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Dear Mom: I don't know how to do this without you.

10/25/2017

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​My alarm went off at 7:30am and I groaned.

30 minutes later, I swung my legs off the side of my bed and sat there for a second.

What the heck. This is weird.

Physical Therapy. When I think of those two words, I think of you.

I think of our car rides after school to Arnold Palmer. I think of us laughing at the most random things in the waiting room. I think of how that waiting room is where your addiction to Candy Crush was born.

I think of you, Mom. My best friend and my PT buddy for years.

~

I’d been to PT 2 weeks before at UF but a friend took me.

This past week? I was headed to PT on my own. For the first time ever.

It was 9am when I walked up to UF’s disability bus service. They know me pretty well, so I did my best to smile.

“Good morning Jordan. Headed to UF Ortho?”

“Morning. Yep, that’s me.”

I took my seat and felt like I was in a twilight zone. I pulled out my phone to text Mom.

I’m so nervous. I’ve never been to any PT alone.

She responded right away.

You’ll be fine Pea. You’re a PT pro.

I smiled. Because no matter how much I act like I hate it, I actually love when my family calls me by my childhood nickname, Pea.

And I smiled because Mom was right. I’ve done this since I was a kid. I’ve got this… I think?

I walked up to the check in window and hesitated because Mom always checked me in. I felt super weird when the word copay rolled off my tongue.

Like Mom always taught me, I got there early. So, I took a seat in the waiting room. I looked at the empty seat next to me and missed her ranting about Candy Crush.

When my name was called, I picked up my backpack (and missed the fact that Mom wasn’t there to keep my stuff with her), walked into the back and gulped, remembering that I’m an “adult” in an adult clinic now.

Man. I hate being an adult. Pediatric PT gyms are definitely more fun.

The little old lady standing in her walker to my right smiled at me. It looked like a sympathy smile. I think I looked like a deer in headlights.

I felt like I was in a movie scene where the character has a mini version of him or her on each shoulder, each telling him or her to do a different thing.

Version 1: Snap out of it Jordan. You’ve done this PT thing for years.

Version 2: I just really want Mom.

Version 1: You’re 20. Come on. One crutch in front of the other.

Version 2: Wait. I want Katie and Desiree! Ugh, new people. Interns everywhere. Turn back Jordan, it’s not too late.

Version 1: Oh, shut up Jordan. You’d look like an idiot if you just walked out. What are you going to do? Crutch home?

Version 2: Okay. You’re right. Ummm where do I go? So many people. I want to puke. Mom? Mental telepathy kick in now. Tell her I need her!!

I snapped out of it and realized my PT had been calling my name. I smiled nervously and made my way over.

The time flew by pretty quickly, surprisingly. I walked out still feeling like I was in a fog.

I sat on a bench and waited for the bus again and texted my cousin/best friend that I’ve reached the “adulting max” because I went to PT by myself.

The Athletic Training Major in her was very proud of me.

~

I guess this is just one of those moments that made me realize that growing up is really weird.

And I don’t always like it.

Mom, thank you for going through this with me for all those years.

It’s weird being in a new clinic, with new people, without you.

But I’ll get used to it.

Just know that I think of you every time I sit in that waiting room.

I love you a whole lot.

Your support means the world.

Miss you, PT buddy. I don’t really know how to do this without you.

Related post: You’re my superhero.
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Immeasurably more to the pain.

10/11/2017

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Two days ago. I stood in the middle of my floor, looking down, staring at my bare feet.
 

I watched every one of my toes curl under, pushing hard enough into my wood floor for each tip to turn white. One thing that comes with Cerebral Palsy in my case is spasticity. And one thing about spasticity? When it’s happening, there’s not much you can do about it.
 
My deep breath was shaky because I knew it was going to be a long one. Every inch of my body hurt, from the top of my shoulders to the tips of my toes that refused to relax.
 
Chronic pain. Two words that control my life more than I’d like them to.
 

I knew this could happen. I’m not even 6 months out of surgery and in a way, my body is screaming because it doesn’t know what the heck is happening. I’ve fought back with lots of time in the gym and home exercise programs but nothing is like going to PT. Which I finally get to start this week with UF Health.
 
But the past three days have been brutal. Miserable. Honestly, some of the worse I can remember.
 

College makes me hit the ground running. I often don’t look back and don’t give my legs and body as much attention as they need.
 
And since Sunday, the real struggles of CP have closed in, backed me into a corner and took a figurative sledgehammer to every inch of my body.
 

These are the times when it’s hard.
 
The times when I’m in my room alone. The times when the “why” questions creep in, and I often scream at God. My mind runs in circles as my body screams for relief.
 

Monday night, late, I sat on my floor, knees to my chest, watching my toes cramp in and out.
 
Leaning against my bed, my shoulders screamed from using my crutches a lot that weekend.
 
Resting on my carpet, my left hip begged for the sorta-new screw that resides in it to leave.
 
As the first tear rolled down my cheek, I remembered how they’d have me rate my pain out of 10 every morning in the hospital. Eight, I thought to myself.
 
This is an eight.
 
The floodgates opened and I was mad at God.
 
Like, really mad.
 
It’s like everything in me was telling me to run from this, but I couldn’t. Nothing I did made the pain stop.

My 20 years of this life have taught me that in these “eight” moments where there’s nothing I can do to control the physical pain, I just have to ride it out. And do my best to reign in my brain and not let it spin out of control. Because all my life, I’ve made the argument that the mental effects of having a physical disability are probably stronger than any physical aspect we experience.
 
For probably 30 minutes, I sat on my floor and completely failed at keeping my mind stable.
 
It spun and it spun. And I screamed at God.
 
I didn’t want this and I didn’t get this. What the heck is the point of making me feel like everything in my body is on fire, God?
 

Why? What’s the point? There’s got to be more to this. You’ve got to be doing something more with this, God.

 
I cried and pushed through. And then started digging for answers.
 
On my blog Instagram account, I follow a lot of other blogs (makes sense, right?)
 
One of the people I follow is Audrey Roloff. I had seen her post picture after picture of “Always More” written on her hand. So, considering that in that moment, I was searching for more, more answers to my pain, I decided to Google it.
 
I pulled up her blog and started reading. On her blog she said that “Always More” is her life mantra and referenced Ephesians 3:20:

“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us,”

Woah. Okay. God can do immeasurably more with my pain?
 

I cried some more. But for a different reason. Because the answer was right in front of me as I sat on my floor.
 
It has been on my heart to somehow reach out  and create a stronger community within my dorm floor that is mainly all disabled students. I take for granted how blessed I am in my physical situation so lately I’ve felt convicted to do something about it. With a little help, I will hopefully be starting a bible study for the kids on my floor soon.
 
Maybe that’s it. God allows me to experience these extreme spurts of pain so I can relate better. So I can lead and serve these kids from a better place.
 
So I get slapped with a little perspective and stop taking for granted how blessed I am. Like I’ve said before, if my medical chart spoke for itself, I should be much worse off than I am.
 

Audrey also referenced Matthew 6:19-21 in her blog which is about storing our treasures in heaven.
 
One day, me and every other disabled kid will be pain free.
 

That’s where my focus should be. Building God’s Kingdom so more kids like me can have hope to cling to when they find themselves in a place like I was Monday. Screaming in pain, looking for answers, wondering why.
 
That picture is from a summer when I did intensive PT. It was one of the hardest, most painful things I’ve ever been through. But I somehow managed to smile.
 

There’s always more to the pain.
 
There’s always more hope to grab.
 
There’s always more people to reach.

 
Fighting this physical pain with everything I got and shrugging it off when I can.
 
But when I can’t shrug it off, I’ll cry secretly for 30 minutes. And then pick myself up and focus back in on what’s important.
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Dear Delaware: 5 months later.

10/5/2017

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I remember it like it was yesterday. Coming home from the hospital this summer and the texts immediately coming in.

Us three college kids who all went to Dr. Miller at the same time this summer, had (and still have) a group message going.

Once we were all back on our home turfs, we each sent a message along similar lines.

“I miss Wilmington!”

“Guys, I didn’t think it was possible to miss a hospital or Delaware… but I do.”


We all shared the same feeling. Wilmington, Delaware and Nemours had touched our lives in obvious and impossible-to-shake ways.

For me, I really mean it when I say impossible to shake. There isn’t a day that goes by that I don’t think about Dr. Miller, Wilmington, Nemours or all of the above.

I’ve wrestled with why that is lately. Being thankful is one thing, but truly missing a place and a group of people is another.

Feeling like a part of you is in another state is a different story.

The first conclusion I came to is solely just the fact that what that place and those people did for me, literally got me to UF.

Dr. Miller, Nemours and Delaware gave me my life back. They replaced my physical pain with hope and possibility.

But then I thought, there’s got to be more to this. There’s got to be a reason why God puts Nemours on my mind every single day. There’s got to be a reason why I miss the little city of Wilmington, DE, of all places, every single day.

I used to hear people talk about how in college most people have just a general idea or even no clue of what they want to do with their lives.

I remember Freshman Jordan thinking: Not me, I know what I’m doing!

Now Sophomore Jordan is laughing at Freshman Jordan. Because I’m now in that “just have a general idea of what I want to do with my life” boat.

Freshman Jordan was 110% going to be a sports journalist.

Sophomore Jordan just knows that somehow, she just wants to tell stories.

I’ve always known that I have been blessed in my medical journey. For some reason, a grade 3 hemorrhage and a 9 week premature birthday didn’t affect me as much as it probably should have.

For some reason, God gave me this voice that a lot of other disabled kids don’t have.

If my medical chart spoke for itself, I probably shouldn’t and couldn’t be at UF.

But for some reason, I am. For some reason, I can’t do math for the life of me but I can write all day.

For some reason, I have this unique platform.

And that has been very convicting lately.

The disabled population at UF is larger than people realize. And because I live in the specifically accessible dorm this year and find myself in the Disability Resource Center (DRC) a lot, I see it. And one word creeps into my mind and drives me up a wall:

Why?

Why am I on crutches but the kid down the hall from me is fully wheelchair bound?

Why can I talk but the kid to my right can’t and communicates through an iPad?

Why did I start this blog?

To be a voice for kids like me. To advocate for the population that has their lives stamped with that blue symbol.

Here’s where Delaware and Nemours comes in. A year ago, I was going full speed ahead into the sports media industry. Now, I feel like I’m at a crossroads with two paths.

Do I go into sports or do I go into healthcare? Do I step onto a field and tell people’s stories or do I step into a hospital and tell people’s stories?

While both of those scenarios get me excited, lately the latter gets me really fired up.

I don’t know what that looks like right now. Part of me is starting to dig my heels in and look for communications internships at Nemours or any healthcare system where I can learn to do just that. Be a voice for kids like me and families like mine.

I guess the funny, scary and awesome part about life is you never know where you’re going to end up.

Who knows, maybe one day I’ll find a way tell stories in the sports and healthcare fields.

I don’t know where I’ll end up, but I do know that feeling God’s call is awesome.

Right now? I’m confused because Freshman Jordan’s plan might be changing. But excited because I know God’s got something big.

I used to end articles or posts telling ESPN to watch out.

Now, being fully open to God’s plan that could be ESPN, could be Nemours or could be somewhere else, I’m just saying that I’m excited.

What is clear is that I want to be a professional storyteller.

And what that looks like? I am not sure yet.

This summer at Nemours gave me a perspective and uncovered a dream that I pushed off for a long time.

But now I’m open and excited about it.

A little confused and scared because the perfectionist in me likes to know exactly where I’m going, but I’m slowly surrendering to the fact that that’s not possible. So I’m deciding to just be excited.

Like, really excited.

Dear Delaware: I love you a lot. Thanks for lighting up passions in me that I always had but never knew how to pursue.

Thanks for giving me the courage to finally start trying to figure that out.


Related posts: Dear Nemours
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    Jordan Ellis
    Lover of Jesus & puppies & coffee | UF | Gainesville // Orlando | Clear eyes. Full hearts. Can't lose.

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From 3west: One Blog. two crutches. Lots of stories.

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