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

Some changes with MS trouble me, even among the highs with my young sons

Benjamin Hofmeister avatar

by Benjamin Hofmeister |

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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?”

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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.

In the foreground of some open grass and a stand of pine trees, a seemingly fit man with short brown hair in a gray T-shirt, gray hat, and sunglasses is seen in profile, strapped on his shoulders into a blue back carry, where a baby in red leggings is sleeping.

Ben carries his firstborn almost a year before his MS diagnosis. (Photo by Michala Hofmeister)

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.

A picture of a page formatted with an "EXTRA! EXTRA! Read All About It!" title at the top, with spaces for two drawings (top right and bottom left) and several black lines left empty for writing. The handwritten text on those lines says, "By Sterling H. My Dad's the best dad around! He provides for our family by writing articles. He does so much more that I can't thank him enough. He answers my questions [illegible]. We watch movies like Indiana Jones together and have a great time. He's the best!" The top picture has a green field with a person at center and the label "Ben H." The person appears to be frowning, but it's actually a drooping mustache. The bottom picture has a brown sofa at foreground, with a large television screen at center and a small man in a wheelchair at right.

Sterling, Ben’s oldest son, made this Father’s Day tribute. (Text and artwork by Sterling Hofmeister)

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.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

kerry jones avatar

kerry jones

What a lovely article uplifting albeit with the dreaded MS interfering in our lives.I live in the UK ,working all my life as a mental health community nurse ,a job which was so rewarding and although retiring at 58 due to MS I take comfort in friendships ,empathy and a degree of understanding of differing illnesses of he central nervous system.I never thought i'd be battling with my own brain malfunction!.

I am blessed to have 7 young grandchildren but sometimes saddened and yes angry that i am not able to keep up with what I thought I would be doing.

But last weekend my sons three boys visited aged 8,6 and 2yrs and wanted nanny to take them onto the golf course( where we adjacent too),but my legs didn't want to play ball so i had to sit and watch however from the distance they were in the sand bunker(no golfers about) when the 6yr old shouted "its OK nan well bring some sand over to you so you can pretend your at the beach".

MS or no MS my heart melted and those precious memories stay embedded in my ms brain.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you Kerry! I was sort of hoping these emotions would be gone by the time I have grandchildren 😆. That really was a precious moment. Thank you for sharing it.

Ben

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Brian O’Neill avatar

Brian O’Neill

You are so, so right about the physical things that us ms’er male dad’s can’t do (even the simplest things). You are certainly are not alone! Keep up the good fight! That’s the best lesson of all for you to show your children!!

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Brian. Would it be wrong to say that you made me feel less guilty about wishing it could be better?

I know it could be so much worse and I know I've got it good, so there’s always been a twinge of guilt over wishing it was better (that I was better). Thank for letting me know I'm not the only one.

Ben

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Ginny avatar

Ginny

Boy...you touched my heart with this column! Brian O'Neill's comment is sooo correct..."Keeping up the good fight is the best lesson to show your children!" Your son's card says it all.....he loves you as you are...his amazing Dad. My Dad was ill from something entirely different and I can tell you there is no burden between a child and a parent...only love. Happy Father's Day Ben!

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you so much Ginny! (I think someone's cutting onions in here).

Ben

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Catherine Helm avatar

Catherine Helm

Oh Ben. Thank you for sharing your story. I am quite a bit older than you. I was diagnosed after my 2 boys were well into adulthood but I can clearly see the MS was active throughout their childhoods. You are an awesome Dad - Sterling told us! You are the father your children are intended to grow up with and be proud of. Take care of yourself. Happy Father's Day. #Team Hofmeister

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you Catherine. They’re really rising to meet every challenge and I hope they always do with anything that comes their way. (I know they will)

My life with MS is better because they’re (and my wife, family, friends) are in it.

Ben

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Diana Pullos avatar

Diana Pullos

I felt bad about my youngest daughter having to help me when her older sisters didn't. There's a 17year age gap between oldest and youngest. BUT then she, in year 7, did a presentation to the class on MS and proceeded to introduce me as "one i prepared earlier!" She was not embarassed by me but proud of me!!

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Hi Diana! I think our children aren't embarrassed by our condition because we aren't. I think they're proud of us because we're proud of them. I don’t know much, but I think we're doing something right

Ben

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Maureen avatar

Maureen

This reminds me of when I was 28, and my daughter was 3 1/2. My body started acting weird on me. I stopped working. When my little girl wanted me to carry her, I usually couldn't any more. I would often fall when I walked, and I didn't want to fall while carrying her. I went on Betaseron when it was a new drug. When I'd talk to someone on the phone, and the treatment came up in conversation, when they would ask me about side-effects, I'd mention that I'd get "big, ugly bruises at the injection sight>" It wasn't really a complaint, I knew that some of the people at my M.S. support group who were using Betaseron were getting MUCH WORSE side-effects. One day my daughter told me that my bruises were beautiful. They are SO SWEET when they're little. The memories of my angle baby helped me get throught her teen age years(which, ofcourse, were much tougher). Now my little girl is 34, I don't know how that happened o fast! I thank god for her, she would do ANYTHING that she possibly could for me. I know that she loves me, and I'm so glad that she knows that I love her. Children are such a blessing!! Challenging at times, but very preecious.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you Maureen.

Wait.. are you telling me that the teenage years aren't all wine and roses? 😳

Children are a blessing, you're so right.

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