Nontobeko Hlela with her family.
On Saturday I put my beautiful 12-year-old daughter to rest. There are few more difficult things a person can face than having to watch their child slowly disappear.
Mbali was first diagnosed with leukemia in 2016, at the age of six. He went through the arduous journey of chemotherapy and then maintenance and finally remission. We hoped with all our hearts that she, a little girl with bright, laughing eyes, could now make her life flourish.
At the end of March of last year, we found out that the cancer had returned. Again we went through chemotherapy and radiation. This time he also received a bone marrow transplant through a donation from his sister. She navigated the isolation period better than the doctors expected. At the end of September she was home, weak, but home.
As spring turned to summer, he got stronger and started biking, which gave him so much joy and a sense of freedom. She also started taking horse riding lessons and was back to being cheeky, smiling and cheeky.
In November he was back in remission, we were all very happy and excited to see his strength and spirit return. The holidays from December to January were an especially beautiful time. Mbali loved Christmas and he couldn’t wait to put up the decorations. She seemed well on her way to a full recovery and we began to make preparations for her return to school.
In mid-January he began to feel bad. At first, all the standard indicators showed that she was fine. But at the end of January she went to the hospital, where she got sicker. She succumbed to lung complications caused by graft-versus-host diseaseone of the side effects of the transplant.
The pain of seeing your son suffer and the fear of losing your son are beyond words. As life goes on for others, the world stops turning for you. In this time of pain and fear I learned what it means to be truly carried by a community.
Neighbors took turns bringing food to the house so I wouldn’t have to cook after being in the hospital. Friends who had started out as gym buddies invited me for coffee to talk and distract myself. The parents of the children at my oldest daughter’s school would take her in elevators and take her to water polo training sessions.
Mbali’s school held a fundraiser with cakes and sweets to help with medical expenses. A mother from the school, who did not know us, sent funds through the school because the story of my sick son had touched her deeply. My sister-in-law in the US opened a GoFund me account and people from all over the world contributed whatever they could.
Friends came to the hospital when my daughter was admitted to the ICU. Colleagues and acquaintances, natural family and chosen family, sat with me as the doctors kept us apprised of my daughter’s progress, giving her opinion and asking questions she didn’t always think or know how to ask. The doctors and nurses were deeply empathetic.
Since the day my daughter ran away, neighbors who have never set foot in my house before have come with condolences, food and flowers. Some sat down to cry with me and commiserate, sharing their memories of the boy they had seen growing up on the same streets. My friends from the gym set up and decorated the church and the hall where we celebrate the life of Mabli. Now I consider them family.
But while people can surprise us with their kindness, they can also be mean and even vindictive. A few hours after my daughter died, I received an aggressive call telling me that people were not allowed to park on the grass outside my house and demanding to know how many people were coming to her funeral.
As we drove from the church to the cemetery in a small procession of immediate family, some drivers jeered and got in the way, as if a few cars in a funeral procession were some kind of outrage.
I loved Mabli with all my heart. I really feel like she was my heart. I have no words for the pain that has engulfed me and her sister Nandi. All I wanted was to have my own little family, love my two beautiful children and watch them grow.
I have been told that time makes this duel easier. I don’t know if that’s true. I lost my older brother 10 years ago this year and some days he still feels like it happened yesterday. Knowing that I will never feel Mbali’s little arms around me again, hearing her laugh, hearing her say “ncin…ncin…nci…this woman” as she teases me for being clumsy, it’s like being on the edge of a cliff and realize that you are going to fall.
But I know I won’t have to be alone on that cliff, dizzy above all the pain swirling below. Nandi and I have the support of colleagues, neighbors, friends and family. We are not alone in our most difficult moments. With your help, I hope we can get through the months and years to come.
Moments like this burn everything that is petty and unimportant. We see what matters. One of the things that really matters is that a lot of us are really decent people. In the ordinary affairs of our lives, we don’t always realize that many of the people around us are so nice.
It’s easy to get swept up in the emotional whirlwind of everything that’s wrong with our country, with all the people who are conniving and malicious, and forget that most of us are really decent people, people who can be extraordinarily generous and kind. . When I lost my daughter, love enveloped me, ubuntu, love without color.
Like most parents, I was afraid of what the future might hold for my daughters as our country plunged into a worsening crisis. I am still worried about Nandi’s future. But having seen the kindness and decency of ordinary South Africans, I believe there is hope for a better future if we can root our way forward in that decency.
Nontobeka Hlela works for Tricontinental: Institute for Social Research and is attached to the office of the National Security Adviser as a researcher, she writes in her personal capacity.
Opinions expressed are those of the author and do not necessarily reflect official policy or the position of the mail and guardian.
