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.

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.

Bible Verses · Cerebral Palsy · Faith

Giving In, and Gaining Freedom

For years, my parents and therapists have tried to convince me to use a wheelchair around the house and for longer distances. “That way, you can carry things, you won’t be afraid to fall, and you won’t be worn out and exhausted by the time you get wherever you’re going.” And for years, I’ve fought them, because I feared that if I began using a wheelchair, I would lose my strength. But more than that, in my mind, to use a wheelchair was to relinquish the independence I did have, and I was not about to give that away.

But then, last weekend happened. My family and I went to Gainesville for UF’s homecoming weekend, and there, God showed me two things: in order to navigate that campus, I’ll have to use a wheelchair, and He showed me that He’ll use me and my disability to bring honor and glory to Him.

I spent the morning standing at SEC Nation, taking in the sights and sounds of the pregame show. As much as I loved every second of it, before long, my legs and feet began to ache. It’s a two hour show, and by the time it ended, the pain had become much more intense. However, my family and I had planned to go to the Gator Walk (which was a nice hike from where Nation had set up) and there was no way I was missing that. So I pushed through the pain and walked. The Lord used that trek to show me just how amazing He is.

At one point, a young woman complimented my Florida shirt. Her kind words brightened my day and distracted me from the pain. I thanked her, grateful for the compliment. Not long after we arrived at the Gator Walk, she came up to me again, and asked if I was Robyn. When I said yes, a huge smile crossed her face. She told me she’d heard my story through the Tim Tebow Foundation, and that I was an inspiration. I was touched and blown away. I told her thank you, thinking that those words didn’t come close to expressing how much that meant to me. She had no idea how many times in the last month I’d broken down and cried because I felt so defined and frustrated by my disability and the things I couldn’t do. So many times I’d felt like my CP was a chain around me that I couldn’t break, yet here she was telling me she was inspired by the way I lived through it. She reminded me that our God is so powerful that He’ll use something that I was frustrated by to inspire someone I’d never even met.

We left the Gator Walk and went to lunch, and my father, knowing I was hurting and tired, offered to put me on the back of my walker and push me. Because I’m stubborn, I wouldn’t let him. By the time we got to the restaurant, I was overheated and each sent a searing pain through my feet. As I took a seat and tried to cool off, I realized that maybe my parents and therapists had been on to something when they suggested I use a wheelchair. Was using my walker worth being in pain for the rest of the day? Did I really want to be worn out this way every day?

The answer is no, so this morning, I gave in and got out the wheelchair. I’m not sure how long I spent wheeling around in it and trying to figure out how to maneuver it around the house, but by the time I stopped, I realized they’d been right. Yes, my arms were a little sore from pushing it, but a power assisted device would fix that. And I was able to stand up at my bathroom sink and brush my own hair without being consumed by fear.

But perhaps most importantly, I felt more independent. For so long, “independence” has felt like a daunting mountain that I’ll never be able to reach the top of, and today, in that chair, that mountain suddenly seemed climbable. I no longer felt defined or controlled by my CP, and for that, I’ll never fight my therapists or parents on this issue again. I still have a lot of things to figure out and a long way to go before I’m completely independent, but like 2 Samuel 22:40 says, God’s armed me with the strength to win this battle, and He’ll be with me the whole way.

Cerebral Palsy

The Lesson Homecoming Court Taught Me

It’s homecoming week at my high school, and I’m honored to be on our homecoming court as a representative for our senior class. I was on court last year, too, and as Friday draws closer, I’ve been thinking back on my experience last year and everything I learned from it.

To be honest, when my name was announced last year as part of the homecoming court, I thought I’d either misheard the announcements or something had been announced wrong. I couldn’t believe it. But when my phone began to be flooded with texts from friends congratulating me, I realized that maybe I hadn’t been hearing things, after all.

While I was beyond excited and honored to be on the court, I also knew I had an interesting journey ahead of me. Part of our school’s homecoming festivities on the day of the game is a parade around the school- and by “around” I mean we walk down every single hallway in the building in about twelve minutes. I’d gotten to walk in it freshman year, but by the time I’d walked about half the route I was too exhausted and worn out to finish it. In my mind, there was no question whether or not I’d walk the whole thing this time: it was happening, no matter how tired I got. My physical therapist didn’t think the same way, though. “I don’t know whether you can handle both the parade and the football field,” she said.

I just shook my head. “I’m going to do this,” I said. In that moment, homecoming became about something else: proving her wrong.

So I practiced. Every day, I’d leave my third block early and walk the route, having whoever was with me clock me so I knew how fast I’d walked and how much faster I needed to be. By the time I finished, I’d be red-faced and feel like I was about to collapse, but slowly, I built my endurance. Little by little, I got faster and stronger, and eventually convinced my physical therapist I could handle both the game and the parade.

Against everyone’s advice, the boots I wore to school weren’t wide enough for my braces to fit into. In my mind, the braces would look awkward and while I knew no one else would care, I did. So I wore the boots they didn’t fit into, and when nine AM rolled around and my feet were already hurting, I wondered if maybe I should have listened to my parents and everyone else who told me not to wear them.

The pain only intensified as the day went on, and I began to worry that I would trip and fall during the parade. That was the last thing I wanted to happen. But when I shared that fear with my friend Noah, who was walking the parade route with me, he promised to catch me if I fell. He eased my worries and made my fear completely disappear.

Noah blew me away that day. As we walked, he kept telling me how great I was doing. His unceasing encouragement helped me push through the pain and was my motivation as I became more and more tired. When we finished the parade, he looked at me and said, “We did it! You did it.” Not knowing how to tell him what his encouragement meant to me, I put my arms out and hugged him, grateful that he had been right next to me the entire time.

Noah and I right before the parade began.

When I think about homecoming last year, the parade is what I think about, not walking across the football field with my dad that night. That was amazing, too, but the parade showed me that I was stronger than I knew and that if you put your mind to something and work for it, you can make it happen. It doesn’t matter how much pain you’re in or how tired you are. What matters is the effort you gave and the people who were right there with you throughout everything. And it showed me that no matter what others think or even what you might think at times, no obstacle is impossible to overcome.

Cerebral Palsy · thoughts

Counting Descent: A Book, an Author, and A Story

For the last week and a half, my AP Literature class has been reading Counting Descent, a collection of poetry by Clint Smith. Mr.Smith is originally from New Orleans, and much of the poetry details growing up as an African American, and how it’s affected him and altered his viewpoint on the world. He doesn’t shy away from topics such as racism and police brutality, but discusses them in a way that is both respectful and eloquent. Several of his poems made me stop and think, and he made me change the way I view certain things.

I fell in love with his writing from the first poem I read. It was beautiful, it was eloquent, and I loved the way he took something so ordinary and turned it into something that was deep and meaningful and thought-provoking. I can’t count how many times I would finish a poem and then just stop, because I was so touched and moved by what I had just read. I loved every poem in the book, and I highly recommend it to all of you.

Not only did we get to read his poetry, but this morning, we were able to Skype with him. He was awesome. Talking to him felt like talking to one of my teachers, (which makes sense, he used to be a high school English teacher) and more than once, our whole class cracked up at something he said. He was funny, he was real, and he was honest, too. I loved getting insight into a few of my favorite poems and into his writing process. Of course, being the writing geek I am, I asked him what advice he has for aspiring writers and poets. “Read,” he answered. “Read everything. Novels, poetry, nonfiction, short stories- read it all. And,” he added, “allow yourself to be bored every once in awhile.” He said that every once in awhile we need to put our phones down, let our thoughts flow uninterruptedly, and simply take in the world around us, because inspiration can be found everywhere. I loved that advice, because I feel like so often we’re so engrossed in a text message or Taylor Swift’s new Instagram post or the latest SportsCenter update that we miss out on what’s going on around us. And oftentimes, the little things are the most important.

As much as I enjoyed getting to ask him that question and receive his advice, my favorite part of the video chat came at the very beginning. A friend asked him how he got into poetry and spoken word, and his answer nearly brought tears to my eyes. He told us a story about how, not long after he moved to New York City, he heard a woman with cerebral palsy give a spoken word poem. He said at the time, he didn’t know much about CP, and listening to her not only changed his perspective on it, but it made him want to do spoken word, too.

He heard a woman with cerebral palsy. A woman’s poem about her CP changed his perspective on the disability and made him want to do spoken word. A woman with cerebral palsy.

I was overcome with emotion because the woman he heard did with her poem exactly what I want to do with my writing: impacted his life and showed him what life with cerebral palsy is like. She’s a living example of the power sharing your story has, and hearing Mr. Smith’s story only made my desire to publish my book grow stronger.

The thing is, while my book is labeled as fiction, much of it is reality. My characters are based off of the people I love, and while I’m not yet strong enough to walk with crutches on my own, a lot of what my protagonist experiences are things that I go through. Because of that, some scenes aren’t easy to write. I’ve cried, I’ve written with knots in my stomach, and I can’t count how many times a voice in the back of my head has whispered, “No one will read this. It’s nowhere near good enough to be published. Why would anyone want to read about your experiences in the first place?”

But I write through that self doubt and I write the scenes that hurt because somewhere within me I know that one day, those scenes will be the scenes that touch someone. Those scenes will be the scenes that inspire someone else to keep fighting whatever battle it is they’re fighting. Those scenes make my book real, and I think that reality will (hopefully) impact, inspire, and touch thousands of people.

Hearing Mr. Smith’s story about the woman with CP reaffirmed that hope. Though I’ve never met her, she inspired me to keep writing and sharing my story, because she’s living proof of how that can affect someone. I’m glad she shared her story, because Clint Smith’s slam poetry (and all of his poetry) is incredible. It was amazing to talk to him, and if you haven’t read CountingDescent, you should. It’s beautiful, and will quickly become one of your favorite books.

Cerebral Palsy

Another Part of Cerebral Palsy

Lord, please lay Your Hands on my legs and take away this pain. You are stronger than it; please take it away from me.

That’s my mantra right now, as I watch football and try to fight the intense pain in my legs. Thankfully, the pain in my right calf has eased, but it’s alive and fiery in in my left one. Maybe it’s because of the stretching I did at physical therapy today. I don’t really know. All I know is it hurts. A lot.

That’s another part of living with cerebral palsy: pain. When I wake up in the mornings, it hurts to take a step because I haven’t moved in so long. And I’ve just come to accept the fact that the day after big events such as prom or being on the homecoming court last year will be spent in the recliner because I can barely move due to the pain in my feet. Days like that aren’t fun, but the events and the memories I bring home are worth it.

I remember squeezing my mom’s hand as tightly as I could as the needle went in Botox injections when I was little. The medicine helped loosen my muscles for months, but the procedure itself was less than fun. Usually, I was in for at least ten shots, and I would always make the neurologist count to three before he injected them. He was a great doctor and an incredible man, and he was patient and kind, even as I cried on his table. I was back to wearing a smile as soon as the shots were over, but during them tears streamed down my cheeks and I had to make myself get through it, one breath at a time.

I remember the searing pain when my casts were removed after having surgery at eight years old. Then, it hurt to simply straighten my legs. That was the only time I ever asked to wear my night splints, as straightening my legs brought me some relief. Trying to use my walker after six weeks in casts was pure agony, and I remember crying and screaming during physical therapy sessions. My physical therapist remained encouraging, telling me that the only way I would overcome the pain was to rebuild my strength. At the time, I couldn’t even make it from one class to another without breaking down in the hallway. But the more I walked, the stronger I became, and eventually I was able to zip around the school again.

Nowadays pain doesn’t come very often, praise the Lord, and I’ve learned how to get through it’s morning visits. It’s times like right now that are the most difficult, when I’m not sure what caused it or what do about it. All I can do is take ibuprofen and pray that He will make it go away.