Lisa Littleton, who is the mother of two sons with Duchenne muscular dystrophy, one passed and one living, is a full-time caregiver. She describes the difficult balance between pushing for care and respecting her sons’ choices.

That really, we’re just doing it to help you. Like, we really aren’t trying to be annoying. It’s because we love you, and we’d like to spend longer time with you. Basically, that’s really where we were coming from, is “We love you, and we’d like you to be here with us as long as possible.”

And then there’s also the piece of, you know, the person needs to do what they feel most comfortable with. So I was trying to also honor that because quality of life was probably our biggest thing that we were most concerned about and tried to make mental health and exercises all go in with that.

But it was hard sometimes to see that he really didn’t want to do a lot of things that would help him. And there were some arguments about that.

But the other part that’s hard about this condition is, for example, they tell you you need to be standing and stretching and doing all these things in the stander. Yeah, that’s great. But while we were doing that, the fine line on when to stop is horrible. And the only reason we found out we shouldn’t be doing it is because we broke a hip doing it. So it’s so hard because, as a parent, you want them to do all the things, but you don’t know when you’re supposed to stop with the stander.

Like, it’s hard. Like, they can’t necessarily tell you. So sometimes you find out things the hard way, and that’s really annoying. So I don’t know how to say that any better. Just that you want to do things that help, but then you don’t want them to turn into things that hurt.

I don’t know if I’m explaining that very well, but that was our experience, and it was really not great because we felt bad as parents. We’re doing what they’ve told us to do, and then this happens, and you feel like, “Well, crap.”

Jim feels — my husband — a lot of guilt about that. And it’s like, we are doing what we’ve been told to do as best we can. And, you know, stuff’s gonna happen. So that does make it a little hard.