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.

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:

• His book is on Amazon. 
• Great story, featuring Bill.
• Find Bill on Facebook.
• Twitter @thebillcoon.

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.”

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.”

A Cure for Heart Defects

Before his unexpected death on Nov. 29, Adventures of a Funky Heart author Steve Catoe wrote about making a plan to cure heart defects. As we close out 2010 and open 2011, I can't think of a sweeter wish, a better challenge, a greater goal. Here's a link over to Steve's blog.

Here's to a successful, productive and Happy New Year!

We Pray for Children ...

In June 2009, Broken Hearts of the Big Bend held a gathering in Tallahassee called “Unite for Eliza.” We gathered to pray for the life of Eliza Huff, who was then awaiting a double-lung/heart transplant at Shands Children’s Hospital. At the request of Eliza’s mother, Sara, Eliza’s Aunt Mindy (Sara’s sister) read this poem at our gathering. 

That was the thing about Sara and Eliza, and their family. No matter what was going on, it seemed, they were always watching out and praying for others in trying or tragic circumstances and situations. I can say that about so many of our parents, and especially Sharon, Jennifer and Ashley, Dawn and Tim, KimH. They, including Sara, still reach out to others in need. 

Eliza died Dec. 26, 2009 after long, hard-fought battle for her life. I still pray for Eliza. And, I Pray for Children. This poem has stayed with me ...

We Pray for Children . . .

By Ina J. Hughes

We pray for children

    who sneak popsicles before supper,

    who erase holes in math workbooks,

    who can never find their shoes.

And we pray, for those

    who stare at photographers from behind barbed wire,

    who can’t bound down the street in a new pair of sneakers,

    who never “counted potatoes,”

    who are born in places where we wouldn’t be caught dead,

    who never go to the circus,

    who live in an X-rated world.

We pray for children

    who bring us sticky kisses and fistfuls of dandelions,

    who hug us in a hurry and forget their lunch money.

And we pray for those

    who never get dessert,

    who have no safe blanket to drag behind them,

    who watch their parents watch them die,

    who can’t find any bread to steal,

    who don’t have any rooms to clean up,

    whose pictures aren’t on anybody’s dresser,

    whose monsters are real.

We pray for children

    who spend all their allowance before Tuesday,

    who throw tantrums in the grocery store and pick at their food,

    who like ghost stories,

    who shove dirty clothes under the bed,

    and never rinse out the tub,

    who get visits from the tooth fairy,

    who don’t like to be kissed in front of the carpool,

    who squirm in church or temple and scream in the phone,

    whose tears we sometimes laugh at

    and whose smiles can make us cry.

And we pray for those

    whose nightmares come in the daytime,

    who will eat anything,

    who have never seen a dentist,

    who aren’t spoiled by anybody,

    who go to bed hungry and cry themselves to sleep,

    who live and move, but have no being.

We pray for children

    who want to be carried and for those who must,

    for those we never give up on

    and for those who don’t get a second chance.

    for those we smother . . .

    and for those who will grab the hand of anybody

    kind enough to offer it.

Scents and Memories

By Kim Rooks

Kim and Taylor after one of Taylor's
open-heart surgeries.

I think it’s interesting how a scent can take you back to the very day when you first smelled it, and how you can remember exactly what you were doing that day.

I washed my hands at the Shands cardiology clinic the other day and the soap is the same as one I used almost nine years ago, when I had to wash my hands before I could go see my baby girl for the first time in the Shands Level III Neonatal Intensive Care Unit. Taylor was 6 pounds, 9 ounces, with a heart rate of 60. 

Who knew the road we have traveled would bring fear, sadness, frustration, confusion and happiness. But most of all, it has brought family and friends closer, and introduced me to people I would never have met if we didn’t travel this road.

Taylor with her pediatric cardiologist, F. Jay Fricker.

Recently, our pediatric cardiologist, Dr. Jay Fricker, said something I thought I would never hear. 

In the past, he has said he doesn’t know what Taylor’s future holds. But that day, he said he thinks Taylor will be fine, and the only issue we will have to deal with is with her pacemakers. 

I'm so happy for our baby steps of miracles that she has had in her life. God makes things happen for a reason and we will never know why.

Kim Rooks is the mother of Taylor, who is now 9 years old. Kim is co-founder and co-executive director of Broken Hearts of the Big Bend. By day, she works with the Greater Southeast Affiliate of the American Heart Association. By evening, she is an independent consultant for several product lines. Taylor was born with congenitally corrected transposition of the greater arteries (meaning not only were her greater arteries reversed, but her ventricles were, too), a large ventricular septal defect and complete heart block. By the time she was 5 months old, she’d had a double-arterial switch, her VSD closed, and a pacemaker implanted. In all, Taylor has had more than 10 heart surgeries in her life, including two open-heart procedures. Today, she is thriving.