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    Into the Fire: The Life, Love, and Revelation of Dragon Parenting
    Into the Fire: The Life, Love, and Revelation of Dragon Parenting
    Into the Fire: The Life, Love, and Revelation of Dragon Parenting
    Ebook77 pages1 hour

    Into the Fire: The Life, Love, and Revelation of Dragon Parenting

    By Deborah Ackerman

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    About this ebook

    Parenting, no matter where or how you live, is a difficult journey. The path with each child is never the same as someone else’s. Every style of parenting is unique and brings a different perspective to the table. But there’s one form of parenting that has yet to see the spotlight. It hides in plain sight, but burns with the intensity of a thousand suns. It’s time to shed some light on these powerful beings in all their wonder! Into the Fire: The Life, Love, and Revelation of Dragon Parenting is a personal testimony of life as a dragon through the eyes of a rare disease parent. Deborah’s heart and soul was fire-breathed into this book to: • Serve as a guide to those who have been placed on the path of rare disease parenthood. • Give family and friends a deeper understanding of what life is like for these parents, helping them learn to better communicate and interact with their loved one. • Destroy the fear of approaching or befriending these beautiful parents and their children.
    LanguageEnglish
    PublisherLulu Publishing Services
    Release dateSep 26, 2019
    ISBN9781684703265
    Into the Fire: The Life, Love, and Revelation of Dragon Parenting

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      Book preview

      Into the Fire - Deborah Ackerman

      Ackerman

      Copyright © 2019 Deborah Ackerman.

      All rights reserved. No part of this book may be reproduced, stored, or transmitted by any means—whether auditory, graphic, mechanical, or electronic—without written permission of the author, except in the case of brief excerpts used in critical articles and reviews. Unauthorized reproduction of any part of this work is illegal and is punishable by law.

      ISBN: 978-1-6847-0325-8 (sc)

      ISBN: 978-1-6847-0767-6 (hc)

      ISBN: 978-1-6847-0326-5 (e)

      Library of Congress Control Number: 2019911238

      Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

      Any people depicted in stock imagery provided by Getty Images are models, and such images are being used for illustrative purposes only.

      Certain stock imagery © Getty Images.

      Lulu Publishing Services rev. date: 09/10/2019

      To my husband, Casey, and our beautiful children, Luke, Montana, and Isaiah. I wouldn’t be who I am without them. I also want to thank my family and friends for the support through the flames of my dragon journey. Most of all, I want to thank the Lord; without Him, none of this would have been possible.

      Dragons are mysterious—part of their mystique lies in the fact that are essentially aloof and unknowable to human minds.

      —Doug Niles, Dragons: The Myths, Legends, and Lore

      MotherandChild.jpg

      Introduction

      Dragons in folklore and fairy tales are referred to as creatures that are hidden and isolated from the rest of the world. More often than not, these beasts are known only to exist through rumor or by those who dare to search them out. This is reflected much the same when it comes to those who parent terminal children. The term dragon parent came to be by Emily Rapp, writer of Notes from a Dragon Mom. She describes her walk on this journey with her son, Ronan, who had Tay-Sachs disease. It’s often a club that no one knows exists until they uncover a dragon or become one. My experience in this is the latter.

      What feels like an eternity ago now, I was a parent of what I thought were three seemingly normal children. Luke is my oldest son, Montana is my middle daughter, and Isaiah is my baby and troublemaker. Life had had its up and downs with what the doctors called development delay at the time, but all was well as far as we knew. Over the course of four and a half years, my husband and I had been searching for answers about Luke’s development. He developed quickly and was able to walk and talk at a normal age. Problem was, he was progressively starting to go backward, and his skills were slipping away. Numerous tests were conducted and lots of heads were put together, but all they could tell us was that they knew nothing about what was happening to our son. Just make him comfortable, I was recommended. All the while, I continued to watch my sweet boy slowly slip away from me. It wasn’t until I vented to a moms’ group on Facebook that I was pointed into the right direction. A woman suggested checking for Batten disease. I immediately went to Luke’s primary doctor to ask for him to be tested, by which he replied that he had no idea what I was talking about. I contacted the neurologist, who was happy to test him for Batten—and for the entire category of enzyme-deficient diseases.

      On December 15, 2013, a week after Luke’s sixth birthday, I got the call. My husband was working out of town, and my in-laws had taken my children to spend the day with them. I remember pacing back and forth in the bedroom of our old townhouse and hearing the cracking in the doctor’s voice as he read the results back: Luke has tested positive for GM1 gangliosidosis type 2.

      He explained it as a neurological degenerative condition that makes Luke lack the enzymes to destroy lactic acid in his cells, so they are destroyed. It starts out at the brain stem, works its way through the spinal cord, and eventually begins to weaken and destroy body function altogether. I was then informed that the life span is shortened to no more than ten years of age, and then he apologized for the tragic news. If there were ever a moment in time when you could hear your own heart breaking, this was it. One phone call forced me to destroy any dream or imagination I had for my son. One test told me I wouldn’t have a future with him. The one answer I was searching for so desperately brought forth more than I had ever bargained for. The worst part? I was about to gain more answers to questions I didn’t know existed.

      In the weeks to come, I would find out that Isaiah was also affected by this dreaded disease and that Montana was a carrier of it. Isaiah (who was three years old) had seemed virtually untouched by this condition. We had almost thought that the doctor was misled in some way. It wasn’t until around Easter of 2014 that the symptoms began to take hold. I had taken Luke and gone to the National Tay-Sachs and Allied Diseases (NTSAD) Family Conference in Atlanta. It was an incredibly informative and emotional weekend full of children and parents who were fighting or had fought this disease or similar diseases. I came home to my normal Isaiah, but days later, he stopped walking altogether. Months later, on our Make-A-Wish trip celebrating his fourth birthday, Isaiah began to have grand mal seizures—a decline that had taken his brother a year and a half to get to.

      The disease plagued both my boys in a different manner as far as onset went. Luke’s was a gradual slope that set in over the course of years. Isaiah had an avalanche of symptoms and issues

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