When Fatherhood Meets MS

It bothers me.

I want to do more. Be part of more. See more. And I think, for any father, the “more” is what truly matters. It’s being there for them and, as a result, your children knowing that you are there for them… always.

I’m not your typical Dad. Instead of grilling, I bake. I’ve sarcastically dubbed my home repairs and other handyman exploits, “Good Enough Construction, Inc.” I don’t play golf and can’t tell you the “specs” of my car.

Oh, and I have MS.

I don’t fit into most commercial definitions of a Dad, but that’s ok because this much I know–I love being a Dad. So it’s frustrating when MS intersects with being a father. I don’t want to disappoint my children; I want to be there for them... always.

The good news is, I usually am. There are no late nights at the office or business trips to pack for. But the demanding career has been replaced with a demanding disease, festooned with numerous doctor’s appointments, medical treatments and a rollercoaster ride of symptoms that keep me on call.

As a result, I’m sometimes not actually all there.

In between sharing a story from my youth, making them laugh, teaching them about history, science or math, my hope is they are picking up on the other important lessons, courtesy of my MS.

Yes, my MS. 

When life deals you a setback, roll with the changes.
Just when I felt like I was reaching career milestones, my health faltered from MS.
I didn’t wake up the next day with a new plan. It took some time, tears and letting go of my past “dreams,” but eventually I found a new purpose by writing and podcasting about living with MS.

Don’t focus on the negatives.
Anyone can point out what’s wrong or how something might not work.  It’s important to be aware of potential roadblocks; but think bigger–be the person that focuses on a solution.
Living with MS is a 24/7/365 job that is filled with an abundance of “potholes.”  One day its your leg, the next moment its your vision, then vertigo kicks in…all while you are zapped of energy.  It’s easy for me to list off why I don’t feel well, but I’d rather figure out how to maneuver over, under and beyond the MS.

Eat healthy, but enjoy the good things in life, too
Feeling sluggish is a common part of living with MS. I try to avoid foods that will exacerbate that feeling.  But there’s nothing wrong with enjoying a homemade baked treat, too.

When something goes wrong, or you have a bad day, avoid taking it out on those closest to you; rather, rely on their strength and love.
I never want to snap at my children because of my MS. Even when I was working full-time, I didn’t want a bad day at the office to lead to a bad day at home.  MS is now my “job.”  And in my perfect world, the heavy burden of living with MS will never spill over onto them.

If the pain becomes unbearable, smile
Yes, smile. The best part is, it doesn’t cost you a thing.

Live life with passion
You never know what tomorrow might bring. Each day I wake up and I can feel the floor underneath me, is a good day. A very good day.

Be smart and have a plan…
Planning ahead, but also having the flexibility to adapt at a moment’s notice is pretty much a basic requirement of living with MS.

…but also include a side of spontaneity. Be free to go where the day takes you.
I refuse to be held hostage by this disease. They say to always have a “Plan B.” I reject that notion. The implication is Plan B is not as ideal as Plan A.

I go where my energy level, mobility and abilities of that day take me. And what I can do, where we end up–that’s always Plan A.

Even with these lessons, it still bothers me when I’m not able to do more. But I think any parent, whether they have MS or not, struggles with the guilt of not doing or providing enough for their children. Ultimately, I think we are too hard on ourselves and lose focus on what’s most important.
That latest electronic will be obsolete in a year, clothing fads never last and the new shiny toy they just had to have will eventually be forgotten. 

But the memories spent talking, laughing, sharing experiences and teaching our children by example will never fade.

It’s not about doing more or having more. Just be more.
Tags Healthy Living, Parenting      8 Appreciate this
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Michael

Michael Wentink, Blogger

In 2008, Michael Wentink was diagnosed with multiple sclerosis. At 31, he was a new father, a recent MBA graduate and a Director at a Fortune 500 company. MS altered this path and after an early retirement, Michael is now navigating life on a road less traveled. A native of Northern Virginia, Michael currently resides in San Antonio, Texas with his wife and two young children. Read about his journey with multiple sclerosis at mjwentink.com and follow him on Twitter.

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    16 Comments

  • linda   Jun 20, 2018 4:50 PM
    Michael, Hearts and high fives to you and your decisions re MS ! What a challenge to meet those goals every day and yet since their yours, no doubt you'll come close. I am one of the lucky ones whose diagnosis came at 68. I have my life experience and age to help me cope ! Seding you and your family wishes for more better times together than not and your continued commitment to your best state of wellness.
  • liz   Jun 21, 2018 10:13 AM
    Thanks for sharing. I will share this with my husband, who has MS too... He sounds and acts a lot like you. I'm going to direct him to your blog.
  • Jeff Austwick   Jun 21, 2018 11:57 AM
    Michael, thank you for sharing. I too struggle with MS and its impact on life/fatherhood. I always want to write about it but my fingers won't allow it. Reading your article here made me reconsider; there must be a way to share! I'll be reading more on your page. Thank you!
  • shannon aballi   Jun 21, 2018 2:37 PM
    thank you so much for sharing this
  • steven scavo   Jun 21, 2018 4:25 PM
    I consider myself very fortunate. I was diagnosed with MS at age 50, after my kids were grown. However, its been my experience that you will never stop being a Dad.
    Micheal, i love your attitude, you are wise beyond your years. Today, I'm a very proud grandfather of two absolutely beautiful girls that i try to do as much with as possible. Round two! All the best to you and your family
  • Amber Myers   Jun 21, 2018 5:47 PM
    I stumbled upon your post by an email from the National MS Society. I was diagnosed at 26 when my daughter was just 18 months old. I struggle all the time with the “more”. It is refreshing to hear I am not alone in that. I got goosebumps reading this. Thank you for sharing and I will be looking into reading more of your posts!
  • Stephanie Hurd   Jun 22, 2018 10:53 AM
    Thank you so much for sharing your story. It's inspiring to hear from others that have the daily struggles that I do. I was diagnosed 7 years ago at age 33 just before my twins turned a year old. I now have a 14 month old as well. My kids don't know me without MS, but I often think about how much more I could be to them if I didn't have it. I am fortunate to have a husband who is an awesome Dad and very involved in his children's lives. He's able to fill in the gaps of what I'm not able to do. I think as a parent, no matter what your circumstances, you always feel like you want to do more for your kids. I have to remind myself that if they are happy and healthy on a daily basis, then I must be doing something right! Be well Michael, thank you again :)
  • Andrew D Scofield   Jun 22, 2018 2:27 PM
    Thank you it is excellent
  • frank janitz   Jun 22, 2018 9:58 PM
    hello and thank you for sharing about what i beleive most of us parents living with MS think about. I was diagnosed about 9 months ago at age 41 after years of fighting what i thought were the aches and pains of getting older and working 70 hour weeks.. anyway I have a 9 year old son who is very active in soccer and bball. I find myself just as a dad reaction saying yes everytime he asks me to play and then paying the price later. I look at it as he will never forget these times and any pain is worth that to me. i could buy him any video game or dirt bike or whatever and those items will come and go, but like you said the stuff we do together are timeless memories.. thank you for reminding us all of that..
  • Gail Hughes   Jun 25, 2018 2:07 PM
    Michael, I want to tell you about MS from a child's perspective. I am now 81 years old. My mother experienced her first MS symptoms when she was 27, I was 2, and my brother was a new born infant. This was in 1938, the dark ages as far as medicine is concerned. (At first she was told to go home and get a hobby.) Mother had what we now know is primary progressive MS so there were no remissions, just a steady, downhill slide into paralysis. She told me it used to be called creeping paralysis but they changed it because the name was bad for patients morale

    Mother finally told me what was going on when I was 10 years old. I didn't know there was anything wrong, she just walked with a limp. As time went on she gradually lost the use of of her legs and then her arms, always on the left side first. We all adjusted and life went on pretty much as it had before but with more help.

    When I learned to drive, mother went into a wheel chair. I did the family errands and drove my brother and myself to school. Mother loved to have young people around so our friends were always welcome at our house. There were always home made chocolate chip cookies on hand, a great encouragement for kids to visit.

    Eventually I grew up and went to college. When I decided to get married I brought my fiance home to meet my parents. It was then that my boyfriend saw that my mother was in a wheel chair. He wanted to know what was wrong. I had forgotten to tell him! My mother was just like anybody else except that she was sitting down,

    You can draw your own conclusions from this story, Michael I'll just say that she thought it was wonderful.
  • esand924  Jun 26, 2018 10:34 AM
    I am so happy you posted this. Thank you. My husband has MS too and we recently became parents a year ago. The transition has been hard on him since he spends more time with our daughter (I commute much father to work and he has a bit more flexibility). I am going to show him this article.
  • Avatar
    Jim  Jul 2, 2018 8:10 PM
    That was a great post. I am also fortunate enough to be a dad to my two sons.
  • Chris Holm   Jul 3, 2018 12:45 PM
    I am a 35 year MS “survivor”. After years of trying to describe my world to others here it is in one story which mirrors my own life. Thank you for sharing!!
  • Alex   Jul 14, 2018 8:05 AM
    Great post and very inspirational. I am 46 and was diagnosed a year ago. With two young boys and a teenage girl it makes me nervous about how inwill continue to be there for them and for my wife. Thanks for the pep talk!
  • kfitzpat1  Jul 15, 2018 12:33 PM
    thanks to the dads I have a stressful life I am still trying to work your comments are awesome

    thank you
  • Avatar
    churchcat  Sep 5, 2018 10:02 PM
    I loved reading this, I am all about my kids/ grandchildren and although I have Ms I get tired of hearing all the negatives. You are a breath of fresh air!