Remembering the Funky Heart

My friend Steve died two years ago.  He was an inspiring man.   The picture below is me, Steve, and my good friend Dorothy who took up the reigns of my first nonprofit Hypoplastic Right Hearts, so I could start the CHF Colorado chapter.  This is part of my “crew” of pre-facebook heart friends when we convened in Texas in 2010 for Hearts ReUnited – a medical conference for hypoplastic right ventricle information.

Steve took a tumble at the airport on on his arrival in Houston and broke his arm and split his lip.  Yet, he still spoke, inspired, and amazed. The most inspiring thing about Steve is how much he admired and loved the kids he met – kids like the kid he was.  But he also told me how he was alone with his half-heart as a child and how the first person he met with CHD was another adult who didn’t want to talk about CHD.  It was like being in a secret club that they weren’t supposed to talk about.  Steve changed all that.

He changed it for himself, for his adult peers, for parents reaching out to be heard and to be heartened by hope, and he changed it for the kids.  Liam still has his wooden Heart Warriors nickle that Steve had made and handed out like communion wafers in a roll at Hearts Reunited.  I bet when he was a little boy in South Carolina that he would have never imagined that there were other kids just like him, yet there he was four months before he died, surrounded by people born with hypoplastic right hearts.  He even sat on a panel with two other adults just like him, born with a missing right ventricle.  But, really, no one was ever JUST like Steve.  He was one of a kind, and he is terribly, terribly missed.

I dedicated Heart Warriors, A Family Faces Congenital Heart Disease to Steve because I finished writing it the same time he died and because my publisher wanted to change the name of the book to Heart Warriors.  That was Steve’s phrase, he coined it – literally in the wooden nickles.  He was going to read the book.  I was about to send him a draft, but then he was gone.

Steve was amazing because he could, he did, and he was. He may have succumb to his heart defects, but his spirit was never broken.  He lived a full and amazing life, and though it ended too soon, he lived it out loud in vivid color. Everyone should be so blessed to live like that, to light life for other people, and to be so violently missed by masses of those who he touched with his words and wisdom.

I miss him yes, but I am so happy I knew him.  Steve’s mom and dad helped fund the Heart Warriors audio book, and 1/2 of all profits go directly to
CHD research – something Steve believed in fiercely.  I hope that I’ve honored my friend in the past two years and that I’ll keep honoring him in the years to come.  He changed the world, let’s not stop changing it. We may take a tumble, but we get up and we move forward – the way Steve did things. It’s the only way to live a life.

Steve’s work lives on in his blog – Adventures of A Funky Heart – stop by, read it, and relive some of Steve’s most inspiring ideas and observations.  It will do your heart good.


6 thoughts on “Remembering the Funky Heart

  1. Thank God for people like Steven in the world. You have done him proud Amanda, I wish I had got to meet him……..I think Katie would of loved to have met him too, they could of compared battle scars. He was a true Heart Warrior……..xxx

  2. Oh boy…crying again…remembering the intense sadness I felt when Steve died. I wish I had the chance to meet him, but I read each and every post and have re-read his blog so many times. He was and will always remain an inspiration to every heart family. If you talk to his parents…it would be great to have a book of his blog (I know there are a LOT of us that would buy it).

  3. Steve was the first adult CHD survivor who reached out to me. It was right around that same time I met Lauren (Bednarz). I remember him giving me advice about Natalie and it was great advice. He found us through our old blog. Definitely shedding tears for this amazing man.

  4. I can’t believe it’s been two years since Steve passed. I remember how much I learned from him – from medical information, to how to help my child (and myself) cope with CHD. Steve was funny, smart and wonderful. I’m sorry I never had the chance to meet him in person. I hope he knows what a positive impact he made on the CDH community. Thanks for honoring him in remembrance today, Amanda!

  5. Three very special and wonderful people in that photo. Steve is an inspiration to all of us…heart kids AND parents. So glad your book is dedicated to him.

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