Unique Challenges, Happy Surprises
Back at home, Terri and Brad say they don't even think of Sachi's HIV on a daily basis. Parenting her isn't different than parenting any other child, aside from giving the medications, which has evolved from a challenging and disconcerting ritual to a seamless routine. What can be trying: explaining their daughter's status to the rest of the world. "It's really amazing because nobody knows about the advances in treatment," Terri says. "Everyone is just as ignorant as we were." Responses range from heartfelt concern about Terri and Brad's bringing home a "terminally ill" child and the suffering that would surely ensue to a more selfish fear of contracting the disease themselves.
Sadly, a few people have dropped out of their lives; most, though, have welcomed Sachi into their hearts and homes with open arms. "When you start this," Terri says of HIV adoption, "right away you realize there are people who aren't going to understand or will be angry. It was really, really sad [that some friendships faded], but it didn't make me stop and think, 'Am I going to trade off my daughter for this person's peace of mind?' I knew we had to do what we had to do, everyone else be damned."
Disclosing a child's disease status is one of the most pressing issues HIV adoptive parents will face. In terms of disclosure laws, each state differs, but regardless of Illinois's requirements, Terri and Brad have decided they will alert Sachi's school of her HIV when the time comes for her to enroll. "My husband and I feel like if we decide to maintain secrecy about her condition, then we'll be fueling the stigma, which causes a lot of emotional pain," Terri says. "We've decided to be really up front about it with anybody we have close contact with. I wouldn't broadcast her HIV status to people in a park where she's playing, but if I were to enroll her in preschool, I would talk to the director about whether they should let other parents know." (In a daycare facility or school that takes universal precautions—guidelines requiring the use of gloves or other protective barriers when touching someone's blood or other bodily fluids—the transmission risk is greatly reduced.)
On the horizon, the challenge of adolescence looms large. In addition to the potential social stigma of being a teen with HIV, the birds-and-bees discussions in these families will likely be more in-depth and serious than those occurring in the homes around them. Compliance with medication is another concern, as parents Lori and Greg Anderson of Newton, KS, found. The couple has adopted two daughters with HIV, Kalli, 8, and Nikki, 15. Their older daughter went through a rebellious stage recently where she didn't want to take her medicine. But this insidious disease preys on missed doses, and if adherence is not as close to 100 percent as possible, the HIV virus can become resistant, rendering entire classes of medications ineffective.
Lori Anderson brushes aside the notion that parents who adopt a child with HIV are doing something extraordinary. "We're just everyday people," she promises. "I fully intend these girls will go to college, get married, live their own lives." By empowering her daughters to look after their health, Anderson is sure, "I'll be bouncing grandkids on my knee one day, and they'll be HIV negative because their moms are taking care of themselves." (In the U.S., mother-to-baby transmission of HIV can be prevented 99 percent of the time.)
Terri and Brad also encourage other families contemplating adoption to consider their less-traveled route. "Years ago, if an agency had called and said, 'We have an HIV-positive child,' I might have said no out of total ignorance," Terri admits. "But if somebody like me had told me their story, I probably would have considered this."
For this family, out of those tearful, soul-wrenching first nights following Sachi's diagnosis, a unique and beautiful sense of hope has blossomed. And when their little girl finally took her first steps and uttered her first word—"Mama"—Terri and Brad were over the moon, as any parents would be. "We know she's going to reach her potential," Terri joyfully proclaims, "and it will be as good as anybody else's."
Chicago-based writer Leslie Goldman is the author of Locker Room Diaries.