It’s not what I expected, being a parent with a disability

Einstein said that time is relative, and as I age (gracefully, I hope), I’ve found that to be true. For example, I frequently find myself referring to events that occurred a decade or more in the past as happening “just the other day.” In my mind, I’m still 28 or so, and everything that’s happened between then and now was about a month ago.

Fortunately for both me and my sense of relativity, my middle child just turned 9. With that as a frame of reference, I’m fairly confident that this event actually did take place “just the other day.”

The topic was facial hair — specifically, when his would put in an appearance. I still had my unruly winter beard and pointed to it as I told him that mine didn’t show up in force until my late teens or early 20s. My wife, not wanting to launch into a full-scale discussion of maternal versus paternal inheritance, simply said, “You’ll probably end up just like Daddy.”

He seemed satisfied with the answer, albeit a little disappointed that he had no chance of being the only third grader with a beard. Then a look of concern crossed his face. “Wait! Do you mean I won’t be able to walk?”

I think about that, too. Probably more than I should. But then I imagine every parent with multiple sclerosis (MS) does. I know that I haven’t increased their chances of having this disease by a large percentage, but their chances are a little greater. Some of that is probably purely genetic, even though I have no family history of MS. Some of it will be determined by triggering events. If I knew for sure what mine were, I’d do my best to make sure my children never encounter any of them.

Only one of our three sons was born before my diagnosis, so none of them has really known me without MS. I was able to walk and carry each of them before progressing to a wheelchair full time, when our youngest was 4. Unfortunately, this timing means that as my ability decreased, their responsibility increased.

I’m so proud that my children find and point out handicapped parking spaces and sidewalk ramps. I positively beam when a stranger at a restaurant compliments them for opening doors for me. At home, I’m grateful for the extra effort they take to help meet my every need. I’m so blessed that they take on what responsibility they can — but I wish they didn’t have to.

I don’t want to be a responsibility. I know they’re entirely different things, but sometimes, in my darkest moments, I equate it with being a burden. Irrational? I know it is, but MS can be an irrational disease, and I wish I didn’t have to share it. I’m the one with MS, but it affects my whole family. I hope it’s never for the worse.

Father’s Day is Sunday here in the United States. I hope I’m a good father in spite of multiple sclerosis. I’m retired and home all the time, but I’m not like the father I thought I’d be. I can’t run, tussle on the floor, throw a ball, or do any of the physical things that I often feel my boys deserve from me. It feels a little selfish to say it, but I think I deserve those things, too.

I’ll leave you this week with a Father’s Day project that my oldest did before the school year ended. Apparently, I’m doing OK.

I should clarify a couple things. I don’t actually support the family with my columns, as Sterling writes, and I’m not frowning in his top drawing, just sporting a long, drooping mustache. The bottom picture features us watching a movie, with him on the couch, which he’s depicted from behind.

I’ll probably never get used to seeing myself drawn in a wheelchair.

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