My Perfect Imperfections (2 page)

Although I did enjoy my therapy sessions, I hated the multiple surgeries I had to have. My muscles were becoming tighter, and I had to have surgeries to cut my heel cords, inner thigh muscles, and hamstrings. Then they would put me in a cast for a long time. It would get very hot with these casts, and they would keep me immobilized.

I guess I can whine and complain about my life, but at the end of the day, I had to face reality. This was my life, and it wasn’t going to change anytime soon.

Sometimes, if I had great therapy sessions, the therapists would let me leave early. I loved those days because I’d make it in time to watch Layna practice. I used to love watching her dance. She was like an angel with her long, blonde hair and blue eyes. I could watch her forever. We were as opposite as can be. While she had long, curly, blonde hair with blue eyes, I had wavy, dark hair with green eyes.

When I would watch her at one of her recitals as she conquered that dance floor, I would imagine getting out of my wheelchair and walking toward her. Then, I would imagine both of us performing the routines together—Layna with her beautiful, blonde hair flowing, and I would dance just as gracefully next to her with my long, dark hair. We would be known as the dancing sisters.

Of course, that never happened. It only was real in my head.

But, imagination could be a beautiful thing. After all, I could imagine anything I wanted. I may have no control over my physical body. I may be dependent on others to take care of me, but at least the imagination was mine. Nobody could take that away from me.

Besides, it was my imagination and my dreams that kept me sane on most days.

Since I wasn’t able to talk well, my speech therapist trained me to use a communication device. It was great because I could control the device with my eyes using an eye scanning method. If what I wanted to say wasn’t programmed into the device, I had the option of typing out my sentences. At first, this was very hard and time consuming. Eventually, though, I got so good with using it that I could actually hold a conversation with somebody. The device had word predictions, phrases, and even sentences. This helped speed it up for me. I compared it to Layna texting with her phone. The more she texted—and trust me, it was all the time—the faster she got. I would be amazed at how fast her thumbs worked. She would simply say that the fact that I could do the same thing with my eyes was even more amazing. Truth be told, the communication device was my lifesaver. I could actually communicate my wants and needs.

It would be extremely frustrating if I didn’t have my communication device accessible to me. Sometimes, they’d forget to make it available for me at school, which was really annoying. I mean, imagine if somebody’s voice was taken away from them for the day. What if they had to use the bathroom, and they couldn’t even ask for help? So, when they’d forget to make my device available to me, I learned to yell to get their attention. I learned that if I threw enough fuss, they would eventually realize that I needed my communication device to tell them my needs.

Now, don’t get me wrong. I could communicate simple things. For example, I could look up for yes and down for no. I could even point toward something either by looking in that direction or moving my arm that way. I could always drive my wheelchair to where I wanted. I was able to say a few simple words, although my speech was pretty difficult to understand. Besides, like I said, if all else failed, yelling to get somebody’s attention worked every time.

My other lifesaver was my wheelchair. I was able to control my left arm better, so I learned to drive it with a joystick placed on my left side. This gave me independence with my mobility. If I wanted to remove myself from a particular area or a situation, I simply drove away. I couldn’t even imagine being stuck in a place that I didn’t want to be and wait for others to move me.

Out of all of the people in my life, nobody knew me better than Layna. Not even my parents. It was almost like she could read my mind. I’d just had to make a certain face, and she knew what I was thinking. Many times, she was my savior.

Slowly, I learned to make the best of my disabilities—and, more importantly, my abilities.

One of the first lessons I learned in life was that good things usually didn’t last forever.

I was eight years old at the time, and it was Christmas morning. While I was sitting in my wheelchair, Layna was bringing my gifts to me and helping me open them one at a time. I noticed Dad sneaking away, but returning quickly. Layna squealed in delight when she noticed the beautiful puppy in his arms. The black Labrador leaped off and sprinted toward Layna and me. Both of us couldn’t stop laughing as the puppy was jumping around in front of us. Layna picked him up and brought him to me. When he started kissing my face all over, I knew instantly that he was going to be my best buddy.

“Is he for us, Daddy?” Layna asked the question I was thinking. I couldn’t believe the puppy was ours.

“He sure is. You can name him whatever you want!”

“Really? What do you want to name him, Lily?” Layna turned to him while patting the puppy as he sat in my lap.

I placed my arm on him so I could feel his fur under my hand. Although it was hard for me to have a smooth, controlled movement with my arms, I focused extra hard to gently touch the puppy. I didn’t want him to be startled and scared of me.

After thinking about it for a few moments, I used my communication device and said, “How about Duke?”

Layna smiled. “I love it!”

There were several reasons why I wanted to name him Duke. First of all, he looked like Duke to me. Secondly, the “d” sound was easier for me to express. So even if I couldn’t say his full name, “Duke,” I knew I could at least make the sound “Du.”

Once I started trying to say his name, he quickly figured out that I was calling for him. Every time I said, “Du,” he’d lift his head to me and slobber all over my face. I remembered the feeling of pure bliss that somebody was actually responding to me calling their name.

Unfortunately, our happiness didn’t last too long that Christmas. The next day while we were all eating breakfast, Mom and Dad dropped the bomb on us. They said that they had decided to get a divorce.

“You know we’ll always love you, and we’re always here for you two,” Mom said, avoiding eye contact.

I didn’t know exactly what “divorce” actually meant, but I knew several kids from school whose parents also had gotten divorced. From the way my stomach knotted up, I had a feeling that it was not a good thing.

“You’re not going to be married anymore?” Layna asked, her voice shaky.

“Now, Layna, you must understand that this does not affect Lily and you at all. I will always be your daddy and your mother will always be your mommy.” Dad reached out to hold her hand, but Layna quickly snatched it away.

“Why?” I asked with my device.

Both stayed quiet for a few seconds. Mom finally sighed and said, “Honey, sometimes things don’t go as planned. You just have to know that no matter what happens with your daddy and me, our relationship with you two will never change.”

Suddenly, all of the guilt that I had carried for the past ten years of my life began to resurface. I didn’t want to lose it in front of them. I shut them out and hid in my safe world by bringing my head down and not responding. I simply didn’t want to hear any more.

“Lily, please don’t do this. It’s important to talk about your feelings now,” Mom said, trying to keep her voice soft. I knew her too well, though, because I could already hear her voice trembling.

“Leave her alone, Jackie,” Dad said. “Can’t you see she needs time to deal with this?”

“Really, Bill? I’m trying to help her. You see that she’s upset, right?”

By then, I just wanted to get away from them. Layna must have wanted the same thing because without saying a word, she took my wheelchair and pushed it into our bedroom.

It was nice that we still shared the same room. After Duke ran into the room behind us, she slammed the door and locked it. Plopping herself on her bed, she stared at me.

I frantically began using my communication device. “Do you think this is my fault? Maybe they’re getting a divorce because of me.”

“Why would you think that, Lily?” Layna asked, confused.

“The stress of taking care of me. They always have to do things for me.” By then, I couldn’t hold back the tears.

“Lily, don’t cry. What you’re saying makes no sense. They’ll still be taking care of us. They’re our parents, so that’s not going to change.” Layna got up and wiped my tears from my face.

I got myself so worked up by then that I couldn’t even hold my head steady to talk with my device. Instead, I just sat in my wheelchair and sobbed, letting the guilt swallow me.

Duke began howling, sensing that something was terribly wrong. Layna knew there was nothing she could do for me. She knew I needed some time to cry it all out. She gave me my space and held my hand until I was done with my breakdown.

“Sorry,” I finally replied.

“It’s fine, Lily. Let them do what they want. Who cares? At least we’ll always have each other. I’ll never leave you.”

The divorce went through fast. Soon after, Layna and I got used to our new routine. We both stayed with Mom in our home, and Dad moved a few towns over. He still helped with taking us to our appointments and events, but he just didn’t stay in the same house as us. Luckily, he made sure his new house was wheelchair accessible, so I was able to visit him every other weekend.

Although Layna and I were still upset with our parents going through with the divorce, we knew there wasn’t much we could do about it. Adults were just weird.

Duke was very protective of Layna and me. It was unbelievable how intelligent he was. He was always gentle with me, but played rough with Layna. Before and after school, all three of us would go for a walk. I would drive my power wheelchair while Layna would hold Duke’s leash to walk him. I loved these walks because I felt free and independent. I cherished this quiet time with the two beings I loved the most in this world. More importantly, both loved me for who I was. I could be completely myself around them without worrying about being judged.

As I got older, I learned to tolerate the long days at school. For example, I learned to ignore the discomfort from sitting in the wheelchair for such long periods of time. It’s the worst feeling in the world not being able to even shift my weight in the wheelchair. So many times, I just wanted to be able to stand up for a few seconds to stretch my legs and relieve the pressure from my butt. Instead, I learned to deal with it, just like everything else.

Nobody said life was going to be easy—especially for a girl like me.

When we started high school, I admit I was intimidated. I was used to being bullied. It got so bad at times in middle school that I would cry as soon as I came home. There were kids who would imitate the way I tried to talk or the way my body moved.

Once they realized that I was Layna’s sister, though, they’d back off. Layna was well known and liked. It just wouldn’t look good to be on Layna’s bad side.

I knew I had to deal with the new kids in high school who didn’t know Layna or me. That first day of class, I was very overwhelmed. There were too many kids standing and walking through the hallways. Luckily, I was pretty good at driving my wheelchair, so I wasn’t worried about running into anybody. Most of my classes were with the “normal” kids because I’ve always had an above average intelligence. That was never the problem. Still, there were some classes I attended that were segregated with the special needs kids.

Although I was scared at first, I soon realized that it was just like any other school I had attended. The kids didn’t even notice me. While I was driving my wheelchair, I didn’t even get a “hi” from anybody. As a matter of fact, it was like I wasn’t there. These kids just looked right through me.

I guess it would have been easier to feel invisible. Instead, I felt painfully visible, but entirely ignored.

Although I was challenged physically, I was easily able to keep up with the “normal” kids intellectually. I could read, spell, do math, and type with my communication device. My biggest drawback was my physical limitation. Even my speech was severely affected. I could say a few words fairly clearly, but generally, my speech was difficult to understand.

If people didn’t know me, they usually assumed that I was affected cognitively as well. At first, it used to bother me, but by the time I was in high school, I expected it. They would talk to me as if they were talking to a toddler.

Layna had programmed my device to say, “Yes, I have Cerebral Palsy. And, yes, I can have normal conversations with you.” I pressed this button quite a bit just to check the ignorant people.

I was thankful that although I couldn’t control my body, at least I had my mind. Even if physically I continued to decline slowly as I was getting older, at least my mind continued to be sharp.

Yes, the truth of the matter was that as my body was growing, it was harder for me to control my muscles. For example, it was much more challenging to stand and walk. Luckily, I was still able to do it with assistance, but it was much easier when my body was smaller.

I was also thankful that I could still use the toilet and was able to eat regular foods. Sure, somebody had to help clean me after I used the toilet, help feed me and bathe me, but I learned to focus on the positives. At least I didn’t have to wear diapers, and I was still able to enjoy the taste of food.

I would hang on to that as long as I possibly could.

I was used to my routine. Most days, I was a happy girl. I always looked forward to coming home and hanging out with Layna and Duke in the evenings. Although I normally kept a smile on my face, occasionally there were days when things just felt bleak. I had no friends besides Layna. Sure, her friends were nice to me whenever they came over, but they weren’t my friends. Sometimes, I would even find myself being jealous of Layna doing her “girly” things with her friends.

She was always very good with including me. Knowing Layna, she would have it no other way. If she was having people over for a sleepover, I would be right there with them. If she was having a movie night, she would even take me with her. At times, I did feel guilty about it. I didn’t want to hold her back from her social life. But, the selfish part of me—the part that didn’t want Layna to have an independent life away from me—kept tagging along.

One day, Layna was asked to her homecoming dance by a cute boy she had a crush on. Timmy had stopped by the house a few times, and he was always very nice. This was going to be Layna’s first dance with a boy. She was beyond excited.

“Can you believe he asked me, Lily? He was so cute when he asked! I mean, he was very shy. He barely could look at me when he gave me the roses.” Layna was in her own glory. Timmy had given her the dozen roses by her locker at school.

I couldn’t stop laughing as she explained every detail of how he had asked her. I adored Timmy, and to see Layna this happy made me happy. After reliving this moment with her for the hundredth time—because I’m sure she must have told me the story at least that much—I started wondering if I was ever going to get asked for a dance.

Layna must have sensed the shift in my mood because immediately she asked what was wrong.

I smiled and with my device, I replied, “Nothing. Just tired.”

“I know you too well, and I always know when you’re lying. What’s wrong, Lily?”

We were both in the kitchen, so I tried to drive away from her. I certainly did not want her to feel bad for going to her dance because of me. Layna felt bad about everything when it came to me. She would change her whole life around just to make sure I was happy. I hated the way that made me feel.

She followed me to our room. “Come on, Lily. You tell me everything. What’s the matter?”

I took a deep breath, knowing that she was not going to stop until I talked with her. “I wonder sometimes if I will ever go to any dances.”

“Of course, you are, silly!”

I frantically typed with my device. “Layna, who would ask me? Look at me! Have you noticed anything different about me?”

Layna stared at me for a few moments. Finally, she said, “Lily, you do know how perfect you are, right?”

This was always what got me mad about her. Why did she say stupid things like that? “Stop!” I said with my device. “Please leave me alone.”

She didn’t stop. “If people don’t see how perfect you are, they’re stupid. They don’t see what I see, Lily. You are beautiful. Besides that, you are one of the strongest girls I know! Look at you!”

“Yeah, look at me. People have to take care of me, Layna.
You
have to take care of me. You give me baths every day…feed me. You even have to wipe me after I use the bathroom!” By then, I was becoming very frustrated.

“Yet, you always keep a smile on your face. Lily, you inspire me every day. Don’t you know you’re an angel? One day, a gorgeous guy is going to see what I see, and he will treat you like a princess.” Layna gave me a hug. “Hold on, I want you to dance with me right now. I’m going to play this song that reminds me of you.” She pulled her iPhone out. After a few moments, the song,
Perfect
by Pink began to play.

Layna took my hands and sang the lyrics at the top of her lungs. She danced while holding my hands around the wheelchair. Duke also jumped around with her, wanting to be in on the fun. It was all so cute that I couldn’t help but laugh with her.

So I danced. I danced with my sister. While she sang the words to the song, I sang with her…yelled at the top of my lungs.

From that day on, whenever either of us was having a rough day, we would play that song, dance with each other, and sing our own version.