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.

Mar 1, 2021

Ari's Story

Under the scorching sun, nurse Dadan and I walk carefully through a busy road in South Jakarta. Today's visit is promising to be quite challenging for me. Even though I have visited many patients with our clinical team (as the human resource manager), where we are going today is rather unusual.

Ari* and his family live under a highway flyover and close to the railway track. I was startled several times, while we were there, by the booming-loud noise when the trains passed by.

"How can they sleep at night,” wondering out loud to Dadan.

As I continued to walk behind Dadan who was leading the way, I looked around in disbelief at the scene before me and wonder where could this poor boy live.

When we finally arrived, I was shocked at the place where Ari and his family called “home”. A small shelter with tarp roof; this is not only the place where a family of 4 sleeps but is also a place where they earn their living.

"Assalamualaikum Nek." Dadan greeted Ari’s grandmother, who was sitting in a dilapidated rattan chair fanning herself with newspaper.

"Welcome! Please sit down." Said grandma.

Nurse Dadan introduced me briefly to grandma, before leaving us to check on Ari.

Alone with grandma, she started telling me how glad she is that Ari is now living with her. Ari had been living in an orphanage since his mother died when he was 2. But a few months ago, the orphanage told her that they could no longer look after him as he was falling ill too frequently. With Ari’s father missing, grandma was the only family left for Ari.

"I am happy Ari can live with me, but our situation is difficult. I am constantly worried that I won't be able to look after him properly. "

Grandma lives with her husband and their youngest child who has a mental health disorder. I cannot imagine the worries that must plague grandma every day, especially now having to take care of a sickly boy with a compromised immune system.

“Often we don't have any food to eat. Fortunately, Ari is not a fussy kid. But I do worry. Look at him, such a tiny boy!” Exclaimed Grandma.

As I look over towards Dadan where he is conducting physical examination for Ari in the hot and dusty area outside the shelter, I noticed how desperately thin Ari is. At 13, he has the body of a 6-year-old. A boy of not many words, only a shy smile noticeable on his face.

"It’s also hard for them to have access to clean water, Mbak Pay." Dadan told me.

Grandma explained that they only shower occasionally as they have no access to running water. They put a bucket out to collect rainwater when it rains, for cleaning purposes or simply to wash themselves after defecating. 

It is unimaginable for me, to think about the hardships that grandma and her family have to face every day. It is not only challenging for them to put food on the table, even clean water is difficult for them to access.

As I walked home, my thoughts drifted away to what would happen to Ari and family if Jakarta were to experience a heavy rainfall. Where would they go for shelter when their “house” is made only from tarp? What will happen to Ari and grandma if the area is flooded? What will be the fate of this family, who will protect them?

For the majority of our patients from the marginalized community, Rachel House's support is their only lifeline to help and assistance. The only life buoy they know. Rachel House provides not only medical care, but also essential items such as diapers, high nutritious milk, basic necessities of rice and cooking oil, and transportation assistance to and from hospitals when needed. The sembako (groceries) that Rachel House supplies help ensure that at least for the next few days, the children and their families do not have to worry about where food and sustenance will come from.

If you would like to help give sparks of joy and sustenance to the children at Rachel House, please donate to support our work.

Feb 23, 2021

Erwin's Guardian Angel

When we hear the term “palliative care”, most of us would associate it with end-of-life medical care. This is essentially true, but it’s also much more than that, especially for the children at Rachel House. Our nurses and community health workers experience this firsthand and see how palliative care gives a new chance for hope when all seems lost.

Erwin, a shy sixteen-year-old boy, was first diagnosed with ALL Leukemia when he was just 2.5 years old. Chemotherapy was his constant companion until he was 10, when the doctor declared him clear of cancer and he could go back to school. Life had started to look up, but sadly for only a few short years.

In September 2020, the cancer cells that had robbed Eriwn of a big part of his childhood returned with a vengeance. His mother had to bring him back for treatment, even during the heightened risk environment of the pandemic. While the initial series of chemotherapy left him with violent reactions of nausea and vomiting, the new oral chemotherapy treatment has only a side effect of a voracious appetite. This, however, presented an added challenge for a mother who is already struggling to make ends meet.

Erwin has been under his mother’s care since his parents went their separate ways. His father had since remarried and stopped providing financial assistance to Erwin and his mother. Juggling between work and Erwin’s radiation and chemotherapy treatment, all alone without support, has been his mother’s struggle for many years. Eventually, they had to move in with her family, even if this means having to share a crowded space with eight others.

The story of Erwin and his mother’s struggles finally reached one of Rachel House’s community health workers, ibu Eny, through her niece who attended the same school as Erwin. Ibu Eny quickly responded and visited Erwin to assess the family’s overall needs.  While Erwin is progressing smoothly through his treatment, it was clear that his mother needs a shoulder to lean on. The journey has been long and arduous for her, battling alone with hardly anyone that she can talk to. The loneliness and financial worries are taking a toll. She talked about feeling desperately alone as her family does not ask much about Erwin. The weekly cost of transportation to the hospital of around Rp. 500,000 per week (at Rp. 140,000/- per return trip), has meant that she was having to choose between feeding herself or getting Erwin to the hospital for his treatment. They would sometimes borrow her father’s motorbike when it is available or use the public transport for a cost-saving option, but not a safer option for Erwin.

These worries of escalating costs of transportation have thankfully been put to rest now with Rachel House’s assistance, making available transportation for patients like Erwin to access treatment they need.

Accompanying Erwin for treatment has also meant that she has had to take leave from her work. With limited income, it means often going without food while waiting for Erwin at the hospital.  This is a common occurrence for many of our patients, leading Rachel House to start the practice of leaving a sum of money with food providers at hospital canteens, so that parents of our registered patients do not have to go hungry while taking care of their children.

At Rachel House, we believe that our children’s wellbeing is totally connected to the caregivers’ presence; children need to lean on their parents as they traverse through pain and suffering brought about by their illness. This is why in our work, supporting parents and ensuring their wellbeing is one of our key priorities. 

Ibu Eny once asked Erwin, “Do you miss school?”. He replied shyly that he misses his friends most. Before the pandemic, his teachers, friends and their families would visit Erwin in the hospital to cheer him on with the treatment. With the pandemic, this is no longer possible. Knowing how alone Erwin and his mother are, Ibu Eny visits and calls on them frequently to check on how they are doing, making sure they have all their essential needs. Ibu Eny has become a place for Erwin’s mother to confide in, particularly when the bumpy roads seem to go on forever. 

A mother’s love for her children knows no boundaries. We constantly look in awe, as we do now at Erwin’s mother and her immense sacrifice for her son. For Erwin, his mother’s unwavering love is the only constant in his life, she is his guardian angel. For us at Rachel House, we will do all we can to support her, so that she can continue to be there for him. Adding life to whatever time he has on this journey we call life.

 
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