Our annual celebration of extraordinary New Englanders honors a Maine couple on a mission to put the great outdoors within everyone’s reach and a Massachusetts mother working to connect, support, and empower parents of seriously ill children.
By Ian Aldrich
Oct 17 2017
Annemarie and Bruce Albiston are on a mission to put the great outdoors within everyone’s reach. Here, they encourage angling enthusiast Donald Freeman of Bath, Maine, a return visitor to their Adaptive Outdoor Education Center.Photo Credit : Mark Fleming
Our annual celebration of ordinary New Englanders with extraordinary hearts honors a Maine couple on a mission to put the great outdoors within everyone’s reach, and a Massachusetts mother working to connect, support, and empower parents of seriously ill children.
As Annemarie Albiston steps into the great room of the Adaptive Outdoor Education Center in Carrabassett Valley, Maine, she spreads her arms wide to introduce the light-drenched space. Before her is a couch, a pair of large comfortable chairs, and a tall fieldstone fireplace. “I came in here one afternoon last winter and I saw just the most amazing thing,” she says. “The fire was going, and all around this room were guests—with prosthetic legs lying everywhere and people in wheelchairs buzzing about.” She shakes her head and rubs her arm. “I still get goose bumps thinking about it.”
A sign hanging over a nearby window reads: “If you can dream it, you can build it.” It’s an appropriate motto for Annemarie and her husband, Bruce, who two years ago built this center, which sits at the foot of the Sugarloaf ski resort and serves as a gateway to the outdoors for people with physical and mental disabilities. Since it opened, there have been a lot of first-time moments for its guests: a first spin on a bike, a first winter glide on skis, a first hike, a first kayak ride. In other words, Anne-marie has gotten a lot of goose bumps.
The Albistons, both retired, are native Mainers who’ve spent nearly two decades bringing a slice of their home state—its skiing and sailing, snowshoeing, and hiking—to people of all ages who rarely, if ever, get a chance to experience it. They’ve worked with groups that serve the disability community, such as Maine Adaptive and Pine Tree Camps, and since 2012 they have organized an annual weekend retreat for individuals with aphasia, a condition, usually resulting from a stroke, that leaves them without the ability to communicate.
But in these efforts there were limits to the kind of assistance the Albistons could offer. The outdoor experiences weren’t always as immersive as they liked; program costs priced some people out of enjoying them. So, five years ago the Albistons set out to create their own facility, and in December 2015 they welcomed their first guests to the Adaptive Outdoor Education Center.
On a two-acre lot there’s a spacious lodge that sleeps 25; two large yurts for entertainment, meals, and crafts; an adaptive challenge course; and a recently built handicap-accessible treehouse. Hiking trails snake through the woods. Nine new adaptive bikes are housed in a portable trailer. The center is open year-round, and the Albistons make it available to any group that works with the disabled. In the summer, guests can hike and bike, or boat on a nearby pond. Come winter, Bruce shuttles visitors to the mountain for a day of skiing or snowshoeing. The couple charges $18 a night per guest. More than a million dollars went into building the property, almost all of it covered by the Albistons.
“I ran my own business for 42 years,” says Bruce, who sold Maine Oxy, a welding supply and industrial gas firm, in 2013. “I like to be able to do what I want, when I want. I’m used to that. And I’ve been on the other side of being asked for money. Before we went asking for help, I wanted to be able to show what we had created was going to last.”
The Albistons’ path to get here was not a straight one. In 2005, Anne-marie’s father, Andre Hemond, a high school principal in South Portland, suffered a stroke that crippled him with aphasia, which affects more than two million Americans. Like many, Anne-marie, who was her father’s primary caretaker, knew nothing about the condition. She devoured whatever literature she could find and connected with experts, and over a long weekend she volunteered with Bruce at an aphasia center in New Jersey. On their way back to Maine, the couple vowed to create a support network like it closer to home. “I kept saying, ‘We have to do this, we have to do this,’” says Annemarie.
At their first weekend retreat for aphasia victims and their families, held in Rome, Maine, in 2012, guests ate good food, made crafts, and received free manicures and pedicures. “We had 11 people come, and it felt like this huge success,” says Anne-marie. “With aphasia, people live in a kind of isolation, and when it was over it was like we were all old friends.”
Among those who attended in 2012 were Beverly Glaude and her husband, Leo, who’d suffered a stroke eight years before. It had been a hard stretch for the couple: forced retirements, a shrinking social circle, a life dominated by medical care for a condition few around them could relate to.
“Leo made new friends and he was just able to be himself. Nobody was judging him,” Beverly says of the retreat. “On the day we all left, everybody was crying.”
The retreat went on to become an annual event, growing steadily, and the Glaudes returned for every one until this year, when Leo passed away. His paintings now hang on the walls of the Adaptive Outdoor Education Center, which he and Beverly visited in the summer of 2016. “Bruce and Anne-marie spend the money to make things right,” says Beverly. “What they’ve created has meant everything to us.”
There is more to come. On a late spring day, the Albistons were mapping out a new interactive hiking trail, which would feature signs that visually impaired guests could scan with a smartphone to learn about their immediate surroundings. Two more adaptive bikes had just been ordered, and work would soon begin on the treehouse.
There was also the planning for the next aphasia retreat, set for later that summer. A partnership with Sail Maine to get people out onto Portland Harbor had come into focus. And in the coming week the couple would travel south to look at an old farm in Cumberland to purchase. Their plan: to build a satellite version of the Adaptive Outdoor Education Center that could also host cooking and gardening classes. There would be more space, more of a population to draw from, and more of an impact to make.
“There’s just so much to do,” Bruce says.
Learn more at adaptiveoutdooreducationcenter.org.
In late 2012, Blyth Lord was flying back from Orlando trying to figure out the rest of her life. For the previous decade, the 45-year-old television producer and Newton, Massachusetts, resident had volunteered her time as an educator on issues surrounding the care of a child with a life-threatening illness. She had produced videos on the topic, given parent group talks, and delivered high-profile presentations at physicians’ conferences up and down the East Coast. It was important work, necessary work—but it wasn’t enough, she felt.
“The sense of urgency was profound,” she says. “I was starting to have this calling, and I was horribly afraid that I was not going to heed it. That I would die with regret that I missed something that I was supposed to do.”
Lord’s passion was born out of loss. In 2001, her 2-year-old daughter, Cameron, died of Tay-Sachs disease, a rare and incurable genetic illness that results in early childhood death. But the overwhelming grief she and her husband, Charlie, shared was softened by the medical care they had given to their daughter. “What resonated was that for something that was incredibly sad, it was as good as it could possibly be,” says Lord. “We made the best decisions we could, and we had no regrets.”
Lord, the mother of two other young daughters, says this peace of mind stemmed from the high-level palliative care that accompanied Cameron’s illness. Through it, they navigated thorny issues of pain management and whether a feeding tube should be used to extend their daughter’s life (they decided it shouldn’t). But the Lords’ experience was the exception, not the rule. At the time, palliative care in children’s medicine was still in its infancy, leaving parents with little guidance when it came to making gut-wrenching decisions. Lord wanted to change that.
Working closely with Cameron’s pediatrician, she brought her message of the benefits of creating more complete end-of-life care to groups and medical schools throughout New England. But its reach felt limited, and on that plane ride back from Orlando, Lord began to sketch out on a legal pad the beginnings of a new project: a Web-based multimedia platform to connect the parents of seriously ill children with information, expertise, and, most important, other people who wrestled with the same issues.
“I wanted families to see they’re not alone,” says Lord. “Parents trust [other parents] and learn from them. But parents like this, in this situation, are very hard to find.”
In spring 2013, Lord left her job at WGBH in Boston. Less than a year later, she launched the Courageous Parents Network (CPN). The website offers original videos, blog posts, and podcasts that cover the scope of issues that come with caring for a seriously ill child, from bereavement to marriage health. New content goes up every month, much of it featuring families who’ve used the site’s resources. CPN is free to use and totally anonymous.
Many of CPN’s referrals come from the medical community. Sarah and Steve Shaw, for instance, were pointed to it by a palliative care social worker at Boston Children’s Hospital. Residents of Burlington, Vermont, the Shaws learned in late 2015 that their 7-month-old daughter, Emerson, had Gaucher disease type 2, a fatal neurological illness. Over the next several months, the family’s life became a stream of doctor’s visits and grieving. The couple felt as if they were on an island, and a virtual community hardly seemed a way to alleviate that. But late one night, Sarah went on CPN—and what she discovered surprised her.
“It was really helpful to hear other parents articulate things we didn’t have the words for yet,” Sarah recalls. “‘Anticipatory grief’—I’d never heard of it. But that’s what I was feeling. You’re looking at your happy baby, but you’re grieving her death. It gave me context for those feelings.”
Connections like that are the very building blocks of CPN. The network can’t save a child’s life, but it can honor it by helping parents feel more empowered in the decisions they make and more comfortable with the emotions they must navigate.
“This is something that started out very personal for me,” says Lord, who uses a mix of donations and grants to fund the site’s services. “But now it’s about all the other families we’re talking with and inviting to tell their story. These people I have met and heard from are dealing with sacred, beautiful, and profound issues that are really grounding. It’s life and death, and finding meaning in the face of it.”
Learn more at courageousparentsnetwork.org.