1 of 70,000 by Kaitlyn Mena

When I read that number I almost cried. Sure I have known Turner’s Syndrome was rare but this was a wake-up call for sure. There are almost as many Hispanic women in Rhode Island (66,137) as there are people with Turner’s in the entire United States. To put it in another way for those who are unfamiliar with the states, “About 240,000 people are injured by lightning strikes each year.’ Yes, we are rarer than being struck by lighting baby wow, how did we get so lucky? The odds were not in our favor that is for sure yet we beat them my fellow TS warriors.


This only represents around 1% of what could be and to those families who have lost their loved one. I am so sorry for your loss. Before I was born they asked my mother if she wanted to abort me because they suspected I might have Downs Syndrome.  Obviously, she said no but I can’t help thinking of how close I came to not being here after everything else had lined up it came down to a single choice. If that is not something to be grateful for I do not know what is. This makes me smile really, many people know me as a buddle of energy and this is why. I have the privilege of living for those who never will attend a dance, learn how to ride a bike, fall in love with someone, or get to pack up for college. Even with TS challenges and of course depression, it is a beautiful and wonderful (almost magical) life I get to live.

Role Model?

One of the things that I have learned recently is I can not depend on others to do the daring things for me. I have to step up because whether I want to accept it or not there are going to be people who notice me. Being different gets people’s attention so I might as well accept it. At times it is exciting and such an honor, while at other points n time, you wonder if being a leader is worth the sacrifices that come with the albatross called responsibility. Kind of like being a celebrity there are certain standards that must be met almost constantly. As Gandi once said, ‘Be the change you want to see in the world.” The one I want to live in is one where people don’t feel ashamed of what makes them who they are especially those who are dealing with stigmas and stereotypes like I have during adolescence.

Waiting for inspiration?

For anyone thinking “This is great but I don’t have your story to drive/motivate my actions every day the way you do.” That is fabulous! This is not a one size fits all situation. We must tackle different hurdles and cross different bridges that are just a part of life. The only thing that really matters is that we find something that we want to change about the world and then taking action towards that change in some way. Even a few steps can be better than words. Learning from someone sometimes means not repeating their mistakes. One of mine has always been trying to be someone I wasn’t.
An athlete when I tried out for basketball and field hockey, extroverted though that fooled no one, cold as if certain things didn’t bother me, calculated because honestly nearly everything I do is on a whim, (and straight obviously).

Looking Ahead

Next month is both Black History Month and Turner’s Syndrome Awareness Month. In order to celebrate I will try to do something extra special for all of you!
(It may or may not be poetry, we’ll see). I feel so lucky to be in a place mentally where I am so comfortable with myself and the realities of living with TS. I am really excited to be making progress all the time towards heading back to university so I should have some updates in the coming months! This summer I plan to dive into explaining the process for those readers who are collegebound. If you are on those individuals who will be writing one of my recommendation letters thank you again so much for your support!

In Summary,

There is always a silver lining to be found if only we dare to look for them. Recently my brother told me he probably would have quit if he had my job and it got me thinking not everyone could live our lives so we should not take our strength for granted,
Of course, we do not see it that way because it seems unavoidable that we face whatever life has placed in our path with courage and grace. Missing how spectacular particular accomplishments really are we’ve done. There is nothing wrong with letting your own life inspire you to go further than before. This year is going to be full of adventure and we are just getting started! Thank you so much for reading, and please feel to email me! Kaitlyn.Ruffin21@gmail.com Much Love Always!

Originally posted on kaitlynmena.blogspot.com

Thank you Kaitlyn for sharing your story with us.

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