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Kimmel Story Reminds us that Care and Advocacy are Powerful Bedfellows

Unless you’ve been living under a heavy rock without wifi, you’ve no doubt seen that late night talk show host Jimmy Kimmel used one of his recent monologues to share an emotional story about his new baby boy, Billy. His story was both touching and timely, which helped the video segment garner more than 10 million views on YouTube in just a few days. As a Mom with a similar story, I too found it touching, and also a critical reminder of two underlying messages to this story.

First, it’s important to point out that this story was particularly personal for me because during the same week Kimmel and his family welcomed little Billy into the world and were quickly thrust into the scariest time of their life, I was reflecting on my own. You see, that same week, I celebrated the birthday of my daughter, who was born with the same heart defect exactly eleven years earlier. I knew Kimmel’s story because I had lived much of it myself. It was a scary time, but after being diagnosed with Tetralogy of Fallot and receiving excellent care, my daughter also came through it and is a healthy girl today. But just like Kimmel, I recognized two things—no kid like ours makes it through something like that without an amazing care team; and anyone in a caregiving role—whether as a parent or a professional healthcare provider—should accept that part of that role includes advocacy. Early Recognition

The Kimmel family was fortunate to have a nurse who quickly recognized their son’s condition and activated a skilled care team that ultimately performed the needed heart repair and set little Billy on a path to recovery. It will come with other steps and surgeries and a lifetime of follow-up—as has my daughter’s—but they will have the benefit of a highly trained and coordinated care team who will ensure his care stays on track.

In addition to nurses, paramedics and EMTs serve this critical role every day all around the world. Early recognition of a critical condition saves countless lives, and few will end up being featured in a viral video, but all are immensely important. Care and Advocacy

Something more was born the day Billy came into the world—a family of advocates—and Kimmel, with the loudest and farthest reaching platform, will be chief among them. But that nurse delivered them too. She started it all by advocating for her patient in the moment of care. And now the Kimmels, countless others who were touched by their story, many who donated to hospitals as a result, and anyone else with a similar story will become advocates too.

We must advocate for the most vulnerable of our patients—not just children, but the elderly, disabled, and other special populations too. For caregivers, the care part is in the job description, but the advocate part is in the commitment we all make to the role and to the patients we serve.

In a time of uncertainty around our nation’s healthcare system—and the legislation that governs it—and what that might mean for insurance coverage and access to quality of care for many populations, we must hold steady to the highest professional standards of care—that should include both caring and advocating at every turn.

### What is Tetralogy of Fallot?

Congenital heart defects—like Tetralogy of Fallot, the condition affecting both Kimmel’s son and my daughter—are the most common birth defect, affecting nearly 1 in every 100 births. Approximately 40,000 congenital heart surgeries are performed each year in the U.S., and it is estimated that as many as 3 million people live with congenital heart disease in the United States.

Tetralogy of Fallot (TOF) is a serious congenital heart defect affecting about two in 10,000 babies. In TOF, abnormal connections between the ventricles prevent enough oxygen-poor blood from flowing to the lungs as it should. As a result, a person with TOF has a lower-than-normal amount of oxygen in the blood. Historically, children with TOF were called “blue babies” because they may experience “Tet spells” where their skin may appear blue. In a normal heart, oxygen-poor blood returns to the right atrium from the body and travels to the right ventricle. Then, it is pumped through the pulmonary artery into the lungs, where it receives oxygen. Oxygen-rich (red) blood returns to the left atrium from the lungs, passes into the left ventricle and then is pumped through the aorta out to the body.

According to Children’s Hospital Boston (where my daughter had her heart repair), children born with TOF have a combination of four cardiac anatomic characteristics:

Ventricular septal defect: There is a hole between the right and left pumping chambers (ventricles) of the heart.

Right ventricular outflow tract obstruction: The connection between the right ventricle and lung (pulmonary) artery is narrowed, and blood flow to the lungs is blocked. This is what causes babies to be blue.

Overriding aorta: The artery that connects the left ventricle to the body is positioned too far to the right.

Right ventricular hypertrophy: The right ventricle is thicker than normal, because it’s pumping against a blockage. It’s working too hard.

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Audience targeting became a content marketing norm, but now personalization is increasingly important to rise above the clutter.

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It’s Mental Health Awareness Month! Share it forward, and let’s start a healthy conversation. #mentalhealth #mentalhealthmonth #loveyourbrain

Hey, Tumblr.

Today is May 1. The first day of Mental Health Month. This entire month we want to nudge all of you to celebrate triumphs, acknowledge struggles, and just come together. Let other people know they’re not alone. Feel less alone yourself. It’s what Post it Forward is all about.

One of the incredible ways you—all of you—have helped shape Tumblr is with your ability to be open and honest.  It was you that turned this platform into a community, one based on genuine expression, creativity, and acceptance.

Neat. How can I participate?

Glad you asked! Each week, for all four weeks, we’ll be giving you ideas for ways to Post it Forward.

Week 1—Post it for you: How you practice self-care and personal well-being.

Week 2—Post it for each other: Ways you can be there for each other.

Week 3—Post it for reflection: Sharing stories of personal growth and development.

Week 4—Post it for the future: Committing to continuous reflection and improvement.

This week is all about posting for you. Acts of self-care. Here are some places to start:

Post an emoji spell for self-care and positivity. 🌈 🔮 💕 🌱

Share a photo or GIF of something that calms you down. Don’t have one? Here’s one.

What’s the one thing that always cheers you up? Post a photo of it, take a GIF, or illustrate it. Toss a sticker on it, if you’d like.

Never forget that you are valid! Post a selfie with “valid” sticker (see below).

Make a list of things you like about yourself.

Make a checklist of 5 acts of self-care you promise to do for yourself this week.

Make an audio post with a song that helps you zone out and re-energize.

Don’t forget to tag all your posts with #postitforward this month! It makes it easier for everyone to find each other’s contributions.

What else?

We’ve asked our pal Tumblrbot (@tumblrbot) to help out with any extra encouragement you might need. Try sending them messages like “tell me about Mental Health Month” or “what’s this week’s prompt?” Tumblrbot will let you know what’s up, because Tumblrbot is a friend to all of us.

We got Answer Times, all of them taking place right here on Post it Forward unless indicated otherwise:

5/4—Utkarsh Ambudkar, NAMI (@namiorg) ambassador, Pitch Perfect actor, and member of hip-hop improv group, Freestyle Love Supreme.

5/8—AJ Mendez Brooks, NAMI (@namiorg) ambassador, former pro wrestler, and author of Crazy Is My Superpower, a memoir about her experiences with bipolar disorder.

5/9—Brittany Snow and Courtney Knowles, co-founders of Love is Louder, from their official blog (@loveislouderofficial).

5/10—Kelly Williams Brown, New York Times best-selling author, from her official blog (@adulting).

5/15—Cynthia Germanotta, Lady Gaga’s mother and co-founder of the Born This Way Foundation.

5/16—Shannon Beveridge (@now-this-is-living), 25-year-old YouTube star. She’ll be partnering with It Gets Better (@itgetsbetterproject).

5/23—The creators of #TheBlackout movement, from their official blog (@theblackoutofficial).

5/25—Anna Akana, YouTuber, writer, director, and activist, from her official blog (@annaakana).

5/26—Mental health advocates Patrick and Amy Kennedy.

We even have some limited edition stickers ready for you in the Tumblr app right now:

<3 Tumblr

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Getting FutureSmart!

My daughter, the latest and greatest in tech, and Boston’s sports meccas are always top-of-mind for me. So, when I was invited to attend an event at Boston’s TD Garden (home of the Boston Celtics and Boston Bruins) to learn more about a new app and the community’s efforts to bolster kids’ financial literacy, I was all in. The event, hosted by MassMutual*, started with a Community Breakfast and a panel of smart Boston-area leaders who discussed the merits of increasing financial literacy in the community. The day’s host, actor and author Hill Harper, emphasized along with the panel that achieving this goal takes a smart collaboration among public schools, nonprofits and the private sector. Dave Hoffman, the Boston Celtics’ Senior Director of Community Engagement, thanked MassMutual for its long-standing partnership and expertise in helping the Celtics organization honor this very commitment to the community. Something squarely in my wheelhouse, we also learned during the panel that advanced financial preparation impacts healthcare costs (drops by ~4.5%!). And we know financial stress leads to stress-related health concerns. So, financial literacy clearly has a correlation with overall health and wellness, something I’m eager to dig into a bit more soon. The panel was followed by the FutureSmart Challenge, which brought 2,000 local students to the Garden to hear from Harper and former Celtic Champ Leon Powe about how they too could prepare for their futures. The event, fueled by Harper’s amazing energy, was fantastic. These kids were truly excited—and not just by the sight of Lucky the Leprechaun and the Green Team showcasing their acrobatic dunking skills—to also learn that prioritizing savings can help them achieve their goals. This also marked the launch of the FutureSmart app, which was developed by MassMutual and EverFi (an education technology company). FutureSmart is free to download in English and Spanish on iOS and Android platforms. My daughter and I got to check it out together, and so far, we really like it. But more on that in a future post! So, in all, it was a great, energizing day that will surely help me as I teach my middle schooler the importance of making smart money decisions. Learn more, check out the app yourself and let me know what you think! Would you use it with your kids? Also, check out the following posts about FutureSmart from MassMutual, and my friends and colleagues Jeff Cutler (with some amazing photos from the TD Garden!) and Steve Garfield. MassMutual - Kids, Finances, and the Path to ‘CEO Money’ JeffCutler.com - Financial Education – The FutureSmart Way SteveGarfield.com – My Firsts - FutureSmart *Disclaimer: MassMutual invited me to attend the FutureSmart Community Breakfast and FutureSmart Challenge. I was compensated for my time and participation, including my feedback on the app, and am currently providing consulting services to MassMutual.

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Important reminder from the FTC! Mind your #ad and #sponsor posts.

No more hiding in ad in a recco if you paid the person to post!

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New York celebrates justice in color. :)

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Not so tiny any more

As we got her ready for school, I told my girl it was Prematurity Awareness Day. She asked probing questions as she always does. I told her more. She knows, of course, that she was born early and tiny, and that she lived at the hospital for the first few months of her precious life. But the term "preemie" isn't one we've used with her. I didn't realize it until now. Perhaps it's because I never felt the need to label her, or give her or anyone else the impression that she couldn't be or do whatever she set her mind to. And, really, even before she greeted this world, she showed a strong determination to do just that. When she took out her own breathing tube before she was one hour old--while her birth weight and condition said she had no business doing so--I knew we couldn't call her anything but strong. And she's been proving us right ever since. She went to school and told her friends about being a preemie, and she brought the little stuffed ostrich her NICU nurse at Massachusetts General Hospital had tucked into her isolette during her very first night. At the time, she wasn't much bigger than the Beenie itself. But today...she's not so tiny any more.

Thinking of all the other babies born too tiny, and wishing as many of them as possible have the strength of my little girl. More? Read my previous #fight4preemies posts: My girl did the hard part Early Arrivals (2009) Visit the March of Dimes Prematurity Awareness Page: http://www.marchofdimes.com/prematurityawareness.html

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What I remember most about Legos. Via @oatmeal cc @danlondon

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My little miracle turns 4!

Four years ago today, I was trying to stay pregnant, but then evening came and so did my little girl. She was early...very early. So, I spent that first night unable to see her and wishing she'd make it through the night.

And that she did! So here she is making HER wish on her fourth birthday, very much a healthy, happy, active little girl. I'm so grateful for her, for the many people who helped her come into this world and get stronger, and for the family and friends who love her each and every day. Want to give a birthday present that helps enable more healthy babies? Please consider making her wish come true by supporting us in the March for Babies: http://www.marchforbabies.org/carissao

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(via gradontripp)

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Happy New Year! Best wishes for a healthy and happy 2010. Here's hoping we make a positive connection in the new year.

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2010: The Year of Positive Change

For many people, it seems 2009 was a year of challenges, changes and reinvention. That was certainly the case for me. I started the year reflecting and observing, reading the work of some of the smartest people in Marketing and Social Media (see a start to my list here), then took some time to define my place. I started Red Box Communications just before the end of the first quarter and am so happy to say today it was the right move for me. Still, while this year saw many changes, there is SO much I can improve upon and I’m anxious to kick off 2010 by focusing on the many aspects of positive change I can personally and collaboratively drive...[more]

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texturism:

Pantone Declares Turquoise Color of 2010

It’s blue! It’s green! Stop, you’re both right! Color authority Pantone has selected turquoise (15-5519 TCX on your Pantone fandex), with its legacy of Western jewelry and ’80s fashion, to carry the banner of Color the Year for 2010. We associate the hue with the bold “Bondi blue” of the original iMac, but Pantone sees a vacation in a color swatch. “Turquoise evokes thoughts of soothing, tropical waters and a languorous, effective escape from the everyday troubles of the world, while at the same time restoring our sense of wellbeing,”

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If it doesn't bend, it breaks

When I was in my 20s, I probably thought workplace flexibility had more to do with which type of project I worked on for hours-on-end than any sort of work/life balance. And at that stage of my career, I guess that mentality made sense, and even worked for me. I was able to work late nights and weekends, making my way up the corporate ladder with little more to balance than a social life.

Things are considerably different now...(see Career Life Connection Blog for the whole post)

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vanillabean45:

I’ve always loved antique typewriters. There’s something romantic about them- the way your fingers have to dance on the keys feels more like playing piano than typing, and words become music.

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My inspiration

Family. Friends. Work that makes a difference, makes me valuable, makes me happy. Music. Music. Music. Boston sports, whether it breaks my heart or not. The smile and embrace of my little girl. Strangers that make a kind gesture. Survivors. Would-be survivors who fought HARD but didn’t quite make it. Discovering something new and realizing how powerful it might be. Fear of failure. My own determination to not be afraid. Success, in all its small and large forms. Ice cream. The promise of love. Positive change. Taking calculated risks. Making mistakes. Learning from them. Smart people. People who know they aren’t as smart as they’d like to be, but put all their energy into doing their best. My late Grandmother. Life’s experiences, good, bad, ugly and indifferent. My vision for myself…

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vanillabean45:

fabmissk:

pchaca: So very true

amandapearl