Dad plans 72-hour boat ride on Forest Lake to raise awareness of daughter’s disorder
A power adapter, an AM/FM radio and an air mattress are among the few items that Paul Meunier is packing. He hopes they will not be his only companions during a unique adventure set to begin Friday morning, Aug. 3.
The former mayor of Ham Lake will hit the water of Forest Lake in his 14-foot fishing boat at 8 a.m. and not return to dry land (save for a few bathroom breaks) for 72 hours.
What would cause a bright, middle-age man to leave the comforts of home to battle heat, waves and boredom for three full days? In Meunier’s case, it’s the most important cause of all.
He is shoving off to raise awareness of epilepsy, the neurological disorder that has caused his teenage daughter, Hannah, to suffer thousands of seizures over the course of eight years.
“It just dawned on me once: Living with epilepsy is kind of like living in a little boat on a big lake,” he says. “The waves just keep coming. You’re exposed to the elements. Whatever Mother Nature’s going to give you, that’s what you take that day. The good part about the boat is you can step off. With epilepsy you can’t; you’re just on that boat forever. Sometimes the water’s a little calmer than others but you never know when the storm is going to kick up, and it gets really rocky.”
On a Mission
In just about every way, Hannah Meunier is your everyday 13-year-old. She loves swimming and riding her horse and is getting ready to enter eighth grade at Roosevelt Middle School in Blaine.
In a few other ways, Hannah is exceptional. Since her first seizure in May of 2005, no moment has been free from risk. Paul and his wife, Lisa, responded to the diagnosis with vigor.
“For about the first three years after being diagnosed we went on this quest to solve the seizures,” Paul says. “We talked to doctors, we tracked and logged and were really diligent about whatever we could do. We were convinced it was just going to stop. We were going to figure it out.”
It appeared in 2008 that the family was close to winning its fight. Hannah was deemed a good candidate for brain surgery, a procedure that ends the seizures for many with epilepsy. The Meuniers even went so far as to hold a “Goodbye to Seizures” party.
A final test shattered their hopes, though, as it revealed that the area of the brain to be operated on was in close proximity to the part that controls speech. It was simply too big of a risk.
From the depths of grief, the Meuniers found a new outlook that has sent them on a different kind of quest.
“We were all crying,” Paul recalls. “About a half hour into it, Hannah looked up and said, ‘Can I still ride horses?’ and I said ‘Yeah.’ ‘Can I still go tubing?’ ‘Yeah.’ And then she said, ‘Well, it’s not like it’s the end of the world, is it?’
“It was very impressive because she focused it for us. From that point on it was clear — it wasn’t the end of the world. We just had to re-think [because] we’re not solving it, we’re gonna live with it.”
The Meuniers had avoided the ‘E’ word until then.
“We never used that word until we realized this isn’t going away anytime soon,” Lisa says. “The word ‘epilepsy’ just has this connotation, and we had it, too.”
See www.hannahsbananas.net for more information on the Meuniers and the upcoming Stroll for Epilepsy.
Ever since, they have worked tirelessly to raise awareness of the disorder. The ‘Hannah’s Bananas’ team has consistently been among the top fundraisers in the Stroll for Epilepsy held in St. Paul for the Epilepsy Foundation of Minnesota. In three years, Hannah’s teams have raised $25,000. This year’s team for the Aug. 9 event totals over 100 and will be a record for the family. The Meuniers are hoping for 150, as Paul’s weekend on the water figures to boost the following for Hannah’s Bananas.
“We decided we were going to do whatever we can to raise awareness,” Paul says. “If we can help someday help find a different cure or a new treatment, make it better for Hannah down the road or prevent other kids from having to go through what Hannah’s had to then it’s worth it. That’s our purpose now.”
A New Quest
The shift to acceptance and awareness requires a strategy of coping.
Doctors continue to search for the ideal cocktail of drugs for Hannah, and she recently had implanted a device which can help minimize seizures by sending a current to the brain.
Still, the incidents continue. Rather than live in fear, though, the Meuniers have decided that Hannah will have the same opportunities as her peers, even if it means throwing caution to the wind to some degree.
“I think people live in fear of seizures happening,” Paul says. “We have never let that win. We just make accommodations. We have to play it safer and our odds are a little different, but we just try to do whatever we can to give Hannah the best possible experience.”
Paul sold his aluminum fishing boat and upgraded to one with a flat bottom so Hannah can still fish. Rather than use that boat for tubing, the Meuniers have a jet-ski for pulling Hannah on an extra-wide tube. Her horse, J.R., was selected due to his tame nature.
The seizures still strike, and often at bad times such as Twins games, school programs and even on the boat or tube. Allowing Hannah access to all the joys in life is worth it, though.
“Sometimes it backfires and most of the time it doesn’t,” Lisa says. “Most of the time the risk pans out.”
Hannah says that epilepsy can be annoying because it takes a lot of monitoring, but adds that it won’t keep her from living a regular life.
“You are still a normal person but you just have a health problem,” she wrote in an essay. “Everyone has a problem somehow, somewhere in their body, either on the outside or the inside.”
Paul is hoping for little adventure but lots of activity on the lake this weekend. He’ll have his smartphone and fishing pole but does not want to spend much time with either.
A seven-foot balloon flying 30 feet over his boat will ideally draw in curious boaters. He will be waiting with information about Hannah, the upcoming stroll fundraiser and epilepsy in general.
“Hopefully I’ll be talking to people most of the time,” he says.
Meanwhile, Lisa will spend some time promoting the cause from shore under a yellow tent at Lakeside Memorial Park. She and Hannah will bring Paul breakfast every day. Vannelli’s by the Lake will provide food and access to a bathroom. (“Everybody asks,” Paul says.)
Paul will tie up at night on the dock at Ron Vannelli’s house but spend the days motoring around the lake. A flotilla is planned from 1-3 p.m. on Sunday. All are encouraged to find the balloon and tie up.
Save for a thunderstorm, Paul expects to disembark at 8 a.m. on Monday no worse for wear. In his mind, it’s the least he can do for his daughter.
“She’s such a great kid,” he says. “‘Pick up your socks’ or ‘Do your chores’ is like end of the world but she never complains about going to the hospital or all the medical stuff she goes though. Just never complains. We learn from her all the time. She gives us strength. She’s really a trooper.”