Presenting our 21st warrior, Steve!

I have to keep adding that exclamation point at the end of these titles. How come? In my head and heart, every single name reflects a warrior who is either still fighting, or has fought the good fight. If I could put each name in blinking lights and in neon, I would. Each name is celebrated over here at Queen of Hearts. Each name means a story and name that deserves to be shouted at the top of our lungs.

Steve is one of those stories and names.

Back in 2007, I had a blog called “The Bent Bunch” or something of that nature. I only say that because the name changed. I started it in 2005 as homage to our firstborn, James. Then we had Natalie, the blog name changed again and I really lost track of the title changes. Still fresh from our newly diagnosed newborn girl as having half of a heart, I wrote a little about my feelings coping with it. Most importantly, updates of Natalie’s (almost) daily and weekly doctor visits, weigh-ins and pulse ox checks, so family and friends could catch up and we could minimize our phone calls and focus on keeping our daughter stable. The blog, by a huge distance, was never a big read in the blogosphere. But any followers we gained were an immense gain to me. But, we lost readers and comments when I broke out the news about Natalie’s “special heart” in May of 2007. It’s expected. People freeze up and aren’t sure what to say. So they give distance when the distance wasn’t necessary. All purely innocent and  you can’t take it personally. But moving forward, we gained some new followers of Natalie’s story when she was an infant. The very first CHD-related connection our family made was with Steve.

Steve Catoe left a comment on one of the Bent blog, reaching out to our family with support and advice. I was so preoccupied with our life handling a sick infant and active, healthy toddler that I took a little time finding out who this Steve was. How did he know what he was talking about? Who is he? How is he so awesome? I was in for a real treat. Not only did Steve share the exact same defects as our daughter, but he received open heart surgery and treatment for quite some time at Johns Hopkins Hospital in Baltimore- the hospital who cared for Natalie’s heart for almost 2 years. We walked the same halls at Hopkins that Steve walked. We felt the same feelings Steve’s parents felt. It’s incredible.

Steve Catoe began blogging in 2008 at Adventures of a Funky Heart. He made a huge imprint in the Adult Congenital Heart community, as well as the CHD community as a whole. He wore many hats- warrior, survivor, friend, advocate, supporter, blogger, and the list goes on and on and on. Every word he said or wrote was valued and still is to this day. He had a knack for taking huge medical terms and allowing all of us readers to understand every single bit. The impact is huge and it’s still felt in the community. His imprint will forever exist.

We were all incredibly blessed to have him.

On November 29th, 2010, while doing what he loved- writing at his computer, Steve suddenly passed away.

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Below are just a few of my personal favorite blog posts by Steve at Adventures of Funky Heart:

August 27th, 2010: When I’m Not the Funky Heart

“One of my Facebook friends is highly agitated… with good reason:

‘I’m SO sick of hearing “Aww so now are YOU the one with all the heart problems?” I mean HONESTLY…Do you people think that’s a nice thing to say? People don’t say that to cancer patients so why say it to us?’

Preach it!

Personally, I don’t mind talking about my heart. (Hey, I write about it every day!) But I do have a few pet peeves. There are times when I just want to be me. This is an invisible disability, after all, and occasionally I want to remain invisible. Just one of the group, nothing unusual about me. When I hang out with my friends here at home, I’m not the Funky Heart and the wordsCongenital Heart Defect rarely cross my lips.

Another major irritant is being introduced not as a person, but as a health issue. Don’t you dare. If you introduce someone as “having a heart problem”, you’ve marked them. You have defined them by their medical status, and placed them at a disadvantage. Certain segments of the population will see them as “less than”. And if the other person is a young lady that I might have an interest in… well, you just threw that opportunity out the window. I want her to get the chance to know me. There’s a lot more to me than just my heart. If things go well, I will be the one who decides when it is time to have The Big Discussion, not you.

And the younger you are, the worse it can be. It’s a delicate balance – Mom, I know that you are grateful that your child survived their heart defect and any related surgeries, but your 7-year-old really isn’t in a position to ask you to hush and just let him be a kid. This would be a very good time to sit down and have a good talk with your child, and learn what they think. Perhaps talking about their problems while he/she’s present makes them uncomfortable.

The worst thing I have ever seen is a mom who insisted that her child pull up his shirt and show off his scar. You could see that the child felt like a Show and Tell object…. and mom was oblivious to the entire thing.”

July 6th, 2010: You’ve Been Warned

“Hey Heart Defect! We need to have a talk.

Yeah, you and me – I just wanted to warn you that things are about to get ugly.

I have no idea why you chose me, and for quite a while now you’ve had your way. I’ve been pretty much at your mercy because I did know how to fight back.

I didn’t know that you could fight back. You had me convinced that I was one of just a few people who you picked on, and I just accepted it.

But I’ve learned better, and while you weren’t looking, I started paying attention.

I’ve stopped being the usual, run of the mill, Woe is me! sick guy. I’ve learned how to take care of myself. I learned how my heart is supposed to work, and what you’ve done to it. I’ve learned how it really works. I even read the medical literature. Dad-gum it, that was hard, but I’ve figured most of it out and I’ll Google what I don’t understand.

I’m no longer passive – I am an active, intelligent, involved patient. I don’t just sit quietly and fill my prescriptions; I ask questions, I learn, and I follow up on important things. I do what I have to do to keep you under control. I found a really good Cardiologist, and not only do I have him on my side, I’ve got his partner, a bunch of good nurses, and a whole freakin’ hospital backing me up.  Anytime you want to cause trouble, you’re gonna meet my crew. And we ain’t going to fight fair.

And from now on we’re going to be playing by my rules.”

June 15th, 2010: The Funky Heart’s Rules

“Fans of the TV show NCIS are familiar with “Gibbs’ Rules“, a series of life lessons condensed into short phrases by Team Leader Jethro Gibbs. The Funky Heart also has a basic set of principles.

1) Never take from the Congenital Heart Defect (CHD) community; only give. This one should be a no-brainer. Unless they are lucky enough to be well off, Heart Families have to burn through a lot of their resources in order to help their Cardiac Kid. Medical staff, ICU, drugs, equipment, hotel for mom and dad… all this costs a lot of money. And a CHDer who doesn’t take prescription drugs is a rare thing. In case you haven’t noticed, drugs can be expensive.

CHD Support Groups are also financially strapped.  Most have razor-thin budgets and are barely making it themselves – especially in this economy. If they are lucky enough to generate any revenue, the odds are that money is reinvested in the organization. So I can’t in good conscience take money from these people or organizations – they need every bit of it. When I am invited to attend a CHD conference, I personally pay for my own airfare and my hotel room. My family has been just where these families have been: stretching that dollar until it breaks.

2) It’s not about Awareness. Think about it – most of the readers of this blog are already painfully aware of Congenital Heart Defects. Rather than being about awareness, Adventures of a Funky Heart! tries to focus on CHD Education: Can my child live a productive life? My child has an oxygen saturation of 87%, is this normal? Is Hypoplastic Right Heart Syndrome a defect? I answer these questions by writing about the latest research, new Congenital Cardiac Technology, and stories from my life and the lives of other CHDers I know.

3) NEVER lie. Don’t believe me? If I’m giving you a report or other information, the statements I make are backed up by a link, like this one:The sun rises in the East. You don’t have to believe me, but you can read for yourself and see why I think the way I do. Not that long ago I was accused of using “scare tactics” after I wrote a post listing the side effects of Amiodarone. But I had links to other articles and to a blog written by an Electrophysiologist (a doctor who would normally prescribe Amiodarone) and I stand behind every word of that post.

4) Always be positive. Despite the high survival rate for some heart defectsand the declining mortality of CHDs, deaths due to a heart defect still occur. Each one is tragic, a life cut much too short. I do my best to project a positive attitude – you can do it, you’re strong, just hang on. You’re going to get through this. And while I do discuss death when necessary (Jim Wong,Eliza Huff, and Gracie)  I don’t dwell on bad outcomes. Especially in a crisis, that’s not what a mother needs to hear all the time.

5) Be there. Sometimes all you can do is spend time in a waiting room, or just sit and listen (or read an email) as someone pours their heart out to you.”

 May 16th, 2010: George“My friend George spoke at the recent Lobby Day event in Washington DC. I wish all of you had been there to hear him.Like many of us there, George has a Congenital Heart Defect (CHD). His defect is Tetralogy of Fallot (ToF) and he is a retired Pathologist from out West. That’s right – a retired Pathologist. I’m not going to insult him by listing his true age, but George worked a full career with a major heart defect.He’s quiet and unassuming, probably the result of his years in the medical field. Pathology is a very scientific branch of Medicine; attention to detail is a must and you do not jump to conclusions. So when George stood up to speak, I wasn’t expecting what came next.

Long story short: George tore the house down! He stated that he had recently celebrated a birthday and then he said;

“I firmly believe that one day those of us with heart defects will routinely live to be eighty, ninety, and even one hundred years old.”

That did it for me right there. I’m 43 years old, but I’m 42 years, 7 months past my “expected” life expectancy. And here’s a respected member of the CHD community, a retired scientist, saying that he thinks that one day we’ll live a good long time? And might even hit the century mark? And all we have to do to start down this path is obtain funding for the Congenital Heart Futures Act? Right then, I was ready to walk down to the Capitol (Three blocks away), climb the dome, and rip that statue right off the roof!

George also has a very dry wit; he can tell a joke with such a deadpan expression that you don’t even realize he’s joking. But his humor can bite, as he proved when he recalled an exchange from his younger days.

“When I attended medical school they taught me that people like you didn’t make it,’ a doctor told me. I didn’t know what to make of that so I didn’t say anything.”

People like you? Wait a minute… that includes me!

“A few moments later the doctor asked me `Have you thought about which medical school you would like to attend?’ I answered, `Not the one that you attended.’”

You tell ‘em, George!”

And may I say? Our family has had the utmost pleasure to meet George last year while volunteering for the Congenital Heart Walk with The Children Heart Foundation, last summer in Aurora. We love you George!

Here is a really wonderful clip of Steve sharing his (very moving) story a few years back at the Regional Forum of Congenital Heart Disease. Please please watch it. IT’S SO WORTH IT..

Rest in Peace, Steve. We love you forever and your Funky Heart, too.

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