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

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

Cerebral Palsy · Florida Gators · My Writing · thoughts

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.

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.