Special People, Special Moments

Check out the newest edition of Patients for a Moment, the blog carnival by and about the folks who aren’t carrying a stethoscope!

As soon as Christmas is over, I’ll turn my full attention to preparing for the Regional Congenital Heart Defect (CHD) Forum sponsored by Broken Hearts of the Big Bend.  The forum is going to be held in Tallahassee, Florida, on February 13, 2010. I’ll get to meet with a group of Cardiac Kids, some Heart Warriors, and most importantly, a lot of Heart Moms and Heart Dads.

Heart Moms and Heart Dads are a special breed of people. Things were going wonderfully, then suddenly a doctor took them aside and said “We think there might be a problem with your child’s heart…” and everything changed. The ground began to crumble under their feet, and all their dreams suddenly became a nightmare. Something is wrong with our baby, and for all anyone knows, it just… happened. Nothing we could have done to stop it or prevent it.

Some families crack under the pressure. Now you have a sick child and a broken family; a double tragedy. And in some families…

… in some families, the parents-to-be come closer together. Mom’s maternal instinct kicks into warp drive; she’s going to protect her child with every weapon she has. She’ll ask questions until the doctor screams for mercy and dispute any advice that doesn’t seem right. The quiet, unassuming woman you married will get in the face of anyone who doesn’t seem to be acting in her child’s best interest. Heart Moms develop iron wills – they will go to the ends of the earth for their child, and if that’s not far enough they’ll tie a rope and drag the earth with them.

A dad’s job is to protect and to care for his family. A Heart Dad realizes that through no fault of his own, he has failed that task. He also realizes that he can’t fix this problem – yes, that is part of his job, but for most of us, precision cardiac surgery is not something we know how to do.

So a Heart Dad accepts the fact that he has to find someone else to do his job for him – and men (especially fathers) don’t do that very well. But Heart Dads put their pride on hold and dedicate themselves to one task: getting their child safely to the help that they need. Maybe it’s not such a “manly” thing to do to ask for help, but they do it. And then our couple learns all about how time moves slowly in a waiting room, how the battle is fought day by day (and sometimes hour by hour) and that sometimes the good guys don’t win.

I love people like that, and I love meeting them. Because as hard as they’ve fought, there is still a seed of doubt in their minds: Will my child make it? What kind of life is he going to have? What’s going to happen to them when I am gone? Most of the Heart Parents I have met are young – in their 30’s, at most. They’re still learning, and things may be OK right now, but they’ll be fighting this battle all their lives.

I don’t claim to be an “inspirational speaker” and I am learning right along with everyone else at the CHD conferences I’ve attended. But maybe I can say something – or just introduce myself as a 43-year-old CHD survivor – and it will all fall into place. With good medical care and a little good fortune, your child can grow up and live a normal life.

I was sitting in my pediatric cardiologist’s office – trying to fit into one of those little chairs – when the man sitting next to me said “So… I guess you’re just here to pick up a prescription for your child?” Without really thinking about it I said “No, I’m the patient; just waiting for my appointment.” And I literally saw his face change as all his dreams about his child were reborn.

Moments like that are awesome.


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10 Responses to “Special People, Special Moments”

  1. Joye Says:


    I love this! You have such a way with words, which I first learned at the Duke Symposium back in July. Would you mind if I re-posted this on my blog?

  2. Sarah Says:

    Steve, your blog entry just brought me to tears. Not tears of sadness but tears that oh my gosh THAT is how I feel and with out knowing it I am that Heart Mom. You are amazing and I truly appreciate all you do for CHD. I am so happy you are a survivor and can help us new to this.

    Merry Christmas and God Bless you!
    Mommy to Trevor-Truncus Arteriosus

  3. Special People, Special Moments by Steve | Trevor's Allstars Says:

    […] https://tricuspid.wordpress.com/2009/12/17/special-people-special-moments/#comment-1800 Posted by Sarah Trevor Subscribe to RSS feed […]

  4. Shannon Carter Says:

    I missed this one yesterday, but am so glad I went back. This brought me to tears too. Being a Heart Mom is the most difficult thing I’ve ever done…and I know it will never get any easier.

    Like most heart parents, I love to see/read about/talk to adult “heart babies.” It gives hope, and sometimes almost allows those fears to subside for a (fraction of a) second, and know that Derrick has a chance to grow up and have a “normal” adult life too.

    Thank you so much for all you share. You have no idea how much comfort you bring (and knowledge too). Derrick is going Wednesday for a heart cath to determine a surgery date, and it’s an emotional time. You’ll never know how perfect the timing of your words are sometimes.


  5. Katie Says:

    Ditto! You’re such an inspiration to us Steve. Thanks for sharing your thoughts and giving us hope. When people ask us “how long” can Maddie live with her heart, I usually refer them to you…”funky heart guy” as I call you. Thanks for putting so much time and effort into educating and counseling us all!

  6. Catherine Says:

    Thank you so much for all that you do. I love reading your blog and you certainly give me hope. I’m a mother of a child who has HRHS and you certainly know how to describe a “heart mom” and “heart dad”. I hope that you have a very Merry Christmas.

  7. kelly Says:

    thanks for giving us so much love Steve. Your parents deserve lots of credit for obviously doing so well! They raised a good one!

  8. Grand Rounds Vol 6, No. 19 | A Groundhog's Perspective on Med Blogs | More iPad Says:

    […] Funky Heart blog talks about being an adult survivor of childhood heart disease.  He sees how just his existence is an encouragement to parents of kids with heart disease.  Very true […]

  9. Melissa Says:

    This is beautiful!!!! Thank you for sharing.

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