“Graham make you have big family,” she said in her charmingly condensed syntax.
I had hired Kadiatou, a tiny mother of three newly arrived in New England from West Africa’s Ivory Coast, to watch over my 22-year-old son, Graham, while I slept at night. Graham had severe cerebral palsy, and couldn’t walk or talk or even roll over in bed without assistance. He also had terrifying epileptic seizures that occurred without warning.
When I met Kadiatou, I told her that Graham’s mom and I came from small biological families and that even then, most of them lived far from our home north of Boston. We were passionately devoted to our son, but caring for him was complicated and required helpers.
A radiant woman, with skin the color of caramel, Kadiatou saw straight through Graham’s seemingly crippling disability, discovering instead something ethereal behind the big hazel eyes of my strikingly beautiful boy. Her comment about “big family” was a proclamation, really. She believed that Graham had been destined to introduce us to a plethora of people — a human circle of love and joy who by its very essence would become family.
Years earlier, when Graham was about 10, we were fortunate to learn about a magical place on Martha’s Island called Camp Jabberwocky, the oldest sleepaway camp for people with disabilities in America.
Securing a spot at Camp Jabberwocky was about as easy as gaining early admission at Harvard. But as if by miracle, Graham was accepted, and as a physician, I finagled my own way in as a camp doctor. At Jabberwocky, a place “where hope flourishes,” we found ourselves in the warm embrace of a passionate and zany extended family — one in which every person has equal value.
Fred Rogers once said, “The only thing that really changes the world is when somebody gets the idea that love can abound and be shared.” And Camp Jabberwocky’s irrepressible founder, Helen “Hellcat” Lamb, fully embodied that truth. Often impatient, sometimes irascible, she was a force of nature who, when it came to her vision, wouldn’t take no for an answer.
In the years after World War II, Helen was a young widow, with three children, working as a speech therapist at a Fall River, Mass., clinic that treated developmentally disabled clients. Angered by seeing kids with disabilities spending summers languishing indoors, she had a thought: What if she could find a place where they could experience the joys of summer — just as so-called able-bodied youngsters did — living together and enjoying jam-packed days filled with fun, physical activity, and all-new adventures?
Suffice it to say, Helen was met with numerous naysayers — the doctors, among them — telling her that her idea was impossible. “Well, I’m doing it anyway,” she said.
So, in the summer of 1953, Helen, flanked by three children in wheelchairs and a solitary young helper, descended the gangway from a ferry docked in Oak Bluffs on the island of Martha’s Vineyard. With little money and even fewer believers, her dream for a summer camp for kids with disabilities was about to come true. Eventually, the camp would be dubbed Jabberwocky, from a whimsical poem by Lewis Carroll, author of “Alice’s Adventures in Wonderland.”
Some 44 years later, taking in my first day as a camp doctor at Jabberwocky, the legacy of Helen’s vision was powerfully clear. Everywhere I turned, there were people, with and without disabilities, joyously hugging friends and strangers with equal abandonment, including — much to my delight — Graham. Before I knew it, I was hugging everyone, too, and soon Graham’s mom, Cynthia, would be volunteering to come and cook for 80 hungry, rambunctious souls at the camp as often as she could. Over time, we developed ever-deepening bonds with people, and for each one of us, Camp Jabberwocky became family. Helen had a simple saying, one in fact that the camp lives by to this day: “There is a way. Find it.” That resonated even more for us now.
Flash-forward, not long after Kadiatou joined our family as Graham’s nighttime helper, he passed away, at age 22, after a grand mal seizure. In addition to our unspeakable loss and grief, whether or not to return to Camp Jabberwocky that summer without him was a complicated decision for Cynthia and me. We knew that going back would be bittersweet. After 13 amazing summers there with Graham, we would miss him profoundly. Yet we’d also welcome the love and joy that would surely surround us there. Just five months after Graham’s death, we decided to go.
One sparkling morning, sitting alone on the porch of Jabberwocky’s main cabin, I found myself overcome by grief. Before long, Sam, a remarkably kind young camper with Down syndrome, quietly emerged and sat down next to me. Ever so naturally, he rested his head on my shoulder and, in a barely audible voice, he said: “I love Graham. I miss Graham. I love you. That will never change.”
After visiting Camp Jabberwocky, Sarah Putnam, a Boston-based photographer, wisely wrote: “The one disability not in evidence at Jabberwocky is the disability of distance and restraint.” Sam’s gift to me that morning is an example of what has come to be called “Jabberwocky love.”
Every year, as summer in New England begins to wane and the campers and volunteers at Jabberwocky share their tearful goodbyes, a kind of diaspora begins anew. As we head homeward, boarding ferries to cross Vineyard Sound, each one of us carries a piece of Helen and a nugget of her dream come true. The unbridled love and joy we feel are like tiny butterflies, flapping their wings inside us. Perhaps they’re encouraging us to seek out the magic that we cherish at camp when we get back home.
Personally, I must admit that sometimes I lose the feeling of innocence and connection and openheartedness when I leave the safe haven of Camp Jabberwocky and return to the real world. But I’m learning to gently nudge myself to be more like Graham and the countless other campers I’ve been blessed to know, their hearts and minds endlessly open to embracing those who are different and to loving them as family.
For that blessing, I thank my beautiful boy. As Kadiatou so astutely said, “Graham make you have big family.”
Steven Gardner, M.D., is an internist at Massachusetts General Hospital and an assistant professor of medicine at Harvard Medical School. His book “Jabberwocky: Lessons of Love from a Boy Who Never Spoke” is coming out next month.
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This post is republished on Medium.
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Image: Graham and me. Inspired by pioneers like Rick and Dick Hoyt and Ross and Josh Lilley, Graham and I discovered over time that it was possible to share “high challenge“ sports together in ways that were almost indescribably rewarding, including cycling, kayaking, wind surfing and skiing. The underlying notion represented by these activities is that nothing is really impossible if you want it badly enough and do it with someone you love.