“And how do you spell that?”

I know I said I was going to do a Q&A blog next but a new-ish topic came up today. I guess that it’s not a totally new topic as I have blogged about it before but it happened again today. I went to Starbucks, ordered my usual (non fat iced white mocha with no whip) and the guy asked what name he could put on the cup. I said my name, there was that awkward moment of silence and then the “and how do you spell that?. He tried to make the situation less tense by saying “I always forget the 3 before the y, that’s why I asked” but I knew the real reason. He didn’t understand what I had said. It’s not his fault and he was not awkward about it and tried to diffuse the situation but I just am tired of this happening. Like, I kind of dread them asking what name to write on the cup because it’s so awkward when they don’t understand. I know it is such a silly thing to get upset over but I am just tired of it. I don’t know what I can do to change it, as it is my tongue that is partially paralyzed and I don’t really think there is much to do for that. When I am somewhere and they need my address, I normally pul out my drivers license so that the awkwardness is avoided, they can just see it and I don’t have to see this. I am sure that I am not the only one with Moebius who goes through this, I just don’t know how to deal with it. It doesn’t bother me half as much as it used to but it still does a bit.

Moving on, my college orientation is tomorrow. I am kind of excited but also nervous. Probably more nervous than excited. I think I make more of a big deal of my looks and speech than I should. Maybe it doesn’t really matter to others, maybe people don’t really even care. I just feel like all eyes are always on me and people are wondering “wow, what’s wrong with that girl?”. It shouldn’t matter. I should just go, learn and find out everything about my new school. College is the next chapter of my life and I want it to be as great as it can be. I’m just nervous about what others think, as I always am. How do I shake this off? How do I go to this orientation, meet my professors and fellow students? I just want to be able to talk normally to them and become involved in the college community but I feel like I am going to be held back by my speech mostly.

“If you don’t like something change it; if you can’t change it, change the way you think about it.”  ~Mary Engelbreit

This is a great quote. I know that I can’t change how I speak or the things that make me different, but I can change how I deal with it. I need to essentially forget that I have any differences. I need to go to this orientation tomorrow and not feel shy because of these things. I need to talk freely to my professors and fellow students. I am excited to start this new chapter of my life. I think everyone is nervous, obviously including me but I can get through it. My thought process tomorrow will be this: Yes, I have differences from others but everyone is different. I will put this behind me, I will talk to people like I am the same as them. I will meet my professors and be strong and courageous. There are a lot of other people with Moebius who have gone through this and continue to go through this and I will make the best of it. Failure is not an option.

So again, I will end this blog post by asking for your opinions, advice, thoughts, questions, whatever! Please, please feel free to comment. I am still looking for questions for my Q&A blog too. If you have any questions about Moebius, living with a rare condition, etc please do comment and ask!

“Damaged people are dangerous.  They know they can survive.”  ~Josephine Hart. Not saying we are damaged, but damn, we can survive anything!


3 thoughts on ““And how do you spell that?”

  1. Hello! I just found your blog during a google search. My son is 6 months old and has Moebius. I would like to connect with other people who are familiar with Moebius since this is all new for us. I’ll tell you a little bit of our story, ask a few questions, and hopefully you will respond. My son was born on February 14 this year. He was admitted to the NICU after birth because of heart issues (which are no longer a serious concern, thank God!), but remained there for over 5 weeks due to feeding issues. His tongue was tiny and barely moved. We saw countless specialists, but no one had ever seen a mouth like his. As a result, there was no diagnosis, prognosis, or treatment plan, so he had a feeding tube placed. We are Christians and have been praying for God to heal my son’s tongue so that he will be able to eat and speak. He is still young, so he is not speaking (just babbling) yet, but I am thrilled to share that he has been eating 100% by mouth since July 1. My son also has a clubfoot and Poland Anomaly, which has only affected his left hand and fingers (they are smaller). After weeks in the NICU and countless outpatient appointments we still had no diagnosis. On July 30 we traveled to another Children’s hospital for second opinions. Within a few minutes of our Genetics/Cranio-facial appointment they diagnosed him with Moebius. My son can smile, wiggle his nose, move his eyes up and down, close his eyes, and make other facial expressions. His tongue is still slightly smaller than average, he cannot move his eyes side to side, and he cannot move his eyebrows up.
    So I’m wondering if you can tell me about yourself. I just want to get an idea of what to expect. Have you seen specialists or had any surgeries that were helpful? Any advice you can offer would be greatly appreciated.
    I am new to blogging, so I do not know how I will know if you respond. My email is jen.trujillo1@gmail.com
    if you would like to contact me that way.
    Thank you!

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