Jordan & Evelyn’s Story
From Shame to Strength
“Since I became close to my child, and started loving and accepting him, I gained peace in my heart.” – Evelyn, mother to Jordan
“I gave birth to Jordan on 31st January 2022, stayed with him at my parents’ home, then, after a while, they asked me to bring the child back to his father’s place. He was around 5 months of age, but he was not able to do many developmental activities, for example, we tried to sit him down, but his head and legs would meet in one position. His father kept wondering why his son was like that, so we decided to try traditional ways.” She and Jordan’s father visited traditional healers, who told them that Jordan would get better soon. “We stayed home and watched him, but what was a week became a month…”
Experiences of stigma
Jordan’s condition worsened, and at seven months old Evelyn says, “his family chased me, saying they don’t give birth to children like him in their family.” She recalls: “My husband and my mother-in-law… threw my belongings outside. He was my firstborn, but his father had other children, and he said, ‘I don’t give birth to such children'” They said “Go away with your family’s bad omens, get your family curses out of my son’s home, and allow him to live a peaceful life. “Later, when Jordan urgently needed a blood transfusion, Evelyn called his family for help. “They asked if the child was sick, and I said yes. They replied and said hurtful things about him, and I cry each time I remember it.”
The power of acceptance
Evelyn kept looking for answers on her own and met a woman whose own child who had a disability, had died. “She informed me about Baby Ubuntu organization at Kiwoko Hospital, and she told me to spare time and visit their offices.” Evelyn registered Jordan for the programme and shared with the staff there that she felt like abandoning him. She remembers them supporting her “to live in your child’s life and fight his battles”, she says, “So I stood with my child. Since I became close to my child, and started loving and accepting him, I gained peace in my heart… there was a time when I had depression, but after accepting the situation, opportunities started coming my way.”
Becoming an “Expert Mother”
Through Baby Ubuntu, Evelyn learned how to care for Jordan and came to understand, in her words, “that our children are like any other children.” Baby Ubuntu also provided a physiotherapist and medicine for Jordan’s seizures. Evelyn now works for Baby Ubuntu herself, as an Expert Mother, training other parents.
“I train parents on how to handle a child with a disability… As a mother, I got a job without even writing an application; they based it on the experience I had.”
The connections she made with other mothers changed things too. “I found my brothers and sisters. My family members have money but can’t support me, but you can call a fellow mother from the Baby Ubuntu programme and be supported with Ugx 5,000 (£1), and pay it back, because they know that you are a mother having a child with a disability, and he is also in that situation; time will come when he or she will need to be supported by us too. This group has been beneficial to me, it brought peace in my heart, and I become happy each time I see my fellow mothers.”
She says the change is visible in her, too. “Compared to the situation before, I lost weight, and I was very small and pale with depression, but as of now, I feel peace in my heart seeing my child fighting, wanting to speak, sit, or stand.” She calls Jordan her “Member of Parliament.” “That’s the name I call him, and I always tell him that we shall wake up one day when he is a member of parliament, giving testimony of our experience. I do that because I have hopes in him.
When asked what they would say to other parents who are just starting this journey, Evelyn said:
“To the parents having children with developmental disabilities or those with cerebral palsy, love your children; that’s the only message I can give them.”
Evelyn, mother of Jordan, sharing her message about Baby Ubuntu with the world