Ben Hofmeister shares his journey of parenting with primary progressive multiple sclerosis (MS), from navigating daily challenges and the weight of early symptoms to embracing humor as a way to connect with his children. He reflects on the lessons learned from accepting help and the strength that comes from allowing his family to show him grace in meaningful ways. Read his column, Chairborne.
Transcript
Being a parent with MS has a ton of light moments. There are times if I’ve had a particularly hard day, I am having trouble lifting food to my mouth.
My youngest, instinctively, he knows because he remembers a little bit of me feeding him as a child. He will pick up the fork and, “Oh, here comes the airplane.”
Four or five years ago, I would have almost been offended. And now it’s just, it is what it is.
The other moment that comes to mind, no one is really sure what the triggers are for MS. One possibility is head injuries, concussions specifically. Well, I know that I check just about every box, and I checked that one. I’ve had four concussions.
All my kids play some sort of sports. A couple of times, they’ve had to fill out and sign concussion waivers. A couple of years ago, probably my middle child was filling out a concussion waiver, and I insisted that he read it himself. But at one point, he had to look at me and was like, “What’s a concussion?”
So, you know, of course I can explain the book answer, but then, kind of half-jokingly, I said, “You know, don’t worry about it. I’ve had four. There’s nothing wrong with me.” My child, like, looks at me for a second, almost like he’s deciding, is this appropriate to say? And so is like, “But Dad, there is something wrong with you.”
It’s like “Yes, yes there is. But it’s a very low chance that it’s from a concussion.”
The first year or two after diagnosis, I wasn’t really ready to be lighthearted about this. I’m more comfortable in my own skin. These are things that other parents with kids would joke about.
I sometimes worry I’m not the guy that can get down on the floor and wrestle with my children. I can’t hold a football or throw a baseball or any of those sort of things. But the humor that is rampant in my family is important to me, and that’s something I can share. And I’m glad that they see that it’s OK to find the humor in things.
I’ve often joked that my wife and I laugh about some of the absurdity of life with a chronic disease. And I would say things like, “Well, you know, if we couldn’t laugh at this sometimes, I don’t know what we’d do.” But initially, I kind of excluded the children that. Well, “You don’t laugh at it.” But it’s OK. And it’s important to show them that it’s OK.
If I were to tell another parent that had MS anything, it would be, take being a parent seriously. But you don’t always have to take being a parent with MS seriously. It seems very wrong to say don’t take your role as a parent that seriously. Because when you do, you tend to try to project on yourself being a parent like you were before MS.
My kids’ friends, you know, they have a dad that can do this, but I can’t do that. And it will frustrate me and them if I try to do that. So when I say, don’t take it that seriously, that’s what I mean. Don’t take it so seriously that you are trying to compare yourself to other parents that are not in the same situation.
I am so proud of my children for holding doors for me, helping me find ramps up onto the sidewalk. It wasn’t that long ago I would have almost been inclined to discourage it. I don’t want this for you. They want to help. Nobody’s forcing them to. And I’m letting them.
And if you’re a parent with multiple sclerosis, learn to accept grace from your kids. It is as much a reward for them as it is for you.
