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    A Life Put on Hold
    A Life Put on Hold
    A Life Put on Hold
    Ebook120 pages1 hour

    A Life Put on Hold

    By Evie Rosen

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    About this ebook

    From the time her son, Seth was born Evie Rosen knew something was different about her child. He didn’t seem to be developing along the same lines as other children his age. When she asked the doctors about it, they told her she was just being a nervous, first-time parent, that her child was perfectly healthy. Soon she began to believe it herself. A Life Put on Hold is about the Rosen’s family journey, from Seth’s early misdiagnoses to his eventual brain surgery at age 14, and the subsequent side effects and related emotional issues, as seen through his mother’s eyes. This book will resonate with families of special needs children who at one time or another have experienced feelings of loneliness, alienation and loss.To aid parents in their quest to help their child and find the light at the end of what can sometimes be a very long tunnel, Rosen has provided a resource list at the back of the book. She also invites parents to submit resources and to share their stories with her.This is a must-read for anyone who has a special needs child or knows someone who does.

    LanguageEnglish
    PublisherEvie Rosen
    Release dateJun 5, 2014
    ISBN9781310902529
    A Life Put on Hold
    Author

    Evie Rosen

    Evie Rosen is a freelance writer who works for various organizations and companies targeting their communications and articles to specific audiences. She has been married to Jack for nearly 26 years and is active in her community. Their son Seth is now 23 years old.

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      Book preview

      A Life Put on Hold - Evie Rosen

      A Life Put on Hold

      My Son’s Journey with Brain Injury and the Lessons I’ve Learned Along the Way

      Copyright 2014 Evie Rosen

      Published by Evie Rosen at Smashwords

      All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system without prior written consent from the publisher.

      Cover Design: Judy Robitschek, robi-chex graphic design + production

      Dedication

      This book is dedicated to the two people in my life who are my heroes: my mother and my son. I witnessed both experience tremendous pain, anger, confusion and depression.

      I saw my mother, consumed with cancer, valiantly battle on and finally succumb to her disease. She was so brave. Even when she was sick, she was concerned about her family and friends.

      I watched my son as he was overtaken with progressively insidious headaches, which were replaced after surgery with hallucinations, anxiety, paranoia and more, then struggle for years with cognitive delays, memory loss and a great deal of fear.

      They both loved both me unconditionally, faults and all. I will always cherish the life lessons they have taught me and the abundance of love they have shown me.

      Preface

      Becoming a parent opened up a world to me filled with much joy, sorrow, and some very unexpected and amazing experiences. Each served as a stepping-stone on our journey as a family.

      Throughout it all, I’ve learned many lessons as a mother, a woman, a daughter and a friend, some of which I will share with you in the following pages, and some that I will keep close in my heart forever.

      This is really my son Seth’s story, as seen through my eyes as his mother, his protector and his advocate. It is the story of his journey with a rare vascular brain disorder known as Moyamoya, which put his life and ours on hold for several years. This potentially life-threatening disease progressively restricts blood flow to the brain by constricting a carotid artery. In my son’s case, this artery was located in his left temporal lobe. The disorder and its post-surgical side effects profoundly affected my son’s life. Included in this is the transformation my husband and I went through during this period of time, because when a family member experiences a trauma it does not just affect their life; it affects the lives of those around him.

      Seth’s story began in 2005, but only now do I have the emotional strength and the time needed to compose everything. His story is more complete now, as well, as his condition has improved, and he has been able to begin to move on with his life. He has some challenges, but every day brings new hope and accomplishments.

      In an effort to help other families going through similar situations, I have included resources at the end of this book that I hope will prove useful. When I was going through everything with Seth, I received little, if any, guidance from the school system, the medical profession or county and state agencies. I often felt like a blind man trying to find my way through a maze.

      I hope that Seth’s story will be inspirational and helpful to other families who are going through similar crises, and will serve as a reminder that there really is a light at the end of the tunnel, no matter how long and dark it seems.

      During our family journey both of my parents passed away; their loss was more than I thought I could endure. But I found that I am much stronger than I had presumed. I will always treasure the wisdom they passed down to me.

      I also discovered that sharing Seth’s story with others created new opportunities that brought renewed hope to my son’s future and ours as a family.

      Over the course of the last several years, I have been introduced to our less-than-accommodating mental health system, learned a bit about how psychiatric care facilities function, and have had interactions with county and state agencies that deal with developmental delays and the court system. Through it all I have learned many lessons, some ending with victories and others in defeat, but lessons nonetheless.

      I have chosen not to mention where we live to protect my son’s identity. I have given him, my husband and myself fictitious names and have not named his physicians, therapists or the hospitals he was in. As I said earlier, I did this primarily to protect my son’s identity, but in the larger scheme of things, none of these specifics matter. Families cope with these devastating events on a daily basis all around the world.

      My aim with this book is to share my family’s experience and how it has shaped our lives during the past several years.

      To find out more about A Life Put on Hold, visit alifeputonhold.com.

      Contents

      Dedication

      Preface

      Chapter 1—When You Least Expect Something to Happen, It Does

      Chapter 2—Listen to Your Gut…It’s Always Right

      Chapter 3—When Things Sound Too Good to Be True, They Usually Are

      Chapter 4—Was It My Fault? I Thought It Was

      Chapter 5—There are Times When You Have to Bring an Expert into the Mix

      Chapter 6—Choosing the Lesser of Two Evils May Be the Only Choice You Have

      Chapter 7—Schools Often Offer an Education You Don’t Want or Need

      Chapter 8—Change Happens Rapidly, So Enjoy the Moments While You Can

      Chapter 9—The Other Shoe Does Eventually Drop

      Chapter 10—Hearing Unusual Words Can Be Unsettling

      Chapter 11—Life Can Sometimes Be a Bowlful of Cherry Pits

      Chapter 12—Things Can Get Much, Much Worse

      Chapter 13—Our School System Was Beyond Broken; It Was Hallucinatory

      Chapter 14—Be Careful How You Phrase Things

      Chapter 15—When Things Aren’t a Perfect Fit, You Have to Make Do

      Chapter 16—Everyone Asks the Question, But Not Everyone Wants to Hear the Answer

      Chapter 17—Sometimes Putting a Bandage on a Problem is the Only Thing You Can Do

      Chapter 18—Never Judge a Book by Its Cover

      Chapter 19—Vacations Don’t Last Forever

      Chapter 20—New Beginnings Can Be Chaotic

      Chapter 21—The Last Straw Didn’t Break the Camel’s Back…It Broke My Heart

      Chapter 22—The Patients are Running the Asylum

      Chapter 23—Miracles Do Happen…I Witnessed One Myself

      Chapter 24—Loss Comes in Many Shapes and Sizes

      Chapter 25—You Learn Something New Everyday

      Chapter 26—The Final Hurdle is a Bi**h

      Epilogue

      Acknowledgments

      Resources for Families

      About the Author

      Chapter 1

      When You Least Expect Something to Happen, It Does

      January 2013—I gazed in awe at my son as he stood in his graduation gown with an enormous smile plastered on his face. His classmates cheered him on as he, the lone graduate, received his high school diploma. He seemed so confident, so proud of himself, as he strode across the room in his green cap and gown (his favorite color) and took his seat on the stage. I beamed with pride.

      His teacher stood on stage by the lectern. As he began talking about Seth, he suddenly became choked up with pride, noting that although he had only known Seth for a short time, he had been impressed by the measure of his achievements. He said he had never seen someone get so much work done in such a short period of time. My son had completed Algebra, Geometry, World History and some English courses in just five months.

      As I watched Seth on the stage, my mind flooded with images of the past 22 years. His early years, when he was picked on by classmates for being different, abandoned by the few friends he did have, and then lost something even more precious: his self-worth and self-esteem. He…we…had been through so much over the last several years. There were times that I doubted this day would ever arrive. I didn’t even want to consider that he might one day have an honest-to-goodness high school diploma. But I never told him that.

      If you’re a parent, you understand what an accomplishment graduation is for any child. But if you’re the parent of a child who has a brain injury or cognitive challenge, then you realize just what a phenomenal day this was for my son.

      Following Seth’s corrective brain surgery for Moyamoya disease in 2005, he experienced some cognitive delay and short-term memory loss, as well as visual and auditory hallucinations, which impeded his learning. We were warned that these were some of the consequences that could follow this type of surgery, but we never guessed he would exhibit all of them, how severe they would be.

      Every day was a struggle for him, whether it was trying to stay awake in class, focus on what was being said or going through a terrible time without the comfort of friends. He had given up on himself and any

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