Martin’s World

Thursday, September 13th, 2007

“By then I had pulled Martin into my lap. Martin had let go of his bowels, was gurgling and losing consciousness. We were both completely soaked and covered with blood, and I was sitting in a puddle of blood and body fluids. I quickly realized I needed to stop screaming and crying because it would not make any difference. . . .”

Welcome to Martin’s world. This excerpt from a letter Donna Harnett sent out in August about the latest emergency in the life of her 11-year-old son concludes with a plea for our prayers, and that seems an appropriate place to start, but the prayer I would suggest is not one of despair or desperation, but gratitude: Thank you, Martin, for what you are giving us, for the beautiful, triumphant struggle that is your life.

Martin’s story as I have come to learn it is far bigger than mere tragedy, at least the “isn’t it a shame?” variety of tragedy that allows us to shake our heads, shrug and, finally, look away. There’s no reason to look away from Martin, whose extraordinary array of medical conditions — cerebral palsy, micro-encephalitis, laryngomalacia (floppy windpipe), blindness — stem from a birth accident (his umbilical cord was wrapped around his neck) that resulted in the loss of three-quarters of his brain. He’s wheelchair-bound, cannot speak or care for himself and requires 24-hour nursing (or parental) care and a trachea tube in order to breathe.

But he also laughs, smiles, waves, has a great sense of humor, exudes love, goes to school — yes, goes to special-ed classes at the neighborhood school across the street from his family’s house in Chicago — and is, so his mother and stepfather insist, a powerful teacher. “We all have this feeling Martin’s really here at this point for a reason,” said Donna. “He’s here to teach us some stuff. Things like compassion.

“At the beginning of the school year,” she said, “I always offer to come in and say a few words about Martin.” What she says is simplicity itself, but Martin’s presence makes her words real: “We all come in different shapes and sizes, but deep down inside we’re all the same. Martin is a little boy. He’s more like you than different.”

The kids get it. Martin’s quietly compelling presence slows them down, brings out a thoughtfulness and tolerance — calls out, you might say, to their higher natures. One little girl with a reading disability began exceeding reading-proficiency expectations after Martin became her classmate. She began learning to read, said Donna, so she could read to Martin.

Martin’s vital connection to family and school could easily not exist at all. He is able to go to school — able, indeed, to live with his family, with people who love him, where every day of his life he defies medical prognosis — only because Donna and her longtime companion, Jeff Dick, insist on it and expend their energy not just caring for him but advocating tirelessly for his right to live at home rather than in an institution.

“There’s lots of state funding for warehousing people but very little invested in at-home care,” said Donna, her anger building. “The bottom line is that my son has the right to live at home, by the sheer fact that he’s a little boy. My son has the right to live at home and die at home.”

Advocating for Martin’s rights, and beyond Martin for the rights of all the disabled, has become not merely Donna’s passion but the organizing principle of her life. This mother of four — Martin has three younger brothers — somehow managed to go to law school, graduating last January. In the process, she did an externship in school disability law.

“My basic philosophy is not to take no for an answer,” she said of her ongoing struggle to secure scraps of funding on Martin’s behalf. “Taking no allows the system to go on. If I get a yes, they’ve broken the rule, and we’ve made a breakthrough. The system starts to change.”

She adds, “This is a civil rights movement.”

And her home state just happens to be one of the worst in the country in terms of providing funding for at-home care, which is why members of the outspoken disability-rights organization ADAPT converged on Chicago this week for five days of “protest against Illinois systems that starve people with disabilities . . . of their rights and their independence.” Donna was with them, of course.

Her militancy is fueled, no doubt, by a sense of urgency. Martin almost bled to death a month ago while his family was picnicking in a forest preserve near Chicago. His trachea tube had rubbed a hole through his windpipe and an artery, but he survived, not for the first time, thanks to medical heroism, his own will to live and maybe a spare miracle or two. Twice in the past, Donna said, Martin has “literally died — no heartbeat, no respiration. Gone, gone, gone.” But he came back. You can learn more, and see additional photos of Martin, at the family’s website.

For now, I return to my urgent prayer of gratitude and hope, for a fragile, loving child who, like all of us, has a right to live at home, and who quietly deepens our humanity as we look into his eyes and understand it.