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.