STORIES

In the late 1980s and early 90s, I volunteered with an organization that placed volunteers in hospitals and group homes to work with children with HIV/AIDS.

I met Aaron when he was 9 months old and cared for him until he died at the age of 18 months. This photograph was taken on his first and only birthday.

The women who were full-time caregivers at the home used to call me Aaron’s father because of our bond. Both his parents had already died. The women used to say he seemed jealous if he saw me holding another child.

Aaron was very sick. His lungs filled constantly with mucus. I was often asked to gently pat him on the back while he was given medication through a nebulizer. I could tell how much stress it caused his tiny body. Seeing him suffer was not easy.

When I spoke, Aaron would put his little hand against my jaw as if he was feeling the words as they formed in my mouth. On his first birthday, I brought him some presents and we had a little party on the ward. He was healthier than he had ever been before. He didn’t need to remain attached to tubes. I was told I could take him up to the rooftop garden.

I walked Aaron around the garden, holding him like I am in this photo. Just him and I, alone outside under a beautiful blue sky. An airplane flew overhead and he looked up. I told him about airplanes. I showed him flowers, rubbed them against his cheek so he could feel them. I just kept talking to him. He held my jaw as I spoke the entire time, feeling the words as they formed.

When Aaron died months later, the women at the home told me that was the only day of his life that he went outside other than for trips to the hospital.

Aaron was moved to a hospital for his last few days and placed in an oxygen tent. I went every day after work. While I was not present when he died late one night, I leaned in under the tent whenever I was there and never stopped talking to him.

Aaron was one of the reasons that I joined ACT UP. His memory fueled my activism. We lost so much in this epidemic. So much suffering. So much death of those far too young to die.