Betty Vertin, who lives in Hastings, Nebraska, has three sons with Duchenne muscular dystrophy, the first diagnosed in 2010 at age 4 and the other boys within the following year. She shares how open communication and partnership help her navigate tough moments in Duchenne care.
Transcript
I would recommend open communication as the first thing so that both sides understand what the goal is, what you’re working toward, and why it’s important.
But then also, if you have that shared foundation, you can talk about, “I’m not comfortable doing this,” or, “I’m not happy that you’re not doing this.” It just opens up a line of communication that I think is really important.
When there’s two people working toward one goal — but people are so different. I mean, they are my own children, but our personalities are completely different. We don’t react to things the exact same way.
So we need to know where each other’s coming from to best support each other as we navigate this. I mean, Duchenne is a crazy journey, and we’re navigating it. We’ve never done it before. We don’t know anybody in our family that’s done it before.
And we’re doing it times three. So we’re figuring it out together. And we really are partners in that sense. And also, I’ve never had muscular dystrophy. I don’t know what that feels like. They’ve never not had it. They’ve never had to care for somebody.
So our perspectives are just so different. So I just keep coming back to communication. But I think you have to share all of that in order to work well together.
