Difficult Blessings

By Lori Heaton

"Take Maddie home and make her comfortable for whatever time she has left." Maddie's parents were hearing these words from the doctor after their four-year-old daughter was diagnosed with pulmonary arterial hypertension, an incurable life-threatening disease. It was 1997, when there were very few options other than a lung transplant to treat Maddie's disease. Because her parents were unwilling to accept this fate for their daughter, they ended up at the Children's Hospital in Denver, Colorado. Maddie became one of the early pioneers of pulmonary arterial hypertension in the late 1990s when research was just beginning to develop therapies that were an alternative to lung transplantation; treatments that provided hope! This true and inspiring story chronicles Maddie's twenty-year journey of courage and strength. Maddie was an example of determination to all who knew her. Even people who had never met Maddie were inspired by her story. Maddie not only battled pulmonary arterial hypertension, but at the age of six she was diagnosed with acute lymphocytic leukemia. Maddie conquered cancer and lived on to receive two separate lung transplants. Although this is a book about an amazing girl who rose above her adversity to live a full and happy life, it is also a book about discovery. This is a mother's story of how her daughters pain and suffering became vehicles for uncovering her own inner strength and for learning valuable life lessons. The wisdom learned in these hard-gained lessons is what she calls "difficult blessings."

• Language: English
• Publisher: Christian Faith Publishing, Inc.
• Release date: Dec 21, 2018
• ISBN: 9781643496351

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Difficult Blessings

Lori Heaton

ISBN 978-1-64349-634-4 (Paperback)

ISBN 978-1-64349-635-1 (Digital)

Copyright © 2018 by Lori Heaton

All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods without the prior written permission of the publisher. For permission requests, solicit the publisher via the address below.

Christian Faith Publishing, Inc.

832 Park Avenue

Meadville, PA 16335

www.christianfaithpublishing.com

Printed in the United States of America

Table of Contents

Chapter 1

Chapter 2

Chapter 3

Chapter 4

Chapter 5

Chapter 6

Chapter 7

Chapter 8

Chapter 9

Chapter 10

Chapter 11

Chapter 12

Chapter 13

Chapter 14

Chapter 15

Chapter 16

Chapter 17

Chapter 18

Chapter 19

Chapter 20

For Madison with love

To know even one life has breathed easier because you have lived. This is to have succeeded.

—Ralph Waldo Emerson

Preface

Many people who know Maddie and her story have often told me that I should write a book. The idea of writing a book is a daunting thing. I wondered if anyone would care what I had to say. Would Maddie’s story sound inconceivable? Would I leave myself emotionally vulnerable by becoming open and transparent on a subject that sometimes is intensely private? But if the truth be told, writing a book has been a tiny seedling idea, germinating in the back of my brain for a long time. But the timing was never right. I had to work up the courage to write it. For the longest time, I could not see the whole situation clearly because I was too focused on the small details of caring for Maddie. It’s only with hindsight that I can see things for what they truly are. I am now able to view this experience from a distance with some maturity and perspective, because I have learned the lessons contained within it.

Initially, this book was intended to read as a biography, the true and sometimes unbelievable story of Madison Heaton’s life. Somewhere along the way it began to evolve into something more. It became more about me and what I have learned through this incredible journey. I then realized this book and my reasons for writing it were much bigger than Maddie or me. This book is about anyone who has faced adversity in their life and is willing to be a better person because of it. Adversity is more than dealing with problems; it’s learning about what is inside you and who you truly are. That is why I share Maddie’s story with you now.

While I was writing this book, Maddie passed away, and everything I had written up to that point sounded like a lie. I felt like a hypocrite. How could I speak of blessings when I felt cheated by her death? How could I write about valuable lessons when her death felt like too great of a burden to bear? I had to step away from this project to prevent my grief from tainting my words. I needed the passage of time to soften the edges of my pain and bring back the perspective I felt when I first started writing this book. I needed to remember all the many tender mercies, miracles, and manifestations of God’s hand that I had witnessed throughout Maddie’s life. I needed to recall all the lives Maddie had touched. I needed to understand that Maddie had fulfilled all she had come to this life to do. Her broken mortal body was now a hindrance to her spiritual evolution.

To pick up where I had left off after Maddie’s death was a double-edged sword. I found myself smiling through tears as I relived so many moments in my life that included Maddie. That unsettling tug at my heart, the mix of conflicting emotions was a bittersweet experience.

Most of us acknowledge the blessings we receive and are thankful for them. When blessings are borne of adversity, they can be a little harder to recognize. Have you heard the saying Sometimes things in life have to fall apart before better things can fall together? This has proven true time after time with our family. I have learned that what I perceived to be something bad has led me down a path to something good.

I believe we are eternal beings. Our mortal birth was not our beginning and our mortal death will not be our end. This belief has colored everything I have experienced with Maddie and everything I share with you in this book. Before we were born we existed as intelligent spirits. We dwelled in a pre-mortal existence. It was a place of unconditional love and tranquility. It was a wondrous place where there was no sorrow or pain. But because there was no opposition, it limited our spiritual growth. We could not reach our full spiritual potential in our heavenly home. So our Heavenly Father created an earth where we would gain a physical body. We would experience joy and heartache, success, and failure. We would have free will to make our own choices and experience the consequences of those choices. Our choices, both good and bad would shape our eternal character. This mortality would be a classroom where we controlled our destiny by our willingness to learn and grow from our experiences. Some experiences we chose and some we did not. But we could choose how we responded to the earthly challenges we would face. We could face our adversities with anger, allowing our resentment to impede our progress, or we could gain wisdom from them. That is why I believe that all things happen for our greater good. I have to believe this, otherwise Maddie’s suffering would have served no purpose. Everything we experience in this life is blessings given to us to learn from. The wisdom learned in these hard-gained lessons is what I like to call Difficult Blessings.

Difficult Blessing 1

Maddie’s Illness Saved Our Family!

The strength of a family, like an army,

lies in its loyalty to each other.

—Mario Puzo

But surgery will cure her right? She just needs an operation to make her feel better! I can still hear myself saying these words as my husband and I sat in front of the pediatric cardiologist at Primary Children’s Hospital in Salt Lake City, Utah. Dr. Ronald Day was in the unfortunate position to impart the devastating news to us. Dr. Day is the director of the Pulmonary Vascular Disease Program at Primary Children’s Medical Center. Dr. Day is a kind man with children of his own, so I know it was with empathy and compassion that he bore his bad news. No, Mrs. Heaton, Madison’s condition is incurable. The only treatment is a lung transplant, which I don’t recommend. Take her home and make her life as pleasant as possible, for whatever time she has left. My ears were hearing the words but my mind was spinning! My forehead had broken into a cold sweat, my heart was racing—no, my heart was breaking! I looked over at my husband, Randy; he appeared dumbfounded. He started to cough, clear his throat, and blink his eyes, and then his shoulders began to shake. This big, tough guy that I married was sobbing. I was in shock and denial! I had worked as an oncology nurse for many years, so I was all too familiar with the stages of grief. I was experiencing the first stage of grief: denial.

At that most surreal moment in time, nothing made sense; all the hopes, dreams, and expectations I had for Maddie’s life were shattered when the doctor uttered Maddie’s diagnosis. Maddie was diagnosed with Eisenmenger’s syndrome and pulmonary arterial hypertension (PAH). Maddie was four years old when we were told that she had a life-limiting disease for which there was no cure. As I am sure most of you have not heard of Eisenmenger’s syndrome or pulmonary arterial hypertension, I will give you the crash course version:

Eisenmenger’s syndrome is a complication of a heart defect that you’re born with (congenital). A heart defect that causes a hole (shunt) to develop between two chambers of the heart. In Maddie’s case, the hole was between the two upper chambers (atria) of the heart, also known as an atrial septal defect (ASD). Up until this time, we had no idea that Maddie was living with a large hole in her heart. This hole caused blood to circulate abnormally in her heart and lungs. Because pressures in the left side of the heart are normally greater than those in the right side of the heart, a hole between the atria will cause blood to flow from the left side of the heart into the right side. This extra blood flow causes increased pressure in the blood vessels of the lungs (pulmonary arterial hypertension). The blood vessels in the lungs then become stiff and narrow, increasing the pressure in the lungs even more. Just as muscle becomes larger from resistance training, the heart becomes enlarged because it has to pump against resistance (high pressure) in the lungs. If you are a weight lifter, resistance training is a good thing because of the resulting increase in muscle mass. But when the heart becomes enlarged, it loses the ability to pump efficiently.

Eisenmenger’s syndrome occurs when the increased pressure of the blood flow in the lungs becomes so great that the direction of blood flow through the shunt (hole) reverses. Oxygen-poor (blue) blood from the right side of the heart flows into the left side of the heart and is pumped to the body. This results in the body not receiving enough oxygen. Did you get all that? Don’t worry, you won’t be tested on it! The bottom line was this: my baby had a very serious life-threatening condition that has no cure and if left untreated is fatal.

In 1997 there were limited treatment options for pulmonary arterial hypertension. So you are probably asking yourself, why didn’t they patch the hole in her heart? It’s done all the time, right? Yes, I did ask that! The doctor explained to me that the hole in her heart was acting like a pop off valve for the right side of the heart, relieving the high pressure and preventing heart failure.

The ironic thing is we were somewhat familiar with the term pulmonary arterial hypertension. Several months before Maddie’s diagnosis, pulmonary arterial hypertension was receiving a lot of media attention. It was discovered that the drug combination Fenfluramine/Phentermine (Fen-Phen), used as an appetite suppressant, was associated with an increased risk of developing PAH. Of course, the legal community saw this as an opportunity to profit from bad drug lawsuits. Many law firms were offering free echocardiograms to those who had taken Phen-Fen, in hopes of ferreting out a possible lawsuit. Because Randy was among those who had taken the drug, he did the echocardiogram. The results turned out to be normal. In a freaky twist of fate, after Maddie’s death, Randy did indeed develop PAH! Pulmonary arterial hypertension is a disease that affects one in a million people. PAH is progressive, life-threatening, and incurable. Little did we know that after that day in 1997, our lives would be forever changed. Let’s stop right here so that I can explain to you how we got to be sitting with the pediatric cardiologist having a discussion that no parent wants to have, ever!

Our daughter Madison Heaton was born on November 11, 1992, at 11:20 p.m. This date and time was significant because not only was it Madison’s grand entrance into this world and into our hearts, but because of the recurring number eleven. November 11 is also Veterans Day. How fitting that my little warrior was born on this day! She would fight for her life every day thereafter. Ever since Maddie’s birth it seemed that the number eleven kept appearing in our lives. Whenever Randy or I would