“My journey began 19 years ago when my mom was pregnant with me and had a test. The test told my parents that I was going to be born with Down syndrome. Because they found out before I was born, my mom had lots more tests when I was in her tummy to make sure that everything was okay with me. The tests showed I had a good heart and everything else was good too. When I was born, I had to stay in the hospital a little longer because I had some trouble breathing. My mom and dad and my sisters came to visit me and hold me every day at the hospital. After six days my lungs were clear and I finally got to go home. After I got home, there were people that started to work with me (and my parents) to help me learn different things. They helped me to sit up, crawl, walk, eat, and eventually talk.
Growing up, I was super lucky to have two older sisters. Their names are Kathryn and Cara, and we call ourselves the ‘Cheetahs’ (after the movie The Cheetah Girls.) Kathryn is eight years older than me and Cara is six years older than me. Since my sisters were older, they were already busy with soccer, softball, dancing, Girl Scouts, and school. I got to go watch them all the time when they did these things, and I wanted to be just like them.
When I was old enough, I started playing soccer, softball, taking dance, and even joined Girl Scouts. Of course, I went to school too. I was also really lucky that my parents found a program where I could ride horses, and they signed me up for that. (They knew I would like it because my Dad and I used to go to the stables near our house and look at horses, and I always loved them.) I have been riding horses now for over 11 years! I ride once a week, and my favorite part is trotting.
I am super social and love a good party. Whether it is hanging out in my neighborhood with our friends, or going to a school dance, I love to hang out with other people. One of my favorite activities is going to fancy dances. I have gone to dances put on by the Down syndrome Association of Orange County, the Tim Tebow Foundation, and the Pujols Foundation. I have also gone to school dances. I love getting dressed up, and I love dancing with everyone, especially cute boys! One day I really want to have a boyfriend like my sisters do.
I’m also lucky that my two big sisters are so good to me. They take me to places like concerts (we have seen the Jonas Brothers and One Direction.) My sister Cara lives in New York now (that’s where she went to school), and I miss seeing her a lot. But when she comes home she lets me hang out with her and her friends, and that is really cool! Both of my sisters have really nice friends that are super nice to me too! I also have a pretty big family of aunts, uncles, and cousins. I love spending time with them, and they are all super nice to me too. I even got to be at some of their weddings! I also love to go on vacation with my family. My favorite place to go is Hawaii because it’s fun and they have a lot of seafood there. My favorite thing to do in Hawaii is to go on a boat. I also love to go to Mammoth Lakes, California, and I even visited Italy once.
Having Down syndrome has been pretty cool. For most of my life, I didn’t even realize I had it, because it’s normal for me. Learning things was harder sometimes. I was in some special ed classes and some regular classes in school. I had lots of really nice teachers and aides that helped me learn how to read write and do math. Math is still really hard for me, but I’m pretty good at reading!
My favorite classes at school were music and drama because I love to sing and perform. I also took speech classes ever since I was little to help me speak more clearly. I still get frustrated when people can’t understand me and I have to repeat myself because sometimes it is hard to say what I want to say. I know what I’m thinking but it can be hard to find the words. Most people are nice to me and they are patient with me. The hardest part of having Down syndrome is that there are still a few things I can’t do yet, like drive a car. That makes it harder for me to go places and hang out with my friends because someone always has to take me there.
I also want to go to college like my sisters. They both went away to college and it looked like a lot of fun when we visited them. (I really missed them when they went away.) Since I finished high school last May, I am now in an adult transition program. I go to school every day for a few hours and learn skills that will help me to get a job and live independently someday. I am also taking a college class now. I took a music class last semester, and I’m taking a class called Rhythmic Movement this semester. I wish they were in person but they are still Zoom classes because of COVID. I hope to take more college classes when they are in person again. I really hate COVID and wish it was over. At least my adult program and all my other activities are in person again. I love being around other people and really missed it when everything was on Zoom.
In my free time, at home, I love to watch movies and sing. I really like musical theater so my mom takes me to see plays a lot. I’m even taking a musical theater class right now, and I love it! I also like to make videos. I like to watch YouTubers and influencers, especially when they make funny videos. I always thought it would be fun to be an influencer. I would also like to live in a mansion in Beverly Hills one day.
I also love food. I really like going out to eat at restaurants with my family. My favorite things to order when I go out to eat are chicken piccata and seafood. I love all kinds of seafood, including sushi, calamari, salmon, and my newest discovery—lobster. My parents don’t always let me get the lobster though. They said it costs too much. I also LOVE ice cream. It’s my favorite dessert of all! I’m not a big fan of vegetables or spicy foods. I also love to cook with my sister and her boyfriend. They cook a lot and they have taught me how to make some pretty cool things. I’m also learning more about how to eat healthy foods because I know they are better for me.
I got the idea to start a food Instagram because my sister Kathryn worked for a company that helped restaurants with social media. Sometimes, she would work with food influencers, and I thought it would be really cool to be one of them. I asked my sister if she could help me set up my own Instagram and she said yes. Her boyfriend helped us come up with the name, @DownfortheEats. I take most of the food pictures that we post and my family usually takes the pictures for me. It is so fun to see the comments that people write and I love it when I get new followers. It makes me feel like I’m famous. And I love that it gives me an excuse to ask my parents to go out to eat and try new places and foods. I also hope it helps my favorite restaurants by telling other people how good they are!
I think the most important thing for people to know about me and others with Down syndrome is that we want to be treated like everyone else and we want to be able to do the same things as everyone else. Sometimes people think that people with Down syndrome are all the same, but we are not. We are all different and have our own personalities.
What people should know about me is that I may need more time to figure some things out. I may need patience from others when I struggle to do or say something. I also have a really good sense of humor. I also understand a lot more than people realize, even if I’m not always good at explaining what I know. I’m really good at knowing how other people are feeling and can tell when they are happy, sad, upset, or mad. I’m a great hugger, and I love trying to make other people feel better when they are sick or sad. I have the same hopes and dreams as other people. I want to be invited to parties, be included, be independent and make my own decisions. And maybe even be famous one day!”
This story was submitted to Love What Matters by Julia Kelly and written with help from her sister Kathryn Kelly and parents Chris and Denine Kelly from Huntington Beach, California. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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