The Heart of a Heart Warrior Volume One Survival: Congenital Heart Defect Stories of Hope

By Anna Marie Jaworski, Megan Jane Tones and Corinne Smorra

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: Growing Up with Congenital Heart Defects, How My CHD Defines Me, Being Active with CHD, and CHDs Around the Globe. Since CHDs are the #1 b

• Language: English
• Publisher: Baby Hearts Press
• Release date: Dec 1, 2023
• ISBN: 9781962310024

Book preview

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

Michael’s Poem reprinted with permission from The Mended Hearts, Inc.

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: 2023946656

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 2023933336 | ISBN 978-1-962310-00-0 (pbk.) | ISBN 978-1-962310-02-4 (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.

I am a Miracle Child

by Becca Atherton

I am a miracle child

Struggling the first months of my life

Given a 13% chance of survival to the

age of five Today I am 17

I am a miracle child

Life-saving battle scars adorn my body

Changing my shirt, I see the bright pink

scar running down my chest

Always a reminder of my yearning for life

I am a miracle child

Fear is part of me

I am afraid when my heart skips a beat

I fear being in the hospital

Alone . . .

In pain . . .

I cry at the very thought

I fear dying

I am a miracle child

I know I am not like most

Valuing life

I celebrate the morning

I appreciate those who love me

And know

Every day truly is a gift

I am a miracle child

Being a miracle child

Is . . . Frightening,

Is . . . Celebrating,

Is . . . Accepting,

Is . . . Appreciating,

Is . . . My life

I am a miracle child

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

FOREWORD

PREFACE

ACKNOWLEDGMENTS

INTRODUCTION

Survival

CHAPTER 1: GROWING UP WITH CONGENITAL HEART DEFECTS

It Takes a Child by Laura Ryan

A Soul Unbroken by Jeni Busta

Picasso by Megan Tones

Michael’s Poem by Michael McKelvey

I am Different by Dajah Scrivner

Voiceless by Tyler Šajdák

CHAPTER 2: HOW MY CHD DEFINES ME

Not a Heart Warrior by Hope Jaworski

How My CHD Defines Me by Jason Crutchley

Finding Myself Through Service to Others by Christy Sillman, NP

CHAPTER 3: BEING ACTIVE WITH CHD

For the Love of Exercise by Lorrie Hill

Feeling Normal Through Sports by Michael Hills

Journal Entries by Alicia Lynch

Journey to Egypt by Megan Tones

CHAPTER 4: CHDS AROUND THE GLOBE

Find Your Fierce by Amy M. Le

Healing by Ellen Banoub

Little Star of Bethlehem by Belen Blanton

CONCLUSION

COLOPHON

FOREWORD

M

y name is Dr. Corinne Smorra. I am a licensed clinical social worker specializing in working with those impacted by congenital heart disease (CHD). I was born with truncus arteriosus. I have spent every day of my life as a CHD patient, but the last several years working to help those who have been affected by this condition. As a counselor, I work to provide the support, understanding, and most appropriate psychosocial interventions for people born with heart disease–an invisible birth defect that affects them far beyond the confines of their hearts.

My friend Belen Blanton, who you will meet in this book (Volume 1), introduced me to Anna. She knew Anna Jaworski through her podcast, Heart to Heart with Anna, which has been running since 2013. Anna not only has a child with CHD, but has also edited the first two books in this series, The Heart of a Mother, and The Heart of a Father.

Anna and I first met on the phone. There was an electric charge between us as we shared our mutual passion of wanting to contribute to the benefit of the CHD community. Anna and Megan have spent the last four years working on this book of essays written by those who have been born with CHD. They have done an amazing job compiling and editing the authors’ stories