I’VE ALWAYS been proud to be the product of public school. After all, public and state schools are part of the backbone of our country. My kid would follow in my footsteps, I had decided. And by footsteps, I mean tire tracks, because I have ALS and use a wheelchair.
If you aren’t familiar with ALS, it’s quite the shit sandwich. Not only did it put a damper on my golf game; it has a life expectancy of three to five years. Fortunately, I have been an outlier, and I’m almost in my tenth year living with the “fatal” disease—2020 was a doozy.
In September 2020 alone, amidst Covid, my wife and I bought our first house. We decided to move to a new house in a new city, an hour away from any friends and family. My wife started her own business, and because of the pandemic, I had to pull the plug on the foundation I created to raise awareness about ALS—which is a pretty bad pun considering I need a ventilator to breathe. Oh, and I also became a stay-at-home dad for a few months until we could find a preschool for my three-year-old daughter, Elliott Monroe.
Despite being completely paralyzed, with the exception of the little piggy that went to market on my left foot, I tried especially hard during those months to be as active and present in Elliott’s life as possible. Instead of me making her breakfast every morning, she crawled into bed with me with some orange juice and a little box of raisins. There we’d watch an episode of Paw Patrol on my tablet before my caregiver would start moving my legs to get the blood flowing.
Then the rest of our day we spent at parks and playgrounds. This time became increasingly special with every box of mac ’n’ cheese we shared at lunch. It was idyllic—but her going to school loomed.
Like any responsible parent in a new town, I had Googled “best preschools near me.” One result had caught my eye.The only problem was that it was a private school. And this private school represent-ed everything I was against. Did I want to be a private-school parent? It would be a stretch on our finances. Would our daughter be not only the poor kid among the wealthy but also the poor kid with the dad in a wheelchair?
My mind raced through decades of insecurities, ranging from not having enough money to never being quite smart enough for honors classes. Sure, the private school offered a great education, but could I deal with picking her up in my wheelchair-accessible van among the parade of Porsches? I was a nervous wreck. What was I thinking?
So I emailed the private school’s admissions director and spilled my guts.Unfortunately for my ego and fortunately for our daughter’s future, the director was lovely. My wife, who grew up in rural Ohio, was supportive. And so we scheduled a tour.
I was relieved to find out that the students were, in fact, diverse in background and class. We enrolled her, despite what-ever commitment I had made about where and with whom she’d go to school.
I expected inner turmoil; instead I found relief. For all my own issues about joining a community that I had judged from the outside, it was a personal victory. Our job as parents is to put our kids in the best situation and surroundings to succeed—all the while not letting our own baggage get in the way.
As for my fears about Elliott having to deal with a dad with disabilities, she quickly squashed those. During the first week of school, she decided to ride through the preschool’s quad on my lap. The other kids were so impressed by my hot wheels that Elliott was waving likes he was already on a homecoming float.
Considering that we just managed to get Elliott potty-trained in time for preschool, homecoming seems like eons from now.
And despite this annoying“fatal” disease, I will be there.
A version of this article originally appeared in the October 2021 issue of Men’s Health.
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