On a mission for Maggie
After daughter’s death, couple commits to tackling her bucket list, one trip at a time
My husband and I were taking a break during a bike ride along the Columbia River Gorge in Oregon in July. As we posed for one of many scenic selfies — as you do — a fit woman in Spandex with an ample smile offered to take the photo. We graciously said yes and, after a few clicks, fell into a conversation with her and her husband that would fill the next hour and stick with me for months to come.
Donna DeSousa-Schmidt and Steve Schmidt, we learned, were just past the half-way point of an epic road trip. They’d left their home in Long Island, New York, about two weeks earlier and, for the most part, were flying by the seat of their Spandex and seeing where the open road took them. It was, they told us, a bucket-list item they were checking off.
But it wasn’t their bucket list. It was the bucket list of their daughter, Maggie, who died at age 17 in 2017 after a brief bout with a rare and aggressive pediatric cancer, called malignant rhabdoid tumors. She’d left behind not one but two bucket lists, written out neatly on paper. Both reflect her thirst for excitement and her dreams of adventure. The lists had been made, Donna and Steve think, before she knew she was sick. “Go legit rock climbing,” “Visit pyramids,” “Hike the Grand Canyon again” and, the current quest: “Travel across the country in car.”
Donna and Steve found the lists after she died. Because Maggie couldn’t do the things she dreamed of doing, Donna and Steve decided to do them for her.
“She was so beautiful and so cool and just wanted to explore,” says Donna.
This trip was a memorial, a pilgrimage, a chance to tell Maggie’s story to old friends and new. It was a way to seize the day and live life to its fullest. The Schmidts knew, all too well, there was no guarantee of tomorrow.
That day, standing at the Rowena Crest Viewpoint and looking down on the serpentine river, Steve handed me a plastic green bracelet that says “Don’t forget Maggie Schmidt — Find a Cure.” After Maggie died, the Schmidts started a nonprofit, called Maggie’s Mission, to raise money for pediatric cancer research. To date, they’ve raised more than $700,000.
I put the bracelet on my wrist, and it instantly became a reminder of how fragile the day-to-day really is.
Curious to learn more about their trip, I asked the Schmidts if they’d speak with me when they got home, and they agreed. After 6,693 miles, they shared their story about the connective power of travel, and how it can be a balm not just in good times, but also in times of grief.
Hitting the open road
In some ways, the trip was an escape. July 4 was approaching, and in the past, Donna, Steve, Maggie and her brother, Steven, always visited the Jersey Shore for the holiday. But the thought of just the three of them going was too painful.
“Everything’s changed for us,” says Donna.
Maggie had been a huge fan of the Red Hot Chili Peppers. After she became sick, she got to meet them backstage, and the whole family became friends with the guitarist, Josh Klinghoffer. Some of the band members were playing at the Peak to Sky music festival in Big Sky, Montana, July 6, and that became the inspiration the Schmidts needed to start checking off the bucket list.
“We felt like this was an opportunity to do something that she would never get the chance to do, and do it in honor of her,” Donna says.
Steve, an elementary school teacher, and Donna, a graphic designer, set out from their home in Greenlawn on June 30, their car covered in a colorful “Maggie’s Mission” wrap. They decided to wing it — no reservations, no obligations, no plans aside from the concert.
A friend in Wisconsin invited them to stay at her home near Marshfield. They made the long, 1,100 mile drive that first day. It was the start of a series of serendipitous discoveries when they learned that they were near a landmark Maggie would have loved: Pepin, Wisconsin, about 120 miles west of Marshfield, is the birthplace of Laura Ingalls Wilder. The Laura Ingalls Wilder Museum brought back sweet memories of Maggie, who, as a child, would dress up like Laura.
At the gift shop, Donna bought a bonnet and frock. That outfit was perfectly suited for the next day’s adventure, when, in Philip, South Dakota, they visited Prairie Homestead, a sod house that dates back to 1909, where visitors are invited to don historic dress and pose for photos. Steve borrowed a pair of overalls and Donna modeled her “Little House on the Prairie”-inspired fashion, and they took beautiful, if campy, photos around the farm.
“We were just being silly,” says Steve. “That’s huge, right, to be silly in grieving?” adds Donna. “Because it’s hard to laugh. Any time we get the chance to be silly now, we do it.”
Thunderstorms rolled into the area, so they didn’t get a chance to spend any time at the Badlands or Mount Rushmore, as they’d hoped. Instead, they soldiered on to Montana.
In Bozeman, Montana, accommodations were pricey, so they tried Airbnb. That, too, turned out to be a fortunate encounter. They rented an RV and and started chatting with the owner. After opening up to him about Maggie and the inspiration for the trip, they became fast friends with the owner. He took them mountain biking and treated them to dinner in downtown Bozeman.
There, the street was closed off to traffic because of a music festival, and hula hoops were all around. Donna and
Steve picked up the hula hoops and swirled their hips. They remembered Maggie would always compete in hula-hoop contests at block parties back home.
“She would always win,” remembers Donna.
They watched an incredible sunset from a trail near the RV, finding peace and solace in the glowing sky.
When they rolled into Big Sky for the concert, they had a chance to catch up with Klinghoffer. Since Maggie died, Donna and Steve have become regulars at Red Hot Chili Peppers shows, and the band has come to be a symbol of kindness and connection during dark times.
“It was awesome,” says Donna. “The evening was magical.”
Finding connections
More fortunate encounters paved their way West. Donna loves hummingbirds and remembers saying, early in the trip, “Maggie, if you're with us on this trip, send a hummingbird.” In Snoqualmie, Washington, the yard at their Airbnb was filled with hummingbird feeders and hundreds of hummingbirds.
“I said, ‘Thank you, Maggie,'” says Donna.
The Airbnb owner told them about a town nearby named Roslyn, where the series “Northern Exposure” was filmed. Donna and Steve knew the show well: .
It'd been years since they thought about it, but Maggie was named after a “Northern Exposure” character who was a bush pilot. About a half hour later, they were taking a selfie in front of a restaurant in Roslyn called Maggie's Pantry.
“That was probably the biggest connection to Maggie — what were the chances that we found ourselves there?” asks Donna.
While other moments along the way stand out, many are a blur, as happens on a road trip. The couple made it to the Pacific Ocean — their goal — checking the box for a true cross-country trip. They biked along the Columbia Gorge, where I met them. They stayed with friends in Salt Lake City, and rented a room from a nice family via Airbnb in Frankfort, Illinois, making new friends. Occasionally, there was annoying traffic. Always, there was the inescapable grief.
But there was also laughter and joy. Reflecting on those 17 days on the road, both Steve and Donna say it was the people they spoke with along the way that meant so much.
“Connections bring us back to Maggie. While she's no longer physically here, we're honoring her in this way so we can keep sharing our stories,” says Donna. “It's a beautiful thing to share a story about her. It helps keep us grounded.”
“See the Northern Lights” is on the list, so they think they'll head to Alaska this winter — sooner than later.
Looking back, Steve recalls how Maggie always used to say YOLO (you only live once).
He and Donna have embraced that ethos. It keeps them moving forward, even in times when moving forward is difficult.
“The message that comes through after everything that's happened is life is short,” says Donna. “Hers was shorter than normal, but all of our lives are short, so you might as well get out and do it now.”