Annika’s story: From older sister to lifelong advocate 

**This story was submitted via #MyDsStory and won the contest! 
Written by our guest writer, Annika Soderfelt 

Aaron, my little brother, has Down syndrome, and he is one of my best friends. He is only three years younger than I am, and the last almost 23 years with him have shaped me into the person I am today, personally, professionally, and socially. 

We have grown up and done everything together, and, like any siblings, we wrestle, squabble, drive our parents crazy, and team up against our older brother, but, unlike other siblings, our bond goes a step further. While other siblings grow and move on with their life, I get to remain a close part of Aaron’s life every step of the way. 

This was never more apparent than when I went to college, and we both felt the might of that blow. Although regular FaceTimes, texting, and GamePigeon games helped keep us sane, it wasn’t the same as being able to squeeze him when I was upset, laugh with him on the good and bad days, and have board game battles when we were bored. 

Covid, no doubt, tore the world apart, but it also provided me the opportunity to be at home with Aaron like when we were little. We went on walks while singing our favorite songs, took countless silly selfies, learned to cook together, hammocked, and, most importantly, I got to rediscover the joy of my relationship with him that I had forgotten in the chaos of getting older. 

Aaron is my motivation in all that I do because I know that if I can open my heart as he opens his, then I can at least change our little corner of the world for the better. It may seem like a lofty goal to change the way the world thinks, but I have known since youth that I wanted to try to change the way society views people with Down syndrome. I was, and still am, driven to create equity for all abilities, and it is this drive that guided me to where I am now. 

When it came time to decide on a research topic for my degree, I realized I wanted to give back to a population that had given me so much. My life with Aaron and his experiences inspired me to try and make a change as I conducted my research in order to create a website for the mental health and wellness of individuals with Down syndrome and their loved ones to combat the stereotype that people with Down syndrome are “always happy.” Because, although Aaron’s smile lights up a room and his laugh is contagious, I know that he, like others with Down syndrome, is not immune to the stresses of the world around us. 

I once learned that love is knowing, wanting, and doing what is ultimately in the best interest of another, so I can firmly say that there is no one I love more than Aaron and no one who can love like he does.  

In the long term, I want to take all that I will learn in my life as an OT and a sibling and utilize this knowledge to create a series of programs for people with Down syndrome to ensure that they are given the same opportunities to live a full and fulfilling life full of wonderful things. 

Aaron inspires me every day to shape the world for the better, one step at a time. I am forever thankful for him and all my homies with extra chromies (with a special shoutout to all the other sibs out there).  

Check out Annika’s website: Notalwayshappy.org

Congrats to Annika for winning the #MyDsStory contest and earning an Amazon Gift Card for herself and the San Diego Playhouse!  

Though the contest is now closed, we still invite you to share and submit your stories so we can continue to highlight the beauty of Down syndrome! Submit here.

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