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.

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.

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.

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.

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.

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.

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.

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.

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.

I took Jordan to her first volleyball game Friday night.

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.

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.

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.

A Letter to the Little Girl Who Is Just Like Me

Right now, you are little, with cool AFOs (a sophisticated name for leg braces) and a smile that shows the spunk you carry inside of you. Despite the obstacles you face, you have a zest and love for life that will enable you to touch the hearts of everyone you encounter.

When I saw your picture on my Twitter feed the other day, I couldn’t help but be reminded of what I was like as a child. I too had blonde hair that I wore up in a ponytail, and I also wore AFOs- although yours are cooler. And just like you, I have parents who went above and beyond to make sure I was included in everything we did. Sometimes that meant parking in a handicapped parking space so I didn’t have to walk as far; other times, it was carrying me so that I could be a part of our Ruby Falls excursion. I saw myself in you, and ever since I saw your bright smile, there are a few things I’ve wanted to tell you.

One. You are beautiful just the way you are. Yes, your wheelchair and AFOs make you stand out, but that’s okay. They will enable you to make a difference. Your cerebral palsy has given you a platform to make this world a better place- don’t be afraid to use it. Share your story. Talk about the struggles you face, but also speak of the blessings you have because of your disability. People need to see that being disabled is not something to be sad about or sympathetic over, and you are the perfect person to tell them. Share your story boldly and honestly, because it needs to be heard.

Two. People are going to stare. Should they? No. Will they anyway? Yes, as much as you wish they wouldn’t. Don’t let their eyes break you or make you feel like you are less than they are. You aren’t. You are strong and courageous and unique, and if they don’t see that, it’s their problem, not yours.

Three. There will be occasions when people interact with you without seeing you. Like the people who stare, they will see the equipment you use and the condition that sets you apart. I want you to remember that your cerebral palsy sets you apart in the best possible way and that you are not a hindrance or a problem. Please don’t ever think that, and please don’t ever let their words hurt you the way that I let them hurt me. They don’t deserve space in your mind, and they definitely don’t deserve a place in your heart.

Four. You are living in a world that is not built for you, and you will come across challenges on the daily. Some days, you’ll be able to handle them with poise and grace, but other days, you will scream and cry and wonder why in the world you have to deal with all of this, when thousands of children are born every day without complications. And that’s okay. Your tears don’t make you weak. In fact, letting your emotions out instead of hiding them actually makes you strong.

Five. Yes, it’s hard, but along with the difficulty will come adventures and open doors that otherwise never would have existed. Your cerebral palsy will bring people into your life who will come to mean the world to you. When you’re having a rough day or wishing you could make everything go away, remember them. Remember how special they are and how much they believe in you. Their love will carry you through.

Six. If your journey is anything like mine, going to college will be a battle. You’ll have to spend hours on the phone, make a few spontaneous road trips, and explain to a few people that you got into your dream school and you are going, regardless of what they think you should do. There will be people who tell you that you can’t do it and that it would be better for you to take classes online for a semester. Don’t listen to them, and don’t give up hope. The same day you sit in your journalism teacher’s room and cry because it isn’t going to work will be the same day it does. Suddenly, the walls you’ve been hitting will come crashing down, and you’ll watch with amazement as everything falls into place. Follow your dream. You deserve to live it.

Seven. I keep saying “your cerebral palsy” because that’s exactly what it is: yours. Own that. Be proud of it. Yes, you are different. That’s a good thing. It will enable you to break barriers, blaze a trail, and make the kind of impact others only dream of.

Remember that you are special, and keep your sights set on the stars- they’re your only limit.

With love,

Robyn

Either

She asked me

If I was going to wear my wristband in Gainesville

I said,

“Yes I am. They can deal with it.”

I may bleed orange and blue,

But it’s not the only university with a special place in my heart.

He’s a part of my life,

And I have no intention of hiding it.

You see, it brings a bigger issue to the forefront:

UF accepted me.

All of me.

My fears,

My hopes,

My scars,

My dreams.

And they made me realize something:

People either accept me,

Or they don’t.

They either understand that I have a passion for sports,

Or they’re not true friends.

They either handle the fact that I use a walker,

Or they’re not people I want to be around.

They either accept that my cerebral palsy has built me into who I am

Or they don’t deserve a place in my life.

Beauty Exists….

The Tim Tebow Foundation posted this when they announced my W15H, and I thought I would share it for today’s blogging quote challenge. 🙂

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.

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.