“Dear Julianna” is a campaign that was created by adults with neuromuscular diseases to help kids with the same neuromuscular diseases feel more confident in the skin they’re in. Julianna is a 5-year-old girl with CMT (a type of muscular dystrophy) who ultimately wants to choose “Heaven” instead of living through a life with her disability in the event that she gets too sick and has to choose to fight through it or give up her life. This campaign was made to show Julianna, and other kids like Julianna, that life with a disability can be challenging but worth living and fighting for. These adults are sharing their stories and hardships within these letters and showing these kids that we are still living, and very happily, at that. I wanted to join the movement and wrote a letter to Julianna that I wanted to share with you. Here’s a link to the news story about Julianna if any of you haven’t heard of it or are curious.
CNN-Heaven over hospital: Parents honor dying child’s request
Here’s my personal letter to Julianna. Enjoy!
Dear Julianna,
Everyone is unique in their own way. Including you. And you should share that with the world. You are the best person out there that can tell your own story. Your story is like no one else’s. And people can learn from you along the way!
Every person with or without a disability is like you in some way or another, so you don’t ever have to feel alone. A lot of people are afraid of what others will think of them if they feel like they don’t fit in or are different. Just know that if you think you’re weird, the person next to you might be weirder and you’d have no idea. So don’t be afraid, the world isn’t as scary as people make it out to be. The world is only scary when we focus on all the reasons the world CAN be scary. We’re all trying to find our place in this world to make us feel like we belong. Your mission is to find your own happy ending. To figure out where in this world makes you happy. And your disability is only going to help you find that answer. Your disability will actually make you stronger. It will empower you to think differently. To be a keen observer of society. To really appreciate things that seems so minuscule like curb cuts or spacious public bathroom stalls.
I could sit here and tell you about my disability and how it’s helped me become the person I am today. But this isn’t about me. This is about you. I want you to really be able to grasp the person you are and embrace it. Just because you have a physical disability it does not make you any less of a person. It does not make you mentally incapable. It does not make you incapable of doing. And finally it definitely does not mean you can’t face obstacles that seem close to impossible for a disabled person. The key is to believe in who you are and who you want to be. You’re the pilot of this plane. Now, just think. Where do you want to go?
It’s up to you to decide how far you wish to push your abilities. Even if it’s just picking a pencil up off the floor. Are you going to wait for someone to come home to pick it up? Or are you going to try and do it yourself first? Using a back scratcher maybe? Or sticking tape to the end of stick/or ruler and grabbing it? Or what about living on your own as an adult? Do you want to live by your own rules and feel as independent as possible? Or depend on your parents for every thing? Do you want to put yourself out there and open up to the idea of finding PAs on your own? And living by your own terms?
Your disability is made out to what you make it to be. Don’t let your disability control you, you control it! If you tell yourself “I can’t,” then you won’t. If you tell yourself “I’ll try,” you’re brave. If you tell yourself “I will,” then you will.
Having a physical disability is completely subjective. There’s not a default way of completing a task. There’s no instruction booklet on how to tie a rope to a doorknob and pull the string to shut doors. Or how to use a broom to reach high things. There’s no single person that can tell you what you’re capable of doing or how exactly it should be done.
Just know this, just because you have a unique way of completing a task that’s different from able-bodied people, doesn’t mean you’re doing anything wrong and it doesn’t make you any less “normal.” Nobody is “normal” whether it’s clear to the naked eye or not. There isn’t even an accurate definition of the word normal when it comes to society. You do you. And be proud of your independence you’ve worked so hard to gain. Be proud that while everyone else around you is doing things in black and white, you’re doing everything in color. Be proud that you are you. Be proud that you found a way. Be proud that you believe in yourself. Be proud that you’re brave enough to face the world on your own. Be proud that you’re not letting your disability define you. Be proud that you have control.
While everyone’s posting pictures of themselves, I want to share a special symbol with you.
Before I tell you what this symbol means to me, I want to think about what it would mean to you. This is the 3E Love symbol. Stands for embrace, empower, educate.The meaning of this symbol is created through your own interpretation.
To me, this symbol means acceptance. Independence. Unlimited possibilities. Happiness. Confidence.
This symbol, to me, reminds me that I am who I am and there’s nothing wrong with that. It shows me my disability does not define the person I am. It shows me that I am strong enough to do whatever I set my mind to. It shows me that I can’t give up when all odds seem against me.
So, my final words to you is to never stop trying. Stay you. You are not alone. And you, most certainly, can do whatever it is you set your mind to. As time progresses, society is becoming more and more accessible to the needs of people with disabilities. There’s always a way around an obstacle. Your job is to find the alternative path.
I bid you good luck on this journey. I hope I was able to shed some light.
If you believe in yourself, the rest of the world will follow.
Yours truly,
Saws.
If anyone is interested in reading more letters here is the link to the campaign. Don’t be afraid to like and support the movement on Facebook as well!
Updated edit: CNN-Julianna Dies (June 2016)