Prepared by God’s hands to serve and protect: A Parent’s Journey
by Kirsten Steenkamp
Entering a new year is usually the time that we think back on the months passed. Deep reflections on our challenges and successes will direct our priorities, goals and inevitably, course correct our next year. But, sometimes life has a different vision for us. And from time to time, our path detours so far off track we may wonder why we’ve been led down this road at all.
Finding significant meaning in the struggle for survival, Sibongile Chanengeta shares with me the journey that transformed her life forever. A moving narrative being told for the first time – a parent’s Story of Hope.
We meet Sibongile Chanengeta in 2004, where her life connects with The Chaeli Campaign for the first time. Sibongile, a Zimbabwean mother from a small town outside Harare, was at home one day and picked up an Edgars magazine to pass the time as she watched over her sleeping child. Turning the page to read about the humble beginnings of the organisation in Cape Town, Sibongile was overcome with emotion. Revealing truths about the earlier years parenting a child with a disability, Sibongile learned about Zelda Mycroft: CEO of the organisation and Chaeli’s mother.
Feeling incredibly moved by Zelda’s resilient spirit and courage, Sibongile says she needed to “praise this woman and the work she’s doing. I didn’t think of myself, I just had to thank and encourage her, tell her she’s a good woman.” Dialling across borders into South Africa that very day, Sibongile made her introduction and began to share her story.
When Sibongile gave birth to her third child, Leona, she could never have predicted the adversity to come. When Leona was two years old, she suddenly stopped walking. Sibongile knew something was wrong, but clinic tests and scans revealed nothing.
Miraculously at the age of 5, Leona began walking again. She went to Grade 1 at a mainstream school and for some time, all seemed to be going well. But, after two years of walking, her health began deteriorating quickly. Her body was becoming smaller and finding explanation became urgent.
Finally collecting enough money to see a private doctor in the city, Sibongile was immediately referred to an orthopaedic specialist. At 11 years old – after 9 years without knowing – Leona was diagnosed with Osteogenesis Imperfecta.
More commonly known as Brittle Bone Disease, this rare condition is caused by insufficient collagen production. Most infants born with severe forms are lucky to survive beyond their child years, succumbing to bone deformities, spinal cord problems, and eventual heart or respiratory failure.
Frightened, Sibongile and her husband, Never, returned home to make sense of their future. What the family did know was that Leona would be loved and treasured for as long as she was alive. But, daily life was hard. Because easily fracturing bones posed enormous health risks to Leona, critical care was required to look after her. Sibongile would wrap thick blankets to place under Leona’s delicate body when she needed to be moved.
Social situations proved most challenging, as people could not see how fragile Leona’s body was. The thought of others bumping into her, even by accident, was too overwhelming to bear. Furthermore, the cultural misperception that disability is an ancestral curse worsened stigma. Avoiding gossip, staring onlookers and accidental injury, Sibongile and Leona resided home most of the time. It was simpler this way.
A nurse doing a home visit one day talked about the need for Leona to socialise with other kids. Afraid to go into the community, yet feeling socially isolated, Sibongile did also want Leona to play outside and be treated the same way as her friends. Slowly, she embraced public life with her differently-abled child and soon found immense comfort engaging other parents of kids with disabilities.
The community conversation that began around disability and stigma expanded when Sibongile make contact with Zelda. Dialogue became centered around inclusion, community support and advocacy for children living with disabilities.
Driven to improve Leona’s accessibility to the world around her, arrangements were made for a wheelchair to be sent to Leona in Chinhoyi, Zimbabwe! When it arrived, Sibongile shares that Leona could be moved around so much easier. Leona was so thrilled, in fact, she exclaimed she was “healed”.
A wheelchair transformed the way in which Leona accessed the world. She could now enjoy going outside, have sibling time with less fear of injury, and for the first time in more than 4 years, Leona returned to school.
Two years after the first phone call to Zelda, The Chaeli Campaign invited Sibongile, Never and Leona to attend a conference in Cape Town. After an arduous journey to South Africa, Zelda and Sibongile officially met in person – and so too did Chaeli and Leona!
Regrettably, the years that passed continued to bring uncertainty and grief for Sibongile and her family. Bouts of illness were met with Leona’s search for identity and an unavoidable dread for the future.
During an extended stay at the hospital one year, disease and suffering came to be inescapable. Thankful nonetheless, but the only parent allowed to accompany their child in the room, Sibongile spent the following nights watching over a ward of gravely ill kids, none older than Leona.
Without curtains protecting the privacy of those who mercilessly lay sick and dying, Leona and Sibongile witnessed the final breaths of several children during their stay – some who were Leona’s friends from school. Sitting helplessly beside her own sick child, Sibongile silently mourned the loss of these young souls.
Sibongile and her daughter returned to the comfort of their own home a few days later, grateful for Leona’s fitness for discharge. Though Leona was still struggling to breathe, she expressed joy at being reunited with her siblings and her dad. And over the next two days, Leona seemed to regain some strength and health.
One afternoon, disturbingly, Sibongile returned from the kitchen to find Leona using a spoon to try to continuously stab herself. Urgently asking what was the matter, her sweet daughter’s response would break Sibongile’s heart: “I want to die mama, the pain is unbearable.”
Understanding the physical pain that consumed Leona constantly, there was little Sibongile could do to relieve her daughter’s suffering…
Resting in the lounge with her family the next evening, Sibongile quietly stepped out of the room to prepare tea in the kitchen. But, like the last incident, she returned to find another very unusual situation. This time Leona had messed herself. Asking Leona why she didn’t ask for help sooner, her 6 year-old brother said she had just waved to him, as if she were greeting him. With no response from Leona, Sibongile drew closer to ask what happened. But, there was still no reply. Leona was already gone.
In the days and weeks that passed, it felt as if Sibongile’s world was over. And for a time, it was.. As though she had lost her right hand – as though she were no longer human – Sibongile was destroyed.
Finding the strength only to call Zelda to share her tragedy, Sibongile fell into a depression. She had been changed forever – by passion and purpose – to care for a child with a disability, but now she had no one to whom she could give her love.
Over the months that followed, Sibongile would mourn the loss of a child so deeply loved: her young, beautiful 14 year-old Leona.
Feeling like she was leaving her daughter behind, but needing to start a new life, Sibongile and her family moved to Soshanguve, Gauteng. Realising the strong call that “it must not end here” and that she has “life to live”, Zelda guided her to fulfil her new purpose.
Unable to speak the local language of her new community, but offering care and expertise, Sibongile began searching for disabled kids to support. Walking door-to-door, she simply asked if there was a disabled child living there or if they could point her to a family who needed disability care. Locals welcomed Sibongile to find what she was looking for; and after some weeks, Sibongile formed connections with more than 40 kids and adults with disabilities needing her counsel.
Today and for the last 13 years, Sibongile has been working as part of The Chaeli Campaign family. The jobs that have kept her busy and inspired are arts and crafts workshops with adults with disabilities, regular home visits and facilitating a youth social entrepreneurship programme in Soshanguve.
The reality is that disability is a deeply misunderstood experience and Sibongile says too many kids face being unwanted and rejected by their own mothers. Knowing the serious impact of her home visits, she says her job is to help parents accept and embrace their disabled child. Helping the family adapt to the needs of their child, she places emphasis on their inclusion in the home, school and community!
Since Leona’s death, Sibongile’s enormous capacity to love has spilled over into the lives of so many kids to whom she has become ‘mother’. Regularly, Sibongile receives calls from parents asking her to comfort their crying child. Saying their child wants to talk to her, Sibongile aims to help parents make their children feel seen, wanted and loved.
While walking around the community with her group of disabled adult crafters, she also inspires curiosity and conversation. Urging community members to stop, chat and ask questions, Sibongile hopes that the public will get to know the minds and hearts behind the bodies!
Sibongile is now known around Soshanguve, educating and helping her community come to understand and care for people with disabilities. It is clear that Sibongile believes in love, saying that “love is greater than anything else in the world. These are our children – the gifts that God gives us, we need to take care of them”.
The lives of disabled people are as precious and worthy as everyone else. And it is my only hope – through learning about Leona and Sibongile’s life story – that you are inspired to be kind and mindful in your encounters with others.
A family photo showing Leona in her new wheelchair. In loving memory of Leona Chanengeta (1993 – 2007).