“We are a glass-half-full type of family.” –Judah Semenak
It was a special day at Martha’s Vineyard Museum on July 11 when we welcomed the Semenak family from Ottawa, the capital of Canada. They came 411 miles so that their daughter Devin could experience the “Clifford” exhibition. Every day we wake up not knowing what the day will bring. It’s exciting if we let it be, and why not let it be? “Carpe diem” and “Live life to the fullest” are the Semenak family credos. Giving in to life’s challenges is not part of their story; they choose to work through the hard days, knowing that there will be just as many good ones.
The story begins like many do at the museum: Our visitor services manager, Brien Heffler, receives a phone call, and his heart takes over. Brien goes to great lengths to make sure every individual makes a meaningful connection with the museum. The Semenaks were no different, or were they? We would soon learn of Devin’s love of Clifford the Big Red Dog, when her father Michael, after Googling “Clifford,” called to find out more about our exhibition, and get help planning their visit. This would not be the first time they’ve traveled to see a “Clifford” show. In previous years they traveled to Boston, Pennsylvania, and their hometown of Montreal, before moving to Ottawa. Mike’s family came to the Cape a lot when he was a kid, and when he and Judah first started dating. But it has been 11 years since they’ve been back, so it was time.
We were all anticipating their arrival, and meeting them filled us all with admiration and with the satisfaction that our community museum is able to make an impact on a life. Superficially, many people might see a young woman with disabilities, and feel compassion, or even fear or awkwardness. But looking a little deeper, her abilities, the intelligence behind observant eyes, and her sense of humor shine. Devin Semenak is 25 years old, but looks much younger. She has CHARGE syndrome. According to the Cleveland Clinic, CHARGE Syndrome is a rare genetic condition that affects several parts of the body, including eyes, nerves, heart, nasal passages, and ears. Children diagnosed with this condition have unique facial features. Each person with CHARGE syndrome has a unique set of features, no two alike.
Her parents, Michael and Judah, decided early on that they were never going to put a ceiling on her. They were going to make sure that Devin had opportunities like other kids. Her 17-year-old brother Dylan, who threw his parents for a loop because he was born healthy, loves his close family’s outings, and is proud when he speaks about Devin’s love of swimming, her adventurous nature: sit-ski snow and water skiing, horseback riding, ziplining. Love is at the root of everything they do. Devin is nonverbal, but communicates in many ways, such as sign language. Their affection for Clifford the Big Red Dog was in full evidence as they spent the afternoon playing and getting a special visit from this loving character. Devin snuggled.
Heffler, reflecting on the visit, said, “This is why I want to be at the MVM, for connections like this, and seeing what it means to people and getting to showcase the incredible work that our team does. It can be a stressful, busy, summer environment, but when you see someone like Devin interacting and connecting with the exhibit and the people, it really makes the tough days worthwhile.”
Visit mvmuseum.org for more information about upcoming exhibitions and events. The museum is open Tuesday through Sunday year-round. Summer-season hours: Tuesday, 10 am – 7 pm, Wednesday through Sunday, 10 am – 5 pm. Admission is free to members; admission for nonmembers is $18 for adults, $15 for seniors, $5 for children 7 to 17, and free for children 6 and under. Islander rates are available.
