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What Michael J. Fox Taught Me About Parenting With Chronic Illness

I am married to a “Back to the Future” movie fan. We have a gigantic movie poster in our basement with Marty McFly, time machines in various corners of the house, pictures of us in front of replicas of time machines and yes, we have even been to the location of the “Back to the Future” house in LA and the Twin Pines Mall. Super exciting stuff.

I actually became a fan of Michael J. Fox when I watched the movie “The Secret of My Success” a million times when I was a kid. I know it sounds like a super random movie to grow up watching, but I was always rooting for the underdog, I guess. So yeah, he has been a part of my life for a while now, and it also doesn’t hurt that he is a fellow Canadian. So, you may be asking, how in the world did Michael J. Fox, the one and only, manage to put my mom guilt into any sort of perspective for me, let alone create an Oprah moment in my brain? It all came down to two quotes.

I picked up his newest book, “No Time Like the Future,” because I’d read that in the book, he started to question his never-ending optimism. For years, he has been a huge role model for many in his battle against Parkinson’s disease, raising money and awareness to help those living with the disease. His ability to seemingly remain unfailingly positive always made me shake my head in wonder. Who was this man, and how was he able to do this?

I picked up his book on the day my own health struggles started to get worse, and I could feel my own optimistic foundation starting to crumble. I guess I needed to hear some encouraging words that what I was feeling was a normal course of progression, as I filtered through this life with my illness. Now, I don’t live with Parkinson’s disease, but I can tell you that the way he described his daily feelings, pains, carefully planned medication dosing to prevent attacks, and even the way he had to skillfully plan every move he made with his body sounded a lot like my daily battle with POTS. I picked up his book because I wanted to gain more of an understanding into how time will affect my own health physically and mentally. Instead, I walked away with wisdom that is helping cure my mom guilt. Something I wasn’t anticipating.

Since having kids, I have struggled with feeling that I can’t keep up with them, and that I won’t be able to do things they ask of me. POTS doesn’t allow me to run with them or tackle the steepest toboggan hills with them. I manage many activities better while sitting, which is not an easy thing to ask of 3 and 5-year-olds with Tasmanian level energy. My mind doesn’t want to sit, though.

Before my illness, my whole life was sports-oriented. I was an athlete, and still am an athlete mentally, just not physically anymore. In my mind, I just want to go for long bike rides with them, take them to see the many waterfalls on the hiking trails close to where we live, play tag, and chase them around the house and hear them squeal with delight. I want to take lots of vacations requiring stamina. I want to be who I was before they were born. But I can’t.

As a result, I fear them thinking I am lazy or not interested. Often, I end up overcompensating and staying too long on my feet, or standing outside longer than I should in the cold. I end up paying for it afterward. What my mind wants to do and what my body can do haven’t caught up with each other. I am having a hard time accepting what I have, and it has been over 10 years. There is no cure. It isn’t going away.

I didn’t ask for this condition, and I was angry. I didn’t know how to fix it, and then I saw it. The first quote from Michael J. Fox. It simply said:

“The truth is, I don’t want to live like this, but I have found a way to accept the fact that I do.” — Michael J. Fox, “No Time Like the Future

I hovered on this line in the book. It was so simple. I didn’t want to live like this. Michael didn’t want to live like that. But he had found a way to accept the fact that this was his life. So, I had to find a way to accept that this was part of my life now, like it or not. That was the struggle, though, because I didn’t know how to accept it with kids.

The guilt I felt at them having a mom who had a chronic illness was overwhelming on days. I worried about everything I couldn’t do for them, or with them. I worried about them having to care for me one day, or the stress I would put on them if they had to worry about me. Every time I could only walk a short distance, or needed to lay down, or I couldn’t play with them on the jungle gym, I worried about what they would think of me as a mom. I was fearing the look of disappointment on their faces that I one day imagined would happen. Hearing them whisper to their friend that their mom isn’t able to do stuff and how much it really sucks, while thinking I was out of earshot. This is what I feared. But, then I saw the quote that changed me:

“The mistake I make at times is to assume that my kids are looking at what I can’t do, and not at what I can do. They see through the disease, and they see their dad.” — Michael J. Fox, “No Time Like the Future

I had been making all these assumptions before they ever materialized. I wasn’t giving my kids credit that they would see me for all that I am able to do, and all that I will always do for them. Even though I can’t climb those toboggan hills, I am always at the bottom waiting for them to come down and see their smiles. Even if I can’t chase them around the park, I am on the bench beside the slides watching them learn and grow. Even though I can’t stand and bake 400 homemade muffins before the bake sale, I will make sure every time that those kids don’t walk in empty-handed. Even if I have to lie down and teach them math or piano lessons, I am still right there beside them. Sitting, standing, lying down. Who cares. It’s being there that counts. I am there.

Maybe they will have to do the big hiking trails with their dad while I wait in the car. But I always will be there, and I have to give my kids enough credit that they will see through my illness and see what I can do, and that I am their mom. That is all that matters. Thank you, Mr. Fox, for inspiring someone you don’t know.

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