Cerebral Palsy · thoughts

Worth It

I’ll be honest: I have a lot to do before I’m fully independent. A lot. And when I went to bed last night, I was feeling really overwhelmed by it. A good night’s sleep didn’t take that feeling away. Unshed tears were a weight on my chest and I took a breath, trying to breathe through it as I wondered how I was going to climb this mountain.

Suddenly, that pain morphed into a quiet resolve to overcome this obstacle. I have to- I got in to my dream school, and I’m not going to lose the opportunity to live my dream. Will it be easy? No. Is the University of Florida worth it? Absolutely.

I think part of the problem is I’m trying to ascend the entire mountain in one day, and that isn’t possible. I’ve got to take it one day at a time and learn to not be frustrated with myself when I can’t do something immediately. I’m a perfectionist, so when I try something and fail, I beat myself up about it. Why I do that, I don’t know, because whenever one of my friends is trying something new or struggling with a class, I always remind them to do what they can today and be easy on themselves. It’s time I take my own advice.

I can do this. I know I can. I just have to work hard, go day by day, and remember that when I reach mountain’s summit and I’m living in Gainesville, it will be worth it.

Cerebral Palsy

Chasing Dreams

It’s the little things that matter.

For years, my mom has put my hair in a ponytail for me because due to my cerebral palsy I didn’t have the range of motion in my arms to do it on my own. Thanks to a surgery I recently had, I’ve gained more strength and range of motion in my arms, and on Sunday, I decided to figure out how to do my hair on my own. I’d just gotten accepted to the University of Florida, and I knew that was one thing I had to be able to do on my own if I want to go. So I went into my room, shut the door, and tried to do it. It wasn’t easy. My arms are still tight, and after a few minutes, I could feel fatigue in my muscles and had to stop. But I’d figured out how to get my hair through the elastic once, so at least that was progress.

I’ll be honest: I was exhausted last night and didn’t feel like doing anything. But then I thought about how amazing it would be to go to the O Connell Center to cheer the volleyball team on and how incredible it would be to say, “I go to my dream school” and knew I had to stretch and work out anyway. I slipped the hair tie on my wrist and tried again, knowing I was close and I’d figure it out eventually.

And you know what? I did it. It was a loose bun and definitely nothing I’d walk out of the house in, but I’d put my hair up on my own, and that was all that mattered. I was one step closer to Gainesville in the fall and the Swamp on Saturday afternoons. I was one step closer to my dreams.

Figuring out how to be totally independent won’t be easy, and I still have a lot to figure out. But Florida is worth it. My dreams are worth it. And I’m getting to Gainesville in the fall, no matter what it takes.

Cerebral Palsy

What Blogging Means to Me as Someone with a Disability

I’ve never reblogged a post on here before, but I found so much truth in what Amelia wrote that I had to share this. She does an incredible job vocalizing what life is like for someone with cerebral palsy- a much better job than I do- and this post is no exception.

Like Amelia, I’ve always found writing to be an escape. Because when I write, the limitations I have don’t exist, if I don’t want them to. And for years, that’s exactly how I wrote stories. I would write a story using characters from my favorite books and then insert myself. The version of me I wrote about didn’t use a walker, didn’t have a disability, and could do whatever she wanted, without having to wonder how, exactly, she was going to do it. But then, in sixth grade, I came up with a storyline about a girl who has cerebral palsy, and how the love around her helps change the way she views herself. I didn’t start writing it until about a year later, and instantly, I was struck by how freeing it was to write about a girl who goes through exactly the same things I do. That story is still a work in progress, and writing it is still as cathartic now as it was then. My dream is to one day publish it, and share my character’s-and my- story with the world.

This blog is cathartic, too. It’s amazing to write a post about something I’m experiencing and get words of kindness, love, and support back. It’s comforting and encouraging, and I’m so grateful for each of you who read, like, and comment on my post. Thank you for embracing me with opening arms, and thank you for listening to my story.

Without further ado, here is Amelia’s post:

What Blogging Means to Me as Someone with a Disability

Cerebral Palsy · thoughts

My War With Technology

For Christmas, my parents gave me a Google Home Mini, so that we can sync a lamp to it and I can turn lights on and off on my own, without having to wait for one of my parents to come in and do it for me. I was excited by the way it allows me to be more independent, and I spent much of yesterday marveling at how far technology has come and the amazing things it can do. But then, this morning, my father and I were having a conversation and Google randomly began giving us NFL scores. We hadn’t asked for them. We weren’t even talking about sports. It creeped me out a little, and it made me wonder, When is enough enough?

Technology can do amazing things. It can give someone a voice, it can save a life, and in my case, gives me independence and aid I otherwise wouldn’t have. For example, when I was younger and needed my mom’s help in the middle of the night, I would call her name again and again and hope she would hear me. But now that I have a cell phone, I can pick it up and call her, and have peace of mind knowing that she’ll see it and answer. And the technology I saw when I was in the hospital was amazing. During rehab, I used a Functional Electrical Stimulation bike which fired muscles for me that I didn’t know how to use. While I pedaled on the stationary bike, electrodes on my arms and legs would stimulate my muscles for me, strengthening them more quickly than I ever could without it.

But then, there’s the other side of technology, the side that I feel is overtaking our society. So often, we spend time on our phones instead of talking with one another. I’m guilty of it. The first thing I do when I get to lunch is pull out my phone to check my text messages and other notifications. Email has replaced the art of letter writing, and more people read the newspaper online than holding a physical paper in their hands. Yes, it’s convenient and faster and gives us instant gratification, but… is it truly necessary?

And I have to wonder: with all of the technological and scientific advances we’ve made, why haven’t we found a cure for cancer? Why haven’t we found something to treat AIDS or discovered what causes Alzheimer’s? I don’t understand, and my heart breaks for everyone affected by illnesses and disabilities that can’t be cured. We’re smart enough to cure these. I know we are. We’ve got the technology and science to do it- we’ve got to make that a priority. Who cares about a newer model of the iPhone when a little girl is fighting for her life in a hospital room?

I’m not saying technology is bad and I’m not saying I don’t use it too much. It’s not and I do. What I’m saying is we need to learn boundaries with its usage and harness its power to help, not be a distraction. It has the ability to change so many lives and solve so many problems- but only if we use it the right way.

Cerebral Palsy · Faith

Appreciating the Little Things

I had surgery about a month ago, and it’s made me put things into perspective and be grateful for things I’d once taken for granted. Spending Thanksgiving at home, for example. My family and I spent the holiday in the hospital, and it made me realize what a blessing it is to spend holidays at home. Now, as Christmas nears, I find myself thinking about all of the kids who are still there, and it breaks my heart that they won’t be in their own home to celebrate the holiday.

I had to lay flat on my back for the first week after the procedure, which made me grateful for something else I’ve always taken for granted: being able to feed myself. Since I was completely flat, I couldn’t take a bite without dropping the food. My parents, bless them, good naturedly fed me for a week. The day I was able to sit up and eat breakfast on my own was a wonderful day, and I’ll always be grateful for the ability to feed myself independently.

Not being in pain. For the first few days after the procedure, every breath I took was painful. And once I was able to sit up, I felt a stinging pain in my hamstrings, because laying flat had stretched them in a way they’d never been before. But I’ve got to stretch somehow, right?

Walking. I’ve made countless comments on how I wish I could walk without the walker, but now that I have to use a wheelchair, (just until I rebuild my stamina) I’m grateful for it. It allowed me to get around without assistance, and I miss being able to walk with my family and friends. I can walk a little with my walker right now, but I can’t go very far without being exhausted. My goal is to be back in my walker by the time school starts, because I sort of feel… trapped in the wheelchair.

My family and friends. My family stayed by my side the entire time, and made the hour drive from our house to the hospital every day. They kept me encouraged, they kept me laughing, and made a difficult ordeal much easier. And I was so touched by the way my friends texted, called, and visited. They were right there for me the entire time and wrapped me in light and love.

The journey was a little different than we’d expected, but the Lord carried us through it and surrounded us with people who were so kind and generous and selfless. My mom’s coworkers made us meals, a family friend froze a Thanksgiving turkey for us, my AP Literature teacher brought me lunch and checked on me every day to see how I was doing, and the doctors and nurses took such good care of me. My recovery isn’t over yet, but I know with His love and the love of the people around me, I can make it through it.

What little things do you appreciate this holiday season?

Cerebral Palsy · Faith

Perfect Love Casts Out Fear

Moments ago, as I sat trying to focus on the music I’m listening to, this verse came into my mind. I clung to it, trying to find comfort in its words and in His promises and love. I’m having surgery Monday, and I’m going to be completely honest with you: I’m as nervous as I can be.

Everything’s fine. This procedure is to help me get around better and improve my quality of life overall, and it’s had miraculous results for others I know with cerebral palsy who have also had it done. I’m excited to see how it will help me, but as Monday creeps closer and closer, the more nervous-and somewhat afraid-I become. Questions race through my mind:

How much pain will I be in?

How will I feel after it’s done?

How difficult will recovery be?

And on and on and on. I haven’t been sleeping the last few nights, because I wake up and my mind instantly begins to spin. I alternate between completely trusting Him and feeling a wave of nerves overtake me. But it’s like a family friend once told me: Prayer is the bridge between panic and peace, so I try to just pray through the panic and the worry. Sometimes they’re well thought out, but other times-like moments ago- they’re spontaneous thoughts: “God, I’m terrified. Please take this fear away. Please drown me in Your love so completely that I can’t feel anything else.” And as I pray and pour my heart out to Him, I think about the ways He’s already been so present in this process. Having my path cross with the friend who told my family and I about this procedure. Guiding us to doctors who are kind and wise. Letting me know that this is the right thing to do, even though it scares me. Surrounding me with family and friends who will stay by my side throughout the entire thing and who have and will continue to cover me in prayer. The entire thing has happened in such a way that I know He has His Hands in it, and I know He’ll continue to hold me and carry my family and I through this. His love is stronger than my fear, and it’s like Hillsong UNITED says in “Oceans”: He’s never failed, and He won’t start now.

Cerebral Palsy · Faith · thoughts

The Two Sides to Cerebral Palsy

I came to the realization the other day that there are two sides to cerebral palsy: the side that is beautiful, and then the side that’s ugly.

Lately, I feel like I’ve been living in the ugly side- the side that’s filled with anger and frustration and tears and pain. So often lately, I find myself wishing I could snap my fingers and change all of this. I’d get rid of the walker, fix my bent knees, and be able to live independently, without any assistance whatsoever. So often, I try to do something myself and am overcome by anger and frustration. I’m angry at myself for not being able to do it, and frustrated for the same reason. I feel like my disability is a chain that’s confining me and holding me back, and I hate it. I hate that things are so hard and frustrating, and I hate that I have to jump so many extra hoops to be able to go away to college. So often, I’ve found myself questioning God’s plan and wondering why I have to go through all of this. That’s the side I try to hide; I push it in and hide it behind smiles and encouragement.

But then, there’s the beautiful side of my CP, the side that gives me a platform to be an inspiration and make a difference. I saw that side last Sunday, when I gave a sermon about my sweet friend Kate. People came up to me and thanked me for sharing her story, which reminded me that this is about something bigger than myself. It’s the side I see whenever I’m with Tim Tebow, because he always makes me feel so special. I talk about him all the time-all the time- and I realized the other day that that’s why: because he and his foundation put the beautiful part of my disability at the forefront of my mind instead of its outskirts. And it’s what I was reminded of today, when I watched the amazing video of a boy with CP score a touchdown. He reminded me that no matter how hard or frustrating it gets or how much I hate it, God’s got a purpose for me and my CP. He’s going to use it for good; He’s going to use me to spread His light and love, which is all I want to do. I want to shine for Him. I want to be His Hands and feet. So when the tears flow and the frustration is overwhelming, I have to take a deep breath, say a prayer, and remember that God is in control… always.