October is spina bifida awareness month, and one Goshen family knows firsthand the challenges and the unique opportunities that come with having a child born with this rare birth defect.
Eight years ago, Dory Mast found herself in her doctor’s office for her 20 week visit, when the ultrasound revealed that her son, Dustin Mast would be born with spina bifida, which is a condition where the spinal cord doesn’t close completely. This can affect individuals in many ways, including inability to walk and other orthopedic issues, difficulties with organs and digestion.
Mast said that when she learned that her son would have this condition, she was filled with one thing: the unknown.
“After we were told that he had spina bifida, I connected with others who had children with it, and they would often tell me that we were in the hardest stage,” Mast said. “It really was because we really didn’t know what was going to happen. There were a lot of unknowns. The prenatal time was the most difficult.”
One of the things that Mast said made those unknowns so challenging was due to the fact that their family is very physically active, and loves doing things outdoors.
“We’re a very outdoor family,” she said. “My husband hunts, and I like to go hunting with him. We also hike and just get out a lot. When Dustin was little, we would just carry him around with us, but as he has gotten older, things have gotten a little more challenging.”
Mast said that things were actually a little simpler when Dustin was little because he would crawl around on the floor like other babies, but now that he is seven years old, he is more confined to a wheelchair and forearm crutches. She said that as he has grown, they have all found ways to adapt so that he can experience life to the fullest.
“Dustin is a typical boy—I feel like he’s all boy,” Mast said. “Cognitively, he’s a normal 7-year-old, which in some ways, is wonderful, but it’s also challenging because he wants to do things that are a little harder for him. I wouldn’t say that spina bifida is necessarily limiting, but just different. You have to be more creative.”
The Masts, who have three other children, have taken Dustin biking, skiing and horseback riding with Adaptive Sports. They also have him in a basketball league at the Adaptive Arena in Bluffdale, which Mast said he loves.
Mast also homeschools Dustin and her three other kids, and said that her goal is to prepare him for the real world in ways that she believes will help strengthen him as he grows.
“His disability played into my decision to homeschool, but I always wanted to homeschool,” Mast said. “When I had Dustin, I felt like it would be a little easier with physical therapy and doctor appointments. We have to be careful with his kidneys because he can get UTI’s (urinary tract infections).”
Mast also said that homeschooling (that also includes a homeschool co-op), along with involvement in their nondenominational church community, has provided Dustin with support as he develops the sense of self and confidence. She said that as she reflects on her desires for her son, particularly during spina bifida awareness month, that there is one thing that she hopes the community knows.
“I want people to know that even though he has spina bifida, that his disability doesn’t define him,” Mast said. “People will often say to him,“You’re so awesome,’ or ‘You’re so strong.’ This is fine, and I know it comes from a good place, but you’re just acknowledging that he’s different. It would be better if people came over and said ‘Hi’ and just treated him like everyone else. That’s one thing that I’ve noticed as a parent of a child in a wheelchair with spina bifida.”
One of Dustin and his siblings’ favorite pastimes is collecting eggs from their backyard chickens and selling them to members in his Goshen community.
