When I was babysitting a couple of kids in 2018, a three year old boy asked what happened to my hands. I’ve found that it’s a bit difficult to explain a genetic mutation to little kids, so I first explained to the kid that everyone is special and everyone is a little bit different! I then told the curious boy that we can actually see one thing that makes me really different and really special — my hands! “Did you know that my hands can actually change colors?” I asked the little boy. His eyes widened in amazement! I then held out my right hand and pressed down on my port-wine stain birthmark. “Are you ready?” With excitement written all over his face, he nodded his head! He gazed at me like I was a superhero about to reveal my unique superpower. As I showed the boy how the birthmark could change colors when touched, he exclaimed, “Wow, you’re so cool!”
Our short conversation altered how he viewed my syndrome and anatomical differences. Rather than calling me “weird” or “ugly” because my hands didn’t look like his, he declared that I was “cool.” Our conversation positively shaped his perspective.
Kids are often brave enough to ask the questions that adults are afraid to voice. Kids are willing to have the conversations that adults tend to shy away from. Adults are sometimes so afraid of offending or hurting those with visible disabilities or diseases that they walk on egg shells around them, wanting to get to know them but afraid to ask important questions. Throughout 2019, my goal was to try to eliminate some of those egg shells in my own life. Why? I think we better understand one another when we converse about our diverse experiences.
Throughout 2019, my husband (Ethan) and I used my social media accounts to have an ongoing conversation with my followers about life with a visible disease/disability. We’ve placed all of our posts from 2019 on this blog in case anyone wants to revisit them. We may continue to occasionally share what we learned (and are still learning) about living in the midst of suffering, staring, and the struggles that come with a visible syndrome. Though we don’t write short posts as frequently as we did in 2019, you can still join this conversation by asking us questions, checking out the resources listed on the “Resources” page, and reading our posts. You can find all of our posts on the “My Posts” page; however, you can also find posts about specific topics by clicking on particular categories in the sidebar. Lastly, you can find some of my writings for magazines or other blogs under the “Articles” tab. Enjoy!
Growing in the Groaning 