“Graham makes you have a big family,” she said in her charming, condensed syntax.
I had hired Kadiatou, a little mother of three newly arrived in New England from Ivory Coast in West Africa, to look after my 22 year old son, Graham, while I slept at night. Graham suffered from severe cerebral palsy and could not walk, speak, or even roll over in his bed without assistance. He also had terrifying epileptic seizures which occurred without warning.
When I met Kadiatou, I told him that Graham’s mother and I were from small biological families and even then most lived far from our home north of Boston. We were passionately devoted to our son, but caring for him was complicated and required help.
A radiant, caramel-skinned woman, Kadiatou saw through Graham’s seemingly crippling handicap, instead discovering something ethereal behind my strikingly beautiful boy’s large hazel eyes. His comment on the “big family” was truly a proclamation. She believed Graham was meant to introduce us to a plethora of people – a human circle of love and joy that in its essence would become family.
Years earlier, when Graham was around 10, we were fortunate enough to discover a magical place on Martha’s Island called Jabberwocky Camp, the oldest vacation camp for people with disabilities in America.
Getting a spot at Camp Jabberwocky was about as easy as getting admitted early to Harvard. But miraculously, Graham was accepted, and as a medic I found my own way as a camp medic. At Jabberwocky, a place “where hope flourishes”, we found ourselves in the warm embrace of a passionate and wacky extended family – a family in which everyone is valued equally.
Fred Rogers once said, “The only thing that really changes the world is when someone comes up with the idea that love can flow and be shared.” And the irrepressible founder of Camp Jabberwocky, Helen “Hellcat” Lamb, fully embodied this 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 following World War II, Helen was a young widow, with three children, working as a speech therapist at a clinic in Fall River, Massachusetts, which treated clients with developmental disabilities. Irritated to see disabled children spending languid summers indoors, she had an idea: what if she could find a place where they could experience the joys of summer – just like so-called able-bodied youth – to live together and enjoy days filled with fun, physical activity and whole new adventures?
Suffice it to say, Helen encountered many naysayers – the doctors, among them – telling her that her idea was impossible. “Well, I do it anyway,” she said.
So, in the summer of 1953, Helen, accompanied by three children in wheelchairs and a lone young helper, descended the gangway of a ferry docked at Oak Bluffs on the island of Martha’s Vineyard. With little money and even fewer believers, his dream of a summer camp for children with disabilities was about to come true. Eventually, the camp would be nicknamed Jabberwocky, after a fanciful poem by Lewis Carroll, author of “Alice’s Adventures in Wonderland”.
Some 44 years later, on my first day as a camp medic at Jabberwocky, the legacy of Helen’s vision was extremely clear. Everywhere I turned there were people, with and without disabilities, happily hugging friends and strangers with the same abandon, including – to my delight – Graham. Before I knew it, I was hugging everyone too, and soon Graham’s mother Cynthia would volunteer to come and cook for 80 hungry and rambunctious souls at camp as often as she could. Over time, we have developed deeper and deeper bonds with people, and for each of us, Camp Jabberwocky has become a family. Helen had a simple saying, one in fact that the camp lives on to this day: “There is a way. Find it. ”It resonated even more with us now.
Flash-forward, shortly after Kadiatou joined our family as Graham’s night assistant, he passed away, aged 22, after a fit of grand mal. Along with our untold 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 the return would be bittersweet. After an incredible 13 summers there with Graham, he would be sorely missed. Yet we would 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 with grief. Soon after, Sam, a remarkably nice young camper with Down syndrome, quietly came out and sat down next to me. Quite naturally, he put his head on my shoulder and, in a barely audible voice, he said, “I love Graham. I miss Graham. I love you. It will never change.
After to visit Camp Jabberwocky, Sarah Putnam, a Boston-based photographer, wisely wrote, “The only handicap that is not evident at Jabberwocky is the handicap of distance and restraint. The gift Sam gave me that morning is an example of what is now called “Jabberwocky love”.
Each year, as summer in New England begins to wane and Jabberwocky campers and volunteers share their tearful farewells, a sort of diaspora begins again. As we head home, boarding ferries across Vineyard Sound, each 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. Maybe they encourage us to seek out the magic we hold dear at camp when we get home.
Personally, I have to admit that sometimes I lose the sense of innocence, connection, and open-mindedness when I leave the peaceful haven of Camp Jabberwocky and return to the real world. But I’m learning to gently push myself to be more like Graham and the countless other campers I’ve been fortunate enough to know, their hearts and minds infinitely open to embrace those who are different and love them as family.
For this blessing, I thank my beautiful boy. As Kadiatou put it so well, “Graham makes you have a big family.”
Steven Gardner, MD, is an internist at Massachusetts General Hospital and an assistant professor of medicine at Harvard Medical School. His book “Jabberwocky: Lessons in love from a boy who never spokeComes out next month.
Image: Graham and me. Inspired by trailblazers like Rick and Dick Hoyt and Ross and Josh Lilley, Graham and I discovered over time that it was possible to share ‘high performance’ sports together in almost indescribably rewarding ways, including cycling, kayaking, windsurfing and skiing. The underlying notion represented by these activities is that nothing is really impossible if you want it enough and do it with someone you love.