Dr. Jeni Stepanek remembers studying for doctoral school with her young son, Mattie, who once scored higher than she did on an exam—the son who published seven best-selling books of poetry and essays and who believed that peace is possible.
Stepanek, a Rockville resident, put off defending her dissertation for several years after Mattie passed away a month from turning 14. Her dissertation was on bereavement, specifically families who have children with degenerative conditions, and it hit close to home for Stepanek, whose three older children also died from the same neuromuscular disease.
“It was amazing to go through this program with my son, but then he passed away before I defended my dissertation, so that was really, really hard,” Stepanek says.
Twenty years after Mattie’s death, Stepanek—known as “Mama Peace”—continues to run the Mattie Stepanek Peace Foundation in his honor. She is an award-winning speaker and writer, advocate for world peace, governor for the We Are Family Foundation and a national vice president for the Muscular Dystrophy Association. Her work centers around messages about disability, grief and parenting.
Stepanek is also a senior faculty specialist at the University of Maryland, College Park, where she works with the Maryland and D.C. Deaf-Blind Project to increase access to education.
Stepanek says her life has been difficult between losing all four children, going through a divorce, living with a neuromuscular condition and surviving cancer. She says her strategy for keeping her head up is to have a shoulder to lean on.
“I’m looking at my world falling apart, but there’s always at every point in my life a friend, a teacher, a colleague that helps me remember why I matter and why I belong in this world and what difference I make,” Stepanek says.
She made it her life’s mission to remind others that they matter—the words “You matter” are embroidered onto a piece of fabric on the headrest of her wheelchair.
“I believe peace is possible for each person, whether they have challenges or if they’re on top of a mountain, whether they are celebrities or searching for who they are in this world,” Stepanek says. “I believe that each person can come to a point where they can say ‘I’m okay with who and how I am as a person,’ and ‘okay’ is where peace begins. Whether it’s my work at the university or as Mama Peace with Mattie’s Peace Foundation, I try to help people understand that they matter, they belong, so that they can say, ‘I am okay within. I know peace, even if I have challenges.’”
She says that self-acceptance is key to what will bring peace to communities, which has a ripple effect on cities, countries and, eventually, the world. This is one of the messages Stepanek tries to convey through her Peace Chats with the foundation.
Through Peace Chats, she works with Main Street Connect and Upcounty Community Resources, two nonprofit organizations, to talk to caregivers, adult self-advocates and children dealing with medical, emotional, behavioral, physical and developmental challenges. She shares about the purpose of play—Mattie’s motto was “Remember to play after every storm.”
These days, Stepanek keeps her calendar packed with speaking events, Zoom conversations and coffee chats. Between researching, blogging, writing, volunteering and working on a book, documentary and film production, she hardly has down time.
Stepanek wants to spread the message that every person serves a purpose.
“However intense the challenges are, how long you’re on Earth, you have purpose,” Stepanek says. “And as Mama Peace and as Dr. Stepanek, I feel that my privilege, and therefore my responsibility, is to help each person understand how and why they have purpose or how and why someone else has purpose, and to bring all that purpose together in a way that builds community and a better world.”
Visit the Mattie J.T. Stepanek Park in Rockville or find more information about the Mattie J.T. Stepanek Foundation at mattiespeacefoundation.org.
