Al* and his aunt live in a tiny home on a densely populated street of Jakarta. Entering the neat and tidy home would have surprised most, especially given the glorious mess on the street just outside.
Al’s parents died almost 10 years ago. His aunt has been his constant companion since then. Lucky for him, her work as a washer woman does not take her away from home for too long. Because even though he is 16 and should be able to look after himself, he is physically weak and often struggle to even breathe.
Al has been living with a disease that compromised his immune system since he was seven years old. Over the years, the disease has caused repeated lung infections, resulting in severe lung issues affecting his heart functions. These days, Al could only manage to sit by the windows and look longingly as his friends rush past with a football in their hands. With the reduced lung capacity, Al is bound to the oxygen tank that makes it hard for him to contemplate going out. He is barely able to roam inside his tiny home without getting out of breath, let alone playing outside.
This also means that hospital is his second home. Exactly one week before the Eid holiday (the largest celebration in Indonesia), Al had to be hospitalized. He had such a severe dyspnea that his lips had turned blue. His poor aunt was in such a state when she found Al unconscious outside their home; he had been to the mosque for prayers for the holy month of Ramadhan.
“Al was unconscious for days at the hospital. I thought there was no more hope. That this terrible disease had finally won. But God had mercy and proved us wrong. He gave us hope during Eid, and Al was allowed to come home. God is gracious.” His aunt said. Her eyes glistened with unshed tears, remembering the nightmare that she faced during the holy month of Ramadhan.
“Al, how are you feeling today?” Asked Dadan, Rachel House’s palliative care nurse. Al answered with a few nods, but no words. Speaking is challenging for him. Even a few uttered words, could sometimes hurt his chest.
After donning his full PPE, Dadan approached Al who was already sitting on the floor waiting for his physical assessment. Even though the COVID numbers have eased in Indonesia, Rachel House nurses are still applying strict infection control protocols when visiting patients. This is to ensure the safety for everyone, protecting our patients and their families, as well as the entire Rachel House team.
Dadan started by checking Al’s vital signs and the oxygen saturation. After jotting down the results in his notebook, he took out a stethoscope to listen to Al’s lungs. Dadan’s face looked very serious as he listened intently. After a while, he smiled with satisfaction, and announced to Al that his lungs seemed to be improving and commended him on the diligence with which he was taking his medications.
“You’re in a much better shape today. But remember to keep taking your medicine regularly and try not to over exhaust yourself.” Dadan said.
Dadan also took the time to speak to Al’s aunt, enquiring about how she is coping with caring for Al, and making sure they are financially alright. As Dadan got up to remove his PPE to prepare to leave, Al’s aunt rushed to the kitchen and came out with a bag for Dadan. Discovering that the bag was filled with several varieties of fruits, Dadan immediately said, “Oh no, please don’t give these to us. Al can enjoy these with you.” He said as he tried to return the bag that Al’s aunt firmly refused.
“This is all we can give to repay the kindness we received from you and everyone at Rachel House. Please share these with your colleagues. We are so grateful for all your help.”
Dadan was moved by the incredible generosity of Al’s aunt as he humbly accepted the gift. On the way back to Rachel House, Dadan quietly sent a prayer to Al’s aunt for her generous heart. He knows how much the family struggle financially, and yet she still insisted on sharing a large bag of fruit to express her gratefulness. Fruit is considered a luxury that, Dadan is certain, Al and his aunt rarely got to enjoy.
Once again Dadan was reminded, that his patients and their families are not mere acquaintances for him. They are in fact always his “teachers”. After almost 8 years serving at Rachel House, he continues to learn from each and every one of them. Gratefulness in his heart.
What we do to help?
Children with a weak immunity system like Al are very susceptible to infections that could compromise their health and wellbeing. Fatigue, lack of nutrition, or even hygiene problems can lead to significant deterioration – which sometimes results in death.
Every week, Dadan visits Al’s house to monitor his condition and manage any worrying symptoms that may arise. Rachel House also assists by supplying medications that are not covered by the government health insurance (BPJS). For example, medication to ease his airway passage, that are expensive but Al needs. Without Rachel House, Al’s aunt would not have been able to afford these medications. Rachel House’s presence make certain that children like Al, does not have to suffer, and their loving family are supported always along this lonely and often frightening journey.
*name changed for privacy