When we see their homes, we can see what is best for them and what else might be needed. When it concerns children, we often visit them more than once, they grow and will need a new wheelchair or walker for example. In some cases, we provide extra support like enabling them to go to physiotherapy or arrange an appointment with the paediatrician.
The home visits are sometimes heart-breaking. Recently I went to visit a 3.5-year-old boy again. We have visited him before and provided a buggy, a wheelchair and a relax chair. We also brought him Nutridrink if available as he can only digest fluids and is a bit underweight. I called him “the little boy with the most beautiful smile”, as despite being severely multiple disabled he was full of life and so cheerful.
When she was 7 months pregnant, she started bleeding heavily. She was sent from hospital to hospital and had to have a caesarean section, but no donor blood was available. It took days before her son could finally be born.
She knows he has cerebral palsy and there is no cure, but the situation is untenable. He is sick, crying and screaming all night, biting his lips till they bleed. ′′He looks at me, I know he is in pain, that something is wrong, but I cannot understand what he is trying to tell me, and I cannot help.”
Even the other children say their little brother no longer smiles. She feels guilty, powerless and is totally exhausted. Last month she took him to the hospital three times, in vain. Worse even, she felt like she was being looked away.
She lives on her own with four children to care for, and her husband is abroad. Her mother is old and needy, and her only sister takes care of their mother. Her husband’s family does not care for her. She can never leave the house, there is no one who can look after him for a while, she can never attend a ceremony, has no time for herself, is constantly caring, lives in fear and has sleepless nights.
I let her talk and put my arm around her, the tears come. I tell her it is okay to cry. Cannot do much more than show some understanding and empathy and offer her some comfort and support, but it does her good. She says she trusts me and feels she can talk to me. I assure her that she can always call me and that I will do my best to be there for her. It touches me deeply.
We agree that I will set an appointment with the paediatrician we work with, hopefully he can do something. I will also see if there is a possibility for part-time care for her son. Her other kids cannot go to school at the moment as she cannot bring and pick them up in this situation.
I drive home… angry because it is so unfairly divided in this world, gutted that the boy’s condition has deteriorated so much. At the same time, I am thankful, thankful for her trust and for allowing me to be there for her.
Note: out of respect we respect the privacy of those concerned.