Cerebral Palsy, Faith, Florida Gators

Jordan: My Friend, My Inspiration

Yesterday was one of those days.

I was getting ready to leave for the football game (benefits of being in Gainesville- I can go to ALL of the home games) and I was trying to get a bag to take with me. It hung on a hangar next to my dresser, and even after I raised my wheelchair to its full height, I still couldn’t reach it. As I continued trying-and failing- to get it, my frustration and anger rose. I was trying to pick up a bag. Something so simple shouldn’t be so difficult. I shouldn’t have to fight just to pick up a bag.

I could have easily texted a friend and asked for help, but I didn’t, because of the principle of the situation. Eventually, after a few more minutes and more frustration, I got the bag- but not after accidentally breaking the hangar.

It’s moments like that, when CP makes a simple task virtually impossible, that I wish I could snap my fingers and make my disability go away. Those are the moments when I hate it, when I wonder why, of all the babies born the day I was, that I was the one whose umbilical cord got wrapped around her neck. Those are the moments when I question God’s plan.

But then, I thought about Jordan.

Jordan, the girl who immediately offered to help me learn to walk with crutches when I told her it was my goal to use them instead of my walker.

Jordan, the girl who understands what I go through in a way no one else ever has.

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My friend, Jordan.

A couple weeks ago, my family and I sat tailgating outside my dorm when I saw a girl walk by, expertly wielding crutches. Even from a distance, I could see the strength and confidence she possessed. I want to be like her, I thought.

My dad noticed, too. “You could do that,” he said, nodding in her direction. “You really could walk with crutches. You should start practicing again.”

Apparently, God agreed. The next day, I saw her come in the back door. I’d been about to go into my room, but at the sight of her, I passed my door and instead made my way towards her.

“Hi,” I said. “I’m Robyn. I’m trying to learn how to walk with crutches. Could you help me?”

“Absolutely,” she said.

She spent the next half hour with me, giving me advice as I stumbled around on my crutches and tried not to bite the dust. I told her that I was having trouble finding the right rhythm- I would get ahead of myself, go too fast, and nearly trip over my own feet. “I had that problem, too,” she said. She held her crutches out to me.  “Here. Try mine.”

I did, and they were a game changer. Lighter than the ones I had been using, they were easier to pick up and put back down in time. Jordan said they’d made a drastic difference for her, too.

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Hopefully one day I can stand in the sand with crutches, too.

Come to find out, that wasn’t the only thing we had in common. She also has cerebral palsy, we’re both in the College of Journalism here at UF, and we’ve even had one of the same surgeries. God, I thought as we talked, is amazing.

Jordan is a living example of what it means to be strong. She’s had ten surgeries, and over the years, transitioned from a wheelchair to a walker to a cane to crutches. Through it all, her faith has remained strong. In fact, she even credits the surgery that went wrong as what brought her closer to the Lord.

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Jordan working hard in therapy.

Like me, she grew up bleeding orange and blue. Though she’d applied to nine schools, “as a die hard gator, once I got in (to Florida)  I couldn’t go anywhere else,” she says. The other added benefit of UF was its accessibility, a feature none of the other schools she applied to had. It made her transition to college easier, and now as a junior, she’s thriving. She’s a leader in an on-campus Christian ministry, and maintains her own blog, From3West, named after the hospital floor she was on when she started it. I’m a firm believer that everything happens for a reason, and I think God sent her to me as a gentle push to start working out and practicing with my crutches again. Jordan even said she would go to the gym with me- having gone through this herself, she knows what exercises to do and how to overcome challenges which may crop up.

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Jordan rapping the orange and blue after surgery.

With her in my corner, this journey to becoming fully independent doesn’t seem as daunting or impossible. Now, I have someone to turn to when the days are rough or when a task is difficult. I have someone to get advice from, to learn from, to get stronger with. But most of all, I have a friend I know I can always trust count on. And that is what makes cerebral palsy a blessing: it connects me with the most incredible, wonderful, inspirational people.

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I took Jordan to her first volleyball game Friday night.

Cerebral Palsy, My Writing

Who I Am

There’s a difference between the things I am and the things I have.

I have a walker that I use to get around, I have knee-high braces that give me the support I need to walk, and I have cerebral palsy, a disability which impairs movement and makes completing every day tasks a challenge. I have all of these things, but I am none of these things.

I am a Gator. From the time I was little, I have bled orange and blue. Back home, I was known for wearing orange and blue every day, despite living in the heart of Bulldog country. I didn’t care that I received daily commentary on it, with people asking if it was laundry day and informing me that I should be wearing something else- anything else. I love UF, and that love has created memories I’ll hold onto forever and relationships I will always cherish. That’s who I am. I am not my disability.

I am a fighter. From the time I was born, I’ve had to fight for what I have. I fought to stay alive for thirty days in a Pensacola hospital as a newborn. I fought to prove doctors wrong when they told my parents I wouldn’t walk, I wouldn’t talk, I wouldn’t be the young woman I am today. I fought to get here, overcoming obstacles, breaking walls, and turning a deaf ear to the people who told me I couldn’t handle the University of Florida, and that it would be better for me to take classes online. I am the girl who has jumped hurdles and proved people wrong her entire life, and that will never change. That’s who I am. I am not my disability.

I am a storyteller. From the time I was little, I have poured my thoughts onto paper, creating new worlds and bringing to life ideas that once only existed in my mind. But a few years ago, I began telling a different story: my own. I began sharing about my CP and the struggles I face, and I began to see the power that comes with being honest. Sharing my story has opened doors and created relationships that will make my dreams a reality. But beyond that, it has allowed me to do something else: make a difference. I share my story to show others that nothing is impossible and even the greatest odds can be overcome. That is who I am. I am not my disability, and it does not define me.

thoughts

The Gift of Friendship

Mama at Mama’s Empty Nest nominated me for the 3 Day 3 Quotes challenge (thank you!!!) where I share quotes I’m inspired by three days in a row. The rules are:

1. Thank the person who nominated you.

2. Post a quote for three consecutive days (one quote for each day).

3. Nominate three bloggers each day.

I nominate Following Him Beside Still Waters and anyone else who wants to participate!

My quote for today is:

Friendship is a gift, and every time I talk to you I feel as if I’m getting richer and richer.”

-Unknown

On the first day of my second semester of high school, I walked into a class where I didn’t know anyone. I was one of two freshmen in the room, and when I scanned the room, I caught sight of a senior I’d seen around campus. He’d always seemed like a nice guy, and I knew two things about him: he played baseball and he was an Alabama fan. So, naturally, I asked him about Alabama football. He answered my question, and then asked if I was an Alabama fan, too.

My response? “Heck, no. I’m a Florida fan all the way.”

His face was priceless. I’m not sure what answer he’d been expecting, but what I said wasn’t it. I’d surprised him, and then he returned the favor the next day, when I walked in to class and found him sitting in the desk next to mine.

His reason for moving seats probably had nothing to do with me, but I’ll always be glad he did. Over the course of that semester he became a friend I can always count on, and someone I know will always be there for me. He never minded helping me, and we got through the class together, an AP course that was difficult for almost everyone. I still remember what he said when I made a comment about my walker one day.

“I don’t care about that,” he said. “I don’t care about that at all.”

And he didn’t. I could tell just by the way he spoke to me. He didn’t mind turning assignments in for me, and once, when we had to evacuate the building, he got up and grabbed my walker before I had a chance to say anything. He helped me outside, staying with me until a teacher told him to keep going. Even then, I saw him turn back around to make sure I was alright.

Even though he’s in college now, we still keep in touch and get together whenever we can. When I was on the homecoming court last year, he made the nearly-hour long drive home to be there, and when I was in the hospital, he texted me every day-sometimes multiple times per day- to see how I was doing. I hadn’t seen him in a few months until yesterday, when I was walking down the hall at school and looked up to see him walking towards me.

“I had to come drop something off and I wanted to come surprise you!” he said as he wrapped me in a hug. He made my day, and the way he hugged me as if my walker wasn’t there reminded me of one of the many reasons I cherish our friendship: to him, I’m just Robyn.

Cerebral Palsy, Faith

Smile

Usually, I don’t post for the Weekly Photo Challenge-because photography isn’t my strong suit- but when I saw this week’s prompt was smile, I had to participate, because I have the perfect picture for it.

This one.

I love this picture, not only because it forever captured the moment I met Tim Tebow, but because the smile on his face reflects how I felt in that moment: pure, complete, beautiful joy.

I’ve never felt anything quite like that before. The trip to his foundation’s Celebrity Golf Classic was a surprise birthday present from a friend, who knew how much I look up to Timmy (which is how he introduced himself). I’d wanted to meet him for years, and the moment was even more incredible than I’d always thought. The kindness and warmth he treated me with made my nerves fall away, and I knew instantly that my disability didn’t matter to him. To him, I was just Robyn.

I thought the story would end there, but it didn’t. Six months later, he and his foundation granted my W15H to spend time with him. I loved having the opportunity to talk with him, and at one point, I showed him the picture my friend had taken. He loved it too, so much that he posted it on Instagram later that night.

Over the last four years, he and his foundation have done more than grant my W15H. They’ve made me a part of their family. They’re there through everything, offering prayer, encouragement, and always showering me in so much love. This past March, they invited me to their Celebrity Gala-always held the night before the golf tournament- to interview the celebrities as they entered on the red carpet. I loved it. I talked to everyone from Mark Stuart of Audio Adrenaline to ESPN’s Scott Van Pelt to Florida’s new head football coach, Dan Mullen. And when Timmy walked in and saw me, his face lit up. He made a beeline for me, coming up to wrap me in a hug as soon as we saw each other.

That night I witnessed generosity unlike anything I’ve ever seen before as I watched a crowd of around 300 people donate 1.3 million dollars to the foundation, all of which goes towards helping kids with special needs and life threatening illnesses. I was blown away. It was beautiful to see, but to me that exemplifies what makes Timmy and his foundation so special: they put smiles on the faces of millions of people, day in and day out.

Timmy posted this of him and country singer Eric Church with some of the kids he and TTF invited to the gala.

Cerebral Palsy, My Writing

Sometimes I Wonder

Sometimes I wonder what it would be like to walk independently. I wonder how it would feel to stand up straight without being overcome with fear, and what it would be like to take a step without being confined by the mold of plastic braces. I wonder, are tennis shoes comfortable?

Sometimes I wonder what it would be like to take off running, whenever I want. How would it feel to have wind fly through my hair? Would it be exhilarating? Would I hate it? Would I feel like I was flying? Would I feel… free?

Sometimes I wonder what it would be like to be able to play sports. I live and breathe them- I wonder what it would feel like to be able to play. What would it be like, to run out of a tunnel surrounded by my teammates? What would it feel like to score the winning points in the final seconds of a game? What would it be like to be a part of something that means… everything to me?

Sometimes I wonder who I would be if I didn’t have cerebral palsy. Would I like the same things? Who would I be friends with? What experiences would I have? As much as I wonder and as much as I want to know the answer to those questions, the bottom line is this: without my disability, I wouldn’t be the same person. I wouldn’t have met the same people and I wouldn’t have done the same things. My disability has opened doors and given me experiences I otherwise never would have had, and it’s led me to people I love dearly and am beyond grateful for. Without my disability, I wouldn’t be… me.

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.

Florida Gators, Sports

More Than Just A Game

This morning, prior to Oklahoma’s Rose Bowl matchup with the Georgia Bulldogs, ESPN’s College Game Day aired a segment on Oklahoma QB’s Baker Mayfield’s relationship with Mackenzie Asher, an eleven year old battling cancer. As I watched the way he interacted with her and heard the love in his voice as he talked about her, I was reminded of what it is that makes sports so special: the way they allow people to connect with others and make a difference in the lives of so many. Tragically, Mackenzie passed away recently, and when he heard the news, Mayfield reached out to her family and told them he would be at her funeral. I love what he said there: “I’ve been able to meet a lot of special people, but I’ve never fallen for someone as fast as I fell for her…. we’re going to dedicate the rest of our season to Mackenzie.” The segment made me view him differently, and it made me fall in love with sports all over again.

I couldn’t help but think of times in my own life when sports have encouraged me and helped create relationships in my life that I’m beyond grateful for. While I was in the hospital, the University of Florida’s volleyball team was playing in the NCAA tournament. I watched every game on a laptop, and for the duration of the match, I forgot where I was. At a time when nothing felt normal, cheering on our volleyball team made me feel like myself. Because while I may not be watching where I normally did, my love for our team hadn’t changed. They were a source of encouragement and strength, because as I went through rehab, I kept thinking about how hard they had worked to get where they were. They were my motivation. But more than that, I’ve met a few of our players and coaches, and they’re all incredibly kind and amazing people. If I was ever having a rough day, I would think back to the time I spent with them, and I would have the strength and encouragement to keep going.

Florida’s volleyball team exemplifies what’s so amazing and special about sports: they give people a platform to leave a mark in the lives of others that can never be erased.

Faith

Ascending Mount Kilamanjaro

A few months ago, I shared about Alexis, a friend of mine who is climbing Mount Kilimanjaro for the Tim Tebow Foundation. She’s been planning her climb for over a year, tirelessly fundraising, training, and preparing so that when she begins to climb in February, everything goes smoothly!

To help fund her climb, Alexis entered the #ChipStarter contest, a contest sponsored by Chip and Joanna Gaines from Fixer Upper. They invited contestants to submit videos explaining their dreams; Chip and Joanna would then select three finalists to fly to Waco and pitch their dreams to them in person, and from there, they would pick one winner and invest in their dream. Alexis made a video explaining why TTF and her climb were so important to her, and then, the waiting game began. I think I was just as nervous as she was…. so you can imagine my excitement when she texted me and told me she’d been selected as a finalist! You can read all about her experience as a finalist in Waco here. (I won’t spoil the ending for you. 😉)

Earlier today, TTF shared about her climb on their social media platforms, and I wanted to share it with you, in hopes that you’ll be as inspired by her story and her dream as I am. Alexis is one of the kindest people I know, and has such a beautiful heart. No matter what I need, she’s always there, and is a complete ray of sunshine. Her faith is so strong, and she has an amazing heart for serving others and serving the Lord. It’s been such a blessing to be a part of this journey with her and help her as she fundraises for the climb, and I have no doubt that not only will God use it to help TTF, but He will use it to bring others closer to Him and demonstrate that with Him, no mountain is too tall to be climbed.

To learn more about why Alexis is climbing and see her speech to Chip and Joanna, visit this link. You can donate to her fundraiser if you wish, and also read part of a poem I wrote about how faith, hope, and love move mountains!

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.