Tuesday, November 22, 2011

Loving Caleb


Kim and Caleb, October 2011
By Kim Harris

Hello, worry; welcome back. This is exactly how I felt when I got pregnant. I was always a worrier and for me, pregnancy was no different. I would call my mom throughout the day, crying. I was worried. What’s new?

What I worried about was so trivial at the time, but I didn’t know it. To me, they were legitimate fears: Would I love my child enough? Would I know what to do with a boy? What if I didn’t bond with my child the way a mom is supposed to? What if I became angry at him when he took my sleep? What if I couldn’t handle motherhood the way I thought I could?”

Never once did I ask, “What If he’s not healthy?” I assumed he was. Every appointment showed a good, strong heartbeat. I was in my 20s and in good health. That means I’m guaranteed a healthy baby, right? I soon found out how very wrong I was.

Kim with Caleb, shortly after his birth.
On Dec. 22, 2009, my life was forever changed. Caleb joined this world at 10:06 in the morning. Instantly, I was in love. I immediately felt my world change. I knew in that second he was given to me, that I had a gift, a responsibility, and I would die for my child.

I was overwhelmed with emotion. I remember my parents being there, and a great friend had visited. I let everyone hold Caleb as much as they wanted, and I just kind of laid back and took in the fact that I was now a mom. I figured I would let everyone enjoy him now, and I would get him all to myself in two short days when we were discharged and at home. Sometimes, I regret that. I wish I would have held him more, and snuggled up with him more, but I had no clue and had no way of knowing what was to come.

I decided early I wanted him in the room with me all night. My heart was so full of love and I just wanted to fall asleep knowing my baby was next to me, safe in my room. I didn’t want him in the nursery. Around 10 or 11 p.m., I had Caleb in the bed with me and I was studying every part of him. He looked just like his dad. He was so peaceful. He was a little purple, but I figured every newborn looked like that. He was perfect and my life felt complete.

I had been awake for 36 hours and it was finally taking its toll. I realized I couldn’t have him in the room with me. As much as I tried to fight it, I had to call the nursery to come get him. They were my saving grace in more ways than one.

I finally drifted off to sleep, and around 2 a.m., a nurse woke me up, telling me there was something wrong with Caleb’s heart, but they weren’t sure what. A lot of things were thrown at me and I can’t remember it all, mostly because of lack of sleep, pain relievers and pain. I remember my husband telling me it wasn’t that big of a deal. That worry crept back into my head; I said, “It has to be bad if they’re rushing him to another hospital.”

About an hour later, we were allowed to see him before he was rushed to Shands Children’s Hospital in Gainesville, a hospital that at that point, I had never even heard of.  Caleb was in an incubator and now he looked like something was wrong with him. I don’t know if the wool had finally been taken off my eyes but right then and there, I knew something was wrong and he no longer was my “perfect” baby.

They discharged me a day early to be with Caleb the next day. We went home, got changed, and off we went to this hospital we knew nothing about. We went to the Shands’ neonatal intensive care unit and saw Caleb. It was terrifying. He was on a ventilator and had monitors everywhere. The beeps were too much. I wanted someone to tell me what was going on. I felt completely alone, although I wasn’t.

Caleb, while he waited for a heart.
Dr. Gonzalo Wallis met us in a conference room where he told us about Caleb’s diagnosis —several congenital heart defects that make up hypoplastic right heart syndrome (the right side of Caleb’s heart did not completely form during fetal development). Dr. Wallis assured me that nothing I did while pregnant caused this. I knew that in my heart, but I still couldn’t help but feel guilty. I remember Dr. Wallis and my uncle, a pediatric nurse, said I could be thankful Caleb didn’t have hypoplastic left heart syndrome, because that was so much more dangerous. “Finally,” I thought, “some good news.”
Caleb with one of his nurses.

We learned Caleb would need open-heart surgery in a couple of weeks. I felt awful for my child. He’s so tiny and no one that little should ever have to go through something that serious. I knew it had to be done, though, and as much as I hated it, I understood and gave consent.

On Jan. 7, 2010, before his surgery was to take place, Caleb had a heart catheterization (to make sure everything was just as it looked on his echocardiogram). I went down with them to take Caleb to the pediatric “cath” lab. Right before Caleb went back, he started to cry heavily, and he was swelling. His eyes were swollen and he turned even more purple. I kissed him through my tears and while they took him in, I turned to my family and broke down in tears. I knew he was sick and I couldn’t do a thing for him. It was unsettling.

The results came back from the heart cath: his coronary artery had sinusoids, or, as it was explained to me: pressurized blood vessels. Shands’ congenital heart surgeon Mark Bleiweis told me that if the first surgery was attempted, Caleb would have a heart attack and die. Our only other option was a heart transplant. I felt my world end right then and there. I knew nothing about transplants and to hear everything I was hearing was horrible.

After meeting with Caleb’s cardiologist and surgeon, I couldn’t take hearing anything else from anyone else, so I left alone and wandered the halls, crying. All the mundane worries I had before seemed so pointless now. All I wanted was Caleb to be healthy and home.

I remember listening to a nurse talk on the phone about buying a new house and how excited she was. It was hard to hear people’s lives going on, when my life was at a standstill. It was like every person around me was moving and I couldn’t move. I wasn’t able to, as much as I wanted to. It were as if someone were holding my hands behind my back and parading me in front of Caleb, telling me to help him, but I couldn’t. I was helpless in more ways than one.

I sat in the middle of the 3rd floor at Shands and cried harder than I think I have ever cried in my entire life. I didn’t care about all the stares I was getting. I didn’t care if I looked like a mess. My world was crumbling before me and I just wanted to curl into a ball and die.

The next three months were a blur. There were days when I had this overwhelming sense of confidence and strength, and I just knew I could do this. I would laugh with the nurses, with whom I had become close. I even looked forward to going to the 3rd floor.

Then there were days when I was in a dark place. I wanted to throw my hands up and say, “I’m done.” I would see parents come and go from the NICU with their babies in tow, or I would hear them cry out when they were told their baby had to stay four days for jaundice. I would get angry. I wanted them to know how much I would love it if jaundice were the only reason we were in the NICU.

I begged the nurses to move me away from everyone else because it was too hard. I was becoming angry and bitter. Toward the end of Caleb’s stay in the NICU, he took a turn for the worse. He couldn’t eat by mouth anymore. He was fed everything through a nasogastric feeding tube. He couldn’t tolerate his meds anymore. The tissues around his bones were inflamed. He was swollen all over. He didn’t look like my child. I couldn’t hold him. He would squirm and cry in pain when we changed his diaper.

Caleb, just after open-heart surgery.
The doctors met and decided they couldn’t wait anymore and they were going to go ahead with the “bidirectional Glenn,” which is the second stage of the three stages of surgeries (the first is the Norwood and the third is the Fontan).

Talking to Caleb after surgery.
They took Caleb back to the operating room on March 16, 2010. I couldn’t watch them wheel him away again; I stayed at the Ronald McDonald House. I didn’t want to tell him “goodbye.” It was too gut-wrenching. I wanted to remember him from the night before, when he actually had a good night. It was like he knew the next day, he was having the surgery and he would start feeling better.
 
The days after his surgery were tough. He was in a lot of pain. It had been so long since he had eaten by mouth, he forgot how to do it. He went through withdrawals from the pain meds, he got an infection at his incision, and he had a blood clot in his leg. It was a roller coaster. 

He stayed in the Shands’ pediatric intensive care unit for five weeks recovering from his open-heart surgery. He went home with a feeding tube. All of his meds and formula were to go in there. He started having violent episodes of vomiting. Seriously, it was like something out of The Exorcist. They determined he had gastroesophageal reflux, a severe type of acid reflux, and started him on meds for it.

During Caleb’s recovery, I watched a new baby emerge — one who smiled, giggled and cooed. I hadn’t really seen or heard that before. He was a quiet baby in the NICU. Now he was getting a personality and I loved every minute of it. My own personality started coming back. I noticed that once he started changing, so did I. My strength was back. My sense of humor was trying to come back. I felt more like me than I had in a long time.

While Caleb was in the NICU, I remember meeting Dr. Jay Fricker, chief of pediatric cardiology at Shands/University of Florida College of Medicine; he is now Caleb’s cardiologist. I thought he was very serious and needed to laugh more. Obviously, the NICU isn’t a place for laughter or joking, but I told myself that once I was out of there, I was going to make him laugh. It was my goal and my day would come.

On April 19, 2010, just three days before Caleb was 4 months old, he finally came home with us. It was a bittersweet moment. I was beyond elated to finally be a mom. I hadn’t felt like one yet because Caleb’s nurses did most everything I would have done if we were at home. At the same time, I was scared beyond belief. “What if something goes wrong”? I don’t have the comfort of a nurse right beside me.

The ride home was surreal. I think we drove 10 miles per hour under the speed limit. It was odd to see this tiny person next to me in the car and know all he had already been through, and now we were going home to try our hand at “normalcy.”

The first night was a rush I can never explain. It was amazing just to sit at home and watch TV with my husband and dogs, and with my child in my arms. I never thought that day would come. It filled my heart with the love I remembered feeling four months before when Caleb was born.

At our first appointment with Dr. Fricker after Caleb was discharged, I told him how much I hated how he, the nurses — pretty much everyone — called me “Mom,” instead of by my name. My name is not Mom. I understand they have so many patients and families that it’s impossible to remember everyone’s name, but I feel like the only person who’s allowed to call me Mom are my kids, and these doctors and nurses are absolutely not my kids!

Now it’s a running joke between Dr. Fricker and me. We saw each other at a conference recently, where we both wearing nametags. Caleb had an appointment the following week and I told Dr. Fricker I was wearing my nametag so he would be sure to call me “Kim.” He laughed! It was one of many times since Caleb has left the hospital that I’ve made Dr. Fricker laugh. He’s done well calling me Kim, with only a few slip-ups here and there, which I have forgiven.

Something I remember Dr. Fricker telling me is that I have one of the best personalities of any of the parents he’s met. He said I always have a smile on my face. That hasn’t always been the case, but watching Caleb thrive and knowing how he has changed my life has completely changed my outlook on life. I don’t worry nearly as much as I used to about the trivial things.

Caleb, today. A funny, smiling, beautiful little boy.
I still worry about Caleb’s health, but I try to live every day for today and not tomorrow. I think back on everything we went through, and if I were given the opportunity to do it all again, knowing what I know now, I would do it all again without changing a thing.

My “heart baby” has given me a new purpose to life and a new joy I never expected. I’ve met amazing heart families and doctors who have given me hope and strength, as well as lifelong friendships that mean the world to me.

Right now, Caleb is in his crib babbling away and saying “mamamamama.” It just feels right hearing that from my little miracle. Nothing can compete with that. He is doing amazing! He’s walking, talking and eating like a champ (the feeding tube was taken out in November 2010).

We have another surgery soon (the Fontan procedure) and possibly, one day, even a heart transplant. But I know now, I can handle this, and more importantly, so can Caleb. This “mom” thanks the wonderful people at Shands who did, and continue to, go above and beyond for us We have an amazing team and support system around us that really makes a world of difference.  Thank you for giving me Caleb back to me.

Saturday, October 29, 2011

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.


Tuesday, September 6, 2011

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.  

Friday, July 22, 2011

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!



Friday, July 15, 2011

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

Monday, May 16, 2011

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.


Tuesday, April 26, 2011

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.

 ***********************************************************************

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. 

video

Monday, April 25, 2011

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.

Wednesday, March 16, 2011

Those Massey Boys

I stepped away from my desk for a few minutes. When I came back to my computer, this picture was up on my screen. I LOVE this photo. I love these boys. Kyle, Kasey and Kevin are the sweetest, craziest, funniest boys. They have big, generous, loving hearts. 

They're known around these parts as "The Massey Boys." Kyle, Kasey and Kevin are almost 17. All three were born with serious, life-threatening congenital heart defects. Their parents, Keith and Elaine, did not know before their triplets were born that they had tetralogy of Fallot, a group of four congenital heart defects -- pulmonary stenosis, overriding aorta, ventricular septal defect and right ventricular hypertrophy.

The Massey Triplets were born in South Georgia and airlifted to Shands Children's Hospital in Gainesville, Florida. Shands/Children's Miracle Network keeps their story, along with an adorable picture of the triplets as toddlers. The doctors at the University of Florida have written about them; I mean, they're identical triplets with nearly identical heart defects. How often does that happen anyway?

Imagine that. Imagine raising identical triplet boys who have nearly identical heart defects. Triple the worries. Triple the anxieties. Triple the surgeries. And? Triple the victories. Triple the accomplishments. Triple the laughter. Triple the joys.

Those Massey Boys fight, they pick on each other, they joke and they play pranks. They laugh and take care of each other. They're talkative and delightfully noisy. Keith and Elaine have raised rambunctious, goofy, thoughtful, loving kids. And they've done it with amazing grace, calm and composure. The boys -- the family -- are involved in their school, their church, their local community, and the congenital heart community. They are proud, confident young men. They're so good to our younger heart heroes.

Every time I see this photo, this is what I think about. Thank you, Kyle, Kevin and Kasey, for being you. Thank you, Keith and Elaine, for sharing them with us.

Friday, February 25, 2011

McKenzie's Lesson: Make the Most of Every Moment

By Jennifer Bailey 
 
Three years ago we were blessed with the best gift of all. We were given a beautiful little girl. She weighed 7 pounds, 11 ounces and was 21 inches long. Feb. 25 is McKenzie’s 3rd birthday and even though she is not here to celebrate, we are still celebrating her life and the time we had with her.

We are so happy to have had 25 months with her. She smiled and was happy more than you could imagine and dealt with every medical issue like it didn’t even bother her, playing and smiling through them all.

She loved her birthday parties, which we held on the 25th of every month. She loved seeing the people come see her and especially the balloons! McKenzie loved balloons! She loved to play with them and hit them and listen to the sound they made.

As we celebrate her 3rd birthday we ask you all to take a moment and think of her. Think of something you remember about her -- her smile, her big eyes, anything, even if it is just knowing her through her pictures and following her story. Her story has touched so many lives and we ask you all today to remember her story.

Remember her fight and her lessons she taught all of us: Make the most out of every day you have, remember we are only guaranteed this moment. Nothing is for sure for the future, so make the most out of every moment you do have.

Friday, February 11, 2011

Congenital Heart Disease Books -- SWIM: A Memoir of Survival

By Karen Thurston Chavez

I confess: when I first opened up SWIM: A Memoir of Survival, Bill Coon's self-published journal about his heart and kidney transplants, I was skeptical. 

But then. Well, damn.

Bill’s memoir is raw, stark, brutal and stunning. His story is remarkable, mind-blowing and incredibly inspiring. 

Today, it seems like everyone is described as heroic, inspirational, courageous, a true wonder. Bill really is.

He was born in 1989 with hypoplastic left heart syndrome (HLHS) – the left half of his heart was severely underdeveloped. Back then, the survival rate for babies with HLHS was near zero.

Some babies (even back then) had the option of undergoing a three-stage surgical repair (Norwood procedure almost immediately after birth; Glenn procedure at 3 to 6 months of age; and the Fontan procedure at 3 to 5 years of age). But Bill was too sick. His only chance of survival was a heart transplant. The same day his parents were considering taking him off life support, a heart that matched became available.

When Bill had his heart transplant at 3 weeks old in May 1989, he was only the fourth infant to have a transplant in the Midwest, and only the eighth baby in the nation to undergo a heart transplant. Except for his first 21 days of life, Bill has never lived with his own heart.

In the world of congenital heart disease, Bill is a major piece of history, of victory.
I don’t have any first-hand, personal experience with transplants. Through my work with Broken Hearts, though, I have come to know many adults and children who are transplant survivors. I’ve watched families wait days for the right match, and watched as others waited weeks, months, a year. A family I know left the hospital without their teenage daughter; she died eight months into her rocky, painful and courageous wait.

No one I know has ever painted the wait for transplant a fun, pain-free picture. But neither have they illustrated it as darkly or as deeply as Bill’s portrait.

The book’s opening summarizes Bill’s childhood.

“I lived a pretty sheltered childhood up until I was 5 years old,” Bill says. His transplant medications made his immune system weak. “I have no memories as a kid of ever leaving my house at all.”

But Bill had three cousins and his younger and older siblings as playmates, and he describes his childhood as “colorful, carefree and filled with ignorant bliss.”

Life was good … until his sophomore year of college. He began experiencing wrenching pains in his abdomen, struggled to breathe and was exhausted most of the time. Finally, on June 7, 2009, he couldn’t ignore his symptoms any longer and his mother took him to the emergency room.

“My life of good fortune and ignorant bliss had come to an abrupt end,” Bill says. “I didn’t know it then but my journey had just begun. I was about to enter the darkest period of my life; a period in which I experience a great deal of pain, heartache, depression, anger and sorrow.”

And that’s where his story really begins. 

This is not a book Bill sat down afterward and wrote, rewrote, polished and sanitized. It’s his personal journal, written along the way, in the moment. Moments when he was grateful, angry, bitter, happy, determined, sad, willful, groggy, drugged -- and that might cover just one day. 

Bill’s depictions are gripping and painful, and they're often laugh-out-loud funny. No matter his mood or condition, his feelings and thoughts are compelling. 

If you want to know Bill's story, and you do, you'll have to read his book.

Learn more and connect with Bill Coon:

Monday, February 7, 2011

This one's for you, Steve!

Steve Catoe
The Funky Heart
As Congenital Heart Defect Awareness Week (Feb. 7-14) gets off to roaring start, we're missing more than ever, one of our most influential, level-headed, just-the-facts-and-get-them-straight-please, beloved congenital heart advocates, Steve Catoe, affectionately known as The Funky Heart.

Among his countless posts that inspired and educated us, Steve also loved taking songs and rewriting their lyrics to include something about congenital heart disease. One of his last renditions was "South Bound and Down," about attending a HeartWalk in Atlanta. He wrote a number of others, including "Saving Grace," "The Way It Is," and "CHD in the USA." He used names of songs or lines from lyrics in his headlines or to lead off his blog posts.

In Steve’s spirit and to remember him this special week, we’ve taken the popular Christmas song, “It’s the Most Wonderful Time of the Year,” (here's the tune) and done something Steve might have done this week — rewritten the lyrics for CHD Awareness Week!

Here’s to you, Steve!
(To the tune of “It’s the Most Wonderful Time of the Year” by Andy Williams)
It’s the most wonderful week of the year.
With our kids boist’risly yelling,
And everyone telling you,
“Just be a dear,
“And spread CHD stories all the year.”

It’s the most – most vital week of them all
With those CHD messages and advocate meetings
When friends are on call
It’s the most-most vital week of them all.

There’ll be parties for vic’tries,
Lighting candles for memories, and
Telling our stories on shows
There’ll be scary heart stories
And tales of our glories of
Triumphs we’ve made as we go.

It's the most wonderful week of the year
There’ll be reasons for sharing
Our hearts we’ll be baring
For our loved ones so dear
It's the most – most heard week of the year!

It’s the most wonderful week of the year.
With our kids boist’risly yelling,
And everyone telling you,
“Just be a dear,
“And spread CHD stories all the year.”

Friday, February 4, 2011

Congenital Heart Disease

It’s the Most Wonderful Time of the Year!
To Raise Awareness of Congenital Heart Defects/Disease

So many great congenital-heart-defect awareness-raising things are happening here in Tallahassee this week and next week!

Tonight at 11 p.m. — immediately following Barbara Walter’s special, “A Matter of Life and Death,” at 10 p.m. on your local ABC channel — one of Broken Hearts’ very own, Ramsey Brown, will be featured on a segment our local ABC affiliate, WTXL.

Ramsey a few days post transplant.
Who looks that great after transplant?
Ramsey does!
Ramsey will share her story about growing up with congenital heart disease and her recent heart transplant at Shands at the University of Florida.

On Sunday, WTXL will interview Broken Hearts about its upcoming Open House on Tuesday, Feb. 8. Join us for our Open House and learn more about congenital heart disease, available resources for families and about Broken Hearts! Since its inception in June 2006, Broken Hearts has grown from its two founding families to more than 150 families across Florida, South Georgia and a few spots across North America. (Come over to Facebook and LIKE us!)


What events do you have going on during this Most Wonderful Time of the Year?! Tell us about them in the comments section below.

You know, as excited as we are about all that’s going on, we are missing more than ever one of our most influential congenital heart advocates, Steve Catoe — our Funky Heart. In Steve’s spirit and in his honor, we’ve taken the popular Christmas song, “It’s the Most Wonderful Time of the Year,” (I’m sending you to a neat video, featuring the original song.) and done something Steve used to love doing — rewriting the lyrics to make them CHD/heart-related!

Here’s to you, Steve!
(To the tune of “It’s the Most Wonderful Time of the Year” by Andy Williams)
It’s the most wonderful week of the year.
With our kids boist’risly yelling,
And everyone telling you,
“Just be a dear,
“And spread CHD stories all the year.”

It’s the most – most vital week of them all
With those CHD messages and advocate meetings
When friends are on call
It’s the most-most vital week of them all.

There’ll be parties for vic’tries,
Lighting candles for memories, and
Telling our stories on shows
There’ll be scary heart stories
And tales of our glories of
Triumphs we’ve made as we go.

It's the most wonderful week of the year
There’ll be reasons for sharing
Our hearts we’ll be baring
For our loved ones so dear
It's the most – most heard week of the year!

It’s the most wonderful week of the year.
With our kids boist’risly yelling,
And everyone telling you,
“Just be a dear,
“And spread CHD stories all the year.”