A wrinkle of worry is etched across “Ally’s” forehead as she steers her car over to the curb. Turning to face her 8-year old son, “Nick,” she knows that this may be the most important conversation they will ever share.

“Nick, I have a question,” she says softly. “Not to scare you, but I’d just like to know what you’d like done if anything was to happen to me, God forbid. Who would you want to take care of you?” Ally sees the look of confusion on Nick’s face and reaches across the console to pat his hand. “Don’t be scared, honey. I just need to know, would you want to live with your grandma and grandpa or your dad?”

“I’d go with you,” he says.

“But what if I was in heaven, and you couldn’t?” she asks gently.

What comes next nearly tears her heart in two. “I’d go with you,” he repeats. “I’d come build a house next to your grave."

Gulping back a quiet sob, Ally pulls Nick close. “Honey, that’s not an option,” she tells him with a kiss. “Who would you want to stay with? Would it be Daddy or Grandma and Grandpa?”

“I’d go with Grandma,” Nick says after a moment of thought. “I’d want to live with Grandma.”

Nick is still too young to know that this is more than just a hypothetical conversation. It will be a few more years before Ally will have another conversation like this with him, this time to tell him that she is HIV-positive. In a nation that is sometimes uncomfortable initiating a frank dialogue on death, terminally ill parents such as Ally are asking themselves the question that no parent wants to contemplate: “Who will take care of my child when I’m gone?” They are then taking the critical steps necessary to ensure that the legal system understands and hopefully will honor their wishes when they’re gone. In finding answers, these parents are giving their children what may be the most important gift next to the miracle of life itself: security in the event of the parent’s death.

Historically, states have offered limited options for parents in Ally’s situation. They can opt to designate a legal guardian in their wills, or they can transfer parental rights through an adoption or guardianship prior to their death. However, in recent years, the legal issues surrounding a custodial parent’s right to choose a future caregiver have become more complex. Medical advances have prolonged the lives of many living with terminal illnesses, especially those infected with HIV. New antiretroviral drug therapies have given new hope to single mothers like Ally. However, their uncertain life spans, punctuated by intermittent periods of sickness and good health, have complicated traditional legal arrangements that determine who will take custody of the children and when.

These developments have led to the emergence of a new permanency planning tool known as a “standby guardianship.” Standby guardianship laws allow custodial parents to make future care plans that don’t take effect until circumstances require. While statutory specifics vary from state to state, the intent of these laws is to enable parents to grant temporary custody to a person of their choosing when they become seriously ill. In other words, the custodial parent is putting the chosen guardian on “standby.” In the event they recover, custody reverts to the parent. If they die, custody passes to the predetermined guardian with court approval.

“During periods of hospitalization, parents may need someone to legally take care of their kids while maintaining a way to transfer legal rights back to them should they get well,” says John Krall, a policy analyst with the National Abandoned Infants Assistance Resource Center (NAIARC) housed at the University of California at Berkeley. “There are concerns that a parent’s will is sometimes not honored by the courts. The idea here is that a parent can go to court in advance to explain to a judge the reasoning behind a decision and get a standing order issued as to who will assume custody when the time comes.”

Ally wanted to make sure there was no ambiguity about who would care for Nick if her HIV develops into full-blown AIDS. She felt it was important for a judge to know that Nick’s father has been absent from his son’s life since the court awarded her sole custody in the divorce. “I’ve worked very hard to get my son where he is, and I know that my ex-husband isn’t capable of raising him when I’m gone,” she says.

NEXT: Planning Ahead >>