(by Amos Tanoyo – Volunteer)
Can a mother facing the soul-crushing reality of her child’s life-limiting illness continue to live with the selfless joy that continues to burn bright for her family?
This is the story of Rino*, a little boy who at a tender age of two is diagnosed with a life-limiting illness that affects his quality of life. The immune-compromised illness makes Rino susceptible to multiple infections that lurk everywhere. Even so, he displays the immeasurable strength to keep going.
…………………………………………………………………………………………….
When I visited Rachel House that day, the nurse I was assigned to explained Rino’s medical background as well as the living condition of the family. When we arrived at the patient’s home, we were instantly welcomed by a caring mother and her two playful kids who were not the slightest nervous about meeting unfamiliar faces. I noticed as we were arriving in the area, that the grounds on which their home was located is a sort of an “illegal” home, perched precariously on unstable grounds that is a mixture of waste and mud; Rino’s home is so tiny that could barely fit one person let alone four. Observing this, I finally understood how difficult it must be to raise one’s hopes up when living in a state like this.
While Rachel House’s nurse was conducting the medical checkup for Rino, we had a long conversation with the mother about her ongoing troubles, but also the joys of raising her kids. She mentioned that she had been worried, as any mother rightfully should be, with Rino having persistent digestive issues. He had been going through tough periods of severe bouts of diarrhea followed by a slight fever. The nurse and I were surprised to see how he remained active, similar to most children his age. He couldn’t sit still, occupied with playing with his toys and excitedly interacting with us.
The physical examination went smoothly without any major concerns on his health. The main issue was his body weight of 8 kg which was far from the ideal for his age. We discussed with the mother about potential growth issues that could stem from this and encouraged her to make sure that Rino gets enough for his dietary needs, and to coax him to eat when he resists.
Though troubled, Rino’s mom had a positive outlook towards the future of her child. She joked about how he would never stop playing with her and his sister and how he never cry even when he became sick. She talked about her son’s love for honey and other bits and pieces about her daughter’s schooling. Initially I had imagined a struggling family thrust into a deep pit of despair, but throughout the visit, I saw only the glimmer of hope in the mothers’ eyes for the future.
From our conversations I came to realize that the rest of the family did not know about Rino’s illness. They were also afraid of bringing their daughter to the hospital to find out if she had the same immune compromised illness. Perhaps the fear of further stigma or was it out of love?
After the checkup we handed the family the donations of diapers and special formulated milk to fortify Rino’s health. We assured the mother that she should not feel shy about making contact or seeking assistance from us when she needs.
Rino’s mom is like a beacon of hope that keeps her family going. Rino is frail and weak due to the illness that plague him, but the presence of his mom keeps his spirit buoyant, allowing him to live with joy that every child needs – a place where he can seek solace for things big and small. Although this story is centered around the boy and his condition, his mother’s unconditional support truly shines the brightest for me.
*name change due to privacy
