her basic wants and needs. I just want my baby to live. I just want my baby to die without too much pain.”

The week that Chloe laid in hospice, I packed up all but a few of her clothes, toys and furniture and took them to a center that houses women struggling with addiction and their children. It was one of a series of difficult things I had done since hearing her diagnosis of metachromatic leukodystrophy. I stared blankly at the tiny, new coat she had never even worn. In the anticipation that is second nature to a parent, I had bought her the coat ahead of winter. This is what parenting is. Countless acts of caring for our children. Tangible acts of love and care. Thinking ahead for them. How would this coat accomplish the purpose I as a parent had intended for it? I knew the hard answer in this new existence of mine; by being worn by a little girl who needed it. That day a journey to find a new way to parent Chloe began.

A couple of days before Chloe died, Philip and I sat beside her bed and made her this sacred promise. We promised her that we would do all of the good in the world we were meant to do as well as all the good she would have done if she had lived. This promise has been a driving force in our lives ever since and has crystallized choice after choice for us. While it requires honesty on our parts and constant reassessing of our own emotional health to stay grounded, is our new parenting paradigm.

In 2014, Philip and I founded the Chloe’s Fight Rare Disease Foundation whose mission it is to fund research that finds treatments for rare and underfunded diseases such as metachromatic leukodystrophy. We are often called heroes but we aren’t. We make the choice to tirelessly raise money, ceaselessly promote, obsessively research for the reason that all moms and dads make their choices. So that, at the end of the day we can lay our heads down on our pillows and call ourselves what we all want to be called; a good parent. When a cure for metachromatic leukodystrophy is discovered (and if I had a part in it) if my name is never mentioned I won’t care. Somehow Chloe will know and I will have done my job for her. You see, parenthood doesn’t end when your child dies. I am and ever will be the mother of Chloe Sophia Barnes. So back to the assertion that society cannot find a word for a person who has lost a child. I believe society has the word. The word is “parent”.

Chloe Fest .05K

Come to the fourth annual Chloe Fest to honor the memory of a brave little 2 year old who died fighting a degenerative disease called metachromatic leukodystrophy (MLD). Every penny raised will go directly to cutting edge research at the University of Minnesota. To learn more go to www.chloesfight.org and let’s add MLD to the list of previously terminal childhood illnesses!

Here’s what we’re going to do to pitch in for this fight. A .09 mile walk/run/skip. That’s not a typo, we want you to join us for a 9/100 of a mile walk around the circle of our neighborhood to help raise money for this cause. We will get everybody signed up/registered from 10:30-11:30am and spend the next half hour getting everybody ready for the big walk which will kick off at noon.

Entry fee will be $25 for adults, $5 for kids. For your $25 you will not only get to help out a great cause but you’ll get plenty of food and plenty of great beer specially crafted for this event by some fantastic homebrewers. Lemonade will be provided for the kids and non-beer-drinkers. We’re also working on getting some raffle items so make sure you save a few bucks for that as well.

When: May 21st, 10:30AM – 2 PM
Where: The Isenberg’s Home, 7608 Elm Grove Cir, Minneapolis, MN 55428-3878
What: 0.5k walk & Green Egg BBQ

Rare Disease Day

Rare Disease Day is celebrated around the world on the last day in February. It is an internationally recognized day designated to raise awareness for the over 7,000 rare diseases that affect the lives of millions. Here is how you can get involved this year in Minnesota:

 

In partnership with NORD (National Organization of Rare Disorders), the official US sponsor of Rare Disease Day

RareDiseaseDayNORD logo

Rare Disease Statistics & Current Research

Statistics:

  • There are approximately 7,000 different types of rare diseases with more being discovered every day.
  • 30 million Americans have a rare disease which could also be put as one in ten. The United States isn’t the only country that has citizens with rare diseases. Europe is the same with ten percent of the population diagnosed with rare diseases.
  • It is estimated that 350 million people across the globe suffer from rare diseases. If all of those people were put on their own country it would be the third most populous country in the world.
  • Of the 350 million people with a rare disease, about 50% of them are children and 30% of those children won’t live to see their fifth birthday.
  • Rare diseases are responsible for 35% of deaths in the first year of life.
  • Although one would think these diseases would be curable, 95% of rare diseases have not one single FDA approved drug treatment

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Case Study: 

An In-Depth Analysis of Neuroacanthocytosis

neuro- nerve

acantho- spiny; thorny

cytosis- condition of cells; slight increase in numbers

Neuroacanthocytosis is a general term for a group of rare progressive disorders, chorea being the most common movement disorder associated with it. Chorea is characterized by rapid, involuntary, purposeless movements, especially of the face, feet and hands. Progressive cognitive impairment, muscle weakness, seizures and behavioral or personality changes are also symptoms that often develop from neuroacanthocytosis. Neuroacanthocytosis syndromes typically progress to cause serious, disabling and sometimes life-threatening complications (and are usually fatal). Although the mode of transmission may vary, these disorders are typically inherited.  Four distinct disorders are usually classified as the “core” neuroacanthocytosis syndromes – chorea-acanthocytosis, McLeod syndrome, Huntington’s disease-like 2 and pantothenate kinase-associated neurodegeneration (PKAN). All of these disorders share certain findings including abnormal involuntary movements, cognitive deterioration and acanthocytosis. Specifically, acanthocytosis refers to the presence of abnormally-shaped red blood cells called acanthocytes. Red blood cells are formed in the bone marrow and released into the bloodstream where they travel throughout the body delivering oxygen to tissue. Acanthocytes are abnormal red blood cells that have thorny or spiny projections of varying lengths protruding from the surface of the cell. Most adults normally have a small percentage of these unique red blood cells, but when individuals have abnormally high levels of acanthocytes, it often indicates the presence of an underlying disorder.

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Author: Cassidy Bianchi-Rossi

Press Releases

erica_profile

Contact:
Erica Barnes
ericademourebarnes@gmail.com

 

1) Rare Disease Day 2015:

Chloe’s Fight Rare Disease Foundation partners with representative Erik Paulsen and STEELE Fitness for Rare Disease Day

By: Erica Barnes & Henry Raether

February 24, 2015

 

Minneapolis- Chloe’s Fight Rare Disease Foundation, a local 501c3 nonprofit founded in 2013 in honor of the late Chloe Barnes, will be hosting the ‘Wear Something Rare’ event on Feb. 27-28. The goal of the event is to spread awareness for the 30 million Americans affected by rare diseases, because every child deserves the right to fight. With overwhelming support and participation from Rep. Erik Paulsen and STEELE Fitness, this years Rare Disease Day is raising more awareness and funding than ever before.

 

“Rare Disease Day is an internationally recognized event,” says Erica Barnes, co-founder and President of Chloe’s Fight Rare Disease Foundation, “but little has been done in Minnesota to recognize it.” To help spread awareness and further promote the University of Minnesota’s top-notch researchers in finding effective treatments, Chloe’s Fight started the ‘Wear Something Rare’ campaign. February 28th has been set aside as a way for those with rare diseases to make their voices heard and we want to do it in a fun and memorable way” says Jaysin Anderson, a fellow board member who is leading the awareness campaign. “We are calling our campaign ‘Wear Something Rare.’” The idea is to have participants wear rare, funky, and unique clothing and share photos of their ‘rare wear’ on Rare Disease Day via Chloe’s Fight social media.

 

There are currently about 7,000 rare diseases known and only roughly 400 of them have an effective treatment, according to the National Institute of Health. One such disease, known as metachromatic leukodystrophy (MLD), took the life of Erica and her husband Philip’s 2 year old daughter, Chloe, in 2010. Following her death, Hopkins residents Philip and Erica began to search for ways to fight rare diseases like MLD. Through doctors at Mayo Clinic where Chloe received her care, the couple was put in contact with Dr. Paul Orchard and Jakub Tolar at the University of Minnesota. Upon their first meeting, Philip and Erica realized that while research for finding a cure for MLD is promising, funding is very limited for research into MLD and many other rare childhood diseases. Thus began their journey to start the Chloe’s Fight Rare Disease Foundation. So far the organization and its partners have raised more than $40,000 for Dr. Orchard and Dr. Tolar’s research.

 

Want to join the fight? Post a picture of your ‘rare wear’ on Chloe’s Fight Facebook page and purchase a button at Nokomis Beach Coffee in South Minneapolis. All proceeds from the campaign will go directly to the work of Dr. Paul Orchard and Jakub Tolar and their colleagues at the University of Minnesota. For more information please go to www.chloesfight.org

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2) Parenting 

For the last 4 years I have struggled to find a label for myself. I like definitions for things. Labels are comforting and secure. Call it a personality trait, but I often feel if I could just find a word that describes the person I’ve become since losing my daughter I would somehow be able to own that title and act the way a whatever-the-word-is acts. I once heard a person say that we can find titles for all kinds of loss. A woman who loses her husband is a widow. A man who loses his wife is a widower. A child who loses his or her parents is an orphan. But, so the argument went, the loss of a child is so deep and painful that humanity hasn’t been able to find a word for it. Maybe that’s true. The thought resonated with me when I first heard it. But in the years since losing Chloe I have come to a different conclusion for why we haven’t found a special title for a person who loses a child.

Chloe was a spunky, beautiful, curly headed 2 year-old with a life of breathless wonder ahead of her. My husband and I had already woven more hopes and dreams for her future than I could count. When she was diagnosed with a terminal degenerative neural disease and only a slim chance of a cure, my husband and I did what any young parents would do for their baby; we fought like hell to save her life (or ensure she would live with the best quality of life possible) and adjusted our expectations as best we could. With every new piece of nightmarish diagnosis we tried to shift our parental paradigm to what her future may look like. “My God, Chloe may not be able to dance at her own prom. I just want her to be able to walk with a walker. Ok, I just want her to be able to walk AT ALL. What? The disease may cause intellectual impairment? I just want her to graduate high school. I just want her to be able to talk a little, maybe express her basic wants and needs. I just want my baby to live. I just want my baby to die without too much pain.”

The week that Chloe lay on hospice I packed up all but a few of her clothes, toys, and furniture and took them to a center that houses women struggling with addiction and their children. It was one of the most difficult things I had done since hearing her diagnosis, metachromatic leukodystrophy. I took down the tiny, new coat she had never even worn, hugged it against me and wept. In the anticipation that is second nature to a parent, I had bought her the coat ahead of winter. This is what parenting is. Countless acts of caring for our children. Tangible acts of love and care. Thinking ahead for them. But how would this little coat accomplish the purpose I as a parent had intended for it? I knew the hard answer in this new existence of mine; by being worn by a little girl who needed it. Chloe was no longer that child and I knew in my heart of hearts that stubbornly keeping it wouldn’t be “for her” anymore. That day a journey to find a new way to parent Chloe began.

A couple of days before Chloe died Philip and I sat beside her bed and made one of the most sacred promises of our lives. We promised her that we would do all of the good in the world we were meant to do as well as all the good she would have done if she had lived. This promise has been a driving force in our lives ever since and has crystallized choice after choice for us. While it requires honesty on our parts and constant reassessing of our own emotional health to stay grounded, is our new parenting paradigm.

This year Philip and I founded the Chloe’s Fight Rare Disease Foundation whose mission it is to fund research that finds cures for rare and underfunded diseases such as metachromatic leukodystrophy. We are often called heroes but we aren’t. We make a choice to tirelessly raise money, ceaselessly promote, obsessively research for the reason that all moms and dads make. So that, at the end of the day we can lay our heads down on our pillows and call ourselves what we all want to be called; a good parent. If, when a cure for metachromatic leukodystrophy is discovered (and if I had a part in it) my name is never mentioned I won’t care one bit. Somehow Chloe will know and I will have done my job for her. You see, parenthood doesn’t end when your child dies. I am and ever will be the mother of Chloe Sophia Barnes. So back to the assertion that society cannot find a word for a person who has lost a child. I believe society has the word. The word is “parent”.

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In the Press

Published Articles

Rare Disease Day 2017

Rare Disease Day 2016

  • Kare11 Evening News – Live Coverage

5K 2011

UPDATE: The 2020 Big Fat Greek 5K is canceled due to COVID-19

After a lot of deliberation and hope and effort to try to open the 5K safely, we’ve come to the difficult decision that we have to cancel the 2020 Big Fat Greek 5K. This was particularly difficult because this year would’ve been our 10th consecutive race to benefit rare disease in Minnesota.

A HUGE thank you to all of the sponsors, participants and volunteers that made the 2019 Chloe’s Fight 5K Family Run & Walk an overwhelming success in partnership with the Minneapolis Greek Festival.

We look forward to seeing you again next year for another chance to connect and to support the rare disease community by sponsoring research and raising awareness of children rare diseases. 

 

SAVE THE DATE: Sept 10th 2021