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Daniel is good at not dying
A mother lives with the disciplined ambivalence of a do-not-resuscitate order.
By Elizabeth Halling
[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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I am here to visit Thomas, who will be 1 year old on Saturday. The steel bars in his crib are decorated with bright helium balloons, and the crib is crowded with stuffed teddy bears, rabbits and Teletubbies, all gifts from his foster family.

Also Today Daniel is good at not dying A mother lives with the disciplined ambivalence of a do-not-resuscitate order. By Elizabeth Halling

Thomas is asleep now, sedated, because he had been awake and crying for nearly 24 hours. He cries constantly when he's awake because his pain is so severe. His internal organs were, as his doctors phrased it, lacerated. The medical report says that the injuries to his abdomen are the kind that usually come from being kicked or punched, or from being in a violent car crash. His skull was fractured, and he suffered a brain injury that left him blind. He was legally dead for a while, but the doctors brought him back. When his parents first learned the extent of his injuries, they decided to take him off life support. He lived.

Thomas has been in and out of the hospital since then. The doctors have said that he will not survive, that each of his systems will begin to fail, one by one, and ultimately he will die. He's back in the hospital today because his kidneys failed last weekend.

I happen to arrive when his parents are visiting, along with the parent aide they are required to bring as a chaperone. I have never met them, and they are confused when I try to explain who I am. I am Thomas' court-appointed special advocate, charged with reporting on his needs and his best interests. Thomas also has a guardian ad litem (GAL), an attorney who handles his legal interests. And he has a Child Protective Services caseworker and a host of doctors: a pediatrician, a nephrologist, a neurologist, an ophthalmologist, a retinologist and an internist.

Thomas' mother and father crowd one side of the crib and I stand on the other side with the parent aide. I watch them and try to read their minds. There are no criminal charges yet in this case, as a result of what I can only describe as a stunning quagmire of police bureaucracy. The case has been bounced back and forth between the homicide and the family violence units because Thomas has been dead, then alive, then expected to die soon. Because the investigation is ongoing, I can't get any information on its status.

The parents offered a story that the doctors have said does not fit Thomas' injuries. But establishing the real story and collecting the necessary evidence are, apparently, complicated and time-consuming. Also, it's not clear who abused Thomas, though his parents are the obvious suspects. There were other people in the home when the ambulance arrived. So while ordinarily, with injuries this severe, there would be an order prohibiting the parents from seeing their child, there isn't one for Thomas.

His parents are leaning over him, stroking his face, touching his legs, examining the tubes snaking around him that are attached to now-permanent holes in his body: a feeding tube in his stomach, an I.V. in his arm and some other tube coming out of his foot. His mother is blinking fast, in that way you do when you're trying not to cry. His father is murmuring: "Thomas, my big boy. You're getting so handsome, little man. You have to get better so you can come home. I love you, baby."

The nurse pulls me aside and tells me again that we really need a DNR on Thomas; a DNR is a do-not-resuscitate order, which is signed by the legal guardian. In this case, the legal guardian is the state. A DNR would mean that if Thomas' heart stopped, or he stopped breathing, his caretakers would be prohibited from intervening to bring him back. Today, Thomas is "full code," which means that if he started to die, the hospital would have to use every intervention possible to keep him alive, including long-term life support.

The nurses have previously told me that once a foster child is on life support, the courts will not remove it. I think this has something to do with pro-life issues and the state's not wanting to be accused of letting a child die, but nobody has told me that.

Thomas' doctors agree that he needs a DNR. His foster mother agrees. His caseworker agrees. His GAL agrees. I agree. Thomas will never recover, never return to health, never experience anything but constant pain or sedation.

The ironic twist in this case is the parents. They have court-appointed lawyers now, who have explained to them that if Thomas dies, they could be charged with murder. Thomas dying would mean not only that their first and only son was dead but that they each might spend 25 years to life in prison. They will fight the court in granting the DNR. They could win.

I let this thought sink in as the nurse is talking. I watch Thomas. His arms and legs are turned in, malformed because the muscles have deteriorated. He breathes heavily, with a gurgling noise, because of the mucus collecting in his throat. His face is relaxed for a minute, and then he winces in his sleep, makes a scritchy whining noise and shifts his body. The nurse is watching him now too. "This -- what you see -- this is his life," she says to me.

Next page | She picks Thomas up and he curls into her like a newborn