As I work in the less recognised field of paediatric palliative care my friends are always eager to send me links to articles related to children and end-of-life care so it wasn’t surprising that I was alerted by many to an article about a foster father in his mid-60’s, Mohamed Bzeek, who takes in and cares for terminally ill children. Immediately I knew I had to meet him. As fate would have it, he lives in greater Los Angeles and I happened to be going there for Passover in April. After brief email exchanges, we picked a time and, three weeks later, I was standing outside his door in Azusa, California.
I stood there for several minutes. Why was I so nervous to ring the bell? I had visited hospices in Kenya and Malawi, and had countless conversations with reluctant strangers and acquaintances about the value of palliative care. Yet here was someone who was living the work that I mostly talk about in the abstract.
Since I wasn’t a reporter here to interview him I was unclear about the format of our visit. I just wanted to meet someone who was not from a medical background caring for kids in this unique way. I was particularly interested in how he sees life and death and how he keeps his spirits up during such intense caretaking. You know, easy questions for someone you’re just meeting for the first time!
I rang the bell. The man who answered was warm and bear-like, with a long beard and a soft smile. I could see that he was used to ushering in people who may be nervous about seeing sick and low-functioning children in such a casual setting.
Right away, his biological son zoomed by on a homemade skateboard, eager to tell me his own medical story of living with Brittle Bone Disease, before his father could. He explained that he has become stronger over the years and can now crawl on his own. I appreciated that he was so confident and informed about his illness and that I did not need to hear it from someone else. So often a sick child is unable to speak or advocate for himself.
I had so many questions for Mohamed, beyond the timeline of his life or the diseases of his children. I wanted to discuss religion, faith, God, and blame (or lack thereof) but I know it takes more than one visit to address all these issues.
One interesting belief he holds is that people have an ‘end date’ which is decided before they are born, so it is not up to him to change or extend that date. He just wants to make the children he cares for more comfortable and loved while they still have life. As an advocate for pediatric palliative care, I am often reminded how much ‘easier’ it would be for me to fight for prevention or curative measures. While all of these measures are important I was grateful to meet someone who doesn’t worry about indicators or outcomes. He just loves the children in his care exactly how they are, knowing that no cure is in sight.
Next I met his foster child who was propped up on the couch. When Mohamed went to hold this small, fragile, girl he warned me that she occasionally has seizures and if I was holding her while this happened, to just keep holding her and it would quickly pass. I appreciated how calm and matter of fact the conversation was, allowing me to hold her with confidence, prepared for whatever her body would do.
She’d had an encephalocele which meant that at birth part of her brain protruded through an opening in her skull. It was removed but her brain never fully developed so she cannot see, hear, speak or move. She can, however, feel and respond to touch. When you stroke her gently she relaxes and as you cradle her body, it moves in sync with yours. I appreciated these subtle cues and the power of quiet connection.
Mohamed has no agenda with his own child nor his foster children and finds ways of connecting that works for each child. It is amazing to think that he is working on this intuitive level all day long.
He has found a way to make it work for him and his family without having to be in a medical facility. This means that he has to be present or close by around the clock. For the past three years, a nurse visits every weekday so he can take small breaks, run errands, and pray at his mosque. They work well together and I very quickly felt a part of their team. The nurse told me that Mohamed was also her running coach, as he used to be an athlete, and spoke proudly of her progress under his guidance.
While I was unsure of how long to stay, Mohamed made it clear that I would join him for lunch, insisting that no guest ever left his house hungry. He cooked for us in his immaculate kitchen, and as we ate, we spoke more about religion and the importance it plays in his own life. Although driven by his own Muslim faith to help those in need, the children he takes in are from all faiths. To illustrate this open acceptance for all, he was at pains to emphasize the similarities to be found within his Muslim and my own Jewish belief systems.
Mohamed is not a doctor, a man of the cloth, nor even the biological parent to most of his children, but to him, none of this matters. He does whatever is necessary to make his children feel safe and loved – and there is no title you need for that.
About the author
Sophie Kieffer is a passionate advocate for paediatric palliative care who has spent time visiting different successful paediatric palliative care programmes in Eastern and Southern Africa. She has also volunteered in similar work in South America, Nepal, and Israel. She holds a Master’s degree in Global Health from Georgetown University in Washington, DC and has been working with ICPCN for the past year to expand their network.