“Stop the train! I want to get off!” Jean shouted.
An excerpt from Good Grief: Love, Loss & Laughter.
Jean’s son of forty-three years had died in a restaurant. He choked to death. He had survived a life of infinite struggle as he lived with Down’s Syndrome and the isolation, stigma and cultural alienation he and his family had experienced daily.
“He was such a good soul,” Jean continued, as tears streamed down her cheeks. “Of all the things to happen, why did it have to happen to him?”
Her son Daniel had become increasingly independent as he aged and was living in a group home in the Bay Area. He was working as a street cleaner during the day and enjoying a variety of social events with his living companions on his off-hours. Jean had visited him two days prior to his death, as she has done twice a week for the last fifteen years. She said she felt blessed, burdened and bonded with Daniel in a way only mothers of developmentally delayed children can know.
“Daniel was so in the moment,” she said. “His smile was infectious.” She looked down at her hands. “I know this may sound crazy, because people think folks like him aren’t as aware of others, as they are of themselves, but Daniel,” she grinned, “was always thinking about others. He could tell when someone was down. He’d give them a big bear hug and say, ‘There, there.’”
She cried bittersweet tears. “He always said, ‘I love love.’ and would wait for you to say it. He wouldn’t do anything else until you would say, ‘I love love too.’ back to him. He would just stand there waiting, no matter how long it took.”
Jean had taken care of Daniel single handedly for most of his life. Not long after Daniel was born, his father moved away saying he couldn’t live with an “abnormal” kid. In his home country, people made fun of kids like Daniel and would say they were cursed and had the evil eye. He blamed Jean and her background for the child’s difference, telling her that her family must have done something very bad in the past.
So Jean, at age twenty-four, took on the already difficult and exhausting life of single-parenthood, combined with the complication of a child that would stay a child for much of his life.
No matter how much she loved him, the reality was that caring for Daniel was overwhelming and all-consuming. She seldom had any time to herself and finding support and child-care as he aged became increasingly difficult. Yet, she loved him like a mother loves an only child. Her identity, reason for living and self-image of who she was became increasingly ingrained with her son’s life.
When she realized that his independence and happiness would be greatly enhanced if he learned to live on his own and separate from her, she was heartbroken.
Having him move to a group home for independent living, which was a forty-five minute drive away, felt like having your ten-year-old go away for a weekend sleep-over and never coming home. She was petrified, anxious and relieved when he actually moved. She said she grieved a thousand deaths day after day and rarely allowed herself to enjoy the “freedom” of her drastically changed less-encumbered life.
“It took me years to grieve the loss of him as a boy, acknowledge him as a man, and let go of my primary identify in the world as ‘Daniel’s Mom,’” Jean said, shifting her legs in the chair. “The last four years were wonderful. I had let go of so much, was doing things I’d always wanted to try, and trusting that he was safe and happy. Then,” she closed her eyes, as her held fell back, “then I get this call and he’s gone. Just like that . . . no warning . . . no good-byes . . . no more ‘I love love.’” She put her head in her hands and sobbed.
Later, after blowing her nose and wiping her eyes, she said, “Now I have to start all over again and I don’t want to. It isn’t supposed to be like this. I’m supposed to die first, not him.” Her eyes met mine. “I want to get off. I want to just disappear.”
She took a few moments of silence, then started telling me about her and Daniel — about all the funny, crazy, confusing, exciting, scary and unbelievable things he and they had done together. She told me about his temper, his sweetness and his frustrations with the world. She brought him to life again and again with her stories.
After another half-hour of hearing about Daniel, Jean placed her hand over her heart, closed her eyes and said, “He’s not gone. I can feel him right here. I can hear him telling me to ‘love love’.”
More support and stories at: Good Grief: Love, Loss and Laughter.