Reflections on Gratefulness with NODCC Siblings Program Director, Emma Charles 

By Miriam Bernard

When longtime NODCC member Emma Charles (maiden name Emma Richard) was first asked to participate in our interview about gratefulness for family members with a DCC, she jokingly asked, "Do you mean an article about why I'm grateful for my brother, or why he should be grateful for me?" If you're a sibling of a person with a DCC, perhaps you'll find the sweet sibling humor in her question. Today we'll get to know Emma, her brother Sam, and what makes Emma grateful this Thanksgiving season.

Emma's first interactions with the NODCC community were as a very young child, and she actually participated in her first NODCC conference panel at the ripe old age of nine. She's now a fixture of the NODCC family, as is her brother, Sam. Since 2012, Emma has run the siblings' program for the NODCC, giving siblings of persons with a DCC an opportunity to be real and authentic with others who understand their life experiences.

Emma is two years older than Sam, meaning she was introduced to the world of disorders of the corpus callosum as a very young child. For her, there wasn't a sudden adjustment or lifestyle change; she has grown up with Sam and all the challenges and blessings that accompany having a sibling with ACC. She recalls as a young girl feeling a responsibility to be as light a burden as possible on her parents so they could focus on giving her brother all he needed to thrive. This desire to be "the responsible one" and "as perfect as possible" are challenges she has navigated and overcome as she's become an adult.

Despite these obstacles, our conversation with Emma overflowed with reasons she is so grateful for Sam and all she's learned from having a neurodivergent brother. Emma explained that Sam taught her how to exercise compassion from a very young age. She struggles to imagine what her life would have been like without him, because his spirited personality, struggles and triumphs have been there for as long as she can remember. What she does know, however, is how different things would be without him. Emma states, "He's so full of life, and so full of joy. Everything Sam does is his 'favorite thing ever'. He has a joy about life that is unparalleled with anyone else I've ever met." 

While Emma and Sam were growing up, Sam announced to the family, "I'm going to be a motivational speaker." and the family encouraged him but had reservations about the loftiness of these goals. They didn't know then how many obstacles Sam would be willing to overcome to realize those dreams, and in the end, he just went and made it happen. Emma states that Sam simply doesn't possess self-doubt the way a neurotypical person might, so when he expressed these dreams, the only logical thing to do was to go realize them. Sam is now not only a motivational speaker, but also a brand ambassador for Spinmaster, the company that produces Rubik's cubes. We can all learn a poignant lesson from Sam's unwillingness to let self-doubt infiltrate his life goals.



Another reason Emma feels grateful for the experience of having Sam for a sibling is her ability to understand that at first glance, you simply don't know what's going on in someone else's life. We all have such different backgrounds and abilities to communicate. Someone may look typical, but when we make assumptions about them, we miss opportunities to really see people for who they are. Having Sam as a brother has made Emma aware that there's so much that goes on behind the scenes, and it's worthwhile to get to know a person as a whole, not just what's on the surface.

This time of year, Emma's family enjoys some special traditions that they've all come to treasure over the years. Each year on the day after Thanksgiving, the family gets together and writes down their Christmas lists. Emma feels that time together is really special, especially as they've gotten older and everyone has grown busier. One of Emma's favorite holiday traditions of yesteryear was taking Sam Christmas shopping. Each year, they'd choose a special day and pick things out for their parents. Emma remarked on the bittersweetness that this tradition is falling by the wayside, because last year, Sam made a major step toward independence by acquiring his driver license, and just recently, he bought a new car! Emma and her family are thrilled at these leaps toward autonomy, but it also means Sam no longer needs her for that special gift-buying excursion. She does still remind him to go shopping, though, like any good big sister would. 

Emma's favorite new holiday tradition is that Sam sleeps at her house on Christmas Eve, so he can wake up with her children, Piper, 5, and River, 3, and watch them open presents. Sam absolutely loves being an uncle and being involved in the lives of his niece and nephew. This has allowed Emma to see her brother from a new lens - the eyes of her children.

When asked, "If Sam WERE to express what he's grateful for about you, what do you think he'd say?" Emma chuckles, but answers thoughtfully. "I would say he likes that I'm willing to listen. I'll drop anything in an instant for him. I also think he's thankful I made him an uncle. He loves being the fun uncle. Lastly, we're very close. He tells me things that he doesn't tell others, so I find that special. I can have real conversations with him, and we can say the hard things."

Emma would like to express one final thought in regards to gratefulness, and it goes out to every single person reading this today. She states, "What I really want to say is, most of all I'm incredibly thankful for the NODCC community. There's no way we would've gotten through everything we've overcome without the connections, friends, and community of the NODCC. Because of Sam, we have an extended family that we will be forever grateful for. Sam has a cheering squad that will always say, 'Sam, you're the best no matter what!' And that is an incredible thing to have."

May this season bring you the warmth of family and friends, and, like Emma, reasons to reflect on your own gratefulness and the treasure that is our NODCC community.