Martin's World

[Traveling_Home]

(From ADADT.org maiing list)

Martin's World

Posted September 13, 2007 | 02:24 PM (EST)

"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 photos of Martin,
at his 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.

- - -

Robert Koehler, an award-winning, Chicago-based journalist, is an editor at
Tribune Media Services and nationally syndicated writer. You can respond to
this column at [email protected] or visit his Web site at
commonwonders.com.

B) 2007 TRIBUNE MEDIA SERVICES, INC.

[angstlessk]

1. WOW, quite moving, I sent the journalist an e-mail thanking for the article

and the hope it might help change rules and regulations regarding the disabled.

[pop goes the weasel]

2. Thanks for this

It's a good reminder of what we fight for--for families to be together, for people to live to their individual fullest potential, for respect, for humanity.