A sister's pain

One of the families of Dwon Madiki has recently dug a hole into me and taken up a new space within me… a space that both aches and loves.

Peke Joel, one of the kids in Dwon Madiki, is 14 years old and in P4 (equivalent to 4th grade). His guardian is Piloya Grace, who is technically his aunt, and recently she invited us to her home with the most enormous spread of Ugandan food I’ve seen yet. While sitting on a mat near her and her mother, Piloya Grace looked at me translating her mother’s words: “She says you are now her daughter and she is your ‘mego’. Not only because you are here, but because the father of Peke Joel passed some time ago and left him alone. His father was her first born. And this one (pointing), her second born. Me, her third born. And her (pointing again), her last born. So she says now you are in the family. For when there was no one to care for Peke Joel, you wrote him letters and sent him to school and now you are here. She says that now you are her first born child.”

I immediately felt so deeply connected to this mother of mine, this family of mine I’d never met.

Yesterday, we went to Piloya Grace’s home again to visit because her 5th child, a newborn girl, is sick. The doctor has diagnosed malaria, pneumonia, and Down Syndrome. Grace told us that when the doctor gave her the diagnosis she could not stop crying in disbelief. As she told us she tried to breastfeed her baby, but she could not keep the milk down and started vomiting on the floor.

I felt I couldn’t do anything even remotely worthy for her in that moment. All I could think was to reassure her that there are parents in the United States who have many children. Then all of the sudden they have a child with Down syndrome and don’t exactly understand why. I told her that these parents struggle and work extra hard but that with that work and love and support, the child can learn and graduate from Primary school and even Secondary school. Her eyes showed surprise in response to the glimpse of hope, but her situation is still the same.

I couldn’t show her my pain, but the minute I left her home my chest was pulsing and my tears were connected to a place in me that held a hurt too infinite for it to fit inside my body.

I thought of Piloya Grace-the sister to Peke Joel’s deceased father and realized that now she is my sister, her daughter is my niece, and her pain is closer than I’d ever imagined.

Today, of all days, I had scheduled to observe a teacher her in Gulu Town. She teaches a small group of Special Needs children by using Music Therapy. She says she’s willing to meet with Piloya Grace and me tomorrow at the Dwon Madiki office in Lacor.

By this Sunday I’ll be gone from Gulu. My hope is that at least by connecting these women, Piloya Grace finds that her struggle is not one she needs to face alone.