Their motto tells the story: "ACTUAL Speaks for Those Who Have No Voice: The Children."
It is a voice for children with AIDS, whose medical, social, developmental, and psychological needs can overwhelm physicians, nurses, and social service professionals--and crush the mothers, fathers, foster parents, and family members who care for them. Yet, the course of the children's treatment, the entire fabric of their lives, may depend on these caretakers.
So ACTUAL also speaks for the caretakers of children with AIDS--many of whom volunteer to carry this load; some of whom are fighting AIDS themselves; most of whom are simultaneously fighting poverty; and all of whom have questions, fears, and special needs.
How do I tell the school about her infection?
Do I tell the school?
I'm all alone with her and she's so sick. I stand and just watch to make sure she's breathing. How can I go on?
How do you tell a nine-year-old he's going to die soon?
She's terrified of surgery. We don't know long she'll live; we don't know if the surgery will be effective. What do we do?
ACTUAL volunteers, like Hilda and Connie Fernandes, can help with many of the answers. Together, they raised Connie's AIDS-infected daughter, Christie. They held her in their arms when she died at home at age 10 last December 22. Now they do peer counseling for other caretakers, lobby legislators, plan activities for AIDS children who are patients of Downstate's programs, and contribute to the ACTUAL newsletter, which is chock full of advice and information.
"What Christie taught me should not be wasted," Hilda says. "And what she taught me is love, understanding."
ACTUAL, an acronym for AIDS Children Teaching Us About Love, was founded in 1987 by a grandmother, mother, and foster mother of children with AIDS who were enrolled in Downstate's Learning Center. At the time, says ACTUAL's director Dr. Chantal Bruchez-Hall, families sometimes had to come to the hospital to feed their children because some staff members were terrified of dealing with the disease. ACTUAL's first job was to educate hospital staff and legislators and to fight for services for HIV-positive children and their families.
Those days may be over, but myriad other needs still must be met.
One day may find Hilda and Connie in Washington, lobbying for more AIDS funds. On another day, Vicki* may demonstrate with Mothers March Against AIDS. Albertine* may provide medical information over the phone or lend a soft shoulder to absorb the tears, the fears, the shock. And Nicole Guide, a former substance abuser and herself infected, may be out at a junior high school teaching, reading from her poetry, and dramatizing the dangers of substance abuse and its relationship to HIV.
The volunteers meet weekly at Downstate with Dr. Bruchez-Hall to plan their activities and work toward the three ACTUAL goals: education, peer support, and advocacy.
Dr. Bruchez-Hall, an assistant professor of psychiatry, devotes about a quarter of her time to ACTUAL. The rest of the work--from planning outings to peer counseling, producing the newsletter, and answering phone queries--is done by ACTUAL volunteers.
Dr. Bruchez-Hall expresses concern for the future of ACTUAL when an Aaron Diamond grant runs out. "We need funds for stipends and to pay transportation and child care," she says. "And I would like to hire a part-time worker to develop an advocacy network in hospitals and community organizations and pay one of our current volunteers to do outreach to caretakers.
"Together, they could reach families of HIV-positive children that social workers cannot. It's different to talk to someone who knows firsthand what it is like to wake up in the middle of the night with a sick child, wait for a T-cell count, or worry if their daughter will ever come home from the hospital."
ACTUAL volunteers are used to uncertain futures, so they just keep working with caregivers and each other. At a recent meeting, Albertine, an active volunteer, explained her dedication to the group:
"When you see these mothers and these babies, when you see the hurt, that alone can make you want to share, to give them a little. Once they see or hear someone who's actually lived it, they see there's a way--a way to let the children live the day and make it full. They see there's light out there."
* Names changed to protect anonymity.
I sometimes remember
that mosquito's bed
and wonder how did I get from there to here
for I could not have done it on my own
I know I had help
Sometimes I think help did it all
For all that's been said
I would've still been
in the mosquito's bed
From the Collected Poems of Nicole Guide