Jun 4, 2021

Life's Simple Delights and Blessings

Ribka had just stepped into the house and was greeted by a little boy who was teetering excitedly towards her. Even though his face looked pale, Hadi had a cheerful smile spread across his face.

“Hadi misses Nurse Ribka the most.” Said grandma as she held Hadi back while nurse Ribka dons her PPE, getting herself ready to enter the family space.

“Wait until I’ve changed my clothes, Hadi,” Ribka said to cajole the little boy she adores.

“Usually he doesn’t want to walk at all as his knees are quite weak. But, when he sees Nurse Ribka, he gets so excited that he just tumbles happily to her.” Grandma smiles at her grandson.

While waiting for Ribka to get ready, Hadi pointed excitedly at the bag that Ribka had brought with her. He knows that the bag contains red grapes, his favorite fruit. Hadi rarely gets to eat fruit, especially grapes – because they are too expensive for the family to buy.

“I want that…” He said pointing to the bag without completing his sentence.

Little Hadi and his mom live in a one-bedroom house shared with his grandparents and two of his uncles. As a single parent, Hadi’s mom has to work day and night, not only to support her family, but to pay for Hadi’s medical expenses. This leaves them with hardly anything left for their living, much less luxury items like fruit or grapes.

Hadi was diagnosed with Retinoblastoma when he was 3. While his mom had noticed that the pupil on his left eye looked different, like a “cat’s eye”, the family simply did not have the knowledge nor the financial means to take him to the doctor. It was not until the eye turned alarmingly red and he was vomiting non-stop that he was taken to the doctor for investigation. For the last 2 years, chemotherapy had been Hadi's battleground, and remission has been the family’s daily prayer.

“Let’s start our checkup, shall we?” Ribka said to the boy who had been patiently waiting for her to don her PPE. Hadi nodded and happily went closer to Ribka, ready to “play”.

After conducting a general physical examination, Ribka proceeded to look at the wound dressing of the large mass on Hadi’s left eye.

"Most kids are afraid to be examined, but you are a brave boy!" Said Ribka, as she cleaned the abscess where the eye had been removed to stop the spread of cancerous cells.

“So it won't hurt anymore.” Answered Hadi, with his childlike voice.

"Wow, so when I am here, I can make the pain go away?” Ribka’s question was answered with Hadi’s enthusiastic nod and smiles.

"I am relieved to see how much better Hadi is now since nurse Ribka came into our lives. He used to cry such a lot, complaining of pain in his eye and his head. We didn’t know how to help him. We could only lament about our ill fate." Grandma's eyes filled with tears as she shares the family’s experience.

Grandma is Hadi’s main caregiver during the day when Hadi’s mom is at work. She often cries when she shares her fears and concerns about Hadi. "I am grateful that God still gives me time to live, so that I can be here to help take care of Hadi.” Grandma said quietly, with eyes full of tears.

Rachel House was established with the belief that no child should ever have to live or die in pain. This is what drives us to provide palliative care service for children living with serious illnesses like Hadi at free of charge. Pain and symptoms are managed at the comfort of the patients’ homes so that children can live with optimal quality of life in their remaining days.

“I am grateful to Rachel House for the transportation support. Now Hadi and I don’t need to wake up at 4am to get to the hospital appointments on time. "

Hadi and his grandmother used to take public transport to the hospital. From their home, they had to change 4 (four) buses. This meant waking up at 4 AM in order to get to the hospital for the 8AM registration time. Often, grandma had to carry Hadi on her back as the poor little boy could not walk far. By the time they reached the hospital, Hadi would be crying from the sore and itchy wound on his left eye.

“He absolutely loves riding in the taxi now because it is cool inside the car. In fact, he said he likes it better than being at home because of the air-conditioning that helps make his eye less itchy and sore.” Said Grandma.

"Is that right, Hadi?" Asks Ribka. Hadi smiled shyly and nodded his head.

Times like these remind Ribka of what important teachers her little patients are for her. Riding an air-conditioned car maybe a normal thing for most of us. But not for Hadi. He is filled with joy and gratefulness for the things most of us take for granted. Hadi’s ability to celebrate every small moments of joy in the face of great adversity is a lesson for Ribka.

And, Hadi’s smile is totally infectious. The visit has completely energised Ribka and filled her with happiness and gladness. The tiredness she was feeling before the visit is now erased and replaced with the memory of the sweet smile on Hadi’s face.

Apr 26, 2021

This is where our work is needed, where we should stand

I have been holding the same image in my head for the past few months: two little girls, running towards me and nurse Ribka, like old friends meeting each other again after a long time apart. The little things stick with you – the unassuming embrace, trusting smile, and those glistening, spirited eyes. In those very few seconds, my heart was full.

These girls were born exactly like any other children: helpless, hopeful, and looking to be cared for. Their mother is exactly like mothers all over the world: caring, hard-working, and often shamed – even after doing all she possibly could. They have HIV. A medical condition, a global problem, a disease that is not any less important than others that are roaming in the world.

Their living condition is among the first things that separates us. Their house structure is not sturdy; you can hear its foundation protesting as you climb the narrow stairs on the side. The one room inside, the only habitable place to lay themselves to rest, is not safe. You can hear the wind pushing through the walls. All sorts of things were stacked around the room, most of them I could not identify – but I did catch a mouse peeking from the corner of my eye. ‘Oh, hello there.’ I muttered under my breath. As I realised it might be the least of her problems, I tried sitting absolutely still and listened carefully to the conversations.

Nurse Ribka was talking about how it has been lately for the mother – each day is a battle. Starting with the obvious; the disease and their symptoms. The medication has its own side-effects, and even without these physical challenges, it was already so hard for her to earn a living. Another added challenge, is being a single mother: ‘The girls need me; they don’t want to be left alone’ – as she said this, I can hear the girls squabbling from outside.

The mother tried to settle them down as the girls eventually joined us in the room. The conversation continued, now her eyes filled with tears as the rest of her story followed. ‘If I don’t work, my children can’t go to school. I don’t mind being stupid, but let it just be me. I just can’t have them ending up like me. I want them to have a better life.

She spoke in such humility about things she has little control over. There was so much guilt, but also power, determination, and love. I was filled with an overwhelming sense of being – one that would haunt and bless me for days and days ahead.

Nurse Ribka beautifully listened and cared for the mother in a solemn silence and presence. She then proceeded to ask if the mother needed any other help. I was shocked by the answer that follows – they have been shuffled around from one public office to another, struggling just to get themselves registered properly. Without this, they cannot be eligible to get affordable care. ‘We will do what we can to help.’ nurse Ribka said, with her calming smile.

We said goodbye after Oma Liese, the grief counselling expert, gave the comfort and appreciation the mother deserves. I could not remember the exact words, but the most impactful thing happened between the lines. They looked at each other with recognition of one another – a mother to a mother – then they hugged for as long as the time allows them to celebrate each other.

A family of three, surviving on almost nothing with the willpower of a whole village. Two little angels, playing in the corner; and their mother, a woman of strength and formidable heart, holding her family together, even with HIV and its complications claiming her from the inside.

They deserve better. Their life is a gift. I was at a loss for words after the visit, but I am not shying away from their pain any longer. It is the least I can do, when they have to face theirs each and every day for the rest of their lives. This might be their story, but this is also a story of you and me. This is where our work is needed. This is where we should stand.

Mar 29, 2021

We Will Be with You

Auldina looks happy, playing with some of her friends. She is getting chubbier now and her skin looks smoother than before. She makes a hand gesture; she wants to go to the bathroom. She is a smart girl. She is indicating what she needs with sign language as she is still not able to talk properly yet. An older friend accompanies her to the toilet, while she wobbled uncertainly on her feet, having just learned to walk recently.

It’s no longer possible for her to live with her grandma. Last time I visited them there, Auldina and her mom had to sleep on a bench outside the house. Whether it was raining or not, they had to stay outside for there was no space inside grandma’s house. It is a very small house in a densely populated and marginalized area. In that house lived her grandma, grandpa, mentally-ill aunt, her mom, Auldina’s older sister and Auldina. Her father had disappeared. Her grandma is the sole breadwinner for the family by offering her service from house to house to wash their clothes.

Auldina’s mother suffered from the same immunity-compromised illness as Auldina. With both of them unwell and needing medical attention, grandma’s pitiful income was simply not sufficient to take care of both of them. With insufficient food and medication, their health quickly deteriorated. Eventually, Auldina had to leave the family and was brought to this shelter, a home for few children with similar immunity-compromised illness. But now, Auldina is separated from her family. 

Last month Auldina’s mother breathed her last breath without her youngest girl by her side. She had asked to see Auldina, for she knew she was almost the end of her journey. However, the pandemic has restricted everybody’s movement, especially for those with serious illnesses. In the end, she had to contend with hearing her baby’s voice over the phone, one last time.

I came to the shelter today. As usual, Auldina seemed energetic. However, there was something different about her. I could tell that she had learnt to be more independent. I cracked some jokes with her and we smiled at each other. I had to lean close to her ear in order for her to hear me.  I’ve got mixed feelings seeing her today after her mom’s demise. My chest felt heavy knowing that Auldina would never see her mom again. I wondered what is going on inside her mind. Has this tiny girl noticed that things are not the same anymore? Has she wondered why she’s not staying with her family? Does she remember her last call with her mom? Does she wonder why she never sees her mom's beautiful face nor hear her soothing voice anymore?

I visit Auldina once in a fortnight and call her once a week. I check on her to make sure that she takes her medicine regularly. I bring her the things she needs: her pampers, milk and medicine. Now she has to go through life alone in the shelter, away from her family. And she has to battle the illness for the rest of her life without the loving support of her parents. This has made me feel closer than ever to her. It dawned on me that my visits and support, despite the difficult challenges caused by the pandemic, are all the more crucial to this little girl now. A familiar link to the past she knew.  

A child living with an immunity-compromised illness can be severely affected in their growth and development, whether it be physically, or emotionally. Auldina has lived with this illness since she was a baby. Despite her slow development, this cute, five-year-old girl looks just as lovely as any other children. I do wish she will grow stronger and healthier as we continue to offer her our love and care.

 
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