Overwhelmed to Empowered

Jillian Theorgood

Description

You have been blessed with child with unique needs. It can be overwhelming. Empower yourself with resources and education. Be your child's advocate.

When your child is born with a congenital or chronic illness, your life changes forever; it’s easy to become overwhelmed. When you’re the first or only one in the family with a child with their condition, you begin to feel a loneliness and separation you don’t think others can relate to. To add to your sense of desperation, you’re inundated with specialists, appointments, treatment plans, a plethora of medications, and required follow up visits.

In Overwhelmed to Empowered, author Jillian Theorgood shares her experiences and lessons learned to show you’re not alone and that you, too, can shake the feeling of being overwhelmed and embrace the sentiment of being empowered. She includes a log to facilitate the tracking of vital information such as family history, immunizations, diagnosis, medications, customizable data tracking logs, and scheduling assistance.

Overwhelmed to Empowered offers a resource that becomes your personal assistant, helping you advocate for and be the voice for your child in your interactions throughout the journey.

Sujets

• Congenital disorder
• Self-help

Informations

• Publié par: Archway Publishing
• Date de parution: 30 août 2022
• Nombre de lectures: 0
• EAN13: 9781665726696
• Langue: English
• Poids de l'ouvrage: 1 Mo

Extrait

Overwhelmed to EMPOWERED
Lessons Learned in Caring for a Child with a Congenital Illness
Jillian Theorgood


Copyright © 2022 Jillian Theorgood.
 
All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.
 
 
 
Archway Publishing
1663 Liberty Drive
Bloomington, IN 47403
www.archwaypublishing.com
844-669-3957
 
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.
 
Scripture quotations taken from The Holy Bible, New International Version® NIV® Copyright © 1973 1978 1984 2011 by Biblica, Inc. TM. Used by permission. All rights reserved worldwide.
 
ISBN: 978-1-6657-2668-9 (sc)
ISBN: 978-1-6657-2667-2 (hc)
ISBN: 978-1-6657-2669-6 (e)
 
Library of Congress Control Number: 2022912493
 
 
 
Archway Publishing rev. date: 08/23/2022
CONTENTS
Preface
Introduction
 
1 The Journey
2 My Village
3 Lessons Learned
4 A Word from Delmar Jr. (DJ)
5 The DELMAR Log
PREFACE
This book and log are dedicated to my son, Delmar Davis Jr., for being so strong for so long and going through things that I cannot even imagine going through. Delmar (DJ) was born with a congenital heart disease called tetralogy of Fallot (TOF) and has survived five major surgeries and countless procedures and cauterizations. Despite it all, he has always had the best personality, loving nature, and generous smile. As his health improved, he participated in sports and had a very active social life. Delmar is now a graduate of West Chester University and a certified personal trainer.
It is easy to become overwhelmed and even easier to give up. Don’t take the easy route. Make the harder route easier to navigate. Embrace your journey by taking one step at a time and empower yourself with knowledge, patience, and faith. There are other people who have been through what you are going through or are going to go through. It is not a sign of weakness to reach out to them for advice and/or collaboration. Take the time to look to your left and to your right. You will see a sea of people who can support you during your journey, if only you reach out for help. And above all, be positive and believe in the deepest parts of your being that you will be OK, your child will be OK, and your family will be OK.
INTRODUCTION
We have all heard the saying, “If I knew then what I know now …” That is exactly the sentiment that led to the creation of this book. Additionally, I was encouraged to write this book by family, friends, and doctors who witnessed firsthand how I embraced my new challenge. Over the years, I have learned so much, interviewed so many doctors, and created tools and spreadsheets to stay organized to get me through the day. I am ready to give you all the knowledge and tools that have helped me survive. I know beyond a shadow of a doubt that it will improve not only your life but also the life of your precious child or loved one.
When we bring our children into this world, there is no book that comes with them to help guide us through proper parenting techniques for this particular child. Consider this book a very small token in that direction, with the mere intention of helping you navigate the unknown world that you are now a part of. Tears and grief have their place, but you will have to replace them with knowledge and advocacy. This book is intended to encourage you to now embrace the role you must take on and recognize all the positive things that are still in your life, including your miracle baby.
Have you ever had a moment when you stared into the sky as if you could see through the clouds, desperately trying to see heaven to ask the question, “Why me, God? Why me ?” You feel so hopelessly alone even if the room is full of people. Words of comfort just seem to bounce off you, as if they were never offered. You are so full of grief and despair that you cannot remember the feelings of happiness you had before. You seriously feel that you will never experience that happiness again. How can you? Your heart is now so twisted and torn apart. I became engulfed in this grief and tried not to drown. For far too long, I would look at my baby and ask God, “Why do babies have to suffer? Why my baby? I’m a good girl. I didn’t smoke, drink, or take drugs. How could this happen?” Truth is that good and bad things happen to all of us and to the people we know. But what if we turned a bad situation into a good situation, just by thinking about it differently? I began to believe that what God gave me was one of his special angels to nurture and love. What if this is an honor not given to everyone, just us special moms. Maybe our gift is that we will be able to reach out to others and help them through their darkest hours. Look at how that changes the perspective.
1
THE JOURNEY
T he decision to have children is a life-changing choice. The decision to have children is very different from the decision to get pregnant. Pregnancy may be unplanned; the decision to give birth is what I am referring to.
As a young parent, I was unprepared for the depths and ways that having children would change my life. Like other young parents, I prayed for a beautiful child who would do marvelous things, like become the next president or a doctor. I never, in a million years, thought about praying for health because I was healthy. I didn’t smoke, didn’t drink while pregnant, and had no family history of children being born with chronic or congenital illnesses. So the day I gave birth to a chronically ill child, I was blindsided and initially in denial of his diagnosis. I had a lot to learn with no grace period.
I will never forget the day I gave birth to each of my sons. Each birth experience was a miracle that words cannot describe. However, the birth of my middle son was the miracle that would challenge me the most. My first birth was a planned cesarean section due to complications discovered in my third trimester. For my second son, I wanted to experience natural childbirth. Due to the nine years between my first and second pregnancy, I was granted the opportunity to try.
As I approached my due date, I began to have Braxton-Hicks contractions. Some people call these practice contractions because they feel so real, but they go away before producing a baby. When I passed my due date, I had more Braxton-Hicks contractions and went to the hospital, but as soon as the contractions went away, the hospital sent me home again. Finally, on November 11, when I was officially two weeks overdue, my husband and I went to the hospital for a stress test. I failed two out of three parts of the test and was about to be sent home. But one doctor did not agree with sending me home and decided to admit me to the hospital and induce my labor.
After twelve hours of induced labor and a body that was not cooperating beyond two centimeters, the same doctor came in and stated that every time I had a contraction, we were losing the baby’s heartbeat. He looked very concerned and asked if we would be open to a C-section. I quickly responded yes, if my contractions were hurting my baby.
The nurse came in and had a clipboard in her hand. She explained its contents and attempted to hand the clipboard to my husband. When she stated that there was a possibility that my child or I would need a blood transfusion due to the nature of a C-section, my husband withdrew his hand and stated that he could not sign it. I was lying there confused. The nurse asked if he was a Jehovah’s Witness. I said no, and he said yes. Really confused now, I asked what that had to do with this. The nurse explained that Jehovah’s Witnesses do not believe in blood transfusions and that if I lost too much blood, I could die. I could not believe what I was hearing. How could I not know that my husband was a part of a religion that believed in that? I didn’t have time to deal with the religious issue at this moment. My baby was suffering every time I had a contraction, and I needed this C-section for his survival and for mine. I signed the papers myself and asked if I could call for my mother to act as backup to sign any papers necessary, just in case I needed her. As soon as I signed the papers, I was rushed into surgery at 11:00 p.m. The delivery staff were in position, waiting for us. The anesthesiologist even had the needle in his hand, ready to give me a spinal tap. I did not have time to panic. Delmar was born eleven minutes after being wheeled into the room. Now that’s fast.
During the C-section, everything around me was happening so quickly. The spinal numbed my body from my shoulders down, so I lay there unable to move anything but my neck and head. I lifted my head periodically to try to see if I could see the baby or make sense of anything going on around me. It definitely felt like an out-of-body experience. Then I felt extreme pressure on my stomach like someone set a pile of books on my abdomen. And then I finally heard a single little cry from my baby. I looked over in the direction of the cry and caught a brief glimpse of a baby that looked blue,