WESTBROOK — Devoting your entire life to another person can be grueling, even if it’s someone you love more than anyone else.
The Robbie Foundation recognizes this and recently gave a Westbrook mother the chance to relax. Mary Bernier, who does everything for her son with special needs, was the one being cared for last weekend.
“It was great, but it’s still odd,” she said. “I’m so low maintenance.”
Bernier’s son, 18-year-old Sam Bernier, has Johanson-Blizzard Syndrome, a genetic disorder that affects multiple organ systems. Sam also has epilepsy, diabetes and scoliosis.
Sam requires constant care from his mother, who bathes and feeds him and helps him move around the house.
“For me, I basically have a toddler for the rest of my life,” Bernier said.
On Monday afternoon Bernier and Sam sat closely on the couch of their Westbrook home, touching each other’s faces and leaning on the other’s shoulder. Their undeniable bond was evident as they locked eyes and smiled widely at each other.
While Bernier loves taking care of Sam, she said it was great to be chosen by the Robbie Foundation for a spa day at Inn by the Sea in Cape Elizabeth so she could relax. The Robbie Foundation, based in Scarborough, helps children and young people with developmental disabilities by providing them with adaptive equipment, therapy treatments and other services.
Twice a year the foundation chooses two sets of parents raising special needs children and sends them to a spa or nice hotel. Bernier, who works at Target in South Portland, was nominated by her boss and was selected from more than 100 nominees.
“It was a really compelling story,” said Lynn Gierie, the foundation’s founder. “Honestly they’re all worthy.”
Bernier’s story stood out to the voting committee, Gierie said, because of how devoted she is to caring for Sam by herself. Bernier has no intention of having Sam live in a special care facility.
“She’s a single mom and he’s 18,” Gierie said. “She’s been at it for awhile and it wears on you.”
Bernier admits that caring for Sam is tiring, but that he’s never been a burden.
“Taking care of Sam is a lot of work, but it’s just what you do,” she said. “People say, ‘I don’t know how you do it,’ but you just do it.”
Caring for Sam without complaint is what Bernier does because he’s her child, she said. She emphasized she doesn’t a raise a child with special needs, she raises her child with special needs.
People often think taking care of Sam is akin to being a superhero, Bernier said, but it’s definitely not.
“We’re not superhumans,” she said. “This is normal for us. It’s not their normal, but to us this is our every day.”
Sam is in many ways just like any other kid. He attends Westbrook High School, loves playing video games, and, like a typical teenage boy, is always hungry. Bernier said some people can’t see past his disability, though.
“I don’t think it’s hateful or ignorance,” she said. “I think people just don’t know how to handle it.”
Being friends with other parents of disabled children is helpful, Bernier said. Gierie is among this group, as her 18-year-son Robbie, the namesake of the foundation, is disabled.
“She can completely relate first-hand,” Bernier said of Gierie. “She understands the struggles. It’s kind of like a band of brothers.”
As someone who understands the challenges of raising a child with special needs, Gierie said it’s important to give parents a break.
“We just recognize that the day-to-day life of having children with special needs is a challenge,” Gierie said. “We think this support is necessary for the continuance of them caring for their kids.”
Bernier and her fiance were treated to a full spa day on Jan. 20 at the luxury hotel and spa, where they received full-body massages, facials and lunch. Bernier said it was “out of the ordinary” for her because she rarely gets to pamper herself.
“I chose Inn by the Sea because I never would have done that for myself,” she said. “I couldn’t ever justify spending that type of money.”
Gierie said while the getaways for parents aren’t the Robbie Foundation’s main focus, the organization always strives to provide families with the things they not only need, but deserve. Most of the equipment the foundation provides to families are necessary for everyday life, such as medical beds and wheelchairs.
The foundation also provides kids with recreational equipment, such as specially designed bikes, which can cost thousands of dollars, but allow special needs children to play outside with other kids.
“We know firsthand the unmet needs that are out there and things that are out of reach for many people,” Gierie said. “We don’t want them to have to pick and choose when it comes to providing for their children.”
Bernier said Gierie has encouraged her to apply for assistance to buy Sam a bike or other equipment. She said she and Sam are content, though, and want to see the equipment go to a child who truly needs it.
“We have what we need for him and we’re fortunate for that,” Bernier said.
Kate Gardner can be reached at 781-3661 ext. 125 or firstname.lastname@example.org. Follow her on Twitter: @katevgardner.
Westbrook resident Mary Bernier, left, a single mother of a son with special needs, recently had a spa day, which included a massage from Inn by the Sea’s Virginia Veilleux, as part of a getaway provided by the Robbie Foundation.
The Robbie Foundation’s founder, Lynn Gierie, left, chose Mary Bernier as the most recent recipient of a spa day getaway it gives to parents of children with developmental disabilities.
Westbrook resident Sam Bernier, 18, has Johanson-Blizzard Syndrome, a condition that requires his mother, Mary Bernier, to provide him with constant care.