My Perfect Imperfections
Read My Perfect Imperfections Online
Authors: Jalpa Williby
This edition published via Amazon KDP
My Perfect Imperfections
All Rights Reserved.
Copyright © 2015 Jalpa Williby
ASIN: B011H491IE
This is a work of fiction. The events and characters described herein are imaginary and are not intended to refer to specific places or living persons. The opinions expressed in this manuscript are solely opinions of the author. The author has represented and warranted full ownership and/or legal rights to publish the materials in this book.
Except as provided by the Copyright Act, no part of this publication may be reproduced, transmitted, or stored in whole or part by any means, including graphic, electronic, or mechanical without the express written consent of the publisher except in the case of brief quotations embodied in critical articles and reviews.
Edited by:
Maureen E. Angell, Ph.D
. and
Angie Martin
Formatted by:
Angie Martin
Cover by:
Amanda Walker
To learn more about Jalpa Williby and her works,
please visit her
website
.
The Chaysing Series
Cerebral Palsy: My Perfect Imperfections
(coming soon)
(Nonfiction companion book for My Perfect Imperfections)
My Perfect Imperfections is dedicated to all of the angels who have crossed my path.
“Congratulations! You have beautiful little girls. Oh, and, by the way, one of the twins has Cerebral Palsy.”
I always wondered how the doctors broke the news to my parents about my diagnosis. I used to visualize the entire scenario.
“What are you talking about, Doctor? What does that even mean?” I could picture my mom asking, her eyes filling with tears.
“Well, is this curable? What is the prognosis?” Dad would ask, always the practical one, looking for answers.
“I know this is a lot to take in. It’s a neurological disorder. There are things we can do to help. Lily can go through intense physical, occupational, and speech therapy. Actually, she’ll probably need therapy most of her life. I have pamphlets I can give you…and you can read information about Cerebral Palsy. Oh, and I can give you references to some really great support groups. I mean, you’ll be surprised how many parents have to go through this type of thing.” The doctor would ramble on and on, never really answering the questions directly.
Dad probably became angry, his voice getting louder. “Look, Doc, I just asked if she’s going to get better. That’s all I want to know!”
Mom most likely started crying quietly to herself, knowing in her heart why the doctor was vague. I could see both being left with more questions than answers, fearing their lives had just turned upside down.
My name is Elizabeth Skye Cooper. Well, most people just call me Lily. I am eighteen years old, and I have Cerebral Palsy. What exactly is Cerebral Palsy? According to Webster, it is “a disability resulting from damage to the brain before, during, or shortly after birth and outwardly manifested by muscular incoordination and speech disturbances.”
Blah, blah, blah. I hate stupid definitions.
I’ll tell you what I know of Cerebral Palsy. It sucks. I can’t move my body the way I want to move it. I’m mostly confined to my wheelchair because I can’t walk without assistance. I can’t even feed myself since my arm is not able to bring the damn food to my mouth because of my inability to coordinate my muscles. I know what I want my arm to do, but it won’t cooperate no matter how hard I try. Didn’t I tell you it sucks?
I’ve lived with it for eighteen years, and nobody understands my body more than I do. None of those doctors, none of those therapists, not even my family. Through the years, I’ve learned to make the most of it. I can actually drive my wheelchair and talk with my communication device.
It hasn’t been easy. No, it hasn’t been easy.
The rain slamming on the windshield is making it impossible to see clearly. I can tell she’s too upset to notice that she’s driving too fast, especially around the curves. I bite my bottom lip and swallow the scream from escaping when the van slips a few times. I don’t want to yell at her for fear that she’ll turn around to check on me while driving. Instead, I hold my breath and pray that she’ll slow down.
The headlights come from nowhere, blinding us. Where did they come from?
“Hold on, Lily!” she yells as she spins the steering wheel.
My heart stops beating when the van swerves out of control. I shut my eyes as the deafening sound of the screeching brakes and the crunching metal hits me like a tidal wave. The shattered glass tinkles around me, and everything moves in slow motion. As our van continues to spin, a deathly silence encases me.
I hear nothing. I feel nothing. I’m floating…and my life flashes before my eyes.
When I was much younger, I used think that I was just like the other kids. I didn’t even realize I was different. Sure, my parents took me to a lot of therapy sessions, but I just figured all kids attended classes like these. It didn’t really register until much later that my twin sister, Layna, never attended those sessions with me.
I suspected I was different when I was about four years old. I still remember that day. My mom brought Layna and me to a park because it was spring, and the weather was especially nice that day. Layna had run off to the other side of the park to play on the slide.
While I was sitting in my wheelchair, this little girl, Sara—yes, I still remember her name—skipped toward me and asked me to play tag. She kept pulling on my hand to get out of my wheelchair.
“Come on, come play with me,” she insisted.
“Sara, no, honey. She can’t play with you,” her mom said, trying to tug her daughter away, looking uneasy. She barely glanced my way.
I wanted to use my words, too. I wanted to tell Sara that I’d like to play with her, but I couldn’t talk like her. The words just wouldn’t come out even though, in my mind, I was thinking them.
“Sara, this is Lily. Maybe you two can swing together? I can hold Lily on a swing next to you,” my mom suggested, her voice sounding overly cheerful. This clearly meant my mom was becoming uncomfortable with the situation.
“Oh, we were just leaving, anyway,” Sara’s mom interjected. “It was nice to meet you. Take care.” With that, Sara’s mom picked her up and rushed away.
That was the first time I noticed that people acted differently around me. I could tell Sara’s mom was uncomfortable and couldn’t wait to get away from us. In hindsight, I suppose similar events occurred prior to this one, but I was just too young to notice. Besides, most of the time, Layna talked for me, so I never sensed anything was wrong.
I convinced myself that once people got used to me and got to know me, they wouldn’t act so awkward around me.
I was wrong.
Mom decided to be a stay-at-home mom so she could take care of us. Dad worked long hours to help pay for all of the medical bills. As far as I was concerned, life was good. So what that they had to carry me, take me to the bathroom, feed me, and basically do everything for me? I had their undivided attention. Yep, life was good.
As Layna and I were growing up, I often wondered why she didn’t need a wheelchair like me. Okay, a part of me was hoping she would have the same problems as me. I knew it was stupid to think that way, but hey, at least I was honest.
I could tell Layna was completely different from me. While I was placed on the floor to move as I willed, Layna would crawl all over me. I couldn’t even get on my hands and knees, let alone move around the room like her.
When I realized that she could move much better than I could, I wanted to hate her. I was actually jealous of how much more she could do compared to me. While I was learning to walk small steps in my therapy sessions with the help of the therapist and my braces, Layna was running around all over the place. She was free to do whatever she wanted, without anybody helping her. It wasn’t fair! Oh, how I wanted to hate her.
But, Layna wouldn’t allow it. She just had too much love to give. She was always attached to me. If I was lying on the floor mat while Mom stretched me, Layna would put her head on my tummy and hug tightly. As soon as she was able to push my wheelchair, she would take me from one room to another, making sure I didn’t get bored.
One night, Layna woke up sobbing. We must have been no more than five years old. No matter how hard my parents tried to calm her down, she wouldn’t stop. She was hysterical, and she refused to tell my parents anything.
While lying in my bed listening to Layna, I started to become upset. I could hear her crying from the next room. Was she hurting? Was she sick? Even though I tried to fight the tears, they seemed to sneak out. Finally, it all got to be too much. I couldn’t control my own crying, and I eventually reached a point where I was bawling just as loud as Layna.
My dad came running into my room. “Lily, what’s wrong? Are you hurting? What’s wrong?” His frantic eyes were anxiously searching for some type of reassurance from me.
In between my sobs, I looked at the door, pointing with my arm. He must have figured out that I was worried about Layna because he said, “Layna is fine. Don’t worry about her. She probably just had a bad dream.”
That answer wasn’t good enough for me. I cried even louder.
In his panic, Dad yelled for Mom. She came running in with Layna in her arms.
“What’s happening? Is everything okay in here?” Mom’s face was pale, looking beaten down.
“I think she’s worried about Layna,” Dad explained.
“Oh, honey. Don’t worry about her. She’s just upset, that’s all.” Mom tried to keep her voice soft. She put Layna down so I could see for myself.
As soon as Layna saw me, she ran to me, screaming hysterically. When she crawled into my bed, I reached out to touch her. To my surprise, Layna calmed down as she wrapped her arms around me. Still gasping for air while she tried to settle herself down, Layna soon fell asleep, cuddled next to me.
Both my parents stared at the interaction in awe. Slowly, they tip-toed out of my room.
Layna continued to sleep in my room from that night on, and that was the start of our unbreakable bond. Layna became my best friend.
I finally started walking around the age of four when I took my first steps in the walker with my physical therapist, Julie. It was a special walker that rolled behind me, and since I couldn’t hold the walker with my hands, my arms were stabilized by a platform attached to the walker. It was called a posterior platform rolling walker. Julie had been working with me on getting my leg muscles strong enough to bear weight. She placed me in the walker, and my parents were there, along with Layna, to cheer me on.
This was a big deal to me because I had never walked without anybody holding me. In this special walker, the goal was for me to take steps on my own. It was very stressful because I wanted to show off to my parents.
I think they sensed my uneasiness because Mom said, “It’s going to be fine, Lily. Just do your best. We’re very proud of you.”
Dad was a bit sterner. “Lily, I want you to give it your all. You’ve been working hard, so this is the time to shine.”
Wow, thanks, Dad, for putting even more pressure on me.
Once positioned with the walker, Julie told me to try to move my legs forward as if walking. I stared down at my legs and willed them to move. Some signal went from my brain down to my right leg and I saw it being lifted up. Somehow it came forward. Then I did the same with my left leg. I couldn’t believe it! My legs were moving! Okay, they weren’t perfect steps. As a matter of fact, my feet were sort of tripping over each other, and my knees were bent. Even though I had braces for my feet, it looked like I was still walking on my toes. They may not be perfect steps, but all I cared about was that I was walking. Nothing could take the smile of joy off my face!
My dad praised me, jumping up and down, while my mom cried tears of joy. But, nobody cheered for me louder than Layna. It was as if I had just won the Olympics.
Through the years, I held on to special moments of triumph such as these.
Growing up, while Layna attended dance lessons, I attended my therapy sessions. Mom and Dad would take turns driving us around to our appointments. I knew it was hard on them because there were times when we’d hear them yelling at each other about how they were going to get us where we needed to be. It was always very stressful when they got into their fights. Layna and I would stay quiet, staring at each other, both of us praying that it would end soon. We knew that when they fought, the rest of the day would be ruined. They’d avoid talking to one another and have permanent frowns on their foreheads.
Usually, as soon as I would reach my therapy sessions, I’d forget about the incidents. As hard as it was for me to work, I really enjoyed the sessions. It was one place where I felt like I almost fit in. Well, sort of. There were other kids there like me, so I didn’t feel out of place. The therapists were really great, too. It was refreshing that they talked to me like they’d talk to any other kid. They expected me to work when I was with them. They didn’t baby me. Instead, they pushed my body to exhaustion. I liked it, though, because I felt accomplished.
Julie, my physical therapist, would even work with me in the pool. That was the best. I could actually feel my muscles relax, and it was so much easier to walk in there. I felt like I was even able to support my weight.