Dancing in STEPtember: Xian’s Story

Dancing in STEPtember: Xian's Story
Posted on Tue 22 Sep 2020

Dancing in STEPtember: Xian's Story

By Xian Horn

At 5 months, I wasn’t sitting up. My Chinese grandmother and medical doctor who understood child development knew that something was up (or not up in this case ;)) Month after month, doctors would examine me and tell my parents “She’s fine” and send me home. It was at a year old, that I was finally diagnosed with minor CP. 

My parents said no to grief counseling (not the right move for everyone, but seemed to work for my parents) and enrolled me immediately in UCP’s preschool (not many people can say they started preschool at ONE, but I did) and my dad, a former lifeguard, got me in the pool as often as possible. I was a giggly happy kid - and so they just rolled with it and let me be me. They never denied my disability or put too much focus on it either. They focused on me as a whole, exuberant child. They poured their love into me and made me feel like I was the center of the universe (you know, like most spoiled rotten only children) :))) I walked on my tippy toes til I was eight. So, when I wanted to be a ballerina, they got me a ballerina costume for Halloween (two years in a row). And it was this kind of parenting that always made me feel like more and never less.

Anyone who knows me knows I’ve always considered my CP a blessing. I walk the world with two shiny ski poles for support and people don’t forget me. Being unique helps me make more friends and people seem to open up to me more easily.

As an advocate and writer with CP, active at all kinds of events, but still often working from home, I’ve gotten quite used to being sedentary. But that wasn’t always the case. Coming across my 6th grade yearbook, the thing that stood out and surprised me most was that I listed sports as a favorite hobby. I laughed when I first saw that because I hardly call myself a sports fan now Still, as a daughter of an avid athlete, it wouldn’t be surprising except that I tend to avoid *all* exercise in my adult life, unless it’s dancing.

But it made me think, I’d like to get back to that sporty child in some way. Now in quarantine in a two bedroom in NYC, with our terrace sadly under construction per our buildings orders, I crave exercise more than ever. So I was super excited to get involved with Steptember this year to support CP research, get moving instead of staying home working from bed all day, and get other friends with CP involved and moving with me too. Sadly, quite a few of my CP sibs expressed excitement and signed up, but couldn’t commit due to recent or upcoming surgeries.

At first, I was disappointed - but then it motivated me, because I realize that’s exactly why we need CP research. We need more non-surgical options for kids and adults with CP. We need better surgical options, and more support for children and adults for CP, because the work does not stop at diagnosis. That is just the beginning and as we get older most of us encounter challenges and wear and tear from decades of moving a very different way. Many of us also have chronic pain that worsens over time. On the plus side, as my CP sister and CPARF queen Jocelyn Cohen points out, some of us with CP also get more defined abs and other perks from our unique bodies. Having supported most of my body weight for years and years with my upper body, I’ve always had and been a fan of my extra strong and muscular arms, for example.

Now, I’m so excited to use Steptember to honor CP and move in my way, walking and dancing through these unprecedented times knowing good things are still happening and good people are working and moving together for a greater good. Please join me in what way YOU can to empower my siblings with CP and future generations so they too can live more beautifully with CP.

The second part of our COVID-19 Q&A, which also has implications for research surrounding aging and cerebral palsy.

Will Howell is the founder of WillPower Ties. Discover what motivated him to start his business, and learn about the challenges and surprises he experienced along the way.