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Recently in Salon Mothers Who Think

Life as a fate worse than death
A lawyer tries to prevent the ultimate abuse of a tiny victim.
By Beth Broeker
[03/30/00]

When the jailhouse is far from home
Kids with parents behind bars share the pain of incarceration.
By Nell Bernstein
[03/29/00]

Swag hags
Mothers, driven by impure decorating motives, should not be allowed in bachelor pads.
By Matthew DeBord
[03/28/00]

When the revolution comes
We asked for grand plans and we got more than a few.

[03/27/00]

Naked to the world
I've been a nude art model for 20 years. But am I brave enough to hang a photograph of me and my daughter in a gallery?
By Pegi Taylor
[03/24/00]

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It's hard for friends to understand why, with the DNR in place, we continue to take Daniel to the hospital when he's sick. To me, that's like asking why someone with a last will and testament continues to go to work every day.

Still, sometimes I watch Daniel sleeping, his long lashes and pale skin, the smell of his hair like no one else's hair. He is a precious child. Do you understand? He is precious, and what we've done is a ghastly failure and a sin.

Also Today Life as a fate worse than death A lawyer tries to prevent the ultimate abuse of a tiny victim. By Beth Broeker

But then he gets sick, we rush him to the hospital, they take him away, they bring him back with the blood only partially wiped off. I've learned how to pick him up without pulling at or pinching the oxygen tubing, the I.V. line or the pulse-ox cable. He lies exhausted in my arms, his head lolling back. I hold him close to my heart and wonder what all of this is for. Is it for him, or is it for me?

The question seems truly hypothetical in light of Daniel's grim prognosis. Still not past even the very first hurdles of infant development, he's like a 31-pound newborn baby. He does not sit up; he does not smile. His disability is so potent that he has few peers and no guideposts. I think of him as our own private E.T.: His thoughts and language are a mystery, but he came to live with us and we do our best to care for him. It's like being entrusted with an endangered species or a rare breed of orchid.

If it were possible for Daniel to reply, I would ask him what he thinks about the needles and the hospital stays. Instead I am guided by his lone measurable personality trait: stubbornness. Wheel him up to a table and he'll clumsily, doggedly reach for a spoon and, if he's lucky, drag it into his lap. We clap and cheer, replace the spoon, and he goes at it again. Straddle a bolster with him and without fail he'll haul up his heavy head, bobbing and dipping. Put him on his stomach and he'll try to crawl, dragging his oxygen line and his punitive plastic leg braces with him. He never gets more than 2 inches, but he never lets that bother him. E.T.? Hothouse flower? Hell no, this kid is a Tonka truck. You cannot stop him.

Who am I to think of stopping him?

None of this is hard proof, of course, of his intentions. And neither is this next thing, though to me it's our best piece of evidence: Daniel is good at not dying. More than once in the ICU and in the special, hushed hospital room for terminal cases, he has confounded expectations. It's not an easy thing to do, and he is a child.

And so I follow this child, humbly.

Meanwhile, I'm exhausted. The DNR, like a petulant suitor, continually requires more and better proof of our fidelity. We refine and explain our wishes against startling new conditions. We must decide over and over again. The young radiologist, for example, who was about to do a lumbar puncture on Daniel, told us that we'd have to rescind the DNR for the duration of the procedure. When we asked why, he gave a little insouciant, teenagerish shrug and said, "Because otherwise we won't do it."

Or the pulmonologist, who wants to do a bronchoscopy to get a sample of the probable bug down in Daniel's lungs. She told us that some patients get in trouble after the procedure and have to be "tubed." So the questions are: Do we even want the bronchoscopy? If we do, do we want to temporarily remove the DNR just for that procedure? If we don't, could we handle it if the procedure "hastened his demise"? It's as if before we were playing rugby and now suddenly we're playing chess.

My husband does not want Daniel intubated under any circumstances. He is strong and brave. I am bad at chess and am moving sideways and crablike, on delicate pincers, into dreams and messages. I close my eyes and ask Daniel if he has pain; I see a swelling red heart and a blue cloak falling over it. I ask if he wants to take his leave of us; I see a woman looking back at a child running out from under her outstretched arm. I cannot analyze these things with my customary tools, so I wait for inspiration and sustenance.

What I get is church-basement casseroles and unwashed laundry, which are actually quite sustaining, if not inspiring.

The no-nonsense psychologist whom I talk to more and more these days says Daniel will let us know when he's ready to give up. So far Daniel hasn't once let us know when he's cold, or full, or unhappy, so I accept this with trepidation and longing. I accept it, though I'm scared to death I'll miss his signal in the haze of tubes and beeping machines. I accept it because I've already made the decisions I'm allowed to make. Daniel himself will have to make the next one.
salon.com | March 30, 2000

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