Disability Pride Month 2023

 Hello lovelies, 

   Today I will be attending my fifth Moebius Syndrome Foundation conference! If you want to read more about Moebius you can check out this link. I found out that I had Moebius when I was 10 and it felt like I had found a puzzle piece of myself I have been looking for. It felt like I was the only person with my problems until I got to meet people online that got what I was going through. I went to my first Moebius conference when I was 14. I still can't find the words to describe the atmosphere and the warmth I feel when I see the Moebius community. 

    Fast forward, I am 23 and it is so cool to grow up with my friends and get to help inspire the younger ones that were my age when I found out about Moebius. As a bonus, I became a Social Media Assistant in March for the Foundation and I have loved every minute of it. It brings me such joy to help in some way even if it is just through the screen. 

   Also, July is Disability Pride Month! This month is so special to me because it’s a time of spreading awareness and beating the stigma of having disabilities makes us incapable of what we can do. Disabilities aren’t just physical but mental as well. 

Disability does not mean inability. 

When I was little, the doctors told my parents that I wouldn’t be able to drink out of a straw. A couple years later, I figured out a way to drink out of a straw and showed my mom. 

She cried. 

For my whole life, I thought I’d never be able to get my lips to touch. It was just something I accepted. In speech therapy, they had the idea of getting me to stretch my lips just to see if that would help them touch. 

At first, I did the exercises with no hope that my lips would touch. As time went on, I did more of the exercises until the day arrived that I could press my lips together. It’s still such an amazing feeling and I’m so proud of myself. 

Once, I got told that it must be hard to make friends with my disabilities which blew my mind. The thought never crossed my mind. Yes, I have social anxiety but I never thought looking different would scare friendships away. I’ve gotten lucky in the department of friendships and growing up, I went to school with the same people for the most part. I had no reason to think differently. In college, it’s such a huge place that it was overwhelming sometimes but I never thought the way I look or speak would turn people away. 

The reason is: truly good people won’t care about what can hold you back but instead support you. 

On my first date with my boyfriend, he took it upon himself to research about Moebius Syndrome on his own without me mentioning it. That gesture meant so much to me. This was something that did have me nervous: that my disability would make me unattractive. That I wouldn’t find anyone that would romantically take interest in me or I’d be too much. 

Now, I know that mindset isn’t right. I know I’m a great person with an awesome personality and a huge heart. You’re never too much for the right people. 

It’s scary to be honest on here but it’s helpful that I know I’m not alone with these feelings and I want to share this in case anyone else needs to know that they’re not the only one thinking like this. 

I also want to be a voice for the Moebius and disability community when I say that it’s never a bad thing to ask questions and be curious. I’d rather have questions from little kids about why I talk the way I do rather than be hid from. It’s so important to teach kids that even if someone looks different from you or acts differently, they’re still human. Do not assume things about someone just from watching them. 

Please if someone has a speech impediment and you don’t understand them: ask to repeat. I promise you it’s so much better knowing you’re being understood rather than pretending to know. 

Please have patience. Don’t be judgmental. Be kind and gentle. Educate yourself. Spread awareness. 

Love always, 

Zayniator 

Currently listening to: Scar Tissue by the Red Hot Chili Peppers

Kindness Goes A Long Way

 Hello my lovelies, 

Originally, I was supposed to have this out last week but college life and the roadblock of not knowing how to express my thoughts in words for you all... until now. 

As most of the people reading this know, January 24th is Moebius Syndrome Awareness Day. It took my family ten years to find out about this and ever since, it has felt like a piece of me that I am so proud of. The Moebius community is something I can never express in words of how glad I am to have them. I love sharing awareness for myself and for them in hopes of helping it get to be well known. 

So, seeing all the purple this year and all the wonderful messages you all have shared with me or talked about me does not go unnoticed. I am usually pretty awkward at taking compliments because words do mean a lot to me. The hardest critic I have is myself and it is reassuring to know the impact I have made on people for the better. I will never be able to explain how much this means to me. 

Bonus story: if you know me, I love music so much. One of my favorite underrated singers I love called Banana Club noticed my message to her and she wore purple and let everyone know about it too. Big fangirl moment for me... moving along. 

The most important objective for me: trying to do my best. Sometimes I am having a bad time but it means a lot that kind people do exist. The world sometimes can feel so dark, lonely, cruel, and hopeless but it can be the small things that can make me feel better. Such as, having my blog for as long as I have. It never gets old if I get told that I have reached someone's heart or made their lives better. 

Just a reminder: it is okay to have sad days and moments. I forget about this then feel even worse that I am not okay. It is perfectly normal to not be okay all the time. 

Another thing I love is patience people have to try to understand me when I speak. I have had times where I have gotten the wrong order because I wouldn't get asked what I said but I could tell by the cluelessness looks that they were winging it for the best. Other times, when I am with friends, workers just ignore me completely and depend on them for my order. I understand the pressure and nervousness one can have thinking about asking me to repeat myself or attempts to try to understand me but I promise you that if you need me or anyone else to repeat themselves, more than likely we would be happy to.  

One of the favorite times of my life to think about is when I broke my foot (by stepping off a curb....) during my freshman year of college. Now you may be wondering: Zayne, what do you mean one of your favorite eras of my life? Well, when I broke my foot and had to wait for the ambulance, an old man stayed with me the whole time to make sure I was okay. He didn't know me at all but kept checking on me. Another time, when I was riding around in my electric wheelchair, it got stuck in the grass... so I was hopping around trying to get it back onto the concrete and another random person walked up and helped me. Let's not forget the time I got free sweet tea from Chick-fil-a and a good football watching session. 

It is the truly small acts of kindness that make my heart happy. 

It is the people who don't judge by the cover of the books, too. In my freshman year of college (pre-COVID), I would sit outside on warm days to read my books on a bench in front of my dorm. It got so often that I started seeing regulars hehe. One person that would always stop and talk to me finally one day sat down and we spoke for thirty minutes about the most random things. At one point, he started telling me the way I spoke and looked intrigued him in the best way that he wanted to get to know me. It was one of the best compliments I ever received and I cried because one of my insecurities is the way I look may turn down people's wants to interact with me. I know it is such a stupid fear but I am battling through it. 

Side note: I had to take out my photo ID to make sure they understood my name. Almost everybody I have met has complimented how cool my name is which is fun but it is a struggle sometimes to say my own name. I do love ordering on my college campus because I pay with my student ID so they can just look at it then know.  It has also become a hobby of mine to use my middle name (which is Christine) or the name Lily for my coffee orders instead of going through the process of trying to get one to understand my name. Yes, I guess you can say that I can try to say my name out loud but I have gotten to the point where my patience for myself to say my name isn't there sometimes. 

I guess the overall message for today's blog is no matter the act of kindness, I feel like it will make a difference in someone's day. I will always remember telling a substitute "thank you" just for a piece of paper in middle school and she ended up crying while telling me she hasn't heard that in a long time. 

Thank you once again for reading my blogs and making me feel like I am making a difference. Happy February! 

Love always, 

Zayniator

Remember to smile with your heart! 

Listening to: Wildfire by The Wombats 

The end

Wonder

Hello my lovelies,

Today is a special day for me as a writer. Today is officially one year of blogging for me and I honestly can’t feel so satisfied with this as I do now. I looked back at my very first blogpost on here and... I might’ve cringed a bit inside. It felt like one of those “On This Day” throwback posts you get on Facebook and you question yourself on how could you be so awkward?

But as far as I can tell, I’m still that awkward, yet dorky, writer that I am but my grammar has improved as it should. Also that my main reason for this blog besides expressing my feelings is still true: wanting to reach out and help people to make sure they’re not alone.

With this blog, I have all my thoughts and getting feedback and support for this blog has meant so much to me. I hope reading my blog posts has affected you in some way anytime in this blog’s existence.

(If you really want a challenge on seeing how much my writing has changed (and how outgoing I was in my writing (??)), there’s a old blogspot of my fourth grade self floating somewhere on the Internet. Good luck finding that.

Now I’m going onto another topic that I meant to blog about last week but I’m a mess and think this is important.

Last week I saw the movie Wonder and afterwards left me in a deep thought (as everything does) and I could relate to some parts of the movie. I used to not like how my lips were when I was little and how I talk but I got past that. I still look at myself in the mirror for long moments st a time and smile at myself just to see my crooked smile and honestly, I wouldn’t trade that.

Also, it is sad to know there are those mean people in the world who take pride by hurting others. I recall being called many things such as “stupid” and “too ugly to have friends” but I know that these aren’t true.

Especially my friends. My friends are the most supportive and amazing people that I’m so thankful to have in my life with their music tastes, how they can relate to things I say, and laugh at my stupid jokes. But they also help boost my confidence.

(My family really rocks too.)

For example, one of the most precious people I cherish I quote: “WOW YOU’RE SO ADORABLE.” Do you feel that? My self esteem has RISEN.

 I know I say this a lot but don’t judge a book by its cover.

Today is the first day of December and I have a feeling it’ll be a great month. There’s so many birthdays this month for amazing and magnetic people in my life so I’ll enjoy that along with the holidays with family.

Thank you for reading my blog for a year’s worth.

Love always,

Zayniator

In Case You Need A Laugh (Or a Smile)

Hello my lovelies, it is great to see you all back again and ready to read my posts. It forever means a lot. Also, you may not notice but I changed some of my display on my blog so I hope it looks pretty to you as it does to me.

This week's blog post I thought over and decided that I am going to share with you five stories that are completely embarrassing but funny to look back on. I hope at least one of these makes you laugh or smile.

1. 911, Sorry. 

Does anyone remember when blackberry phones were popular and it had this one game where you could hit the blocks with the balls and the paddle? No idea what I am talking about? Well oops.

Anyways, I always got my mom's phone to play this game and on Blackberries they lock too just like iPhones. 

We were in a doctor's office and my mom was back inside while I was sitting with my Nana. My mom left her purse with us and I got my mom's phone out to play that game. I thought I knew how to unlock the phone but I totally didn't. 

The phone started dialing and the person on the phone said hello then I took the phone in my hands and mentally started freaking out. I kept pressing the end button but it wouldn't hang up. Finally, I looked to my nana and gave her the phone because I had no idea what to do then. 

So that was the time I accidentally called 911. 

 2.  What Happens When You Watch Too Much Spongebob

Every child that has ever watched Spongebob has to remember the theme song with the pirate. That is like over half the reasoning to watch that show in the first place. 

One day, my teacher in first grade was saying for me to do something and normally, a child would say okay then just leave it at that. 

Not this girl.

I saluted to my teacher and said "Aye eye captain!" just like the pirate in Spongebob. Imagine this little girl in first grade saluting and saying that with the biggest grin and black glasses. 

This is just a throwback picture from first grade to help your imagery.

Needless to say, I got sent to my mom's classroom. 

End of Story Time. 

I hope you smiled or even laughed at these two stories. As I type these, I wish my mood would lighten up. 

How do you make yourself feel happy? 

Love always,

Zayniator