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I suddenly felt a warm squishy hand in mine as I walked up the dirt road leading to the Catholic parish on the hill. An image of Sumit flashed into my mind: I remembered marching proudly around the hospital compound in India with his little hand clasped in mine. I remembered how he used to say “pyano” screwing up his face, jutting his fingers out in the air and wiggling them whenever he saw me. I remembered the smile that used to spread across his steroid-bloated full moon face when I would said “yes, piano”. Then I remembered with a shock of pain that Sumit has died. These memories flashed before my eyes in the few seconds it took me turn my head and find the body to which the little hand belonged. It was a young boy, shaved head, big round tummy, floppy arms, and the characteristic eyes of syndrome. I looked into these big round eyes– little globes that at first glance appeared dull but upon closer inspection I could see a world of expression.

He tugged my hand in his chubby floppy one over to his chest right above his heart. “waboucheri” I said. “it is OK” he replied in a small gruff voice. We walked on. I felt compelled to sing the song that I used to sing with Sumit when we walked: “Chanda mama durikee, pooh apa gya orikee, apa kya thali mae, moonakededo pyalimae”. My young friend looked ahead with determination as I sang. In this moment I felt closest to Sumit since his death. Tears came to my eyes because I was really feeling, which is something that has been difficult for me to do so far from the places where these tragedies have unfolded. What is your name, I asked. “It’s OK,” he said. I tried something else. I pointed to my chest and said: “Bira Daniela” (“Bira” means second born daughter in Lukonzo). “Wambali Joel,” he said seriously. We walked on in silence for some time. He offered me a gift of the last Mandasi crumb (he had been eating this pastry and wanted me to have the last bite). I took it, not wanting to eat the soggy little morsel but knowing I had to. After I had finished it and thanked Wambali, I to surprise him with something, so I whistled my special bird wobble call. It had the effect I was hoping for: Wambali looked around wildly, searching the sky, trees, and cassava plantations lining the road. I did it again. This time he located it and looked straight up into my face. He smiled. Such a sweet, kind smile.

That afternoon Wambali took me to his village and introduced me to his teachers, neighbors, and relatives. He led me door-to-door by the hand. Everyone smiled warmly and greeted us in Lukonzo. Having learned basic greetings in Lukonzo, I was happy to share these with Wambali’s community, especially seeing their surprise and excitement. Wambali pointed to a short stool outside his house, indicating for me to sit down. I sat and greeted his mother, offering her the banana that I had been carrying in my free hand. Wambali’s mother, who spoke some English explained to me that she had 7 children. I asked her if Wambali could come along with me up the hill to Nsenyi school at the catholic parish.

When Wambali and I arrived we could hear drums beating and children singing in unison. We quickened our pace, excited to find out what was going on. There was a ring of school children dressed in their Sunday best, dancing to the rhythm of drums beat by an older man, presumably a school teacher. They were singing songs of praise in a mixture of English and Lukonzo. When they noticed me and Wambali standing and staring, they invited us to join them and watch the performance. “You are most welcome,” the head master exclaimed. Wambali had been wearing my sunglasses and I got the impression that the other children didn’t notice he was special. Mostly the school kids were ogling at me. But then when Wambali took off his glasses and spoke in his little gruff voice I noticed a change in how the other children looked at him. At first they recoiled, then giggled, then completely, fully, and lovingly embraced him. I wondered how many syndrome babies are born in these rural communities and how often the children survive and integrate into the community.

Wambali beamed as he watched the school children dance and sing. When it was over Wambali stood up and requested (what the head master translated as) a “specific song of worship but whose name Wambali could not remember”. The school kids obliged by singing another devotional song and the Ugandan National Anthem. After the concert was finished I gave the head master my mobile number and he promised that his students would come down to Kagando hospital to give a performance for the patients.

Wambali put the sun glasses back on his face, stood up, and led me out of the throngs of children back to the main road. This is where we had to part ways. I would go up the mountain and he would go down to his village.