World CP Day Reflections

Wed 07 Oct 2020

On CP Family: World CP Day Reflections
By Xian Horn

There’s a special bond that is often instantaneous for those of us with CP; Those I like to call CP siblings because we truly are a family. There are certain things (often unspoken) only we understand; even if Cerebral Palsy presents itself differently in every person. And there's joy in finding out you’re not the only one who knocks into furniture on a daily basis. Those of us that are ambulatory at all seem to know your shoes get destroyed much faster when you drag a foot like I do, for example; and I once stopped a gorgeous girl on the street because she had my same signature CP gait. I first noticed her amazing dangly summer earrings, then as she walked away I noticed her CP sway. She and I became instant friends. For the record, I generally do not walk around assuming that everyone who walks differently has CP and I don’t recommend you do either…

I am blessed that going to United Cerebral Palsy for preschool at the tender age of one with other kids like me, I was aware of our unique tribe early. And perhaps that made being the only girl with any disability in my “mainstream” classes easier – well, there was one other “mainstreamed” girl in the other classroom and it helped that she was Asian like me and had CP too. We were the same year, though always in a different classroom, attending the same elementary school, junior high and high school, we were together most lunchtimes everyday for about TWELVE years. Despite knowing other CP kids at an early age, I don’t think I ever realized the true size and scope of our exclusive club. Not until meeting the folks at CPARF and learning about the work they do, did I learn many of the stats. I had no idea that there is a child with CP born every hour (1 in 323 babies) and that there are 18 million of us. As an only child, it’s an honor to be a part of the CP family, that is admittedly, much much bigger than my own, and I want to thank CPARF for doing their part in advancing and enhancing our lives.

As an advocate, writer, and speaker, I have always said Cerebral Palsy is the blessing of my life. There are so many reasons for this. Not just because walking with ski poles for support makes you stand out, or because I cut the lines at Disney and the airport; it’s because of the people I meet from all over the world who share their stories with me. This year, I feel even more connected to my CP roots than ever, not just because I was featured this year for World CP Day but because working with CPARF, I learned more facts and about new technologies that are making our lives better and the work we still have to do. I’m also more aware of our community and in quarantine, I’ve had more time to really reflect and understand Cerebral Palsy’s global presence and have an even deeper appreciation of its value in my life.

Thank you, CPARF and World CP Day, for giving us something to celebrate in these difficult times. In these uncertain times, when it may be hard to hold on, I pray that this day reminds us we are not alone, and in whatever way we can, to hold on to each other.

Thu 11 Apr 2024

In the first part of our newest Science Spotlight blog, learn how scientists can harness electricity to help with movement disorders that sometimes accompany cerebral palsy.

Thu 04 Apr 2024

Check out the final part of Rindi and Soren’s story.