March 21, 2024

The Lucky Few: Hi Marley Team Members Share Lessons Learned from Loved Ones for World Down Syndrome Day

World Down Syndrome Day falls on the twenty-first day of the third month of the year to celebrate “the uniqueness of the triplication (trisomy) of the twenty-first chromosome which causes Down syndrome.”

To support this year’s World Down Syndrome Day theme, “End the stereotypes,” two Hi Marley team members shared stories about their loved ones with Down syndrome: Chief People Officer Stef Bishop’s daughter Nora and Integration Analyst Kevin Roller’s brother Stephen. Stef and Kevin delve into what they’d like others to know about Down syndrome, addressing common misconceptions and sharing poignant lessons learned from Nora and Stephen.

Tell us about your loved one with Down syndrome.

Stef: Our daughter, Nora, is in elementary school. Her personality can be best described as happy-go-lucky. She thrives on positivity and delights in making people laugh. Nora is deeply empathetic and always quick to offer a hug when she senses sadness in others. She also likes to do things in her own time; it’s best not to rush Nora, as the outcome will likely be the opposite ;). She loves gymnastics, swimming and basketball. And she recently got involved in Special Olympics; she’s proud to be a “Newport Shark”!

Kevin: My brother Stephen lives on the North Shore in Massachusetts. He’s the most charismatic person I know; you’d be hard-pressed to meet someone in our town who hasn’t met Stephen personally or heard the legend. I’ve run into people who met him in elementary school, and they tell me stories about him like they happened yesterday. He has a big personality that leaves an impression on people that can last for decades. I’m lucky to have grown up with him as my brother.

What is one thing you want the world to know about people with Down syndrome?

Stef: I want to emphasize to everyone that Down syndrome is not something to fear or feel sorry about. Those of us fortunate enough to have someone with Down syndrome in our lives consider ourselves part of “The Lucky Few” because we genuinely believe it. We feel privileged and fortunate!

Kevin: People with Down syndrome are just that: people. They don’t want special treatment; they want to be treated like everyone else. I think about all the times I’ve seen Stephen smile the widest or laugh the hardest, and they all happened when he felt like part of the group: going to the movies, browsing at the mall, going on a road trip, or even just hanging out around a fire pit with his friends. In those situations, he didn’t feel different than the people around him, and they didn’t make him feel different. Those moments can be too rare for someone with Down syndrome when the world seems to throw up stop signs everywhere you turn.

What is a misconception about people with Down syndrome?

Stef: One common misconception is that individuals with Down syndrome are always happy. People with Down syndrome experience the full spectrum of emotions, just like all humans. Like everyone else, certain situations or experiences can make them sad, angry, or scared. It’s important to recognize and respect their emotional complexity and individuality.

Kevin: One misconception that I’ve seen a lot, especially as my brother gets older, is that an adult with Down syndrome should be treated like a child. People with Down syndrome deserve the same dignity and respect as everyone else. I don’t think people do this intentionally, but I think they get nervous. People have told me that they’re concerned about inadvertently saying or doing something wrong when interacting with someone who has Down syndrome. What I don’t think most people realize is that they’re getting in their own way; if you want to reach out to someone in your life with Down syndrome, then just do it! Just talk to them! I promise you they’ll appreciate it and that you won’t make some mysterious, egregious error. People with Down syndrome are people, and I know that’s what my brother wants more than anything: to be treated like everyone else.

Secondly, Down syndrome doesn’t define someone; it’s just a piece of who they are. If you asked me to tell you something about Stephen, that would not even crack the top ten. I’d tell you about his favorite video game (Skyrim, by the way) or his love of sports cars and Star Wars. I’d recite his order at every restaurant in the world (cheeseburger, cooked medium, absolutely no onion, lettuce or tomato, a dab of ketchup and, if he’s feeling brave, a little bit of mayo, plus white rice on the side). I’d tell you about every time he just started chatting with a stranger in public, which is a real struggle for an introvert like me.

Knowing what you know now, what advice would you give yourself when you got the diagnosis of your loved one having Down syndrome?

Stef: This question always stirs up emotions for me because when we received Nora’s prenatal diagnosis, I was filled with fear of the unknown and of the unexpected journey we were about to embark on. Having a child with Ds was not part of our plan; how could this be happening? But, looking back, I wish I could reassure my past self of the profound joy, strength, and resilience that Nora would bring into our lives. Despite the initial uncertainties, I wouldn’t trade this journey with Nora for anything else. She’s this little beacon of light and lessons that we get to do life with, and I wouldn’t have it any other way.

Kevin: If I could go back in time and chat with my five-year-old self, I’d tell him that your brother is okay! No two people are the same; everyone is different, and that’s just as true for Stephen as it is for everyone else. It’s okay to be afraid and to worry about him, but your top priority shouldn’t always be to put up guardrails for him. Just watch: give him a little time, and you can cheer him on from the sidelines.

What is a lesson that your loved one with Down syndrome taught you?

Stef: Two things:

  1. Find joy in life’s simplest moments. Nora cherishes the simple things in life. From stealing my phone for sneaky selfies to belting out all the lyrics to Taylor Swift songs with us, she finds delight in life’s uncomplicated experiences.
  2. Embrace your true self without reservation. Nora is unapologetically herself. She doesn’t concern herself with the opinions of others or the need to impress anyone. Outfit doesn’t match? Not to worry. Eating a slice of pizza backward? That’s the way she does it. She lives life on her own terms, and it’s refreshing to witness. Her authenticity is a constant source of inspiration and admiration.

Kevin: Stephen taught me what living life authentically looks like. He doesn’t disguise his emotions; if something makes him mad, happy, sad, confused, or bored, he’ll tell you exactly what he’s feeling, no filter. Far from being offended, I think people appreciate that about him. Stephen has an affinity to the truth that’s hard for me to wrestle with; there have been plenty of times in my life when I didn’t feel good about something, and I didn’t say anything, either because I was hung up on social norms or considered other people’s feelings more valid or important than my own. I think Stephen would be mad at me if he knew I did that—well, I suppose I don’t really have to guess, do I? He taught me what it means to be vocal and live your life out loud, how to be brave and honest with yourself and your feelings.

Want to learn more about World Down Syndrome Day? Click here to get involved.

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