Stories for World AIDS Day: Behind the Numbers

The statistics about HIV are always so overwhelming. Almost 2 million people dying from HIV each year. 16 million children who have been orphaned by HIV. 2.3 million children living with HIV right now.

I'm sitting in a room in Kenya with a metal roof and simple brick walls. A group of mothers and grandmothers and other adults who care for children with HIV have gathered in a circle to share their stories about what it means to talk about HIV infections with their children. For these families, HIV is not a number, it is not a distant problem; HIV is a constant presence in their family, shaping who is in their household and how they face the future.

In those 2 million deaths each year are the losses of loved one - the parents of children, the sons and daughters of an entire generation:

"My granddaughter, Mary, lived with her parents until they both passed away. After their demise, I took custody of their three children. They were ailing and sick on and off, so I would frequently go to a private hospital, even twice in a month. Finally, I was referred to an AMPATH clinic where samples of their blood were taken, and I was told to return after two weeks for the results. Those two weeks passed very slowly. Finally, I went back for the results. This granddaughter is the only one who tested positive, and she was put on medication. It is difficult to continue with these medicines, but every time I look at Mary's face, I see the face of my daughter who was lost to this HIV. And so every day, I try to find strength for her and we keep going with the medicines."

Among those 2.3 million children living with HIV is Edgar. Edgar is in 4th grade, and he does not yet know that he is living with an HIV infection in his blood. He's starting to ask questions, though, about the things he hears in school and why he has to take these medicines every day. His mom is here today, and Edgar's mother tells a story about Edgar's questions and how she is starting to let him know he has HIV.

"My son Edgar is in class four. When he developed rashes all over his body [a common problem for HIV-infected children], he came and told me, "Mum, my friends in school said it seems I was born with HIV because these rashes is a symptom of HIV. Mum, tell me if these are symptoms of HIV or what is it?"

I asked him what he would do if it was true, if he had HIV. He said he would not do anything but continue with his medication. He then asked whether I was giving him the medication due to the rashes, and then I said yes. I think he is not afraid; I think he will accept his status. Even if he grows older, he will understand why he developed the rashes."

There is nodding throughout the room. These parents and grandparents understand what a big challenge it is to tell a child that they have HIV, and they also understand what it means in this culture to talk about a difficult issue indirectly, to do it "slowly by slowly". Many of them, too, would tell their child just part of the story and then let them piece together what this means.

Because of my focus on trying to figure out how we can help families disclose HIV status to children, I continue to gather these stories. And so I hear more about what it means to walk through this process for another one of the world's 2.3 million HIV-infected children. One grandfather tells the story of his grandson, Robert:

"When my grandson learned he had HIV, he was around 12. And he stood there and said, "I don't love myself." That showed me that he was capable of doing anything, even hurting himself. I became closer to him at that time because his father distanced himself from Robert. It has been a task for me to try and calm him down. At times, we eat from the same plate because I want to build the confidence in him and do away with fear. I want him to know that people are not afraid of him, that he can share a plate with others and that they will love him and not be afraid. It has not been very easy for me, but I thank God because Robert has accepted his diagnosis, and his health has improved. He is doing well."

As we look to World AIDS Day tomorrow, as we face these gigantic numbers, I ask you to remember the stories. To remember Mary, who was orphaned by this virus that infects her blood as well. To remember Edgar, who asks questions and is piecing together what it means to be taking these medicines. To remember Robert, who struggles to love himself despite his grandfather's best efforts.


Posted at 05:19


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