Reaching for Heaven: Rebecca's Journey with Proteus Syndrome

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Overview

Reaching for Heaven chronicles Rebecca Browder's struggle with the Proteus syndrome, a condition that involves atypical growth of the bones, skin, head, and a variety of other symptoms. Rebecca is dedicated to learning as much as she can and to sharing a positive outlook on life through her faith in her Savior, Jesus Christ. She has learned to overcome overwhelming obstacles because of her malformation and medial disabilities manifested by the Proteus syndrome.

Rebecca seeks to ...

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Reaching for Heaven: Rebecca's Journey with Proteus Syndrome

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Overview

Reaching for Heaven chronicles Rebecca Browder's struggle with the Proteus syndrome, a condition that involves atypical growth of the bones, skin, head, and a variety of other symptoms. Rebecca is dedicated to learning as much as she can and to sharing a positive outlook on life through her faith in her Savior, Jesus Christ. She has learned to overcome overwhelming obstacles because of her malformation and medial disabilities manifested by the Proteus syndrome.

Rebecca seeks to reach out to others who may be struggling with a disability or with a challenging life. By letting people know that they are not alone, Rebecca believes she is fulfilling God's purpose for her. She believes that God doesn't take anything away from us to make us sad or hurt us, but rather to make us stronger so that we can reach out to others and treat them with loving kindness.

Rebecca's story is one of strength, challenges, and the understanding that God has something better in store for her. It has been challenging for her to go from being able to walk to being bed bound, but she understands that sometimes we have to accept the hardest things in life in order to receive better things in the future. Our faith and trust in God can carry us through our difficulties.

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Product Details

  • ISBN-13: 9781475928150
  • Publisher: iUniverse, Incorporated
  • Publication date: 6/12/2012
  • Pages: 108
  • Product dimensions: 5.50 (w) x 8.50 (h) x 0.38 (d)

Read an Excerpt

Reaching for Heaven

Rebecca's Journey with Proteus Syndrome
By Rebecca Lynn Browder Monica Dunnagan

iUniverse, Inc.

Copyright © 2012 Rebecca Browder with Monica Dunnagan
All right reserved.

ISBN: 978-1-4759-2814-3


Chapter One

This is Rebecca's story

My name is Rebecca Lynn Browder and I am going to share with you the story of my life. Before I continue with my story I must first describe to you my family members who make my life possible.

I reside with my mother and my father who work very hard to make sure that I am comfortable and receive the assistance that I need to survive. My fathers' name is Wesly Earl Browder and he works as a construction worker with F.H. Meyers. My mother is Christy Lynn Browder and she stays at home to care for me. We reside in a small town called Nicholson Mississippi. I am blessed to have such wonderful parents who have built their life unselfishly around my needs. I have one other sibling and her name is Jessica Maria Browder. Jessica is my older sister and she is my best friend. Jessica is now in her last year of college at the University of Southern Mississippi. I am very proud of Jessica and the fact that she will be graduating this year. I can not wait to attend her graduation ceremony. I am surrounded by family and friends, including my favorite teacher, who makes my life complete.

Before I begin to share more of my life with you I would like to share an example of my syndromes in hopes for you to build an image of my life style. These are explanations of how I perceive and understand my disabilities. We will begin with what I call my main syndrome.

Life with many Syndrome's

Rebecca's description of her Syndromes

Proteus Syndrome:

This occurs usually at the time of conception. The doctors tell me that everyone carries some type of malignant gene within their body. These genes may have the possibility of lying dormant and never surfacing, but there are chances that one of these genes can become a part of your future life. These genes can be passed on to the fetus once conception begins and this is what created my Proteus Syndrome. When this gene was passed on to me it caused pigment growth on one side of my body and what is called gigantism on the other side of my body. That is not to say that other forms can not take place. Sometimes these larger sizes can become mixed throughout your body, occurring on different parts of the body such as the legs, or arms. The bones that become affected can cause joints in your fingers, toes, knees and elbows to lock up being somewhat painful. Over time, people with Proteus syndrome can build a very high tolerance to pain. This would be due to the constant presences of pain that you might learn to live with. In other words once, your body learns to adapt to the constant change of your bone's your tolerance to pain builds allowing you to be able to function in light of the pain that your body is experiencing through the adjustments of the growing bones. The next disability that I have become accustom to would be Arnold Chari malformation of the body.

Arnold Chari Malformation:

Arnold Chari Malformation or "ACM" usually begins during the time that the fetus is beginning to grow. During this time the "brain stem" becomes connected to the spinal cord. When this occurs the brain fluids are forced into the spinal cord which may cause the spinal cord to practically split in half. Once this occurs the doctors may need to place a tube running from the base of the head down to the outer lining of the bladder. This procedure will allow the fluid to run down and be filter out through the urination process. The next disability that I have been diagnosed with would be Macune's Albright.

Macune's Albright:

This disability occurs when the body begins to grow. Normally the body grows at a progressive rate that may allow for proper nutrition to assist the body in a healthy form of growth. In my case the Macune's Albright syndrome causes the bones to grow at a very rapids speed which will not allow nutrition to keep up with the rate at which my bones began to grow. Thus causing a persons bones to actually grow faster and older than the persons age. I have not been told that there is a cause or a cure to stop this process from occurring, but it has become another process that I am forced to adapt to. Macune's Albright may however be different for different individuals. Some peoples bones will grow faster than others. For me, Rebecca, they tell me that my bones grow at the rate of seven months faster than the average person at my normal age range. I am very thankful that I have the slower portion of the Macune's Albright syndrome. I thank God for that one. Last but not least is the Nuro Fibrosis Dysphasia Disability:

Nuro Fibrosis Dysphasia:

Nuro Fibrosis Dysphasia is associated with the soft spot on the top of the babies head. Most all babies are born with a certain diameter of a soft spot on the tops of their little heads. For some babies this soft spot is bigger than others especially with babies that may be born prematurely. When babies are born prematurely like I was their soft spot may begin to close too early. When this happens the bones in the skull may become thicker than in normal birth babies. When the soft spot closes too early and the bones becomes thicker than normal it can cause deformities within the skull and the facial features. With today's technology cosmetic surgery can be preformed in order to reduce the appearance of these larger facial bones if necessary. When the bones of the facial area begin to grow larger than is normal it may also cause abnormal growth to the ear canal bones. This is what has happened to me. The bones in my ear canal continue to grow causing the opening in my ear canal to close up. Thus causing damage to my hearing abilities. The result of this growth can lead to serious infections and extreme headaches everyday. Alone I have experienced more than thirty surgery in order to correct my ears alone. The headaches still occur quite frequently and I have learned to depend on a hearing aid that is attached just above my right ear.

Life can be very discouraging with the names of these syndromes alone, but when you add all the symptoms together life can become very challenging. You might be asking yourself how all of these syndromes make me feel? To tell you the truth I have had to learn to live with them. They are a part of who I am how I live how I adapt to my world and how I feel on a daily basis. How do my syndrome conditions make me feel? The truth is I learn to live with them. I did not acquire all four of them at one time, which is most likely a blessing in itself. Proteus is my main syndrome, I was born with this one and the others, well they simply came along for the journey. Through my syndromes I have learned that there is nothing that I can do about what I was born with. I can not make them go away, but I can learn how to live my life in peace and become a positive role model for others. Sometimes we are handed challenges that we must learn how to live with. These challenges we come to know as things that we do not have the power to change, but we do have the power to choose how our life and our perceptions will evolve. When you realize that God gave you the disabilities for a reason, then you learn to find ways not only to accept them but how to teach others to accept their fate as well. I have learned that when I go to heaven I will then be able to rejoice with my Lord and spend the remainder of my journey in a perfect heavenly body. God made us the way we are for a reason. I believe that he did so in order to teach each and everyone of us to learn how to get alone, to be friends, and hopefully to rejoice together in his name.

Chapter Two

When Life Begins: A mother's endurance

I was born on October 25th 1991. Just a few days before Halloween. I was born with black hair and brown eyes.

It was one fall morning when my mother awoke with the feeling of going to the restroom to relieve herself. That morning would turn out to be something totally unexpected. While in the restroom my mother realized that she was bleeding way too much so she screamed out to my sister. My older sister Jessica was only three years old at that time and she was sitting on the living room couch watching her favorite cartoons. Toonies she would call them. Out of fear of loosing her unborn child my mother screamed out to my sister Jessica for help, but Jessica was way too young to understand what was going on. So Jessica yelled back in response to her mom, "I am watching my toonies mommy". As Gods miracles do happen the neighbors son had stopped by and knocked on our front door. Luckily my mother heard his knock and began to yell out for him to go and get his mother. Please my mother told him, go get your mother and hurry. The young boy did as he was told and soon his mother arrived. As she rushed to the door franticly she asked, what is wrong and my mother remember replying please help me I think I am losing my baby. When our neighbor came into the bathroom she saw that my mother was bleeding and thought to herself, what should I do next. Instinct told her to gab a stack of towels and get my mother cleaned up as best she could. It was not long after she arrived that she was able to get my mother into her car. There destination was the nearest hospital, time was urgent, but no one really imagined just how much time played into their hands. With the life of an unborn child at stake, no one really places a measure on their reaction time. They just react. With the extreme bleeding my mother was rushed to the hospital. There the nurses and the doctor continued in their efforts to stop the bleeding, but to no avail. The bleeding continued. They eventually told my mother, we have to deliver your baby or you both will die. Knowing that I would be delivered prematurely my mother tried to keep me in a little longer, but she had to finally decide to let them deliver me early. The time had come when they rolled my mother into the surgery room and delivered me by c-section. Soon enough I entered this world. I believe the worst part was the staples they used to close my mother back up. It took a little while before my mother was strong enough to see me. Bleeding as she did makes her a very weak person.

Mom was still in a hospital bed when they rolled her in to see me and she was only able to touch my chest. Soon after as she was able to see me, her new little girl, they had to rush me off to another hospital in efforts to improve my health. My mom remember that as they were taking me away she begin to cry and she remembered me crying as well. I was kept in the other hospital for at least six weeks unable to see my parents or my sister. It would be three long weeks before my mother was able to visit me in that other hospital. My mother had to heal as well.

When her health allowed her to travel my mother came to visit me and when she placed her fingers on my tiny chest they said I began to get stronger. As I began to get stronger, I began to eat. The touch from a childs' parents, the presence of them in the room seem to make a sick child feel much better. Soon after I began to recover and was able to go home.

Chapter Three

Going home: Life's new journey

Monitoring precious seconds of life

When I was finally able to go home, the doctors insisted that I be placed on a monitor that would alert my parents if anything was amiss. Complications could develop and it was vital to my survival that my parents were aware of every breath that I would breath. Even when they sent me home I remained a very sick infant. Every little sound that my parents heard over the little monitor would scare them to death and send them into a frenzy. How long life would be like this, they were not aware of. But eventually they would learn that monitoring my life, would eventually consume theirs. The life of a child is the most important gift that a parent can ever receive.

When infants travel home with undiscovered illness, larger problem may arise. For instance when saliva builds in the mouth of an infant they do not know what to do with it. When this process occurs it has the potential to cut off an infants breathing process. Well this is what happened to create my first trip back to the hospital. I had indeed swallowed my own saliva or spit. When my mother tried to help me matters seem to get worse. The little monitor began to beep intensively, so they quickly rushed me back to the hospital. Hospitals are notorious for having you fill out a stack of paper work. Have you often wondered how you could sit there and fill out that paper work while you were deathly ill? Guess the nurses do not understand that concept. I was still not able to breath when they handed my mother a stack of paperwork to fill out. Upset and exhausted, scarred for her infants life, my mother rushed over to the doctors window. There she held me up as small as I was, in hopes for the doctor to see me. Sure enough it worked, the doctor saw me and rushed to my aid. As soon as the doctor laid eyes on me he instantly knew that I was in need of his help. The papers would have to wait. He rushed me back to one of the many areas and told my mother not to worry about the filling out the papers they could wait. That was when he saved my life.

But more than that I was not saved by the doctors alone. I was saved by a higher authority; I was saved by our Lord and Savior. I know deep in my heart that the Lord was watching over me that day. He was watching over me and my mother. I know that I was placed on this earth for a reason; he placed me here for a purpose. He gave me my disabilities to make me stronger. And the result of the trip to the hospital resulted in my body developing pneumonia. Pneumonia can be deadly at any age, but I survived and I am here today to tell you why.

My Savior

"This day I call Heaven and earth as witness against you that I have set before you life and death. Now choose life, so that you and your children may live". (Deuteronomy 30:19, King James Version).

Life is what my heart, body and soul had chosen. Although I was but an infant, my will was to live, my purpose on this earth therefore must be of Gods will. Defeating the odds and acquiring the will to live even infants become powerful tools of their Lord and Savior. I was strong for a reason, therefore I am still alive for a reason. At that time the doctors told my parent that I would never walk or talk. That must have been devastating for them to hear. The thought of your child growing up depended on others for mobility. To never see your child walk or run into your arms. But faith pulled this family through. My faith allowed to know what it is like to walk from one side of the room to the other. If not but for a small amount of time. I did walk for a short period in my life.

You see our God is omniscient, omnipotent, and the omnipresent being in our lives and all he wants is the very best for each and everyone of us.

Facing amazing challenges

At the age of one year old I could "scoot" anywhere I chose to go. But when I reached the age of two my parents took me in to see the doctor. Children are funny, when you want them to do something they will not, but when you turn your back they can be caught accomplishing what a parent asked them to do. Sure enough when I was in front of the doctor I would not do anything. So the doctor walked out of the room for a brief moment. Well guess what happened next? Yes you guessed it, I said, "I want my daddy" and my mom told me, "if you want your daddy, walk to him". This is how I took my first step, and then I continued to walk back and forth, back and forth. Then before I knew it the doctor came back in the room and asked my parents, "is she walking yet"? My parent told the doctor yes that I was walking back and forth and then I turned and smiled up at the doctor as if I was showing my pride and thanking her at the same time. It is funny how my parent could not get me to walk at all in front of the doctor. But the doctor knew and understood how to be patient with me, just as our Lord does.

"The higher the mountains, the more understanding is the glory of him who made them and who holds them in his hands" Francis Schaeffer.

The harder the challenge, the harder we work to overcome life's shortcomings. Our heart is our biggest driver of all desires, for without it we may never succeed.

As an infant I loved watching the cartoon show Barney. I loved to sing along with the tunes. "I love you, you love me, were a happy family with a great big hug and a kiss from me to you, won't you say you love me too". After a bit of time my parents and my sister began to sing the tune along with me.

I loved to do tricks as well. One of the most amazing tricks that I could display would be to twirl two pacifiers in my mouth at the same time. It is an amazing sight to see a child perform such a different trick that most other infants or children are not able to perform. They say that when one of your senses fails that other senses are capable of doubling their strength in order to compensate for weaknesses in other areas. Just guess that the pacifier twirling incident was one of them.

(Continues...)



Excerpted from Reaching for Heaven by Rebecca Lynn Browder Monica Dunnagan Copyright © 2012 by Rebecca Browder with Monica Dunnagan. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents

Contents

Introduction:....................xv
Chapter 1 This is Rebecca's story....................1
Life with many Syndrome's....................2
Chapter 2 When Life Begins: A mother's endurance....................7
Chapter 3 Going home: Life's new journey....................11
Monitoring precious seconds of life....................11
My Savior....................12
Facing amazing challenges....................13
Chapter 4 Growing Pains: A life of surgery....................17
Chapter 5 Elementary School....................19
Chapter 6 Junior High School....................23
Chapter 7 Turning your life over: A challenge of faith....................25
Chapter 8 A new transition; Life in a hospital bed....................29
Chapter 9 Learning begins at many stages in life....................33
Chapter 10 Hobbies: My enjoyments....................35
Chapter 11 Dreams: My Sole vacation....................39
God's creatures....................40
Friendship....................42
Chapter 12 Birthday Surprises....................45
My faith with our Savior....................48
Chapter 13 Special notations:....................51
Chapter 14 Rebecca's Conclusion....................59
Chapter 15 History of the Proteus Syndrome....................63
Chapter 16 A Medical Break Though; 2012....................71
Chapter 17 In Rebecca's forum....................77
Comments from Friends....................83
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Sort by: Showing all of 2 Customer Reviews
  • Anonymous

    Posted December 31, 2013

    I work with  elderly / disabled clients, providing home services

    I work with  elderly / disabled clients, providing home services so that they may remain in their own environment as long as possible.  I went to Rebecca's home where she lives with her parents to begin the process of providing home services for her.  While interviewing her . I was blown away by her love of life, her smiles and sense of humor.  At first I was uncomfortable, but Rebecca put me at ease very quickly. She was very upbeat and her love for God showed.  Rebecca also told me that the oldest person with Proteus Syndrome lived to be 25 years old.  She knew her time on this earth would not last much longer.  Unfortunately, Rebecca was not on our program very long.  She passed away in the fall of 2013. As the title of her book suggests, she reached for heaven and has arrived to be with the Lord.  I miss Rebecca.  She has changed my outlook on life.  She was such a positive person.  I wish others will read her story.  They will come away with a new perspective in life.  Rest in Peace Rebecca!      ErnaB   

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  • Anonymous

    Posted July 29, 2012

    Great book

    This young lady's story is inspiring. She is amazing and you will not forget her. After reading her story I think twice before complaining about anything. My concerns pale in comparision to the burdens she bears with such grace.
    Anyone with a handicap or with a handicapped friend or family member should read this book.

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