Nontobeko Hlela with his family.
On Saturday I laid my beautiful 12-year-old daughter to rest. There are few things more difficult a person can face than having to watch their child slowly.
Mbali was first diagnosed with leukemia in 2016, when he was six years old. He went through a difficult journey of chemotherapy, then treatment and finally remission. We hope with all our hearts, that she, the little girl with the bright laughing eyes, can now live a blooming life.
At the end of March last year, we discovered that the cancer had returned. Again we went through chemotherapy and radiation. This time he also got a bone marrow transplant through a donation from his sister. He sailed through the isolation period better than the doctors expected. At the end of September he was at home, weak, but at home.
As spring turns into summer, he gets stronger and starts riding his bike, which gives him joy and a sense of freedom. She also started riding lessons and became her sassy, smiling, cheeky self again.
In November he was back in remission, we were all happy and excited to see his strength and spirit return. December-January holidays are a wonderful time. Mbali loves Christmas and can’t wait to decorate. He seems to have made a full recovery and we are starting to get him ready to go back to school.
In mid-January he began to feel unwell. At first, all the standard indicators showed that he was fine. But at the end of January he went to the hospital, where he fell ill. He had complications in his lungs caused by graft-versus-host disease, one of the side effects of the transplant.
The pain of seeing your child suffer and the fear of losing your child is unspeakable. When you live for others, the world stops for you. In this time of pain and fear, I learned what it truly means to be brought together by a community.
Neighbors take turns bringing home food so I don’t have to cook after being in the hospital. My friends who started going out just as gym buddies invited me out for coffee to chat and take my mind from it. The parents of the children at my older daughter’s school gave her a lift and took her to a water polo practice session.
Mbali’s school held a cake and candy fundraiser to help with medical expenses. A mother at the school, who did not know us, sent funds through the school because the story of her sick child touched her deeply. My brother-in-law in the US started my GoFund account and people from all over the world are donating whatever they can.
Friends came to the hospital when my son was in the ICU. Colleagues and acquaintances, family of birth and family of choice, sat with me as doctors kept us abreast of my daughter’s progress, gave input and asked questions that I did not always think or know to ask. The doctors and nurses were very empathetic.
Since the day my daughter left, neighbors who have never been to my house have come with condolences, food and flowers. Some sat down to cry with me and commiserate shared memories of the children they saw growing up in the same streets. Gym friends set up and decorated the church and hall where we celebrated Mabli’s life. I now consider them family.
But while people can surprise us with their kindness, people can also be petty and even vengeful. A few hours after my daughter died, I received an aggressive phone call telling me that people can’t park on the grass outside my house and demanding to know how many people would be coming to the funeral.
When we drove from the church to the cemetery in a small procession of the family immediately some drivers hooted and cut in, as if some cars in the funeral procession there was some sort of anger.
I love Mabli with all my heart. I really feel that he is my heart. I have no words for the pain that has enveloped me and my sister Nandi. All I want is to have a little family of my own, love my two beautiful children and watch them grow up.
I was told that this time of grieving is easier. I don’t know if that’s true. I lost my brother 10 years ago this year and some days still seem like yesterday. Knowing that I will never feel Mbali’s hand again, hearing her laugh, hearing her say “nci…nci…nci…this woman” as she teases me into being a klutz, like standing on the edge of a cliff and coming to my senses. which is about to fall.
But I know I don’t have to stand alone on that cliff, dizzy above all the pain below. Nandi and I have the support of our colleagues, neighbors, friends and family. We are not alone in our most difficult times. With your help, I hope we can get through the next month and year.
Moments like this burn up everything small and insignificant. We see what is important. One of the most important things is that most people are genuinely polite. In normal life we don’t always realize that many people around us are very good.
It is easy to get swept up in the emotional turmoil of everything that is wrong with our country, with all the conniving and malicious people, and forget that most of us are decent people, people who can be incredibly generous and kind. . When I lost my daughter, I was enveloped in love, in ubuntu, love without color.
Like most parents, I fear for the future of our girls as our country faces a growing crisis. I am still worried about Nandi’s future. But after seeing the kindness and decency of ordinary South Africans, I think there is hope for a better future if we can move forward with decency.
Nontobeka Hlela works at Tricontinental: Institute for Social Research and is seconded to the office of the National Security Adviser as a Researcher, she writes in a personal capacity.
The views expressed are those of the author and do not necessarily reflect official policy or position Mail & Guardians.