“Speaking of best friends, Jackson was here earlier. He wanted to say hello, but you were still sleeping.”
“I’m sorry I missed him. Where’re my parents? I’m surprised they aren’t hovering over me.”
“Well, about that….”
“Spill it already. I promise I can handle whatever news you’ve got to share.”
“If you’re not able to travel for the trial, your parents are working on bringing the trial here.”
“They’ll never go for that. They’ve got to set up so much; it’s never going to work.”
“That’s what your dad said. So, they’re also looking to find out when the second round of trials will be held. If that doesn’t work out, there’s another study which is close to being released. It’s possible that you’ll be considered for it, based on your age. So, I don’t want you to worry. There’re plenty of us doing that for you. Okay?”
“No problem there. I’ll just be here sleeping while the world passes by without me.”
“Now you’re getting the right idea.”
“Tell me a story while I rest.”
“Do you want to hear about Charlie when he was a puppy?”
“That’d be amazing. I bet he was the best little boy ever.”
Matt chuckled, his fingers tracing patterns up across my palm. It reminded me of a game we used to play as children. “Well, Charlie used to have a thing for chewing on shoes. The first pair he ate was my mother’s favorite jogging sneakers.
“You can imagine how much Mom cared for him after that. My dad teased her mercilessly until he learned how devastating it was to lose his own work shoes in the same week. Then we all learned to put them away from his ever-searching mouth.”
“I’m glad he got over that habit. My family leaves their shoes everywhere.” I reached over and ran my hand over Charlie’s silky smooth crown then lifting one satiny ear and playing with it while he slept on. “What else?”
Matt continued to share silly little stories with me until my body decided it needed rest more than company. I never knew if he left my side or if he slept in the chair. This was the first time I didn’t worry about falling asleep since I had Matt and Charlie to look after me. I could fully relax and enjoy the sweet dreams of my future.
Chapter Thirteen
IT’S OFFICIAL; I missed the drug trial because I was still battling with my bout of pneumonia. For some dumb reason, it took over two weeks for my body to fight off the virus even with all of the medical treatment I received. Now, I’m convalescing in my bedroom again, back where it all started.
I keep hearing my mom cry when she thinks I’m asleep or far enough away to not hear her. She tells me it’s not my fault, but she doesn’t know that it really is. I kept pushing myself all summer, enjoying my time with Matt and Jackson. We were doing everything I ever wanted to accomplish, and we documented it all. But I have to believe it wasn’t all for nothing.
How can she say it wasn’t my fault? Or maybe she’s just trying to make me feel better. That’s probably the case. If I get depressed, then it’ll take me longer to get better. She needs me healthy in case another study opens up where I might be accepted.
Even Matt didn’t come over as often. I don’t know if my parents made him feel guilty for his part in it, or if he just blamed himself. Either way, I missed him. Yeah, he answered my phone calls and text messages, but I missed having him by my side.
If I have to spend one more day lying in bed, I think my mind is going to crack. Already, I can feel the loose marbles rolling around in my head just waiting for the slightest opening to escape and roll right on out of me. Maybe I should let them go and then chase them down to see where they take me.
Okay, now I’m just being overly dramatic. But I am bored. There had to be some activity I could do which wouldn’t overly tax me. Now that I think about it; there was the trial with the bicycle that I hadn’t experimented with. For the first time in days, I was eager to do something exciting.
I grabbed up my phone and called Matt’s number. He picked up on the second ring which surprised me more than I cared to admit. I had to tell him my plan before I chickened out.
“I’m going to try riding my bike today,” I announced with more bravado than I actually felt.
“Really? Who’s going with you? Are you sure you’re strong enough?”
Hearing the same tone of concern as my parents coming out of Matt’s mouth made my patience snap. “Look, I’m done with sitting around twiddling my thumbs. I’m hooking Charlie up to the bike and going for a ride. Alone if I have to!”
My finger was poised over the button to end the call. If he said one word of objection, then he was going to hear the dial tone. Okay, nobody heard dial tones anymore, but you get what I mean.
“Okay. I’ll be right over. Promise me that you’ll wait until I get there.”
My fingers clenched around my heart-shaped pendant so tightly; I’m pretty sure the edges left permanent indents on my hand. He was going along with my plan! This was going to happen. “I promise,” I managed to get out of my mouth without bursting into a shout of glee.
Matt hung up before I said another word. I flung the covers off of me, accidentally covering Charlie with the bulk of it. As soon as I felt him struggling to free himself, I pulled them off of him. He jumped off the bed, eager to go wherever I wanted to go.
“We’re heading outside, Charlie!” I announced proudly.
“Oh, yeah? Where’re you off to in such a hurry,” Hunter asked from my doorway.
I jumped about two feet into the air. Somehow, he had managed to sneak up on me. It was easier these days since he’d stopped wearing his horrid cologne after breaking up with his girlfriend. Now I couldn’t smell him a mile away, so he became stealthier. I’d have to pay more attention now that I was onto his new tactic for surveilling me.
“I’m going to learn how to ride my bike again. Get out your camera, Hunter; this’s going to be quite the adventure.” I snapped Charlie’s lead into place and boldly walked out of my room.
“Do you even know where the apparatus is?” Hunter asked.
“Nope, but I’m betting that you do. I’ll be waiting out by the garage. Matt’s coming over to assist.” I’m pretty sure my excitement was fueling my energy right now because I wasn’t feeling the least bit fatigued. I walked through the living room and heard my mom talking on the phone. Just as I suspected, she paused in her conversation to talk to me.
“Haley, honey. What’re you doing out of bed?” she asked, her voice tinged with worry.
“I’m going outside to ride my bike.”
“I have to go,” Mom said to whoever was on the other end of the line. I heard the phone drop onto the table, and her chair legs squeal in protest as she stood up too fast. “Haley, you don’t want to overdo it. Maybe, you should just go sit on the lawn. You like to do that, right?”
By now, she had reached me at the front door. I wasn’t about to be dissuaded from my present course of action. Instead of docilely agreeing with her, my temper overflowed. “No, Mom. If I have to spend another second in my room, I’ll go crazy. I need some fresh air and some time with my friends. If you want to watch, that’s fine, but I’m going to give this a try. After all, it was your suggestion to begin with, right?”
“Yes, but that was before…”
“Before what, Mom? When you thought I was going to get the drug trial and live? I want to live right now. Right this moment. Matt and Hunter are both meeting me outside. I’ve got to go.”
“But…” Mom weakly protested.
I walked out the door with Charlie. Behind me, I heard Hunter saying, “I’ll watch out for her.” I grinned, thinking this had actually happened better than I thought it would. Either Mom was really worried about me, or she thought this might help me because she was keeping her objections to herself for the time being.
I just hoped I didn’t fail so epically bad that she would rub it in with me later. People always said learning
to ride a bike was so easy to pick back up again. Hopefully, this would be true for me as well.
A vehicle was coming up our driveway, so I kept myself to the edge of the lawn. As soon as I heard the music playing from inside, I knew it was Matt. For some reason, I’d thought he would ride his bike over, but I was just thankful he was here at all. Who knew all I had to do was threaten to do something drastic to get people moving into action. I should have done this sooner. Well, except I really didn’t have the energy any earlier than right now.
I heard Hunter talking with Matt over by the garage. Somehow, he’d managed to sneak by me again. I was losing my touch. Charlie unerringly led me over to be with the boys. “Well; what’s the plan?”
“We’ve almost got your bike rigged up. I think Matt’s right that we should head over to the park where there’re some wide bike paths for you to practice on. Our driveway isn’t very bike-friendly, you know.”
“True. But this better not be some scheme you two have cooked up to keep me from trying!”
“We wouldn’t dare!” Matt teased, leaning over and kissing my cheek.
“Don’t try to butter me up, mister. I’m onto you.”
“I’m not up to anything except getting you ready to go. I brought over a couple of other things for you, just in case.”
“Like what?”
“Nope. I’m not sharing until we get to the park. You can ride with me while Hunter takes your bike over in the back of his truck.”
“Hmm. Okay. But you both sound suspicious to me.” I turned and had Charlie lead me to Matt’s car. I let myself into the passenger seat with Charlie on the floorboard between my feet. There wasn’t much room with him, but I preferred having him close at hand.
A few minutes later, Matt jumped into the driver’s seat and turned on the car. Immediately, the radio blasted out its tunes, practically deafening me on the spot. Almost as fast as it started, Matt flipped the radio off. “Sorry about that.”
“I still don’t know how you aren’t deaf,” I teased.
“Lots of practice, I guess. Are you sure you’re up for this? I mean, you don’t have anything to prove, you know.”
I folded my arms and refused to give him the satisfaction of an answer. He knew not to push me past this point, proving it by remaining silent and starting the car. Instantly, my mood shifted into exuberance as a huge grin spread across my face. I’m sure I seemed bi-polar, but I was tired of everyone expecting so little of me. I needed them to trust in my own judgment for once.
By the time we reached the park a few minutes later, the adrenaline was coursing through my veins. I’m pretty sure if I’d held my hands out that my fingers would be shaking like a leaf. But nothing was going to stop me from attempting to ride my bike. Even Charlie seemed more animated than usual, although he was probably just picking up on my excitement.
As it turned out, Matt’s additions to this adventure included a helmet as well as knee and elbow pads. “I’m surprised you didn’t find me a sumo wrestling outfit to cushion my entire body,” I commented as I buckled the helmet under my chin.
“Trust me; if I would’ve had more time, I would’ve gotten one,” Matt answered, chuckling at my expense.
“Ha. Ha. I’m sure I look fairly ridiculous already. Are you getting all this on film, Hunter?”
“You bet. You’re going to do great. Break a leg, kid,” he cheerfully replied.
“Dude, did you have to say that? You know what could happen to her, right?”
“Um, I’m right here boys. I may be blind, but there’s nothing wrong with my hearing. Besides, with all this protective gear, I doubt I’ll manage to even get a scrape let alone fall hard enough to break something.”
“Oh, no! Now you’ve gone and jinxed yourself!” Matt groaned theatrically.
“Enough fooling around. When’re we going to get rolling already?”
“Right now. But Haley, please don’t fight me on this. For Charlie’s sake, okay?” Matt asked, standing right beside me with his hand on my arm.
I didn’t like how this was sounding, but I also didn’t want them to pull the plug on my adventure. I nodded and said, “Sure. What do you have in mind?”
“I’m going to hold onto your bike while you go slowly. That way Charlie will get the feel of it, and you’ll begin to remember how to balance on your own.”
“Sounds great!”
“It does?” Matt asked, his tone clearly surprised by my easy acceptance.
“Look, Matt. I wanted to ride a bike today. I don’t have any desire to end up back in the hospital. I’m glad you want to help me; and to be honest, I was slightly concerned about how I’d manage without your assistance.”
“Oh, thank goodness, Haley.” Matt pulled me into a hug, his relief evident in the rush of air he let out of his lungs right next to my ear.
I patted his back in appreciation, but also because I enjoyed the return of our physical contact. This was something I missed more than I believed possible. My nervousness returned in full-force as soon as he pulled away. I knew my time was now. I’d either learn to ride or fail miserably while trying. You may have learned by now: I’m not a quitter.
We took things slowly with Matt steadying my bike like a father would hold their toddler’s bike. I didn’t care. I was outside, trying something new, and spending time with the people I loved. With each new pass, I gained confidence in my ability to balance and with Charlie’s ability to guide me away from obstacles.
And my faithful brother caught it all on film. I hoped this video would encourage disabled people all over the world to face their fears head-on and try new things. If nothing else, I wanted my life to inspire people and to make a difference in their lives. That’s what everyone wants, right?
I had no idea how our activity had drawn the attention of the people at the park. By the time I managed to do my one and only solo trek on the trail, the crowd had cheered me on. At first, the sound caught me off guard and made me wobble dangerously, but I regained my focus and kept going. I was doing it. I was riding my bike alone, and it felt amazing.
When I came to a stop at Charlie’s insistence, I felt familiar arms wrap around me. “You were amazing, Haley!” my mom praised. “I knew you could do it.”
Now she’d gone and done it; she made me start to cry. Although, these were tears of happiness because she had come to watch me. She allowed me to struggle and almost get hurt, all without uttering a sound. I’m sure it’d been hard on her, but she always had faith in my ability to do whatever I set my mind to. She just kept proving it to me all the time, and I loved her so much for it.
In order to lighten the mood I said, “Well, it was more successful than taking the goats for a walk in the park, at least.”
A second later, Mom burst out laughing. “I’d forgotten all about that. Yes, it’s true. It looks like you get to come home without a scratch. To celebrate, I think we should order Chinese takeout for dinner tonight. What do you say, Haley?”
“You took the idea straight out of my head. I’ve worked up quite the appetite tonight. How soon do you think we can get it? After all, I don’t want to fall asleep before it arrives.” I laughed like I was joking, but it crossed my mind that it was a definite possibility now that my adrenaline had given up.
“It should be arriving at the same time as we do, if we leave right now,” Mom answered.
In record time, we packed everything up and headed back home. Matt came inside with us, sitting down beside me at the table and holding my hand just the way I liked. Following our tradition, Mom passed out the fortune cookies, and I cracked mine open. I held it out to her and asked, “What does mine say?”
She took it from me and read, “Great things come in invisible packages. You will be delighted.”
Instantly I grinned and replied, “Awesome! That means they’ll cure Batten.”
“Yes, my love! Let’s pray they do,” Mom answered, her voice full of hope for my prediction.
Chapter Fourtee
n
I DON’T KNOW how he did it, but I shouldn’t be surprised; Grandpa managed to get me into another drug trial. He must have called in several favors in order to make this happen so swiftly. This one was scheduled five days from now, and it’s in California. At least I wouldn’t have to expend all my energy traveling across the country.
“Isn’t this the best news ever, Haley?” my mom asked as she hugged me tightly to her. She barely withheld her tears, fighting valiantly to keep herself together for my sake.
I could hear it in her voice and feeling through her hands where she clutched my arms. Before I could respond, my mom let go, and my grandfather took her place. He pulled me into his embrace and whispered into my ear, “I’m not going to lose another grandchild. I’d do anything for you, Haley.”
“I know, Grandpa.” I patted his back, letting him know I appreciated his efforts. My longevity was a testament to his efforts since he’d been the one to start the fundraising foundation for the research. So much good had come from it so far, and I knew my family was making a difference in the study of Batten disease.
“How are we going to have enough time to get all the testing done that I’m sure they’re going to need?” I asked as soon as Grandpa let me go.
“That’s the best part, Haley,” Mom answered. “They’re able to use the test results from your latest round. The only thing they need from you is current bloodwork once we get there. Isn’t that great!”
Wow, it almost seemed too good to be true. Already my wheels were turning, planning what I needed to pack. I must have spaced out a bit, because my mom grabbed my arm, catching my attention. “Yeah, Mom. That’s great. I’m going to go call Matt.”
Instead of waiting for her response, I turned around and rushed back to my room where I’d left my phone on my nightstand. As soon as he picked up the line, I announced, “I got into another trial. Please tell me you’ll be able to come with me on short notice.”
“How short are we talking? You know school starts soon.”
The Rift In Our Reality: A Sweet Young Adult Romance Page 9