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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Urban Meyer’s Legacy Through My Eyes

Like most of the country, I was shocked to open my Twitter feed Tuesday morning and see that Ohio State head coach Urban Meyer is retiring from coaching following their Rose Bowl matchup against Washington January 1st. I’d read reports which speculated that would happen, but after Ohio State finished sixth in the final College Football Playoff Rankings, I thought for sure he would give it one more go, coaching one final season with the Buckeyes in 2019 in an attempt to win it all, one more time.

Urban Meyer has been a part of college football ever since I’ve been watching it. He was the first coach I watched lead my beloved Florida Gators, and the teams he put on the field helped create my dream of coming to school here. Year in and year out, we were successful, winning countless games and consistently performing at the highest level. Our players were constantly winning awards and achieving other prestigious accolades. Even as an eight year old, I knew I wanted to be that way, too.

“Well, how do you think he does it?” my dad asked. “He’s successful because he works hard and he pushes the team to be the best they can be, every day.”

Knowing I looked up to him, my dad began using Coach Meyer as a source of motivation as I went through physical therapy and the other daily challenges cerebral palsy brings. “Robyn, if one of Florida’s players put in that kind of effort, do you think Coach Meyer would put him on the field?” he would ask. If the answer was no, then I knew I needed to work harder.

The first season without him as our head coach was just… weird to me. Urban Meyer as head coach of the Florida Gators was all I’d ever known, and it took me a while to grasp the idea of someone else being in charge. Growing up, I thought winning national championships every other year was just a thing teams did. I soon learned that was not the case, and I realized that what he had done in Gainesville was special. When I met him a couple years later, I found out that Urban Meyer himself is beyond special. He’s one of those people you meet and never forget about, no matter how many others’ paths you cross.

For my fifteenth birthday, one of my friends surprised me with tickets to the Tim Tebow Foundation’s Celebrity Golf Classic. Held annually, it’s a fundraiser where Tim and his friends take on the course of TPC Sawgrass, and all of the funds raised go towards supporting the foundation’s outreach initiatives. Most of the celebrities I met that day took a picture and kept going, but not Coach Meyer. No, he walked up and wrapped me in a bear hug, going on to compliment the Gator stickers I wore on my leg braces and taking time out of his day to talk with us. It was evident to me within moments that he is a father before anything else, and I believe his success can in part be attributed to that. In believing in his players and treating them like they’re his own, Coach Meyer enables them to believe in themselves, which in turn allows them to reach heights they never thought they could.

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I’ve gone to the golf tournament every year since, and one of the highlights every year is seeing Coach Meyer. He’s so much more than a lot of people think he is. He’s funny, for one thing. “Haven’t you ever heard of sunscreen?” he asked one year, when I was burnt to a crisp. And I learned the hard way not to say the name of Ohio State’s rival. After hearing me say it twice, he had had enough. “You say that word again, you’re doing push ups,” he said, serious as could be. “They are the Team Up North.” To this day, I call the team that shall not be named The Team Up North, and correct anyone who does otherwise.

He’s also extremely kind and caring. Last year, I had surgery and spent three weeks in the hospital. When Coach Meyer found out where I was, he picked up the phone and called me, just to find out what was going on and make sure I was alright. I was so excited that my heart rate sky rocketed, topping off at 167 and making the nurses think something was wrong. On the contrary, that phone call gave me more joy than I’d had since my hospital stay began six days earlier. It was classic Coach Meyer. He cracked a few jokes-according to him, my dad is nuts and my mom is the “more normal” of the two of my parents- but most of all, he showed me love. When I answered his call, the first thing I noticed was how concerned he sounded- like a worried father checking on his child. But what stuck with me the most was what he said at the very end: “Send me a text every couple of days and keep me updated. I love you. I’ll be thinking about you.”

So I did. Once a week, I’d send him a quick text and let him know how I was feeling and what was happening in my world. And he texted me back, every single time. Always, he encouraged me. “You’re awesome! Keep swinging and you will prove her wrong!” he said, when I told him a therapist had said I would be confined to a wheelchair for a few months. And sometimes, he teased me. “Send me your address- need to get you some Buckeye gear! See the Gator stuff!” he responded, after I was wearing a Florida shirt in a video I sent him. I texted him my address, and sure enough, a package showed up on my porch not long after that. It was filled with Ohio State gear and a copy of his book, Above the Line, written about the principles behind how he motivates his players.

What is Urban Meyer’s legacy? A lot will be made of that question in the coming months, but to me, the answer is simple: love. His legacy is one of love. Love of college football, love of his players, love of his family, and love for our Lord and Savior, Jesus Christ. Through that love, he made a difference and cemented himself in the history books, as a man who pushed himself to the limit and changed the lives of thousands in the process.

Cerebral Palsy, Faith

The Power of A W15H

I still remember where I was when my mom told me.

I was in our kitchen, staring at my computer screen, trying to make sense of an email. I was so focused on what I was doing that it took a moment for her words to sink in.

Tim Tebow’s foundation is granting your wish.”

Okay, great. They were- what?

I spun around in my chair to stare at my mom. “They are?”

When she nodded, I sat back in my chair, overcome with shock, disbelief, and complete excitement. For years, I had read articles about the Tim Tebow Foundation’s Wish 15 program. Through it, they make dreams come true for children with life threatening illnesses who want to spend time with Tim. Once, I came across an E:60 episode about Dylan, one of their W15H kids who has cerebral palsy. I watched it, overcome with amazement at Dylan’s story and blown away by how Tim and the foundation rolled the red carpet out for him. As it ended, I turned to my parents. “We could do that.”

Now, we were going to.

TTF Post

For years, I had looked up to Tim Tebow. My admiration had less to do with his accomplishments on the field and more to do with the way he achieved them. Never once did he complain about adversity or critics. And he always gave his all, whether he was running for a first down or preparing for the NFL Draft. His work ethic and determination inspired me as I went through physical therapy, Botox injections, and the numerous other challenges cerebral palsy brings. More than that, though, I loved how outspoken he was about his faith. He always gave glory and praise to God, regardless of the situation or what others might say about it. He quickly went from my favorite Florida player to my inspiration, and it was my dream to one day meet him and tell him that. Little did I know, God was going to turn that desire into a relationship I will always treasure.

My W15H weekend was everything I’d imagined and more. My family and I had dinner with Tim, were given a VIP tour of the College Football Hall of Fame, were Tim’s guests at SEC Nation-the SEC Network’s travelling pregame show- and took in the Alabama-Georgia game. It was such an incredible experience to be able to spend time with Tim, who is every bit as kind in person as he seems to be on TV. He and his foundation went out of their way to make me feel loved and special, and they treated my family and me as if we were the celebrities. It was a weekend I’ll remember for the rest of my life.

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One of the things that is so special about TTF to me is that they do more than just grant a W15H: you become part of their family. Since my W15H in October of 2015, the foundation has stayed in touch with us, continuing to keep us in their prayers and sharing faith, hope, and love with us however they can. Sometimes, that means sending encouraging Scripture; other times, it means creating more magical weekends for us, which is what they do every March when they welcome their W15H families to the annual Celebrity Golf Classic for a reunion. And through TTF, I have met countless people who are genuinely compassionate and kind- people I will always cherish and be grateful for.

2018 Gala Group Photo

At the 2018 Celebrity Gala with Tim, Eric Church, and a few of the amazing people I’ve met because of TTF.

A W15H is so much more than a weekend trip. It’s a time for God to shine, the beginning of friendships that will last a lifetime, and it’s a reminder that even the most challenging circumstances can yield the most beautiful blessings.

Timmy Hug 2018 Gala

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.

Sports

The Urban Meyer I Know

Urban Meyer has dominated sports headlines today as reports have surfaced that he knew about the domestic violence allegations against wide receivers coach Zach Smith. In wake of these headlines, and Meyer being placed on administrative leave, I would like to share my thoughts on Ohio State’s head coach.

He is one of the kindest people I’ve had the privilege of meeting.

I first came in contact with him at the age of fifteen, when I attended the Tim Tebow Foundation Celebrity Golf Classic. I was watching from the tee box of the sixteenth hole. He was the last golfer to come to the hole that day. It had been a long day; sun beat down hotly before turning into a rain shower. I was nervous to meet him- I’d watched him coach for years, and the way he pushed his team to success served as my motivation as I went through the numerous challenges cerebral palsy brings.

The first thing he said to me? “I’m going to give you a big hug.” And then he did exactly that.

Because of my disability, I need help standing, and he didn’t hesitate to give me support as we took a picture. He complimented the leg braces I wore, and the kindness and warmth he treated me with immediately put me at ease. As we talked, one thing struck me above anything else: more than anything else, he’s a father.

A year later, I saw him again at the Celebrity Golf Classic, when the foundation invited me to speak at the Celebrity Gala. My father was with me, and not long after I spoke, left the room momentarily. What he told me when he came back blew me away: I just talked to Urban Meyer. He said he remembers you and he’s going to come talk to you.”

Sure enough, I looked up a few minutes later to see Coach Meyer heading towards me, with his wife right beside him. When he saw me, he pumped his arms in the air, a smile crossing his face. Once he was close, he reached out and pulled me into a warm hug before pulling up a chair and taking a seat across from me.

He and his wife stayed and talked with me for at least thirty minutes. They were incredibly down to Earth and sincere. Coach Meyer joked with and teased me as if I were his own daughter, and the conversation I had with he and Ms. Shelley is one of my favorite memories from that night.

He’s always been like that. Each time I see him, he goes out of his way to give me a bear hug, and talk with me, regardless of what else is going on around us. He wants to know how I’m doing, and it’s obvious to me that his interest and care is genuine. Last March, when I told him I liked a wristband he was wearing, he took it off and gave it to me, without hesitation or a second thought.

Urban Meyer is more than the news headlines circulating about him right now. He’s a man of faith who genuinely cares about the people around him and wants the best for them. There is more to this story, another side that hasn’t been told yet. And while I don’t know what happened in Columbus, I do know that Urban Meyer has touched the lives of a lot of people, including mine.

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.

Cerebral Palsy, Florida Gators, thoughts

Where Gators Live

It’s beginning to feel real.

Earlier today, I moved into my dorm at the University of Florida. As I sat looking around at the tubs and boxes strewn about the room, I began to envision my freshman year. Watching football games at the Swamp on Saturdays. Going to volleyball games on Friday nights. Meeting new people, making new friends, and creating memories I’ll ultimately carry with me for the rest of my life.

My dorm highlights one of the things that makes UF special: its accommodations for those with disabilities. The dorms on my floor are completely handicapped accessible. All of my furniture will be adjusted so I can reach it, a tablet controls the lighting, thermostat, and shades, the bathroom is open and comes equipped with grab bars, and there’s a lift in the ceiling I can use to move around the entire room independently. Initially, I thought the lift would carry me, but I found out today that it would allow me to walk without using my walker. Two pieces sit snugly on my sides, lifting me up and easing the weight off my feet, thus allowing me to move freely. Now, instead of having to ask someone to get me a drink, I can get it on my own. The device will provide me with a sense of independence I’ve never had before, and who knows what that will enable me to do in the future?

Also in my dorm are two “bang bars”: vertical bars that perform the same function as the round handicapped buttons often seen outside stores and other public places. These, however, are more sensitive- all it takes is a tap of my pinkie and the door swings open. They’re everywhere- there’s one for my bathroom door and the door to the hall, one outside my room that I can use to get in, and they’re even inside the elevators. There’s one bar for each floor, and a bar that will open the elevator from the outside. Opening doors has always been a challenge for me. Doing so takes all my strength and effort, and even then, I still need assistance. But with these bang bars, I can go wherever I want to go with a tap of a finger. They may seem simple to someone just walking by, but they give me a special gift: freedom.

Dorms like mine must be everywhere, right? Wrong. UF is the only school in the southeast with this type of complex; the next closest is in Indiana (where it is entirely too cold). Several schools I toured weren’t options for me because they didn’t have the accommodations I needed to be able to go away to school on my own. Someone who knew this asked me once, “So if you weren’t going to Florida, where would you go?” And that’s the thing: I wouldn’t be able to go. I would be stuck at home, taking classes online. I’ve said this before: the effects of my disability are purely physical. It doesn’t affect my intelligence, and quite frankly, I think it’s sad that Florida is the only school with these kinds of accommodations. It’s the twenty-first century. An accessible university shouldn’t be a needle in a haystack. It should be as common as handicapped spaces in a parking lot.

Cerebral Palsy

The Power of My Hands

Physically, my hands aren’t strong. I struggle to pick up a penny with my left hand, and a therapist told me once my right hand is only half as strong as as the average eighteen year old.

When she initially told me, all I could think was that my parents were right: I had a lot of work to do. Once again, I felt as though my weaknesses had been brought to the forefront. But looking at it now, I can’t help but think that therapist was wrong.

My hands are the strongest part of my body. From them comes beauty in the form of prose and poetry; out of them pour my thoughts, my emotions, my fears, my dreams. They carry the key that fits the lock of my life. When I have a pen, anything is possible.

With a pen, I can create new worlds and bring ideas to life. I can bring people to tears and move their hearts in such a way that they feel compelled to put good into the world. I can create smiles, I can change someone’s day, I can form a connection between two people that otherwise never would have existed. Because of my writing, people have come into my life who mean the world to me and I’ve made memories I’ll cherish forever. Without the dynamic duo of my hands and my heart, my life experiences and the very person I am would be vastly different.

My hands might have physical weakness, but they are strong. They’re just strong in an unconventional way.