There is a boy here named Omari. He is 9 and AIDS has ripped through his house like a rusty knife, killing most of the middle generation and leaving just the very young and the very old. He is HIV+. He lives with his great grandmother, small sister, and great uncle who has leprosy. These days his "little mother" (maternal aunt), cousin and infant twins live there too. A little mother IS your mother, especially if your birth mother is dead.
Back when our work was new to us, Caito and I maintained lots of boundaries and we only helped kids under three years of age. But each time we visited one of our little girls, we saw that her brother Omari had cotton in his ears. His great grandma told me that they’d given him ‘local’ medicine, but I just couldn’t bear looking at him with this problem anymore. I took him to several doctors, but it wouldn’t clear. Finally, an HIV test told us why the ear infection was so persistent.
Our counselor Elice was alive then and she talked to Omari’s family. AntiRetroviral Therapy (ART) was available, did they want it? Did they understand how important it was to keep to the regimen? Yes, yes. We got him started on the life saving drugs and watched him closely for a week or two. We figured that, like other people we helped, he and his family would cling to the lifeline we had thrown and adhere to the daily med schedule. We stopped the daily visits, happy that he was getting what he needed. We came back after two weeks and were horrified to learn that he had missed a lot. I cried.
Some people who get very very sick from AIDS related illness, get on ART and when they regain weight and power, think that they are "cured"- so they stop taking the medicine and their body becomes resistant to it if they start again. Then their health takes one last speeding nosedive before they die. I imagined Omari, wasted and skinny, dying like those people. It seemed to me a fate worse than "normal" death by AIDS- to have had the second chance at a normal life and blown it. Being a martyr type, I knew this had to be my fault so I vowed to repent. I went to his little mama as she lay in bed with a hurt leg BEGGING her to watch over Omari and reminding her of how important the medicine was, how he would die without it. Then my husband and I began a daily ritual. EVERY night we went to make sure that Omari took his evening dose and count pills to see if he took his morning dose. I would panic if we had to miss a day even if we warned them ahead of time. I was convinced it was futile, that resistance to the drugs had happened, but guilt drove me.
Months went by and we visited him daily, spending gallons of gas and hours of time. His health was awful- his ear infection never went away for more than a week, and he coughed a lot, but he was maintaining weight and going to school. Then, some excellent volunteers took over, visiting daily. After the volunteers, Caito and I resumed for a little while, but Omari seemed like he was in a groove. We were very overworked at the time and all of the hovering we were doing felt wrong. We felt that it was time to graduate him. We pulled back, talked to the family and reminded them of the importance of the meds.
From time to time we stopped by, but it was all verbal " are you taking your meds?" Always we got nods and yeses. We believed them. Strangely, Omari started to glow. Truly, one day I was amazed at how vibrant he looked. He talked more and had grown. Often he had no cotton in his ears. In May we went to remind him of his appointment. Caito and I agreed that we had never seen him look so good. We thought that meant that he was on top of his medicine regimen. I even wrote to the American nurse who had initially tested him to say that maybe us pulling back was exactly what he needed.
June, a week after his appointment date, Caito remembered that we had not reminded Omari to go to the clinic. PANIC. Not only had n o one taken him, but they had sent him away for the city on his school holiday. His "little mama" assured Caito that he had taken his medicines with him, which I later learned was not true. We insisted that Omari be brought back immediately. I told his grandfather that he could die without the drugs. They wanted bus fare for the inconvenience. Omari got the drugs and went back to the city for his vacation, far out of our range for a month.
So now I am left trying to find the lesson. Part of me says, that me must take responsibility for our action and inaction. We screwed up, own up to it! If you don’t, it could happen again. We were too busy and should have known better from the first time that his caretaker just wasn’t responsible enough.
The other part of me forgives and says that it is not our job to lead the ""horses"" or people to water and sit there all the time forcing them to drink. We, and the doctors, taught the family all we could, and reminded them. We thought that they understood. Outreach is about teaching people to do things for themselves and their children.
The truth I think, lies somewhere in between. Despite our good intentions, we let down Omari as much his little mama did. As terrifying as it sounds to me, we had to learn a lesson on a 9 year old boy’s life. The relieving coda to this story is that if and when Omari does show signs of resistance, there is now a second line drug available in the city that we can get for him. It will not be easy, but he will get yet another chance, and we will make sure of it.