The Heart of a Heart Warrior Volume Three: Congenital Heart Defect Stories of Hope

By Anna Marie Jaworski, Megan Jane Tones and Paula M Miller

This is an anthology of stories, poems, and artwork by people born with congenital heart defects (CHDs). These authors share their stories of hope on several themes. This volume includes the following themes: Works of Art, Heart Warrior Authors, and Beyond My CHD. Since CHDs are the #1 birth defect around the world, people across the globe are l

• Language: English
• Publisher: Baby Hearts Press
• Release date: Jan 5, 2024
• ISBN: 9781962310086

Anna Marie Jaworski

Anna Marie Jaworski is a heart mom, author, publisher, and podcast host. This book is the third book in a series of books she has edited. Anna edited and contributed to "The Heart of a Mother" which is an anthology of stories by 62 women affected by congenital heart defects (CHDs). Anna and her father, Bob Daigneault, edited "The Heart of a Father" as the second book in their series. The anthology is a compilation of essays by 50 men affected by CHDs. A number of the contributors to the second book were married to contributors in the first book. In this book, "The Heart of a Heart Warrior," Anna has teamed up with Megan Tones to highlight essays, poems, and art contributed by adults who were born with CHDs. Several of the contributors had parents who wrote for a book in this series.Anna became a published author when she had an article published in "Critical Care Nurse" about being a parent in the ICU. Anna, the wife of an ICU nurse, grew to have a new appreciation for her husband's profession after living in the ICU with their critically ill son. Anna felt sharing her experience would be helpful for nurses.Shortly after the article was published in the nursing journal, Anna self-published her first book, "Hypoplastic Left Heart Syndrome: A Handbook for Parents." Because she was unable to find a publisher for such a specialized book in the 1990s, Frank and Anna Jaworski founded Baby Hearts Press, a publishing company devoted to publishing resources for the CHD community. Anna's second book was "My Brother Needs an Operation," her first children's book and was the story of her heart-healthy son while his baby brother had surgery.Anna Jaworski has also been published in two medical textbooks about hypoplastic left heart syndrome, several magazines and newspapers, and some e-zines. She is a strong advocate for the CHD community and has been a public speaker across North America at CHD conferences and events. In her spare time, Anna enjoys Toastmasters, traveling, gardening, and reading, especially to her granddaughter.

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Anna Jaworski

Megan Tones

Baby Hearts Press

Temple, Texas

Published by:

Baby Hearts Press

3910 Sierra Blanca Blvd.

Temple, TX 76502-1662 U.S.A.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording by any other information storage and retrieval system without the prior permission of the Copyright owner except for the inclusion of brief quotations in a review.

© by Anna Marie Jaworski

First Printing 2023

Overworld Reprinted with permission from Megan Tones. Overworld was first published in Masques, edited by Gillian Polack and Scott Hopkins (2009, CSFG Publishing).

Excerpt from From Vulnerable to Victorious reprinted by permission from Tori Joy Geiger. From Vulnerable to Victorious was published by Tori Joy Geiger, LLC in 2021.

Excerpt from The Hearts of a Girl reprinted by permission from Jessica Carmel. The Hearts of a Girl was published by Morgan James Publishing in 2016.

Library of Congress Cataloguing-in-Publication Data Jaworski, Anna Marie

The Heart of a Heart Warrior / by Anna Marie Jaworski and Megan Tones

Congenital heart disease in adults  I. Title

Heart–Diseases

Children–Diseases

Library of Congress Control Number: 2023933336

Publisher’s Cataloging-in -Publication Data

Names: Jaworski, Anna Marie, editor. | Tones, Megan, editor.

Title: The heart of a heart warrior : congenital heart defect stories of hope / Anna Marie Jaworski and Megan Tones.

Description: Temple, TX : Baby Hearts Press, 2023. | Includes index. | Includes 72 photos. | Summary: A collection of personal narratives from people impacted by congenital heart defects.

Identifiers: LCCN 2023948702 | ISBN 978-1-962310-079 (pbk.) | ISBN 978-1-962310-08-6 (ebook)

Subjects: LCSH: Chronically ill – Biography. | Congenital heart disease – Patients – Biography. | Heart diseases – Patients – Biography. | Pediatric cardiology. 

| BISAC: BIOGRAPHY & AUTOBIOGRAPHY / Medical. | HEALTH & FITNESS / Diseases & Conditions / Heart. | SELF-HELP / Motivational & Inspirational.

Classification: LCC RB156 H47 2023 | DDC 616.1/087--dc23

LC record available at https://lccn.loc.gov/2023933336

Warning–Disclaimer

T

his book is not intended to be medical advice. Medical information described in this book is solely for illustrative purposes.

This book is not intended to be a text for medical treatment of children with congenital heart defects (CHDs). Parents should consult with medical personnel whenever they feel compelled, regardless of what is written in this book.

The areas of pediatric cardiology and congenital heart disease are ever changing. This book has reported some adults’ past experiences. For a more in-depth analysis of treatments of CHDs, the reader is encouraged to visit the library or conduct an online search in relevant medical journals.

Every effort has been made to ensure this book is as accurate as possible; however, there may be mistakes, both typographically and in content. Consequently, this book should not be used to define medical treatment for any child or adult. Many of these stories are written from adult heart warriors’ memories of what happened to them many years ago or what their parents remember. These people may have been in shock when given certain medical information, thus there may be inaccuracies. These contributors have taken great pains to write with as much accuracy as possible.

The purpose of this book is to inspire others. The authors and Baby Hearts Press shall have neither liability nor responsibility to any person or entity with respect to any loss or damage caused, or alleged to be caused, directly or indirectly by the information contained in this book.

DEDICATION

M

egan and I would like to dedicate this book to all the wonderful people who contributed to the book and whose legacy are the words and stories they have left behind so that we might better understand them. We especially lovingly dedicate this book in memory of Karen Klein McNulty, Julie Kerr, Becca Atherton, David Franco, and Travis Martin, contributors we lost before the book was published, and to all who have loved them. We also dedicate this book to the entire congenital heart disease community. It is an honor to be part of this special group.

I also dedicate this book to my own heart warrior, to my heart- healthy son, and to my husband, who is everything to me. AMJ

I would like to dedicate this book to those who listened to me and helped save my life over the years - my mum and dad, who must have felt like they were raising an alien at times, my brothers, husband, and extended family, and of course, all the medical professionals.

MJT

Table of Contents

Warning–Disclaimer

DEDICATION

FOREWORD

PREFACE

ACKNOWLEDGMENTS

INTRODUCTION

Transformation

CHAPTER 8: WORKS OF ART

Ferret Artwork by Julie Kerr

Light of Love by Lisa Colvil

Art by Karen Klein

Falling Apart by Lisa Colvil

Overworld by Megan Tones

A Moment of Rapture with Jacqueline du Pré by Julie Kerr

CHAPTER 9: HEART WARRIOR AUTHORS

Excerpt from: From Vulnerable to Victorious by Tori Geiger

Abridged Excerpt from:  The Hearts of a Girl by Jessica Carmel

You Should Write a Book by Kimberly Russell

Full Circle by Brandon Lane Phillips, MD

CHAPTER 10: BEYOND MY CHD

A Letter to My Younger Self by Emily Falcon

Exceeding Expectations by Michelle DeRoo

Over 50 Years Living with a Single Ventricle: What I Have Learned by Allison Holmes

CONCLUSION

FOREWORD

B

orn in 1951 with Tetralogy of Fallot in an age where open-heart surgery didn’t exist, I grew up thinking I was the only little girl and later woman who had been through what I had been through.  I eventually had surgery to repair my defects and went on to live my life. I never talked about my heart; I hid my scars; and I ignored abnormal rhythm symptoms. I didn’t know anyone else who was like me. Although I had met other kids with congenital heart defects (CHDs) during hospitalizations for my childhood surgeries, those connections didn’t last. 

Fast forward to 1998 or 1999 and like so many adults living with congenital heart disease (CHD), I was looking for someone like me.  I knew I couldn’t be the only one alive who was born with a heart defect. I also knew I couldn’t be the only person with CHD who was having health issues (even though I thought and acted like there was nothing physically wrong with me).  There had to be someone out there who understood me. 

It was the beginning of the internet and AOL chat rooms.

I ventured into one of them that was titled something like Adult Congenital Heart Disease. This was exactly what I was looking for—someone like me.  What I actually found was the Adult Congenital Heart Association (ACHA).  In fact, two of the young people I chatted with were the founders, Karen Klein McNulty and Anthony Cordaro, Jr. What a vision they had! And what a turn my life was about to take!  I have never looked back. The trajectory of my life and my health changed for