The lives of many parents with special needs children are marked by dividing and conquering.
One parents stays home while the other goes out. One parent is focused on the child while the other cooks or cleans or works. One parent here, the other there. Split focus.
Life becomes separate, a little isolating — sometimes even when you’re together.
So when Maria La France was applying for a wish from Make-A-Wish Iowa for her son, Quincy Hostager, whose rare genetic epilepsy syndrome renders him nonverbal and mostly immobile, she wanted something that would put her whole family side by side.
As an active cyclist who met her husband, Dan Hostager, on RAGBRAI, she knew just the thing — a specially made bicycle.
“Pretty much anyone who has a family member who is faced with a life-threatening illness has had their life forever altered,” La France says. “In many cases, they’re left out of simple things like going on a bike ride or doing something together as a family, and Make-A-Wish comes along and says, ‘Come on, you’re gonna do the things. You’re gonna get your wish.’”
“This bike was such a game changer for us, and it’s changed our life in such a positive way,” she adds.
When Quincy reached a new milestone this spring by completing high school, La France didn’t want to have a regular backyard party where people felt obligated to bring a gift. Instead, she wanted to pay Quincy’s wish forward — and fulfill a personal dream along the way.
So she got a group of friends together to ride a day of RAGBRAI and fundraise for Make-A-Wish, hoping that as they pedaled they could raise enough money for another family to experience the joy of cycling just as they had.
“We don’t know how much Quincy understands, but we know that he knows love and he knows people,” La France says. The freedom of biking, she adds, gives him access to both.
Couple meets through chance encounter on RAGBRAI
La France has always been active, and even biked every day to pick up her older son from day care. Her husband, Dan, cycled, too, and was an elite runner and track coach for years.
The pair met in 1998 when he stopped by the house where her RAGBRAI team was camping for the night.
La France needed to go to the store but didn’t want to drive the huge U-Haul they’d being using to transport bikes that week, so Hostager offered to take her. They hit it off on their short drive to the grocery and have, essentially, never looked back.
“In fact, that evening we were just talking as a group and someone turned to us and said, ‘Are you two married?”’ La France remembers. “And I thought to myself, ‘I could be.’”
They did one more full RAGBRAI, but had Quincy, a honeymoon baby, within a few years of their grocery trip.
Quincy was born perfectly healthy, La France says, but started having seizures at about five months. They saw doctor after doctor, and did test after test for every illness imaginable, each one more draining or invasive than the next. Nearly a decade after symptoms first started, they got the diagnosis of Dravet syndrome.
“Many times, we’d end up in the hospital or think that he wasn’t going to make it,” she says. “Now, thanks to a combination of medical cannabis and some other drugs, he’s in a much healthier, much more stable, predictable lifestyle — so much so that we’re able to even consider going on a bike ride.”
At 21, Quincy is not seizure free, La France says, but the seizures are under control. And after years of the unrelenting whirlwind of medical appointments and procedures, the family is starting to “savor” life again.
“We’ve had to come to a place of acceptance that he’s always going to have Dravet syndrome, and so, now, how do we make the most of it?” she says.
“We have kind of flipped the bird at the disease and said, ‘Hey, this is the life we’re gonna have. We’re gonna have fun. We’re gonna have a life as a family despite this illness. It’s not going to get the best of us.’”
Specially made Make-A-Wish bike has offered family time together
Before they were gifted their specially made bike, the family had a traditional Burley bike trailer. But as Quincy grew, a trailer connected to the back of the bike became untenable and unsafe — he could start having a seizure and they wouldn’t be able to see him. They thought about buying a pedicab, but that would be unwieldy on the roads and trails around Des Moines.
“I was in Europe, and I saw a lot of bikes like the one we have now for elderly parents or special needs kids,” Dan Hostager says. “It was just commonplace there, where you don’t see them over here so much, so that kind of started the process.”
Their wish was granted in 2019, and they’ve been on the move ever since.
Most Sundays when the weather is nice, the family takes a bike ride around town. The front carriage of their specially made bike detaches into a wheelchair, allowing them to get Quincy out in the fresh air at festivals or markets — and, even more importantly, letting him be around people and their love.
“When we are on a bike ride, complete strangers let their guard down,” La France says. “When we’re on the trail, they actually smile and wave. And when we’re stopped, like when we’re at Water Works Park or the farmers market, they come up and want to take their picture with him.”
The wish gave them what they set out to find, namely time being active and time together, La France says. But it’s also given her the comfort that her son can be part of this world. That he won’t be forgotten.
“If we can have more people experience that, it will make us and Quincy very happy,” she says.
Family feels ‘amazing’ support from relatives, friends, ‘complete strangers’
Just as riders were dipping their tires in Davenport on Saturday, Team Quincy met their goal of $10,000, which is about the cost of a new specially made bike, La France says.
“It felt amazing to have the support of Team Quincy and complete strangers who I’ve never met making donations,” she says. “That’s just the power of what someone can do when it’s not just about yourself, but when it’s about looking out for others.”
“That’s what we’ve benefited from with all of our friends and family looking out for us,” she adds. “Sometimes you can feel so alone and socially isolated with a person with a serious illness and just knowing that you’re not is such a gift.”
Source: desmoinesregister.com, Courtney Crowder