NEW ORLEANS — Michel Gleason’s shoulders may appear small. In reality, they’re very, very broad.
Broad enough to be the primary caregiver for her husband, former Saints safety Steve Gleason, as amyotrophic lateral sclerosis continues to take away his body’s muscular functions.
Broad enough to be highly engaged in Team Gleason, the ALS awareness and support program the Gleasons founded after Steve was diagnosed in 2011 that has gone global in its reach.
And, most importantly, broad enough to be the full-time mother of Rivers Varisco Gleason, born a month after Steve, whose blocked punt in the Saints’ first post-Katrina home game has been memorialized with a statue outside the Mercedes-Benz Superdome, went public with his condition.
“Rivers just didn’t fall in our laps,” said Michel, who conceived via in vitro fertilization. “Honestly, though, it’s much more physically challenging than I thought it would be. It’s obviously mentally and emotionally challenging, too. But I can’t imagine what it would be like if we didn’t have Rivers in our life.”
After receiving a Mother’s Day gift of some new black-and-white photographs to add to the collection already on the living-room wall, Michel will celebrate by going out for brunch with her parents, Paul and Jill Varisco, plus her brothers, Paul Jr. and Vinnie, and their families. They’ll all be with Rivers, now 18 months.
Steve will be there, too, even though for him to leave their Lake Vista home takes scouting of the location for wheelchair accessibility and the like, not to mention upwards of an hour to get him dressed.
Michel will feed Steve, probably though a tube, as his chewing ability has been reduced to taking a few small bites of solid food.
Michel can handle that duty. Increasingly, though, Steve’s condition has made him more than her 5-foot-3, 105-pound frame can manage, even though she proudly displays the biceps she says came from carrying Rivers around.
“Sometimes I am in disbelief,” Steve said of his wife’s nonstop pace. “It’s amazing because we have stayed very active with everything we do with the foundation. So it’s not just taking care of Rivers and me. It’s packing for three to go to Peru for 10 days. Or packing for me to go to New York for a speaking engagement. Or moving our family to the Northwest for the summer.
“I get nervous that she is doing too much. I ask her regularly if she thinks we should step away, but so far she has said she would rather be too busy than sitting around dwelling on our situation. Undoubtedly, I would be lost without the love Michel has for me.”
But there are changes ahead. Perhaps the tipping point came when Michel was helping Steve get into the bathtub and Rivers climbed into his father’s wheelchair, somehow activated the controls and rammed into the wall.
“He’s active, just like his dad,” Michel said. “And he’s a ham, just like me. We have a few minutes of total chaos around here sometimes.”
To do what Michel no longer can, Blair Casey, a physical therapist, recently joined Team Gleason. A neighbor comes over each night to get Steve ready for bed.
“I was hurting myself physically trying to do too much,” Michel said. “Luckily, we have the resources and the good friends for help.”
Still, Steve, Michel and Rivers have their alone time — like after Michel has fed and bathed Rivers and puts him in his father’s lap as together the pair watches music videos specially selected by Steve.
“It’s the cutest thing you can imagine,” Michel said. “Steve and Rivers cuddle up and snuggle. He’ll get as close to his dad as he can. And Rivers is developing a great love of music, which is pretty cool, too.”
Steve cherishes those times.
“Every day we have moments when we look at each other and say, ‘We are so blessed to have Rivers with us,’ ” he said. “A couple weeks ago, we bought him a soccer goal. Michel taught him how to score and also how to celebrate after a goal. Our film guys have this incredible shot of Rivers shooting a goal and Rivers and Michel running around like they just won the World Cup. It is an awesome moment.”
Rivers gets to do a lot of cool things. Recently, he was part of the 18-person Team Gleason entourage that made a weeklong trip to Peru to visit Incan ruins — a continuation of Steve’s and Michel’s love of exotic vacations.
They’ll also make their annual summer trek to Spokane, Wash., and its environs where Steve grew up.
Earlier this year, on a trip to Steve’s favorite ski hangout in Idaho, a park ranger tobogganed down a mountain with Steve and Rivers in tow.
But to Michel, the coolest thing is when Steve is out of his wheelchair, perhaps lying on the ground, and Rivers is with him.
“I think he sees Steve in a whole new light,” she said. “He’s there on the ground, and Rivers touches him differently and looks at him differently.”
Although Rivers came along after Steve’s condition was determined, as Michel said, he was no accident.
The Gleasons, who met in 2005 and married in 2008, had been trying to conceive for some time before deciding that in vitro fertilization was their only option.
Steve helped deliver Rivers but after that was only able to change a couple of diapers. Michel quipped at the time that she had “two butts to clean.”
Not that she complained — or let herself stay down for long, bemoaning the tough hand she and the love of her life had been dealt.
“I think it’s very similar to those with multiple children but no husband around,” she said. “One is challenging enough, but I have to multi-task quite a bit.”
And sometimes it can get rough. Steve presents a resolute face to the public, but there are small struggles, such as when the computer with which he communicates develops technical problems. All the while, Rivers is demanding attention, too.
“That’s when I need an extra set of hands,” Michel said. “But with Steve, it’s positive 95 percent of the time. And when Steve does get down in a dark place, nobody can bring him out of it like Rivers.”
Michel doesn’t have to tend to Rivers — or Steve — 24/7. Three days a week, Rivers is with babysitters as Michel concentrates on Team Gleason business. Recent actions included obtaining a car for one ALS sufferer and a home elevator for another.
Although ALS usually doesn’t strike until after age 40 (Steve was 34 in 2011), the Gleasons have heard from patients as young as 9. They’re in contact with two other couples who, like the Gleasons, have had babies after the father (ALS primarily afflicts males) was diagnosed.
Team Gleason also has been getting more involved in funding research toward the goal of a cure.
“I was never going to be a stay-at-home mom,” said Michel, who was involved in her family’s restaurant business until Steve’s condition was discovered. “Helping people really gives me inspiration.”
There are other things on her mind, though.
Although Steve’s condition has obviously deteriorated in the past two years, Michel said its progression is “about in the middle.”
Sooner than later, the decision will have to be made whether Steve will go on a ventilator, which sometimes prolongs the lives of ALS victims for years, even decades.
At any rate, the Gleasons are planning for that. They’re even on the verge of deciding whether to have a second child.
“We’ve wanted Rivers to have a sibling,” Michel said. “And we’re getting more help for Steve. I think we’re ready for No. 2.”
And, Michel added, if that sounds strange to the outside world, so be it.
“Sometimes, our life isn’t what it’s supposed to be, but it’s normal to us,” she said. “We just choose to live it the best way we can.”