Nontobeko Hlela with her family.
On Saturday I laid my beautiful 12-year-old daughter to rest. There are few harder things that a person can face than to have to watch their child slowly slip away.
Mbali was first diagnosed with leukaemia in 2016, at the age of six. She went through the arduous journey of chemotherapy and then on to maintenance and, finally, into remission. We hoped with all our hearts that she, a little girl with shining laughing eyes, would now be able to have her life come to blossom.
At the end of March last year, we found that the cancer was back. Again we went through chemotherapy and radiation. This time she also got a bone marrow transplant via a donation from her sister. She sailed through the isolation period doing better than the doctors expected. By the end of September she was home, weak, but at home.
As spring turned to summer she grew stronger and started riding her bike, something that gave her such joy and a sense of freedom. She also started horse riding lessons and became her sassy, smiling, cheeky self again.
In November she was back in remission, we were all so happy and excited to see her strength and spirit return. The December-January holiday was an especially beautiful time. Mbali loved Christmas and couldn’t wait to put up the decorations. She seemed to be well on her way to a full recovery and we started making preparations for her to return to school.
In the middle of January she started feeling poorly. At first, all the standard indicators showed that she was alright. But at the end of January she went to hospital, where she got sicker. She succumbed to complications in the lungs caused by graft-versus-host disease, one of the side effects of the transplant.
The pain of seeing your child suffer and the dread of fearing that you may lose your child, 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 truly be carried by a community.
Neighbours took turns to bring food to the house so that I wouldn’t have to cook after being at the hospital. Friends who had started out just as gym buddies took me out for coffee to talk and take my mind off things. Parents of children at my elder daughter’s school gave her lifts and took her to water polo training sessions.
Mbali’s school held a cake-and-candy fundraising event to help with the medical expenses. A mom at the school, who did not know us, sent funds through the school because the story of my sick child had touched her so deeply. My sister-in-law in the US started 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 into the ICU. Colleagues and acquaintances, born family and chosen family, sat with me as the doctors kept us abreast of my daughter’s progress, giving their input and asking questions that I didn’t always think or know to ask. The doctors and nurses were deeply empathetic.
Nontobeko Hlela’s daughter Mbali
From the day my daughter slipped away, neighbours that had never previously set foot in my house have come through with condolences, food and flowers. Some sat to cry with me and commiserate sharing their memories of the child that they had seen grow up on the same streets. My gym friends set up and decorated the church and the 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 vindictive. A few hours after my daughter had died, I received an aggressive call telling me that people couldn’t park on the grass outside my house and demanding to know how many people were going to come to the funeral.
As we drove from the church to the cemetery in a small procession of immediate family some drivers hooted and cut in, as if a few cars in a funeral procession was some sort of outrage.
I loved Mabli with all my heart. I truly feel that she was my heart. I have no words for the pain that has enveloped me and her sister Nandi. All I wanted was to have my own little family, to love my two beautiful children and to watch them grow up.
I am told that time makes this grieving easier. I don’t know if that is true. I lost my big brother 10 years ago this year and some days it still feels like it just happened yesterday. Knowing that I will never again feel Mbali’s little arms around me, hear her laugh, hear her say “nci…nci…nci…this woman” as she teases me for being a klutz, is like standing at the edge of a cliff and realising that you are going to fall.
But I know that I won’t have to stand alone on that cliff, dizzy above all the swirling pain below. Nandi and I have the support of colleagues, neighbours, friends and family. We are not alone in our most difficult times. With their help I hope we will get through the months and years ahead.
Moments like this burn away everything that is petty and unimportant. We see what matters. One of the things that really matters is that so many of us are really decent people. In the ordinary business of our lives we don’t always realise that so many of the people around us are so kind.
It is easy to get swept up in the emotional turmoil of all that is wrong with our country, with all the people that are conniving and malicious, and to forget that most of us are really decent people, people that can be extraordinarily generous and kind. As I lost my daughter I was enveloped in love, in ubuntu, in love without colour.
Like most parents, I had been frightened about what the future might hold for my girls as our country spirals into a worsening crisis. I still worry about Nandi’s future. But having seen the kindness and decency of ordinary South Africans, I think that 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 seconded to the office of the National Security Advisor as a Researcher, she writes in her personal capacity.
The views expressed are those of the author and do not necessarily reflect the official policy or position of the Mail & Guardian.