Talking with Bill Coon

Almost a year after reading SWIM: A Memoir of Survival and corresponding with the author, Bill Coon, by email, Facebook and Twitter, I finally got to meet him in real life in mid-October at the American Heart Heroes Regional Family Conference in Gainesville, Florida. He was the featured speaker at the conference, highlighting key messages of surrounding yourself with people who support you, setting goals, digging deep and fighting for your life, advocating for yourself, and taking good care of your health.

Born in 1989 with hypoplastic left heart syndrome, Bill is a two-time heart transplant recipient. At 3 weeks old, he was the fourth infant heart transplant performed in the Midwest, and the eighth in the nation. In 2009, he went into heart and kidney failure and suffered from cardiac transplant vasculopathy. In late 2009, he received a new kidney and his second heart. Since his recovery, he has been inspiring those with chronic and critical illness to keep fighting. He is also a living testament to the importance of organ donation.

During the conference, we spent some time Talking with Bill.

Hummingbirds and Heart Heroes

Last week was a sad one for Broken Hearts’ families. We lost two sweet children to their congenital heart defects. Two-year-old Caleb Adamyk and 11-hour-old Tristin.

Over the weekend, a hummingbird flew toward my dining room window, hovered, looked inside and then flew away. We do not have hummingbird feeders, and I have never seen a hummingbird at my house before. 

Later, I remembered a passage in Bill Coon's book, SWIM: A Memoir of Survival, about how he saw a hummingbird for the first time in his life, and that's when he knew -- despite his failing heart -- he was eventually going to be OK. 

Thanks to Google and Yahoo, I learned this about hummingbirds:

“This energetic little bird migrates 1,800 miles from the eastern United States to spend winter in Central America. This distance alone indicates the hummingbirds’ stamina and perseverance. They can show us how to go the distance ... Hummingbirds have the advantage of seeing things from all angles and can show us how to expand our perceptions … The hummingbird serves to remind us of the beauty and wonder of the world. While their speed and sound may sometimes startle us, they help pull our attention out of the mundane so that we can acknowledge and appreciate the beauty of creation.”

Caleb Adamyk
March 20, 2009-Aug. 29, 2011

My hummingbird was a Godwink from Caleb and Tristin, two boys who defied odds by being here for the time they were here. Persevering and going the distance. Expanding our perceptions. Reminding us of beauty and wonder, and pulling our attention away from trivial matters to focus on what is important — focusing on faith, hope and love.

Remembering Caleb and Tristin, and all of our angels today, and keeping their families close to our hearts.  

Have You Loved Your Scar Today?

Broken Hearts of Florida is thrilled to partner with Rock Scar Love and Amy Tippins! 

An amazing woman with a big scar and a bigger heart, Amy and her RockScar Love inspire passionate lives through clothing. RSL celebrates sexy scars, the lessons they teach us and the strength they create.

When you shop from the Broken Hearts of Florida affiliate page, RSL donates 10 percent of the proceeds to Broken Hearts. We, in turn, use funding to support Broken Hearts programs and services,  such as our monthly potluck dinners for family and friends, nonperishable food for our Food from the Heart Pantry at the Shands Children's Hospital's pediatric intensive care unit, our annual May Day Picnic, and our Regional Forum on Congenital Heart Disease.

Help us help our families! Buy stuff! Plus, Amy's designs are so cool! Read more about Rock Scar Love and Amy Tippins. Then, GO SHOPPING!

Congenital Heart Families: Extraordinary People

It’s an honor and delight to be part our heart families’ lives. Even when there is fear, crisis, turbulence – they hold fast to their faith.

It is an extraordinary privilege to witness the love, hope, courage, compassion and selflessness that our parents and children demonstrate in their everyday lives.

Today, in particular …

Rachel and Emily are awaiting new hearts.

Ramsey is fighting rejection.

Little Caleb is fighting for his life …

Please say prayers for, think positive thoughts about, get your mojo on for, and/or send healing vibes to these heart warriors, and hold them and their families in your hearts.

Caleb

Ramsey

Rachel

A Picture That Paints a Thousand Words

Nels Matson, left, and my son, William, pull down the collars of their shirts
and show each other their scars from open-heart surgery. They both have
versions of partial anomalous pulmonary venous return. Nels' heart was
repaired when he was 4; William when he was 2.

At school tomorrow, William is supposed to bring pictures of himself and tell his class about them. Do you know what pictures he wanted to bring? The ones that tell his heart story. Wow! Lately, especially, he's been so reluctant to tell people about his heart, even hiding his scar. 

But I think the Broken Hearts' May Day Picnic helped him get past that. He got to see dozens of other kids, some with much more noticeable scars than his own, running around bare-chested, oblivious and proud of their bodies. At first, he wouldn't take off his T-shirt to go down the slide. Later, I couldn't get him to put his shirt back on.

I think one of the biggest highlights, though, was meeting Nels Matson (athletes4heart). I had tried all day to get William to talk to Nels but he was having nothing to do with it. Toward the end of the day when the crowds had thinned and William had pulled himself up to a table, munching on left over chips, Nels slyly sat at the table at William's height and started talking to him about William's three beloved bicycles. The rest, as they say, is history. 

Nels and William have similar heart defects -- different versions of partial anomalous pulmonary venous return. While heart defects aren't rare, this particular one is rare, and William's version (scimitar syndrome) is even rarer. So Nels was talking to William about his surgery and told William that he had had surgery, too, and that they both had scars. And with that ... they pulled their collars down and showed each other their scars! 

This picture paints a thousand words!
Thank you, Nels, for helping my son see he's not alone.

Three Hearts, One Battle

UDPATED April 29, 2011

The piece aired on Thursday, April 28. ABC27 and Anne Imanuel did a great job! Thank you for sharing an inspirational story and raising awareness of congenital heart defects. 

You can find the story here on the ABC27 website.

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Remember last month, we wrote about "Those Massey Boys"? 

That blog post caught the attention of WTXL-TV, ABC 27, Tallahassee, and they decided to do a story about the Masseys! Thank you, Anne Imanuel!

I can't wait to see the whole piece! But in the meantime, here's a sneak preview that ABC 27's Creative Services put together to promote "Three Hearts." (You can also find it on our YouTube channel.)

"Three Hearts, One Battle" 

Thursday, April 28, at 6 p.m. 

WTXL-TV ABC 27

Food from the Heart

New Food Pantry at Shands PICU

Families whose kids are patients in the pediatric intensive care unit at Shands Children's Hospital have a new source of FREE small meals and snacks -- Food from the Heart, a pantry of healthy snacks and small, quick meals, provided by Broken Hearts.

Food from the Heart snacks are available to any family staying in the PICU, regardless of diagnosis or financial need. The only requirement to request a trip to the pantry -- hunger and a desire or need to not leave the PICU floor! 

Families simply tell the Charge Nurse or the PICU Social Worker that they'd like to select a snack or small meal from the Food from the Heart Pantry.

Thank you, Fidelis Omicron chapter
(Tallahassee, Florida) of Alpha Delta Kappa,
for our first batch of goodies!

Our first batch of goodies came from the Fidelis Omicron chapter (Tallahassee, Florida) of Alpha Delta Kappa, an international honorary organization of women educators. My mother, Maryjane Thurston, a very-longtime member, graciously arranged this. I was able to tell the group about Broken Hearts and they brought items for our pantry. They were so generous, we were able to fill a large laundry basket! 

We are so excited to work with the Shands PICU to provide this new service to heart families and other families whose children are in the hospital. 

Now that we have the pantry -- we are accepting donations for it! We ask that items are nonperishable and nutritious (or at least mostly so). We want to provide families with food that will nourish them and boost their energy.

Suggested items for our
Food from the Heart pantry:

• Healthy Choice Fresh Mixers
• Whole Almonds (plain, individual packets)
• Raisins (individual packets)
• Granola Bars (Kashi, Nature Valley, Quaker)
• Dark Chocolate (individually wrapped)
• Pretzels (individual packets)
• Laughing Cow Cheese
• Low-sodium Soups (in microwaveable containers)
• Hot Teas and/or Cocoa
• Easy-Mac 
• Trail Mix (individual packets)
• Applesauce (original, no sugar-added)
• Fruit cups (such as Del Monte)
• Juice Boxes

For more information or to donate, contact:
Broken Hearts of Florida at brokenheartsinfo@brokenheartsofthebigbend.org.