“There is nothing to writing. All you do is sit down at a typewriter and bleed,” Ernest Hemmingway apparently said. I feel like that today as my heart is split wide open and it seems that just having tears to show for all this grief is not quite sufficient. As a community, we have suffered an incredible loss in the death of little Christo Bothma. As one of the sisters in CTICU said to Christo’s mother, “He was all of ours; he was not just your child.” I suppose we all feel like that because we have cheered him on and rooted for him for six and a half years, and he rewarded us by overcoming every obstacle, being so incredibly brave and courageous and as if that were not enough, he was the friendliest happiest little guy ever.
I’m slowly learning to understand grief, especially after losing my dad a few months ago. A social worker with whom we work closely, Rachelle Biatz, explained that mourning is what we do outwardly: the crying, the funeral, the traditions, the reminiscing, but grief is what you alone carry. It is internal, like a broken rib – incredibly sore, and something of which you are acutely aware, but no one knows it, no one sees it. Maybe, in these writings I am asking for a witness to my grief over Christo, selfishly for myself, but also for his parents, who after such an awfully hard journey, are left with the emptiness and pain in the present and facing a very different future they cannot even contemplate yet. I also want to write this for the doctors, nurses, perfusionists, social workers, aligned services and hospital staff who we assume are used to death, but who are deeply affected by it none the less.
I do not know the Bothma family because Christo was ever a patient at the Recovery Lodge. I met them on the day Christo was rushed in a helicopter from Nelspruit to Netcare Sunninghill when he was a few days old and they checked in to the flatlet at my house through Airbnb. This was early May (2016) when Johannesburg is at its ugliest. I think there is an unwritten rule amongst mothers that you cannot let each other carry the heavy stuff alone, and for the next five months Melissa and I would spend a few minutes together each morning over coffee. Johan went back and forth between here and home but Melissa stayed, amazing me with her ability to never cry, laugh every day and to never ever complain (I am really not making this up. The first time I saw her cry was November last year). She armed herself with so much knowledge and spent day after grueling day in the CTICU located on floor minus one where there is not a window or a reminder of life outside the walls in sight.
If you want to understand human emotions you just need to sit at the airport and experience the extremes between joy and sorrow there that is more intense than most other environments. But if you want to really come to terms with the enormity and scope of what we humans can carry inside of us, go sit in that waiting room at 9:55 one day. This is where the mothers and fathers gather before, at strictly 10am each day, the security allow the parents in to the ward. The hope they collectively have is almost tangible, but so is the fear. It is in this waiting room where Melissa served the other mothers, despite her own battle. I watched her explain processes to other “newer” moms, share insights and offer incredible support only available to those who are walking the journey with you.
Over the next six and a half years there was a tsunami of surgeries and procedures, endless admissions and a roller coaster of disappointments, failures, small victories and hope. The isolation of being in a strange city for many months at a time, as well as the couple being apart for so long, as Johan had to go back to Nelspruit, was just additional stress in an already brutal situation. The visiting hours are limited in CTICU and this is of course harder for the parents than the children, as most patients are teeny tiny babies. As Christo got older, this became one of the biggest issues. As he gained understanding and a fear of hospitals, needles and hospital staff. He hated it when his parents left after visiting hours. There was an awful stretch of six months in 2019 when Christo was hospitalided and 3 times a day, Melissa had to say goodbye to a little boy who wanted and needed his mom.
Throughout 2022 we knew that Christo desperately needed another surgery, this time to replace his artificial aorta yet again, but as he had also developed PLE and plastic bronchitis, he was really not well enough to go through open heart surgery and the treacherous recovery afterwards. In early November he was admitted to CTICU and the waiting began. This time it was different. Christo was absolutely fine to be there. He never cried for his mom, he never wailed when she left. We assumed that it was because he was just so used to being there or maybe that he had matured. I think that was not it. Kate Bowler, who was diagnosed with stage 4 colon cancer and given very slight chances of survival, describes an all-consuming, all enveloping Love that settles over you when you are standing at the abyss of this realm. She said that she was soaked in a Peace that she could never begin to understand. I find solace in thinking, that already then, without us knowing, Christo was busy transitioning and found a comforter other than his mom?
On Friday, I went to see Christo. I must confess that children don’t really like me. I think I scare them, or maybe they scare me, but Christo really liked me, and I completely and utterly loved him. He shouted with joy when I walked into the ward and put his head on my hip allowing me to run my fingers through his hair. The perfusionist walked in and casually announced that the surgery would take place on Monday. One sentence can hold so much that Melissa and I stared at him, blinking, speechless. How can one narrate this – so much hope and fear in just a few words?
On Monday he went in, was placed on a heart lung bypass so that a team of brilliantly skilled doctors, could attempt, once again to fix his broken heart. They tried so hard but after 8 hours, the CT surgeon that loved Christo, came to tell Melissa and Johan that Christo died. I was on the treadmill when Melissa phoned to tell me. I wanted to vomit. I had the incredible honour to then go and sit with them and Christo. His face was still warm and I could hold his tiny beautiful hand, with his exquisitely delicate fingers for the last time.
How do we move on from here?
Melissa and Johan are still in Johannesburg as they now have to navigate through another horror – that of his tiny body going through an autopsy by a state pathologist and them having to give statements to the police. This is the reality when someone dies on an operating table. As if their horror was not enough, they had to go and identify him in the Hillbrow morgue again. I dare not let my mind go there, as it is too revolting to contemplate. In between their visit to the Sandton police and the morgue, we went for coffee. Melissa wondered what is worse, to have seen him grow up and to have lost him now, or for the other mother, who lost a week old baby the day Christo died. She said, that the other parents never got to take their baby home, never knew that he loved popcorn and dogs and slept with his favourite toy, an owl. Maybe losing a baby at a week old is easier than losing your son of almost seven. I asked her if she would have been willing to give all those memories up and be spared this pain. Her answer is obviously no.
My dad had a little brother named Christo who died in 1944 of polio. My grandmother could not speak his name without crying for the rest of her life. For now, I share this trait with her.