Mary Bernier’s day begins just like most moms’. Up by 6 AM, her family gets ready and heads out the door — Mary to her job at Target, and her son Sam to high school. At 2:30 PM, Mary leaves work and rushes to meet Sam’s bus. They spend the evening together, eating, bathing, and preparing for the next day when they get up and repeat their routine. Each evening ends with Mary whispering “I love you” to Sam, and him whispering it back.
But Mary’s work day doesn’t end once Sam is tucked into bed. In fact, it simply continues.
Sam is an 18-year-old junior in high school with multiple special needs. When he was 5 months old, he was diagnosed with Johanson-Blizzard syndrome, a rare genetic disorder. At 10 months old, he was diagnosed with type 1 diabetes, then epilepsy at age 8, and hypothyroidism and scoliosis at 17.
Sam requires constant supervision, as well as care for his daily needs, such as bathing, dressing, feeding, and using the restroom. Mary checks Sam’s blood sugar every four hours (including in the middle of the night), and administers medication for his thyroid issues, seizures, and diabetes.
Sam not only has a long list of needs, but he draws attention from strangers. He’s small for his age, can be very vocal, and sometimes engages in stimming by biting his hands.
Mary tells Babble, “It’s human nature to be curious. It’s when the stares continue after realizing that he’s a person with special needs upset me. The beauty of Sam is that he doesn’t realize any of this. It’s not even on his radar. All he sees in a world sometimes filled such negativity and hatred is goodness. He doesn’t dislike anyone.”
Sometimes people don’t know how to react to Sam, but his mom says it’s really quite simple:
“I’d like the world to know not just about Sam, but all of the individuals with disabilities, that they are people, the same as you or I. They may look different, or not be able to communicate the way we do, but they are still people. Don’t be afraid or intimidated by them. Wave, offer up a smile or come over and say hello. We love it!”
Though Sam has special needs, he likes things many kids enjoy. He has an affinity for YouTube (especially snow blower videos), food (Dunkin’ Donuts coffee and breakfast sandwiches), and watching cool things like airplanes taking off and landing at Portland International Jetport.
Mary admits parenting a child with special needs “can be challenging, tiring and sometimes lonely, but it’s also extremely rewarding.”
She shares, “It makes you appreciate the smallest of accomplishments. Mole hills become mountains to us special needs parents. Not to say that I don’t have days where I’m a raving lunatic or a blubbering mess, but you get over it. You brush it off and get back at it. It’s what you have to do.”
Kristen Davis, Mary’s boss and friend, saw that the Robbie Foundation, a not-for-profit organization that supports children with special needs in Maine, was seeking nominations for parents of children with special needs for a getaway experience. Kristen immediately thought of Mary and submitted her name for the prize.
Robbie Foundation Founder Lynn Gierie tells Babble:
“Robbie Foundation accepts nominations twice a year for a deserving parent of a child with special needs. A committee of five come together to review hundreds of applications and make a determination. All nominations are worthy and deserving of a getaway but we are limited to two parents twice a year. Mary’s story was compelling with the significance of his disability, single mom, and her desire to care for him as long as she can made for a compelling situation. She is a super-hero to many.”
Mary shares, “I was humbled that [Kristen] thought that much of me as a mom to do this.” And as luck would have it, Mary was awarded a spa getaway — something she says she never would have gifted to herself. The getaway was for two people, so Mary chose to take her fiancé Chris Keyes.
The two spent the day enjoying gifts from the foundation, which included full body salt scrubs, lunch, facials, and full body massages. It was, according to Mary, “a wonderfully relaxing day where people took care of me instead of the other way around, which was odd! It left me with wonderful memories that I won’t forget!”
Mary explains that taking care of Sam has made her a better person. It’s clear that life as the mom of such an amazing son with special needs has taught her so much and changed her in countless ways. This inspirational mom adds, “It’s hard to explain, but I see life much differently. He’s taught me compassion, patience and empathy that I may not have ever known, and for that, I am grateful.”