My Unique Life

Shopping for clothes isn’t always an easy task. The clothes that fit me are made for a young child and aren’t always age appropriate. Pretty much every pair of pants that I have had to be hemmed because while they fit in the waist the length is way too long. Shirts are sometimes hard to find too because I want something that is going to make me look older and not like a child. Plus I have the bonus fact that I have to find shirts that will work with my shoulder replacements. Since my left shoulder started to fail, now I have to get the size bigger so that I can comfortably put it on but then I also have to find shirts that aren’t going too look too big also.

Shopping for shoes…you can forget it! The only shoes I can wear are New Balance tennis shoes because they make them in extra wide and because I was born with clubbed feet, and have had numerous surgeries to correct them, extra wide shoes are all I can wear. Dress shoes, sandals or any kind of nicer shoes is out of the question for me. Plus the shoes I do have the left one has to be lifted since I’ve had a right hip replacement, which made the right leg a little longer than the left.

So clothes shopping isn’t always as exciting to me as for some of my friends.

I’ve had people ask me if I have ever wished I wasn’t a little person and the truth is I’m proud of who I am. Has my life been full of challenges? Yes. Was it difficult growing up facing so many surgeries? Yes. I faced a lot growing up and faced so many unknowns. But that didn’t stop me from going to school, from making friends, from getting a job, from learning to drive a car, from becoming the person that I am proud to be. When the world looks at me they see a little person, but my story is so much more than my height. My story is unique and my story is mine!

When it comes to traveling as a little person it can be difficult for me to travel alone. In fact I prefer having someone to travel with because I never know what obstacles I may face. The suitcase that I usually use is over half my height and can be very difficult for me to navigate. (Recently I invested in a suitcase with the wheels that turn every which way because due to my shoulder I couldn’t even push or pull any other kind). When traveling on a plane it’s usually not that bad for me. My feet don’t touch the floor so if I’m traveling long distances sometimes my feet fall asleep.

Also sometimes people don’t realize that I am standing behind them or in front of them and so I am always cautious of other people not seeing me.

There have been a few times when I have traveled and stayed at hotels and the doors to the room have been so heavy I couldn’t even open them. And of course any time I travel I have to remember a stool (I have one that folds up and fits in my suitcase). Remembering a stool is something that I am not always good at remembering though because I am so use to adjusting to whatever that I sometimes forget that I need it. Luckily I’ve got friends and family that try and remind me.

Many individuals with dwarfism have identifying traits found in the features of their hands. Some forms of dwarfism have different features that can help doctors identify that specific form of dwarfism. Over years, at the different Little People conventions that I attended, many doctors were fascinated by my hands and feet. In fact Dr. Andrew Jackson from Scotland, who was the doctor who first took my DNA to start finding the gene, he took one look at my hands and said “you have Saul Wilson Syndrome.”

(Pictures is my left hand)

Continuing with the topic of Conferences, we are often asked… “Why should I go? Why should my family attend?” To be honest, it’s hard to sum up the benefits of conferences into a few sentences, though it’s truly the community that is formed in an accommodating, safe space, where staring isn’t a thing, and LPs can socialize, mingle, and dance eye to eye. It’s such a great feeling! For more details and FAQs, see our website – https://www.lpaonline.org/faq-national-conferences

(Shared from the Little People of America Facebook page)

Did you know 80% of people born with dwarfism have average height parents? There is an array of emotions that parents experience upon the moments their child is diagnosed with dwarfism. LPA strives to provide resources locally and nationally to help support parents as they welcome their beautiful LPs into the world. Be sure to check out LPA’s Parents’ Resources Page for more information.

(Borrowed from the Little People of America Facebook page)

There is a quote that says “Fill your life with adventures, not things. Have stories to tell, not stuff to show.”

Growing up I spent a lot of time in hospitals or dealing with doctors. My mom, aunt and I would go to little people conventions trying to learn more about my dwarfism. But most of the time we ended up just going to see the cities and have fun. That was the only time we really went on vacations.

Now that I’m older I’m trying to live my life with more adventures and have fun. I want to make as many memories with my nieces and nephews as possible.

LPs are often aware of the stares, the chuckles, or the ever often camera snap. Disability culture is filled with curiosity, we understand that, though it’s how you react to those curiosities that truly matters. If your instinct is to snicker, stare, or pull your children away… stop, educate in that moment, and then carry on. Educating around differences and disabilities encourages an inclusive culture and makes the world a better place.

(Borrowed from the Little People of America Facebook Page)

A year ago today my story made it to the front page of our county paper. A lot of people around town know who I am because I don’t change a whole lot. They see me at the stores or driving around town or at restaurants. Plus a lot of people know my family. So as I tell people “I am famous in a small town.”

When the medical article was released to the world. I e-mailed every local paper and local TV station trying to get someone to cover my story so that I could raise awareness.

The county I live in wrote an article about me and several other county papers shared the story as well. A local TV station saw the newspaper article and e-mailed me about doing a TV interview (which I did). The night of the interview I got off work and rushed home to get ready. As my sister and her kids sat there, along with my brother, they asked “are you nervous?” and I said nope I was ready!

I have 13 nieces and nephews. Usually around the age of 5 when they start to realize they are growing taller than I am- that is when I get the questions. That’s when they ask “Why don’t you grow taller?” “Why am I taller than you now?”

Just like any other child I explain to them that God made me to where I don’t grow taller. But I tell them that I am in fact older than they are.

When I am out in public with my nieces and nephews and they see someone staring at me, they tell me that they see the kids staring but I always love how they say it…”Monica that kids staring at you, why are they staring?” Simply by growing up around me they have learned that everyone is different, but that doesn’t mean we should treat others differently.