Thank You

Thankful for amazing friends who truly “get it.”

This guy knows me– the good, the bad, and the downright crazy– and calls me his friend anyway.  I don’t have to put on a mask nor try to justify myself at every turn.

Whether sending me memes or bringing me roses from his garden, he is always there to remind me why life is worth fighting so hard to live.

In many ways, we’re very different but in the ways that matter, we are eerily similar. He knows firsthand what it’s like to live in a broken body and is always up to commiserate. Our conversations are never dull, and we never run out of things to discuss.

He understands that social interaction is exhausting sometimes and doesn’t get upset when I don’t text back for days on end. He meets my absence only with care and concern, letting me know he gets it and is excited when he finally does hear from me.

We roast each other nonstop. An outsider might think we hate each other. Or that we’re a married couple. Or perhaps both.

He is one of the very few I look forward to seeing, even on days where I feel like crap mentally and physically, because I know I can just be. He reminds me that he loves me the same on my bad days and somehow manages to make such days a few shades brighter. I always leave our interactions better off than I came.

He makes sure we stop for rest breaks on long treks up the hills and doesn’t make me feel self conscious about the need to do so. Even though he pokes fun, he understands my hatred for stairs.

He gives me props where they are due, but isn’t afraid to call me on my shit and hold me accountable.

He appreciates my weirdness and is always down to hear of my crazy misadventures. He shares his stories, too, not bothering to hide the fact that he is just as quirky.  We know that we don’t have to hide our flaws and struggles from one another, but instead are a team in the brokenness. One of our many unspoken understandings.

He is an endless fountain of encouragement, compassion, and really, really bad humor.

Thank you, Justin, for being you.. ❤

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Au Revior, Ben!

It hasn’t even been a full week since Ben left to go back to France, but we miss her so much already! 😭 We are blessed to have gotten to know this amazing girl over the past year. Au revoir Ben! We love you so much ♥️🇫🇷

Countdown ‘Til Prom

 

Only 3 days left until Duke Children’s Hospital Prom!!  Feels nice to have something to look forward to 🙂

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First Annual Duke Children’s Hospital Prom – 2017

This year’s theme is outer space.   I’m interested to see what they do with that and what the overall turnout will be.  Last year’s Prom was amazing, and I imagine it’s only gonna be better this year 🙂  I can’t wait to see everyone!!

I Missed You <3

I never knew it was possible to miss someone you had never actually met, but that is always how we felt. The first thing we said upon embracing each other for the first time was, “I MISSED YOU!!!” ♥️

I got to see my Em!!

While we lived on opposite sides of the country most of our lives, this girl been with me through it all– my first real spoonie friend! In the past 4.5 years we’ve been friends, we’ve spent countless nights on the phone, FaceTiming IMG_4268until dawn, supporting each other through life’s craziness & trying to make sense of the world. We were both so sick & oh so scared when we met…dealing with mysterious & debilitating symptoms, overwhelmed as we collected diagnosis after diagnosis. We spent hours talking about everything & nothing at all, often staying on the line with little lullabies or reassuring words until the other was asleep.

Crazy to look back & see how far we’ve come! I truly don’t know what I would have done without her all those years.

This girl sees me- even when I try so hard to hide inside myself. She makes me laugh with her sarcasm & morbid sense of humor. She holds me & reassures me when I’m sick, telling me not to be embarrassed. She reminds me it’s okay to break down sometimes & loves me right through it. She makes me feel accepted, wanted- completely safe & loved.

I can’t help but smile when I look at the beautiful young woman before me. Em, I’m so beyond proud of everything you’ve overcome & the person you are today. You inspire me & I am beyond blessed to call you my friend & little sissy 💕 My heart is so, so full!

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Happy 23 to Me!

Happy birthday to me; I’m officially 23! 🎉🎈

I got birthday hugs & the sweetest gifts from the amazing College Inn crew!  Tifani gave me this fancy mug & a beautiful candle that smells sooooo good & says “Hello, Sunshine” ☀️ She said I am the most sunshine-y person she knows & I always brighten her day! I teared up & honestly still do thinking about it. And Austin gave me the bright, gorgeous flowers you see in the pictures below! I was so surprised & so happy I was literally shaking. I still can’t believe they did that!

Then I got to spend my birthday evening with my parents & Clyde 🙂 They showed up to my apartment door wearing giant party hats & big, cheesy smiles…which totally caught the maintenance workers off guard when they answered the door, lol. We went to Mellow Mushroom & had some delicious gluten free pizza with onions (my favorite)! After dinner, we went to McDonalds & sat at a booth for hours drinking hot chocolate, just talking & laughing about everything & nothing at all. I am so incredibly blessed to have a family who truly enjoys one another’s company & who can have fun doing just about anything. My parents are my best friends & I don’t know what I would do without them. We are a dysfunctional bunch, but I wouldn’t change a thing.. ❤

And Peter wants to take me to a birthday dinner tomorrow night! We were supposed to see each other tonight, but I was feeling a bit low after some things happened & so I asked if we could reschedule. I am actually excited we’re going tomorrow instead, because, as dumb as this may sound, that means the celebration isn’t over  🎉

I received some really, really sweet text messages & voicemails today that reminded how many people out there truly care & love me, today & every day, even though we may not get to see one another often. I really needed that, especially lately.. ❤

I truly appreciate everyone who helped make my special day so special, both in person & from a distance! I feel the love 😘

Here’s to year 23!!

 

 

 

 

Spoonie Party!

I had the BEST time with these lovely ladies today!  I cannot even begin to express how needed this get-together was…not just for me, but for all of us.  Spending time with people who truly get it– talking, laughing, commiserating, joking, and just BEING, no strings attached– is truly the best medicine.  No one flinched when someone whipped out a nebulizer or strapped on a neck brace or flushed their port or tripped over their tubing. Laughing, we raced up to help each other (usually just adding to the chaos…lol, but the thought was there).  It was the first time in a long time I felt genuinely happy.. ❤