By: PRISMS Regional Representative, Remi Robbins

My name is Remi Robbins. I live in King of Prussia Pennsylvania, a few miles west of Philadelphia, with my boyfriend Jordan and our greyhound General. My younger sister Calli was born in 1998 and diagnosed with SMS in 1999. My parents were lucky to find an incredible genetics counselor who properly diagnosed her after many failed attempts by others, but adapting is an ongoing process.

I have spent 22 years of my life growing up with Calli and have learned so much and continue to do so. She is funny, outgoing, affectionate, sometimes sassy, and has numerous hobbies that she is passionate about. She has competed in the Special Olympics held at Penn State, has graduated high school, and persistently shares her positivity and resilience with everyone she meets. She is the light of my life and inspires me to be patient, understanding, and to treat every situation with love and kindness. I hope to make her as proud of me as I am of her.

Growing up as the “normal” sibling was hard. My parents did everything they could to keep me feeling loved, seen and heard. They put me in a semi-regular child oriented therapy session that was called The Rainbow Room. It helped me feel special and important. They made sure to include me in their discussions, explaining what things meant and how I was supposed to handle it. As long as Calli has been alive I have never once wished she wasn’t who she is which seems to be the most common sentiment from what I’ve read and what I’ve heard as an adult. What isn’t talked about often enough though is a sort-of survivors guilt instead. Why am I able to drive a car, to get a higher level of education, to have romantic relationships, but she isn’t and perhaps never will? 

I remember vividly on multiple occasions when I was much younger that I was so embarrassed of her. Some of the more common behaviors of SMS aren’t able to be easily explained to people outside of that world. How could I tell my friends that my sister smashes her head into a wall when she’s frustrated? What excuse could I make up for all the locks in the kitchen so she wouldn’t get into food in the middle of the night? I felt like her behaviors reflected on me, especially when I was kid, and I guess a part of me tried to ignore that shame by pretending she didn’t exist. There were times I resented my life, that I had to carry a weight that I didn’t ask for or wasn’t strong enough to keep bearing.

Now that I’m a little older I see the world much differently, I see my family and my sister much differently. It took years for me to get this far in my comprehension so it’s okay if it takes you a long time too, SMS or otherwise. Growing up with Calli taught me about sacrifice, about guilt, about shame, about finding your footing in a world that isn’t always about you. But SMS also exposed me to patience, to kindness unto others, to stop judging everyone else when they don’t fit into your own personal mold, and that the world can’t always be seen through rose colored glasses. Being a sibling of someone with SMS isn’t always easy but nothing in life really is. Being aware, being present, and being understood are so important in everyone’s life, especially for someone who doesn’t experience the world the same way most do. Sometimes I still feel that guilt, like it implanted itself into my DNA. But Calli doesn’t have to know that it’s there and there’s still a lot of time to make up for it. Acknowledging my own faults was the first step in treating Calli like my sister and not to be so ashamed of the unconventional family I’m a part of. I still have never wished that she was different, but I have wished that I was. I’m working on making that happen for the both of us. 

This year I have signed on to be a Regional Representative in Pennsylvania and hope to give back and help others in my area.   I am here to support anyone who needs a helping hand or a shoulder to cry on, to provide insight and resources, and most importantly to spread and encourage love and understanding.

Want to share your SMS story with the PRISMS community? You can submit your own story to the PRISMS blog by filling out our Share Your Story form.