The Rift In Our Reality: A Sweet Young Adult Romance

by Amy Proebstel

  The Rift

  In Our

  Reality

  Book One

  Amy Proebstel

  Copyright © 2019 by Cavaliers Publishing

  All rights reserved. The events, characters, and entities depicted in this book are fictional. Any resemblance or similarity to any actual events, entities, or persons, whether living or dead, is entirely coincidental. 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, except in the case of brief quotations embodied in critical reviews and certain other noncommercial uses permitted by copyright law. All inquiries should be submitted to amy@levelsofascension.com.

  ASIN: B07QBG4QZW Kindle Direct Publishing

  Printed in the United States of America

  Cover Art by Wynter Designs

  First Printing, 2019

  Website: www.LevelsofAscension.com

  Amazon Author Page: http://www.amazon.com/AmyProebstel

  BookBub: www.bookbub.com/authors/amy-proebstel

  Goodreads: www.goodreads.com/aproebstel

  Facebook: www.facebook.com/levelsofascension

  Twitter: www.twitter.com/amyproebstel

  Instagram: www.instagram.com/amyproebstel

  Dedication

  This book is dedicated to the Pollman family who are blessed to have Haley in their lives every day. She is inspiring to everyone who meets her. Thank you, Melissa and Dean, for opening your hearts, family, and journey with me to share with the world.

  When I asked a couple of friends for their help with this project, they were eager to jump in and come through in a big way. The first person was Lara from Wynter Designs who made the beautiful cover for this book in record time. Next was Heather Masters, a brilliant audio book narrator, who generously offered to get this book produced in her amazing style. Even with the tight deadline, she said she’d do whatever it took to make it happen. People are so good!

  I’d also like to thank: Jace Slone, Delaney Wehr, Ashlynn Steiner, and Bronson. These teenagers took time out of their lives to answer the many questions I had about what’s important to teenagers today. Your honesty was appreciated.

  To the readers of this book, I greatly appreciate all of your kind words, amazing reviews, and support along the way. None of this would be possible without your enthusiasm for the characters and their stories.

  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

  Chapter 21

  Chapter 22

  Epilogue

  How to Donate

  About the Author

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  Chapter One

  I’VE LIVED AN amazing life. Yet anyone on the outside might wonder why I’d think so. You see, I’m not normal. I have Batten disease. Never heard of it? I’m not surprised. Most people haven’t.

  If we were to compare my genetics to a card game, mine would be a hand full of jokers. But not the laughing kind. My body is unable to dispose of waste products in my brain. As the years go by, things stop working the way they should.

  The first thing to go: my eyesight. Lucky for me, my parents never coddled me. If I wanted to ride my Barbie car across the front lawn, they let me go. I even rode my moped up and down the driveway.

  I think it’s because of them that I kept my positive attitude toward accomplishing anything I wanted. My mom always said I sparkled.

  Right now, I’m working on a huge bucket list. Of course, it isn’t written down; it’s in my head. Nobody knows what I have planned, but that’s part of the fun. Right?

  I’m right in the middle of planning my epic Hood-to-Coast relay goal, when a knock sounds on my bedroom door. “Come in,” I call out, scooting over to the edge of my bed. I expect it to be my mom since she’s usually the only one home with me until my dad gets home from work, not to mention she’s the only one who knocks so softly. “What’s up, Mom?”

  “Your music teacher’s waiting for you in the living room,” she answers.

  “Shoot! I forgot all about that. I’ll be ready in a second.” I push myself away from the bed and reach for my bow which I keep in its special case. I don’t want anything to happen to the horsehair strings, so I’m meticulous about how it’s stored.

  “Where’s your necklace, Haley?” Mom asked suddenly.

  I reached up, instantly alarmed when I only felt my bare flesh. That is until I remember I took it off while I was trying on different shirts for my starring role in my best friend’s latest video. “I left it on my dresser. Can you get it for me?”

  “Sure thing.”

  Since the sunlight is streaming through my window, I’m able to see movement in my peripheral vision. I can also smell my mother’s perfume. It’s my favorite scent of lilac. Her hands are as gentle as butterflies as they move my hair out of the way while she fastens the delicate chain behind my neck.

  Without any conscious thought for my action, my hand raised as if to reassure myself that the little heart pendant is back in its rightful place. I already know it’s there; I can feel the metal warming up against my skin.

  It’s really a silly piece of jewelry, but it was a gift from my best friend, Jackson, back in the first grade. I’m pretty sure he still has a crush on me, but he’s always and forever only going to be my best friend.

  Feeling better prepared mentally, I reach up and place my hand over my mother’s where it rested lightly on my shoulder. “Thanks, Mom. I’m going to be practicing my new song today. Are you going to be listening?”

  “I’m sorry, Haley. I’ve got some calls to return for your foundation.”

  I’m fairly certain she can feel my body wilt with disappointment. I’m also glad she’s still standing behind me because I can’t control my scowl at how she refers to the foundation created in my name. While the money raised has helped my health tremendously, I sometimes wish I could just be a normal, anonymous kid.

  “Although, I have to say it’s pretty soothing to hear your music in the background while I work. Maybe you can have Jackson video your session one of these times. It’d be nice to have a record of your progress. Don’t you think?”

  “Sure, Mom.” Rather than tell her what I’m really thinking, I decided I’d better hustle out to my instructor. Besides, we both know the real reason for all the videos the family makes. It’s a record that I existed.

  Nobody wants to say it out loud, but there it is. We make videos to remember all the good times. Let’s face it; I won’t be here for too many more years. I’ve always known that, but each day seems more like a gift because I’m still able to do things for myself. As I said, I’m one of the lucky ones.

  Chapter Two

  OKAY, I’M DONE with my music lesson for the day. That was really rude how I just walked out without even telling you who I am or
anything about my family. So, my name’s Haley Vallem, and I’m sixteen, well, almost seventeen.

  I’m the youngest in a family with four children. We’ve always been a close-knit family, especially since I was diagnosed with Batten disease when I was seven. From that awful day forward, we’ve learned to live every day in the present.

  Where was I? Oh, yeah; I was telling you about my family. My oldest sister, Julia, just turned twenty-nine last week. She’s married to a cool guy named Rothford…but I just call him Ross…and they have two children of their own. Don’t worry, she was tested for Batten, and she isn’t a carrier. Their kids are safe.

  After she graduated from Portland State University with a Political Science degree…let’s be honest. What was she ever going to do with that kind of degree? Anyway, she went to work as an administrator for the foundation my parents and grandparents set up in my name. She’s pretty amazing at what she does; if I do say so myself!

  Then there’s my other sister, Rose. She’s twenty-three and just out of college. She surprised my parents by becoming a drug and alcohol counselor. I think it’s the perfect fit for her because she loves looking out for people and trying to help them; however she can. She ended up moving to Portland, so I don’t get to see her as often as we’d both like.

  Last is my brother, Hunter. He just turned eighteen, and he’s chomping at the bit to move out as soon as he finishes his senior year in high school. He’s supposed to be applying for colleges, but he’s too busy playing video games and making movies to upload to YouTube. I’m sure he’ll figure it all out, but our parents are worried.

  My parents’ names are Robert and Ruth. Dad owns and runs his own construction company. I’m pretty sure he’s successful at it, and I know he loves driving all the big equipment. Mom used to work with his company, taking care of all the office stuff, but all that changed when I started to get sick.

  Do you want to hear about it?

  In the first grade, my life was completely normal. Mom even said I was reading and writing above my grade level. But that summer, my vision started to get weird. I kept having to move closer to the TV in order to be able to see it. With our busy family, nobody really noticed and I didn’t say anything.

  When I started second grade, it was really hard for me to keep up. My teachers complained to my parents, and that’s when they took me in to get glasses. For some reason, the doctors thought those were going to help.

  My vision kept getting worse throughout the year. The following summer, we visited so many doctors I lost count. One ophthalmologist even told my dad she thought I was pretending to have trouble seeing just to get attention.

  Being the awesome dad that he is, he just leaned forward and said, “Respectfully, Doctor, you’re wrong. I watch Haley when she doesn’t know. She can’t see, and something’s causing it.”

  So, either that doctor took him seriously, or she just wanted to get rid of us, she referred us up to the Casey Eye Institute at OHSU. That September, I was put through a whole host of vision tests.

  One that still makes me shiver just thinking about it was the ERG test. They put electrodes directly onto my eyeballs! Eww! They said it was necessary to test my eyes’ electrical response to light-sensitive cells.

  After that, we met with a specialist, Dr. Penn. He told us the worst news possible. My parents were so afraid that I was going blind. As it turned out, there was something worse than just being blind.

  Now I wasn’t actually there for this conversation, but I’ve since heard this story so many times, I feel as though I were. Dr. Penn sat across from my parents and said, “It’s bad. I think she has Batten disease. It’s fatal, and there’s no cure or treatment.”

  Because Dr. Penn had diagnosed other Batten children and based on his experience, my rapid loss of sight and test results were proof positive of the disease. He was confident in his diagnosis; although, he hoped he was wrong.

  In order to be one hundred percent sure of his diagnosis, he ordered a round of genetic testing for myself, Mom, and Dad. At least that time I wasn’t the only one getting poked and prodded.

  After three weeks of my parents having hushed conversations which would stop whenever I entered the room, we finally got the results. It was true. I had Batten disease, and both of my parents were carriers.

  That’s how Batten works. Because both of my parents carried the genetic defect, they had a twenty-five percent chance of passing it along to their children. Being the fourth child, I guess the odds were stacked against me.

  I’ll never be able to think about the fall season in quite the same way. That was when our perfect family literally fell apart. How do you face such a diagnosis without it changing how you think about your future?

  From there on it was a whirlwind of finding a neurologist and other specialists I might need. Just the thing a kid wants to do to get out of school. We met with a neurologist twice. The first visit was easy; we just talked. The second time, I had to do an EEG to check if I were having seizures. I could’ve saved them the time by telling them I wasn’t. But who wants to listen to an eight-year-old?

  Next, came the mobility specialist and the low vision specialist. I didn’t have any trouble getting around. They tried to get me to use a stupid cane, but I hated it. Finally, they agreed I could get along without it. Thank goodness. My vision, however, had gotten so bad now that the low vision technology really wasn’t going to work for me.

  I’m pretty sure my parents wanted a doctor who could tell them what would be next and how they could prevent it. Unfortunately, that’s not realistic. We simply had to wait and see. It’s kind of like Russian roulette every day. What part of my body’s going to stop working next?

  Other than my vision all but disappearing, the biggest thing to change about me is my energy level. I get tired really easy. Do you know how frustrating this is for a little kid?

  I also stopped being able to keep up with everyone else when it came to the actual school work. Starting in the third grade, I went to regular school three days and the other two days a week at Montessori discovery to help me stay caught up. Over time, I discovered nobody really expected much of me. I mean, my parents still pestered me about getting my homework done, but they never said anything if I got a C on an assignment or even on a test.

  My music tutor, Mr. Abernathy, introduced me to the cello. Even though the instrument is bigger than me, I just love it. Don’t get me wrong, I’m terrible at getting all my practice time in, but I have fun just messing around. Mr. Abernathy keeps telling me I could play professionally if I’d just apply myself, but that just sounds like too much effort.

  Besides, I’ve got to save some of my energy for spending time with my friends. Other than Jackson and a couple of others, my huge group of friends have disappeared. My real friends don’t care that I’m blind, or that I sometimes zone out. We just have fun together.

  Speaking of unconditional friends, we used to have a whole bunch of animals when I was little. We had two big dogs and two goats. They were the best. But, as with all living creatures, they grew old and eventually died. We were so busy with all my doctors’ appointments, work, and my siblings’ sports events that we never got around to replacing them.

  My life would be truly complete if I could only convince my parents to let me get a dog. If he were trained to be a seeing-eye dog, then I wouldn’t have to depend so much on my mom.

  I understand that Mom wants to feel needed, but why can’t she grasp that maybe I just want time by myself. Somewhere away from the house. It’d be nice to know I could walk outside and not get hit by a car.

  Do you know what the worst thing about asking for a dog has been? Give up? Mom said I should learn to use that awful cane if I wanted my independence. Doesn’t she get how humiliating that is? Talk about advertising my blindness to anyone who’s anywhere nearby.

  So now you know almost everything there is to know about me…except for one thing. Six years ago, I became one of the first CNL1 human trial s
ubjects to receive gene replacement therapy or GRT. That’s still a mouthful, so I like to call it the GReaT treatment. I was scared to do it, but it turned out to be a cinch. All they did was give me a one-time delivery of a normal copy of my defective gene. No problem.

  That opportunity is the only reason I’m even able to have this conversation with you right now. Heck, who am I kidding? I’d probably be dead without it. Now you know why I think I’m so lucky. I practically won the lottery…the human trials lottery, anyway.

  The GReaT treatment did slow down the progression of my disease, but it hasn’t stopped it entirely. Even now, I can feel how tired my arms are just from playing the cello for an hour. Normal teenagers wouldn’t have any problems with it.

  In fact, I have an appointment at the hospital for later today. The researchers have requested another battery of tests to find out how far I’ve slipped from my previous results. Talk about depressing. Oh, well. I’ll get to catch up with some of my favorite nurses.

  ~~~~~~~~~~~~

  At least the nurse had the decency to put me in a room with another patient today. Most of the other times I’d been here, I’d be left alone with only my thoughts or an audiobook to occupy my time. I’ve got my earbuds in my ears, but I don’t have my book turned on. I’m listening to the family talking to the little boy in the bed next to mine.

  Also, the nurse had chosen my room since it had the best light coming in the windows. From my vantage point, I could keep my face forward and still be able to use my peripheral vision to see the people sitting around the boy’s bed. The person closest to me appeared to be a boy about my age, maybe a little older than me.

  Shoot, I think he noticed I was looking at him! I fumbled with my cell phone, attempting to get the book turned on before he calls me out for eavesdropping. Too late.