Cerebral Palsy

The Thing About CP

For those of you who don’t know, cerebral palsy is a neurological disorder that affects movement and posture. For some, effects can be severe, but for others, it’s more mild. I’m blessed to be on the more mild end of the spectrum; for me, it affects the way I get around. I’ve used a walker and worn calf-high braces since I was little, and weekly physical therapy is routine.

I try to have the perspective that my disability is a way for me to inspire others and impact lives; it’s a platform the Lord has given me to spread His Light and Love. While that is the way I look at it, there are days when I lose perspective and end up crying, because the frustration has become too much. Like when I see my dad get ready to run, and wish I could go with him but can’t. Or when I wake up, and taking a step sends throbbing pain through my feet. Or on the days when I’m so tight, I feel like I can barely move.

But here’s the thing about CP. It is an it. It’s a thing; it’s not me. It doesn’t define me or who I am, and it may affect the way I get around, but it will not affect the way I live my life. I want to be known for lighting up a room; I want to be the reason someone’s day is brighter. I want to inspire others and make an impact, and be known for that. Not my disability.

So here’s the thing: I may have cerebral palsy, but cerebral palsy does not have me.

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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.

Uncategorized

❤The Liebster Award❤

Following Him Beside Still Waters nominated me for the Liebster Award- thank you so much!! ❤ I’m honored. “Liebster” is now one of my favorite words- it means “favorite one” or “adorable one” in German. 😊

The rules for this award are:

• Thank the nominator

• Answer the Questions below

• Nominate others

Here are my responses to the questions:

1. If you could be any animal in life, what would you be and why?

A dog, because they love unconditionally, they’re always happy to see you, they’re protective, and they’re comforting. 2. If you could write the soundtrack to your life, what would be the first three songs?

3. If your death was imminent, what would you choose as your last meal?

Chicken wings!! I love them. 😊 But more because there’s a wing place here that we go to once a week, and everyone there is incredibly kind.

4. What movie that has not yet been made would you pay good money to see?

Carve the Mark by Veronica Roth!! I LOVE the book-it’s better than Divergent, in my mind- and I’d love to see it portrayed on a screen.

5. What was your favorite age to be and why?

Fifteen! It was a year filled with joy and unforgettable experiences, but I also learned a lot and grew in my faith.

6. What is the one book that has most inspired your life?

The Bible. It’s what I turn to when I need comfort, guidance, and wisdom, and I always learn something new from it.

7. If you could live anywhere you please, without that pesky restraint called money, where would it be and why?

Gainesville, Florida. There’s something about that town that makes me feel alive, and I love it. I love the electric atmosphere, I love how kind everyone there is, and I love the passion everyone has for the orange and blue. 🔸💙🐊

I nominate:

Mama at Mama’s Empty Nest
K Marie at Lines of Lazarus

Hayley at Red Letters

JA Patterson

Alyssa at Tree Planted by the Living Water

If you could write the soundtrack to your life, what would be the first three songs?

What is the one book that has most inspired your life?

If you could live anywhere you please, without that pesky restraint called money, where would it be and why?

Where would you go on your dream vacation?

What’s your favorite thing about fall?

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.

Cerebral Palsy · My Writing

The Objects of My Past, Present, and Future

I’ve been blessed to have been accepted into a few schools, and yesterday, I applied for one of their honor’s programs. The prompt was:

Imagine that you are traveling to a foreign country. Because you want to engage with the local population, you have packed three items to help you express who you are. One item should represent your past, one should represent your present, and one your future. Describe the three items you have chosen, and how they represent you. Which item would you present as a gift to those you meet and why?”

I thought I’d share my response with you…

If I were travelling to a foreign country and had to bring three items representing my past, present, and future, I would pack the bike I spent afternoons on as a child, the walker that grants me the gift of freedom, and the pink forearm crutches I’m learning to walk with. These items represent what I want to do in life: make a difference. These three items showcase the impact my cerebral palsy has had on my life, and they’re tangible reminders that it does not define me.

My bike represents awareness. The night I first sat on its leather seat and took a hold of its red handles was the night I became aware that my disability would force me to navigate life differently. Unlike the bike my sister rode, or the ones my friends cruised down the street on, this bike had three wheels. Its third wheel was a glaring reminder that I didn’t have the balance to use a regular one, but it also taught me that I could overcome the obstacles I was faced with. I spent hours on my bike, flying up and down the street. My bike represents awareness, and it reminds me that I can beat my disability.

My walker represents acceptance. For years, I hated it. I hated that it made me stand out and that it attracted stares from strangers whenever I went out in public. But in March of 2014, when I opened my school’s diversity program with a speech about how being different is beautiful, that changed. When my speech was received with resounding applause and a standing ovation, I saw my walker-and my disability- for what it was: a platform. Now, I accept that the battle I fight has given me a platform to inspire others and touch lives, and I want to use it. I want to use my challenges to uplift someone else; I want to tell my story to encourage others. My walker represents acceptance, and it reminds me that I should be proud of being unique, not ashamed.

My crutches represent perseverance. Right now, I can’t walk with them. I can stand with them on my own, but the instant I try to walk, I lose my balance and face plant. But come May, I’ll walk across the stage at graduation holding onto their handles, not my walker’s. I’m going to accomplish my goal; I’m going to fight through the difficulty and the pain that comes with using them and walk on my own. They represent the way I have and will continue to persevere through my disability, and they’re reminders that if you work hard and never give up, nothing is impossible.

If I had to pick one object to present as a gift to the people I met overseas, I would present my crutches. Not only do they symbolize perseverance, but for me, they represent the dreams I have yet to fulfill and the lives I have yet to touch. I’ve been able to do a lot of amazing things in my seventeen years, but this is just the beginning. I want to keep sharing my story and keep reaching out to others. My crutches are a reminder to keep dreaming impossible dreams, but more importantly, they’re a reminder that no mountain is so tall that it can’t be climbed.

Faith

An Incredible Opportunity

Earlier in the week, I posted the first entry in a series dedicated to the fast-approaching release of Taylor Swift’s new album, “reputation”. My intention was to write a post about each album on its release date, but… that didn’t happen. My nights were filled with another kind of writing, as God gave me an opportunity to share my heart in a way I never could have imagined: a sermon at church on Sunday.

The weekend before last, I and a few others in my church’s youth group went on a retreat. We spent the weekend in a beautiful lake home with our youth leader and our priest. The home belonged to a friend of the priest’s, and she and her husband were wonderful hosts and incredibly kind and gracious. We were able to spend time with the Lord alone as well as discuss different aspects of the Bible as a group, and it was a wonderful opportunity to grow closer to God and one another. Towards the beginning of the retreat, as we spoke about finding God in all persons and situations, I talked about my sweet friend Kate. I shared about her incredible courage, and the way her mom has continued clinging to the Lord and trusting Him since her passing. They both inspire me so much.

A little later, our priest, who had come with us, told me that I should preach sometime. “What about next Sunday, for youth Sunday?” she asked. I told her I’d love to, but I didn’t know what I had to say that was important. “Share Kate’s story,” she answered.

I was overjoyed. I couldn’t wait to tell everyone about the little girl I love and that touched my life. So as soon as we went home, I began writing it. It was a unique writing process, unlike anything I’ve ever written before. I rode a roller coaster of emotions. One moment, I was filled with joy and excitement at telling everyone about her; the next, I felt my heart break and I fought back the tears burning behind my eyelids. I miss her. I wanted to see her again; I wanted to hug her and pray with her and get to know her. Her light was beautifully bright, and the world is dimmer without her.

But that was exactly the reason I had to give this sermon: telling her story would keep her light alive. It would give her an opportunity to have a voice and to touch even more lives. With that in mind, I said a prayer, asking that He would use my words to allow her to inspire others, and powered through the pain, eventually crafting a sermon I hope she would have loved.

Sunday morning, I preached at both our early and our late service. In the early service, as a result of nerves and trying to hold back tears, I read too quickly. But even then, people came up to me to tell me they were touched by her story, and I’d told it beautifully. I had wanted my words to capture her beauty, and their compliments let me know I’d accomplished my goal.

I spent the time between the two services practicing, rereading over my words and praying for His help in slowing down. Our priest came over and we prayed together, asking for His guidance and that I would have the strength to make it through it, one more time.

God answered that prayer, and the one I’d said as I wrote, in a beautiful way. As I finished, applause filled the room, and I was approached again and again after the service by people who told me they had been touched and inspired by what I’d written. Those words meant the world to me. I was honored that the Lord would use me to be His vessel to impact lives, and the entire experience was a reminder that every part of our lives is a piece in His plan. All I did was share my heart, and He opened a door for me to help sweet Kate make an even bigger difference.

How has He been working in your life lately?

thoughts

Countdown to Taylor Swift’s “reputation”: “Red”

I’m not sure if I’ve shared this on here, but I love Taylor Swift. Since I was a little girl, I’ve loved the way she is unafraid to say exactly how she feels about a situation. A lot of people criticize her for writing about relationships, but for me, those songs have been a source of comfort on multiple occasions. I’ve never gone on a date or had a boyfriend, but her songs are written in a way that I can apply them to my life, even if I haven’t gone through exactly the same thing she has. I’m beyond excited for the release of reputation, so I thought that in honor of its release, I’d do a blog series about each album and what it means to me, with each post coinciding with the release date of that particular album.

I was twelve when Red came out. Not long before the album’s release date, I went through something which hurt me in a way I’d never experienced before. “Red” felt like a hug in the form of an album, and listening to Taylor sing made me feel as though I wasn’t alone. “I Knew You Were Trouble” was especially comforting, as I felt as though I should have seen what was coming and blamed myself for what happened. The album and its personal and raw lyrics brought me comfort in a way nothing else did, and for that, it will always have a special place in my heart.

Top Three Favorite Tracks

Originally, I was only going to pick my favorite track off of each album, but I love every song of Taylor’s, (to me, there’s no such thing as a bad Taylor Swift song) so I decided to pick my top three instead.

“Starlight”

I LOVE this song. I love how narrative it is, and the way Taylor’s imagery is so descriptive and vivid that I can easily picture what’s happening in the song. “Don’t you dream impossible dreams?” is my favorite line, because I think we all have dreams that are crazy and wild, but we dare to dream them anyway.

“The Moment I Knew”

This song is heartbreaking and beautiful and raw and incredible. As with Starlight, Taylor writes in such a way that I feel as though I’m at her birthday party with her, experiencing what she’s experiencing. And I think it takes a lot of courage to be as honest as she is in this track. Songs like this one have inspired me to also be raw and vulnerable in my writing. Taylor’s helped me grow in leaps and bounds as a writer, and that’s another reason why I love her.

“Stay Stay Stay”

While much of this album is emotionally heavy, “Stay Stay Stay” is a tune that always makes me smile. I love the line, “That’s when you came in wearing a football helmet/And said, “Okay, let’s talk.” How adorable is that? That’s the kind of relationship I want to have one day: a love that is real, and even after fights and disagreements and the craziness that is life, he stays by my side, no matter what happens.

Honorable Mention: “Begin Again”

I could have easily put “All Too Well” here (because who doesn’t love “All Too Well”?) but I fell in love with “Begin Again” the first time I heard it. It’s a sweet melody that tells an even sweeter story, and I think it’s the perfect way to end the album with its message of hope and optimism. “You pull my chair out and help me in/And you don’t know how nice that is/but I do” is one of my favorite lines on the record. Once, when a friend of mine took me to lunch, I about fell out of my chair as he pushed me in. He’d already sat down when my fear of falling began to overtake me, and without hesitation, he got up and helped me so that I didn’t fall. He didn’t know how nice that was, but I did.

What do you love about “Red”?

What’s your favorite track(s)? Lyrics?

Let me know in the comments!

My Writing · thoughts

Why I Write

In honor of today being National Writing Day, I thought I’d share why I write.

I write because I have to. For me, writing is as necessary as breathing. It’s how I process life; it’s how I handle the crazy, wild emotions that come with being a teenager. When I’m able to lay my thoughts and feelings on a page, the weight they once laid on my shoulders disintegrates. Writing allows me to breathe and gives me a way to heal.

I write because the characters within me deserve a voice. Since I was little, I’ve had characters and storylines dancing in my head, and when I was six years old I decided it was time to set them free. I wrote my first story about the friendship between two horses (I was little) and I haven’t looked back. For a time, I wrote stories using the characters from my favorite books, but now, my characters are all my own. Often, they- and the storylines I pen- are based off of my own life, and to me, there’s nothing better than turning a fragment of my life into fiction. Usually the inspiration comes from a situation I’ve been through or a person who has touched my heart, and on the occasions when it’s the former, I feel like I’ve put a message in a bottle: “You thought nothing of this, but I did. I appreciated it. I was touched. It meant more to me than you know, and I wanted to tell you that.”

I write to tell my story. In the past few years, I’ve realized just how powerful sharing my story can be, and if I’m ever asked to speak, I write out what I want to say. I feel like I make more sense when I write than when I talk, and I think I can leave a bigger impact on an audience if I’ve been able to write out what I’m saying beforehand. Sharing my story is a big part of why I’ve started blogging: because I want to show what life with cerebral palsy is really like, and also to show that while I may have a disability, I experience life the same way everyone else does.

I write to say things I otherwise wouldn’t be able to say otherwise. I can’t count how many times words have burned in the back of my throat, but fear has kept them in. To fight that fear, I pick up a pen and write every word I wish I could say in person. Then, I can say what I need to say without fear of what the other person will think, and more than once, doing that has given me the courage to actually say the words in person.

I write to overcome my limitations. When I write, I can walk, I can run, I can play sports, I can dance. When I write, anything my disability prevents me from doing is possible. I write to be free, and that freedom is unlike anything else.

 

Tell me: why do you write?