I always thought I’d be a fun mom; the mom who plans class parties, explores interactive exhibits with her kids at museums, and survives the Tilt-A-Whirl with them at carnivals. When I was young, I imagined myself beside my future children on roller coasters and chaperoning every class trip from kindergarten through 5th grade. My mom went on mine, and I wanted my children to have the same experience.
But my boys are 14 and 11, and I’ve never been the mom I envisioned. As my youngest finishes his final year of elementary school, sadly, I have never joined either of them on a class trip. The vision of the mother I thought I’d be never got a chance to exist.
My multiple sclerosis diagnosis changed everything
When I was 21, multiple sclerosis seized my nervous system. Before I could even speculate on the ways in which this disease would change the course of my life, it stole the mother I hoped to become.
From the time my older son began walking, I realized the expectations I had for myself were no longer realistic. I could go to museums or amusement parks with my family, but only with my husband present to take over when I had to rest. I wasn’t the one beside them as they walked the streets of the Historic District in Philadelphia with their class. I can’t withstand the school’s packed schedule while also being responsible for a group of children with endless energy.
“Can you go?” I asked my husband when we learned of my older son’s first field trip in kindergarten. “I want him to have one of us there,” I pleaded. Between wanting to raise my children myself and the relentless weakness, fatigue, and pain slowing me down, I chose to stop working my full-time job when my older son was born.
My husband has worked overtime for the last 15 years to support our lives, and asking him to take time off for a field trip felt unfair. But if I couldn’t go, having him present would make my misfortune sting a little less. Perhaps field trips could be their thing? “Please, for me, can you be there with him?”
My husband has done many things with my kids that I had pictured for myself
My husband went on that field trip — and he’s gone on every trip since then with both of our children throughout their elementary years. Every moment I’d imagined — from watching them walk through the Heart exhibit at the Franklin Institute in Philadelphia, to strolling around the National Constitution Center, to a 5th-grade “skip day” at Hershey Park, to riding roller coasters at Dorney Park to celebrate the end of elementary school — has happened. But it’s been him and not me. I see these occasions through pictures and brief, animated FaceTime calls instead of living them myself.
There’s so much I can do that I once thought would be impossible, so remaining bitter about missing out feels petty. It took me 13 years to be diagnosed, and during that time, my body weakened until walking was no longer possible.
I never thought I’d be able to bike on rail trails with my children or take a mile-long flat hike through the Catskill Mountains with them. I wasn’t sure I’d ever attend a class party or be able to stand while talking to friends as my kids enjoyed the end-of-year carnival at school. I used to worry about middle and high school Back-to-School Nights and how I’d walk through their daily schedule while my legs threatened to collapse. I once thought I’d miss everything.
Since being diagnosed in 2017, treatment has allowed me to do all of this. So, I’ve accepted that school trips haven’t been on my agenda because so many other activities have been. Knowing that my husband has been there in my place has helped me let go of that loss.
On Father’s Day, I want to thank my husband for being the fun parent, the one who takes them hiking up mountains and climbing over rocks. The one who scrambles through the Heart and Brain exhibits at the science museum. The one who endures roller coasters beside them even though his vestibular system has aged. He’s the one who keeps the fun going when I’m sitting on a bench in the background or many miles away at home.
He’s been everything I can’t be, mending my dream of motherhood back into reality.
