Born Differently For A Purpose

Club Rainbow’s 2022 Education Award recipients Sharvani and Raphael were pleasantly surprised and over the moon when they were notified about their academic milestones and achievement. While this academic journey was mentioned to have been stressful, our recipients have pushed themselves to not give up, and instead, strive to excel and be outstanding.

Club Rainbow is pleased that this Education Award serves as a symbol and reminder for Sharvani to fight on and be confident, because as Sharvani mentioned, “everyone is born differently for a purpose”. This grit has been backed up by Sharvani’s caregiver Mdm Mageletchumei, who constantly reminds him that he is not alone, encourages, and supports him in his studies with the necessary facilities, time and even an evening remedy of healing music in order for him to thrive and be comfortable.

Mdm Carol, Raphael’s caregiver also believes that the Education Award gives extra encouragement, recognizing improvements made by children like her son. While Raphael faced some obstacles through his learning journey, it was through Club Rainbow’s play therapy sessions that Mdm Carol was more informed about Raphael’s need for greater structure and discipline, equipping her with the knowledge and wisdom to better guide Raphael. Together with Raphael’s determination, this has pushed him to attain this academic achievement.

Mdm Carol also mentioned her gratefulness for Club Rainbow’s caregiver sessions that were personally beneficial for herself, where she got the opportunity to engage in various new and creative activities such as art therapy, tea sessions and even embroidery. Just like how she has been blessed by Club Rainbow’s services, her hopes and wishes are for Raphael to be a blessing to others and to give back and volunteer with Club Rainbow when he is older.

Club Rainbow recognizes the importance of such caregiver support, and Mdm Mageletchumei has also echoed such sentiments, advising parents to constantly affirm themselves, and to never shortchange their efforts and love poured into their children’s lives.

Mdm Mageletchumei strongly believes that no child’s education should be jeopardized under any circumstances, and advocates for parents to speak up and fight for the rights of their children. This way, children will gain more confidence in themselves. Mdm Carol’s thoughts also resonate with this and advise parents to manage their expectations of children, and most importantly to not be stressed out, as it is ultimately a journey and process at the end of the day.

#IWD2022 Building New Identities

Leaving her job presented an emotional challenge apart from a physical one, especially since Annette had come to know her colleagues as a second family.

“All my colleagues were like my family members,” she told us. “They would ask me about my children, about my exams… That made me feel less alone.”

"To care for a child with special needs is tough; there's an endless number of therapy sessions and medical appointments. Let's not forget that there are long waiting hours to endure, [because of] many circumstances that are unforeseen and can't be helped, like when other children need more attention, so appointment hours [can get] pushed back," she explained. "Daily caring is okay, but when there's an emergency… I was fortunate to have such a supportive boss, who would give me the green light to leave when I had emergencies [with the kids] to take care of."

Given the close-knit community, Annette had found in her working environment, leaving her job felt like losing a part of her that had become central to her identity.

"There's a harmful stereotype of housewives, what we call the 'huang lian po' [yellow-faced women]," she described the image of a poorly dressed and dishevelled middle-aged woman, the belittling colloquial. A term often used at the expense of mothers who were not professionally employed and had left their jobs to take care of their children. "Apart from dealing with the mental and emotional drain and burnouts, sometimes we don't feel respected as mothers. People forget that being a Mom is also a difficult job."

"There are times we feel that we're not living for ourselves, but our children."

This explains why Annette advocates self-care, a practice that helps with her self-esteem. "Self-care doesn't need to be luxurious. Making yourself a cup of coffee after the children have left for school, watching dramas, having a moment to sit in silence when you are done with household chores are all forms of self-care. I like to take some time to ensure that I look presentable for myself. Take the time to ask yourself, 'do I like how I look today?"

Engaging in self-reflection allowed her to appreciate herself better as a parent and a woman. While Annette once found it difficult to reconcile her workplace ambition with the responsibilities she shoulders as a mother, she cheerfully told us that the decision to look after Thaddeus and Jovan proved to be rewarding, as it allowed her to access different platforms to spread awareness on special needs.

"I was in and out of different jobs and companies, so I got to meet different people. Along the way, [I found that] some of my colleagues didn't even know about autism. Many of them had their stereotypes, so this allowed me to let them know autism itself is a spectrum, [some] are less impaired in their daily living skills, [and some] are verbal. Letting [others] know that those with special needs are not that different from us, [I consider that] a blessing in disguise."

But she finds that not everyone can be keen to learn more. When asked about her most significant barrier in being a caregiver for persons with special needs, Annette replied quietly, “the eye of the public”.

"There are people who will label you as a bad parent who doesn't guide your children well, especially when younger. Thaddeus and Jovan can experience meltdowns where they would sit on the road and refuse to move, and people will point their fingers at you."

This worry about societal judgment extended to her concern about seeking help. "There was a long period I was so afraid to ask for help. My situation with Thaddeus and Jovan was so different from other people's. To others, I was just an aunt; they couldn't comprehend why I was doing this."

““Life is unpredictable. We can only make the best of what we have.” ”

— Annette, caregiver of Club Rainbow Singapore

Experiencing rejection from kindergartens and childcare centres was almost "a slap to the face", where she found the legitimacy of her family questioned. "Once they knew that I wasn't their actual parent, I would start to experience a bit of pushback."

This desire to help parents like her enabled her to find her calling. After attaining her diploma in special needs education, Annette became a part-time special needs tutor. She helps special needs students with sensory and regulation issues, work habits, and learning gaps. For her future, Annette aspires to lead a social enterprise employing persons with special needs. She encourages women like her who desire to return to the workplace to develop more skills in preparation for the workforce.

"Life is unpredictable. We can only make the best of what we have." she acknowledged. "Let's live at our own pace and don't compare ourselves to others."

Written by: Rachel Kok Chian Yee
Edited by: Club Rainbow (Singapore)

#IWD2022 Finding Balance in Rocky Waters

Carolyn considers motherhood “a school of hard knocks” like her job. While she enjoyed her career in Corporate Sales and Marketing in the logistics industry for 12 years, her decision to leave her job was motivated by the need to “witness their milestones in detail” when her job left her with only just enough time to “shuttle them from childcare to home”. Although her aspirational image of a mother has always been a “high-powered Working Mom who can multi-task between her job and her children”, Carolyn soon found other considerations that she prioritised.

“I didn’t want them to be ‘transited’ from one classroom (school) to another classroom (childcare centre), every child has their season, and I wanted to be there for each season. I wanted to provide for them not only financially, but also security.”

While the choice was made without regrets, she explained that there were significant changes that she had to adapt to when moving from a career-focused person to a domestic “home minister”.

“The image [of a homemaker] is a lot less glamorous,” she explained, “office jackets were exchanged for just t-shirts and shorts. Office heels were exchanged for slipped-on sandals. I no longer wear make-up as well, as my world centred around my home, supermarkets, their school, and the hospital.”

“Most of all, I no longer have my monthly salary and purchasing power to buy what I want.”

But while she has left her job, Carolyn continues to emulate certain structures of the corporate world at home. “More budgeting is involved in a single-income family,” she told us, “and I’ve found more creative ways to aid the kids in their learning at school.”

When asked about the challenges of her job, Carolyn explained her work was manageable, but it was the demands of motherhood and caring for children with special needs that she struggled.

“There’s a very steep learning curve because parenting does not come with a manual,” she said. “Each of them has their own special needs. Recently, the expectation on a Mom is a lot higher, there are a lot more hats to carry, teachers will ask parents to follow up on their children’s work, and it’s not easy.”

““It’s tough, but it’s also humbling,” ”

— Carolyn shares on her journey in motherhood, caregiver from Club Rainbow

To stay grounded, Carolyn stays connected with friends of similar circumstances from her support groups, where they share their experiences and draw strength from one another’s strategies. She also finds time to catch up with her old friends over coffee or even a quick lunch to establish balance and take time for herself. She also encourages mothers in similar situations to speak to professional counsellors if they need help, which has helped her process her thoughts when she is helpless.

“It’s tough raising a child with special needs because it’s going against [the] mainstream flow,” she told us. “Many don’t seem to understand the struggles of caregivers and children with special needs, and we need to ensure that they encourage and not judge the child’s development.”

She also shared the importance of resilience, a skill she has developed in searching for a Mathematics tutor who can deal with dyslexia and hyperactivity. In this process, she’s been encouraged by many similar mothers, and for that, she is grateful.

“It’s tough, but it’s also humbling,” she spoke on her journey in motherhood. “I’ve learnt that it’s okay, not always to be okay. We can seek help for it. We are not machines; we need to take good care of our mental being to walk a long journey with our children.”

Written by: Rachel Kok Chian Yee
Edited by: Club Rainbow (Singapore)

Choose to be Happy!

“Don’t Worry, Be Happy!”

Everybody tends to say this to someone having a wrong time, but what does happy mean? Is it that easy to be satisfied?

The word happy is generally defined as a feeling of pleasure or contentment. Such feelings could arise from something as simple as eating something delicious or seeing something beautiful; and can be immediately felt by a child who just got a new toy.

So, what do we do when we are having a bad day and finding it challenging to feel happy? Although we are told that it is fine to embrace our negative feelings, we could always go a step further by embracing those bad feelings and then taking action to exchange them for more positive thoughts. A bad day is no reason to ignore all other good parts of life. Many studies have linked happiness to health as a good mood helps us smile more, sleep better, and feel more energetic. 

One easy way to feel pleasure and contentment is to be thankful. I like to keep a gratitude journal to remind myself of things I am grateful for throughout the day. Small mundane things, like the bus arriving on time or remembering to bring an umbrella on a rainy day. By doing so, you will likely realise that you are luckier than you think. I also know someone who practices ‘gratitude hour’ where he spends an hour every Friday sending emails thanking people who helped him throughout the week.

Most people have also heard of the adage – It’s better to give than to receive. While rewarding ourselves, we must also remember that we are all capable of spreading happiness by building a more compassionate world and not forgetting the needy. You could start by gifting to those who need it or volunteering your time, as experiences provide a higher level of happiness than material items.

If there is one particular day each year where we should put in extra effort to purge all negative emotions from our system, that would be 20 March, also known as the International Day of Happiness. First celebrated on 20 March 2013, the United Nations General Assembly established the International Day of Happiness to make people worldwide realise the importance of happiness in their lives. Building on the idea, the United Nations also launched 17 Sustainable Development Goals aiming to eradicate poverty, reduce inequality and protect our planet to make people’s lives happier. (More information can be found here: https://www.undp.org/sustainable-development-goals)

Here at Club Rainbow, we hope that our beneficiaries can live as happily as possible despite the challenges they face in their lives. In conjunction with this year’s International Day of Happiness, we would appreciate your support for our efforts to make this world a better place for children in Singapore living with chronic illnesses. Actions matter, and you can make happiness a choice every day!

Written by: Tang Su Yen
Edited by: Club Rainbow (Singapore)

---

We welcome volunteers to support our beneficiaries and passionate individuals who like to kickstart creative fundraising initiatives. Email us at crscpm@clubrainbow.org to start your journey with us today! Other ways you can be part of - https://www.clubrainbow.org/take-action.

#IWD2022 Managing Expectations in Her Sail

13 years in customer service is no mean feat, so we had to ask Anisah about her secret to building confidence and resilience in her career. She attributed it to being equipped with the proper skill sets.

"I was very fortunate to be given a proper traineeship program, learning from the basics, which helped my interest in aviation customer service grow," she reminisced. "I took pride in my work even if I was the lowest in rank because I knew that I would only enjoy my work if I learned more and fell in love with all parts of the job."

“years in customer service built greater empathy in her,
a human touch on a global scale.”

— Mdm Anisah

She explained that her years in customer service built greater empathy in her, and she described it as a "human touch on a global scale".

"Once you put on the uniform, you need to help the customer to the best of your abilities. Putting yourself in the customer's shoes, if you encountered such a problem, you may feel very lost and need someone to help you with it."

Her work taught her that seeking help was not something to be ashamed of, and she drew strength from her seniors at work, who were also mothers. "I felt that if they could manage to be a working Mom, so could I." But her life experienced a turning point when Aniq was diagnosed with autism, and Anisah's priorities shifted to taking care of and spending more time with her family.

Time management was a skill she brought with her even as she left her job. "Becoming a Stay-at-home Mom means that I need to plan my own time. I was very used to the rostering system at work, so once I became a housewife, I realized I had to do the same myself to be punctual and efficient. I even set my alarms to remind myself what to do at what time," she told us with a laugh.

One thing that never changed was Anisah's dedication to being mindful of taking time for the whole family. She explained that her decision to leave her job was also rooted in her desire to watch her children grow up since she found the first seven years of childhood a significant period for the parent-child bond. While Aniq's condition meant that she had to spend more time with him, Anisah was also careful planning time for her other children. As her two youngest children are 5 and 2 years old, Anisah taught her two older children how to look out for Aniq and communicate with him, enabling the siblings to grow much closer in recent years.

In this process of learning, Anisah understood the need to be flexible, especially in providing care for persons with special needs—and to her, that meant embracing all of Aniq.

"Embracing means accepting everything about him wholeheartedly, including the things you cannot change. Having goals for your kids is important, but since they are your goals, you cannot always expect that they will definitely be fulfilled. The goal may not always be suitable for him. You must be flexible because you plan for them, and don't give up on them."

Such flexibility enabled her to consider Aniq's needs when the family had to leave home for certain events such as weddings and gatherings or even spend time together. Decisions on places to go are often limited by Anisah's perception of the safety of the environment and the physical friendliness and unwanted judgment.

"It got more difficult to manage as he got older. As a child, people won't say anything about it. But as he grows up, people will ask, 'Why is he still acting like a child? Why haven't you taught him how to behave properly?' When we go out, I need to consider these things because many people don't understand what he's experiencing, and I'd rather prevent him from being questioned."

She explained that not being able to perceive his condition visually increased the level of judgment from others. "People are a lot more sensitive when the disability is visible, but when they cannot see it, they make assumptions like, 'Oh, he's just spoilt'. As he got older, people started using even harsher words. I don't want to expose him to such comments."

The amount of pressure she experiences daily led her to find different outlets to take time for herself. Anisah tells us that she cherishes her daily morning walks, which she takes after her children have been sent to school. She is also thankful for the support from her husband, who frequently shows his concern for her mental well-being and spends time with her outside when the children are occupied.

"Being a Mom is a skill, not just a responsibility. You need to listen to your own body. If you need time off, you can take some time off. For me, it's going grocery shopping with my husband." - Anisah

Written by: Rachel Kok Chian Yee
Edited by: Club Rainbow (Singapore)

#IWD2022 Captains Of Their Own Destiny

In their lifetime, they undertake many roles – the disciplinarian, the teacher, the chef, the housekeeper, the doctor; the list goes on. However, far less is discussed on their roles as daughters, as wives and as employees, and the challenges that transitioning between roles may bring. For Annette, Anisah and Carolyn, this role, which never came with an instruction manual, presented an added challenge when they discovered that their children had special needs.

This month, in celebration of International Women's Day, we sat down with three caregivers of Club Rainbow's young beneficiaries to discuss how they came into their own and took charge of their direction in life, both at home and beyond their families.

MOM AT THE HELM

After 13 years as a Customer Service agent in the aviation industry, Anisah left her job to take care of her children, especially considering her son Aniq's special needs. Her resolve in this move was cemented when her helper ended her contact with the family.

"Two months after my helper left, I told my husband, 'Something needs to be let go'," she recounted. "I wanted to let him concentrate on his responsibility to provide for the family, and shortly after we discussed this, I tendered [my resignation]. It's a big decision that came with a lot of sacrifices, but I don't have any regrets because I knew I wanted to spend time with my children as they grew up."

Similarly, Carolyn used to be a working mother, where she occupied a client-facing position in Corporate Sales and Marketing in the logistics industry. She remembered fondly that a day in her life included fulfilling client appointments, talking to customers to manage service issues, and troubleshooting to bridge the gap in communication between clients and her company's Operations department.

Caring for three young children with special needs, Lucas, Jonas and Titus, took an inevitable toll on her health. She eventually elected to leave her job as she was concerned about adhering to her strong work ethic and providing high service quality. "There is a steep learning curve that comes with managing newborns with children," she told us. "I had to juggle time between the hospital and home, keep the boys apart when one of them were infected with illnesses, and there was so much to learn, [not just about] managing young children, [but also about] medical conditions and tests."

At the age of 25, an age that most young women would prefer focusing on their work opportunities, Annette took her brother's two kids under her wing and, a few years later, under her roof. As the main caregiver of Thaddeus and Jovan today, the brothers have been living with Annette and her family since 2018 as a permanent arrangement with limited parental involvement. Annette's son, Jeryl, now recognizes Thaddeus and Jovan as his brothers and vice versa.

When she was pregnant with Jeryl in 2013, Annette found working full-time managing two children and her pregnancy was very taxing. She had also just joined a new company in the supply chain industry upon completing her part-time degree in Supply Chain Management. While her supportive work environment moved her, Annette eventually left her position as a Supply Chain Executive for a more balanced family life. When asked about her strengths, Annette grappled with that question.

"I think [many] mothers don't know where our strengths lie," she said. She explained that it resulted from a constant feeling of 'Mom guilt', the pervasive sense of not doing enough for their children that many parents experience. "But even if we don't see [them], [as] we take care of our kids; we are developing our strengths. We need to remember that we're already doing a lot more than we thought we could before."

Carol had similar thoughts. While she found it difficult to identify her strengths, she candidly told us that her working experience had made her a "firefighter" in her resilience. She likened any issue to a "service failure". "It's the idea to pick myself up and keep going, no matter how difficult [it is]," she said.

As for Anisah, she believes that "attitude determines results", and shared how having a positive mindset enabled her to influence her other four children not to think negatively of their brother when he was experiencing meltdowns. "Being a positive thinker doesn't mean avoiding all negativity, but acknowledging that it is a challenge and learning how to tackle issues instead of complaining about them."

THROUGH THICK AND THIN

When asked about the changes needed for a more inclusive community, Annette emphasized that we need to develop greater humanity and reduce stereotyping behaviour. 

“We may be losing a sense of humanity as we enter the digital era,” she explains. “The human touch is important for the special needs community. I think that education is just the first step. To promote inclusivity, we need to understand that we are all similar.”

“I urge all preschool teachers to be trained in special needs because there is a wide group of special needs people; we cannot lump them altogether. Even within the autism community, we understand that there is a wide spectrum, and so do the other communities, for down syndrome, dyslexia, ADHD, et cetera. As a society, we need to be more careful when addressing people who are not neurotypical and understand that there is still a lot to learn about others.”

Similarly, Carolyn shared that systems and social norms can be improved. “I think we need to shift our mindset; just because something is not mainstream doesn’t make it a failure.”

She explained that there was a long period when she could not find a place to school, Jonas, and was challenged by non-inclusive preschools. As a result, Jonas had to switch preschools three times in three years, and the worry that he was not in a supportive and caring environment left her constantly on her toes.

“For now, we depend on teachers and parents to make a difference,” she said. “There is a need for better parent-teacher communication networks so that both parties can be better aligned on students with special needs. Better home-school support can also empower our children.”

Anisah believes that focusing on what persons with special needs can do compared to what they cannot do can promote greater inclusivity.

“We need to reduce judgment,” she highlighted. She encourages the public to approach parents with special needs children if they are interested to learn more about them.

“Stop looking at their disabilities, and instead focus on their abilities. Maybe someone has autism, and they may not communicate well, but they can draw, play instruments, and take instructions in their own way. If you can listen and relate to them, you will be able to include them.”

Written by: Rachel Kok Chian Yee
Edited by: Club Rainbow (Singapore)

Support is a two-way street.

The Caregiver Support Group programme (CSG) provides support to families of children belonging to three different chronic illness groups, namely rare genetic disorders (RGN), neurological, and autism spectrum disorder (ASD).

Past activities in 2018 and 2019 include a romantic dinner to give parents quality time away from their children and equine therapy, which is an experiential treatment that promotes emotional healing in typically ASD sufferers – through activities with horses.

From June to July 2020, the CSGs had to be held online due to the pandemic, but the effectiveness wasn’t compromised, as evident from the name of the event, ‘Finding my strengths at home’.

The programme was facilitated through two different platforms – the main programme for the three respective CSGs was conducted on Microsoft Teams, and the second was conducted on WhatsApp.

Caregivers who missed the main programme due to their busy schedule were given resources with the contents of the programme and subsequently asked to share their reflections and takeaways in a facilitated WhatsApp group.

During the main programme, the facilitators taught coping skills such as breathing exercises. Apart from imparting skills, the caregivers were asked to identify their 'resource person' – persons who provide formal and informal support, respectively – to realise the importance of a support system on this journey.

Most of the caregivers were able to identify at least two resource persons in their life, with the most common answers being family members and friends.

“I felt relaxed as I recalled the past (when) my late mother spurred me to focus on positivity (no matter what) happens to my child,” a participant shared.

As a caregiver, self-development is oftentimes neglected due to the huge portion of their time dedicated to caring for their child. During the programme, the caregivers were tasked to identify their strengths and develop their strength plans.

Love, love of learning, and flexibility were among the commonly identified strengths. The identification of one’s strengths allows for a better understanding of oneself and self-development.

Reflection on the programme, a caregiver shared, “It was a good break from the daily routine of caregiving to connect with other parents and a good reflection time to remember things which I have experienced before and reconnect them again”.

A continuation from the previous years’ CSG, the 2021 virtual edition focused on emotional coping strategies.

---

Interested in supporting Club Rainbow, do write in to crscpm@clubrainbow.org.

What is Biliary Atresia?

By Rachele Foo, Content Contributor

Jannah is seven this year, and just like every other seven-year-old, she started her first year of primary school. There, she makes friends, study hard and participates in physical activities. At home, however, her mother, Mdm Ida, is especially concerned about Jannah’s health. That is because Jannah was diagnosed with Biliary Atresia when she was just one month old and had to undergo a liver transplant at nine months.

What is Biliary Atresia?

Biliary Atresia is a condition where bile ducts become blocked. This results in the bile, which is needed to break down fats during digestion and carry away waste, being unable to leave the liver, damaging it. This condition only occurs in infants, and it is very rare, affecting 1 out of 20,000 infants. The treatment for this condition is the Kasai Procedure which involves removing the blocked bile ducts and connecting the small intestine to the liver. If it is not successful, a liver transplant is needed.

When Jannah was diagnosed with this condition, Mdm Ida felt completely at a loss. She had never expected that her daughter would be sick and had never even heard of or knew of anyone who suffered from this condition. The doctors told her that there were survivors, but she was not fully convinced, especially after seeing how the first operation, the Kasai Procedure, did not make her daughter better. She was also suffering from guilt. She was worried that her having Jannah at a later age was the cause of this. Luckily then, she met another mother who went through what she did and was introduced to a support group where others shared their experiences. There, she learnt that the condition was neither caused by her late pregnancy nor what she did when she was pregnant nor was it hereditary.

As she raised Jannah, one of the greatest challenges that Mdm Ida faced, was having to use a tube to feed Jannah when she was just a baby. She had to muster all her courage and force herself to insert the tube, even as her baby cried and tried to pull it out as she had to ensure that Jannah reached an ideal weight for the liver transplant.

Thankfully, the liver transplant went smoothly, and a while after the operation, Jannah did not need the tubes anymore. However, Mdm Ida remained extremely careful. That is because Jannah falls sick easily, and the symptoms are often more severe, resulting in hospitalisation. This was one of the reasons why going out, something so ordinary for the rest of us, was complicated for Jannah and Mdm Ida. For example, when Jannah was younger, before heading out, Mdm Ida had to ensure that the stroller was fully covered to protect her from the natural elements and germs.

Now, Jannah’s condition is improving, and that is what Mdm Ida is happiest about.

As she looks back, she is grateful for all the support they had received, including the help from Club Rainbow. She was especially thankful for the social worker who went over and beyond to help her reach out to Jannah’s school to ensure that Jannah could borrow a laptop in case of home-based learning. Mdm Ida also looks forward to the activities planned by Club Rainbow, such as storytelling, as she believes that it provides an excellent opportunity for Jannah, allowing her to interact with more children of the same age as well as to gain exposure.

When thinking about the future, though, Mdm Ida is still worried. She worries about who will take care of Jannah when she is gone and about Jannah not having insurance due to her condition. This means that they might have to rely only on subsidies which would create a substantial financial burden.

Lastly, Mdm Ida hopes that there could be greater awareness of Biliary Atresia so that others could understand her situation better and not judge so quickly. Still, she knows that this will take time. In the meantime, she encourages all parents going through similar experiences to stay strong and positive and seek comfort in support groups.

Source: https://www.nuh.com.sg/Health-Information/Diseases-Conditions/Pages/Biliary-Atresia-(Children).aspx

Riding The Tide Together

by Rachel Kok Chian Yee, Content Contributor

Madam Dalia’s fears for her daughter’s health first arose when the doctor informed her of the need to perform a blood transfusion for Eryqha a day after birth.

“They told me that since she was born, she has been vomiting, and her jaundice levels hit 400 plus already, so they had to send her for blood transfusion and into inter-care…” she recounted shakily, “until now, she’s suffered a lot.”

Nine-year-old Eryqha was diagnosed with a blood disorder where red blood cells are spherical instead of concave in shape, impairing oxygen transport and delivery to the body, leading to anaemia and jaundice, among other conditions. For Eryqha, this means frequent fatigue and low immunity, which have impaired her school and daily experiences.

“After blood transfusions, we have to monitor her condition,” Madam Dalia explained, “if she turns yellow or has a fever, she’ll be admitted [to the hospital].”

She went on to describe situations in which Eryqha would be overwhelmed with fatigue and stop playing with her siblings altogether, one of the earliest symptoms of her deteriorating condition after blood transfusions.

For Madam Dalia, Eryqha’s condition is not new to her, having lived with blood disorders herself. While her other two children may have presented similar symptoms, Eryqha’s condition remains the most severe one. 

“She [has already had] her gall bladder removed, and now they’re [monitoring the need] to remove her spleen. We [continue to] pray hard that she [doesn’t] get feverish. When she gets [a] fever, it becomes more difficult [for her].”

Staying afloat in troubled waters

Currently, Eryqha is a Primary 3 student. When asked about her academic and social experiences, her mother responded that Eryqha really enjoys school.

“Whenever she [is] admitted [to the hospital], she [would] always ask about homework. She loves to go to school.”

While her teachers have been informed of her health condition, her peers may raise questions on her health, especially when her symptoms become visible. Given her enrolment in a mainstream school, the implications of her condition remain foreign to most young students, often leading Eryqha to become somewhat self-conscious, consulting her parents during these confusing situations.

“She would tell me, ‘Mommy, my friends asked me why my eyes are yellow’,” Madam Dalia related, “so I [would] tell her, ‘don’t bother [about it], you go to school to study and be a good student, don’t worry about what people [may] say’.

According to Madam Dalia, she is thankful that Eryqha does not take these comments from her peers to heart and chooses to focus her efforts on her schoolwork. At the same time, while she can mostly attend her classes in school, her participation in physical education lessons can be challenged by her health at times.

“She can’t [really participate in sports]. We have a letter [from the doctor that says] that she can’t do heavy-duty exercises, like jumping.”

All hands on deck

In the face of adversity, Eryqha remains undeterred in school and in social situations, choosing to be optimistic and excited about life. Her mother recounted a particular episode where their family had an outing to the Trick Eye Museum. She was heartened by how excited Eryqha was as she interacted with the exhibitions, especially since this outing had been long-awaited by the family. But perhaps no memory is as indelible as Eryqha’s expression of gratitude towards her mother, a gesture that deeply moved Madam Dalia.

“On my birthday, she made me a card,” she narrated tearfully. “She said, ‘thank you for taking care of me, thank you for feeding me.”

Eryqha lives with her parents, grandmother and two siblings, where a regular day for her consists of going to school, painting, and playing with her siblings and pet cat. The family’s income was badly affected by the CoVid’19 pandemic, where her father’s earnings as a taxi driver hit an all-time low. However, due to the family’s need for a flexible schedule, it is challenging to search for other occupations.

“If he has the type of job that [requires him to be out all] day, I [won’t be able to] handle [the household] on my own,” Madam Dalia explained, “[we need to] fetch the kids in the morning, fetch Eryqha, and I need to take care of my mother-in-law too. If [he had] a monthly [paying] job, [there] could be [higher income] for us, but if I have to do everything myself, I really can’t manage.”

A beacon of light

When the pandemic first hit Eryqha’s family, Club Rainbow provided financial aid to assist them in coping with the ramifications on the family’s income. Eryqha is also a recipient of the Club Rainbow Bursary Award as part of the Rainbow Academic Support Programme, as a recognition of her outstanding performance in school despite her medical condition.

Currently, Club Rainbow provides the family with food rations and other amenities, as well as support from Club Rainbow social workers. When asked how Eryqha has been dealing with the pandemic, Madam Dalia conveyed how thankful she was to have a thoughtful and sensible daughter in Eryqha.

“She’s very understanding, very humble,” she told us. “She knows that her parents [have] financial problems, so she doesn’t [ask for much]. So when we have plan[s] to bring them for [an] outing, [we’re] happy for them. […] We can see… how happy she is, when [we have an outing].”

 Above all, Madam Dalia is hopeful that her daughter’s medical condition will improve with time. As someone whose loved one is suffering from a blood disorder, she seeks solace from prayer and support from her family.

“I think as parents we cannot give up,” she emphasized, “we must be patient, [and we shouldn’t] scold [the children] because they never asked to be born with the illness.”

“Sometimes people will [tell us], ‘I don’t think she’ll get better, but you’ll never know, maybe someday she’ll be okay? So as parents, I think [we don’t have to feel] regretful [or] disappointed. For us, we don’t have such thoughts; we will follow the flow and hope the best for her.”

---

RACHEL KOK

a marketing university student in Singapore who loves bubble tea and coffee more than anything. She also enjoys music and film, and tries her best to read as much as she can.

As a language lover, she is proficient in English, Mandarin and Japanese, and enjoys the occasional debate about the areas these 3 languages have in common, especially when it comes to dissecting song lyrics.

Rachel identifies her purpose in life as engaging with like-minded people and bringing joy to others through her words.

Love is Never Rare; Rare is Endless Love

by Rachel Kok Chian Yee, Content Contributor

As a 12-year-old, Umaira enjoys going to school and meeting with her friends, listening to relaxing music and taking walks at the park. One of Umaira’s most striking traits is her carefree nature and her excitement towards meeting others, a testament to her desire to be undeterred in her daily social interactions despite living with Global Developmental Delay and multiple congenital anomalies. 

Umaira has weak lower limbs and balancing issues as such; she needs assistance in her mobility. She is also non-verbal and requires the need for diapers.

We spoke to Umaira’s mother, Madam Noorliah, to find out more about Umaira’s daily life.

1. How does a day in the life of Umaira look like? 

Umaira attends a special education school and loves seeing her classmates. Even though she is non-verbal, she loves interacting with people. She also likes watching Didi & Friends, watching me cook every day and taking walks at the park below our house. I feel so blessed to have Umaira in my life. This journey is not easy for us, but I believe things will work out well as God will take care of us and plan for our lives.

2. As Umaira’s primary caretaker, can you tell us what your greatest concern is for her?

I am most concerned about her eating difficulties. I separate the dishes every meal for her and feed her in small portions as she has a cleft palate, and we have to remind her to chew and eat slowly so that she does not choke on her food. She also has flat feet and tires easily when walking, so we usually use the wheelchair for her safety when we are out. It is not easy because she is non-verbal, but we always do our best.

3. How has life been like since CoVid-19 at home?

Life after CoVid-19 has changed a lot for my family since we cannot leave the house as much as we used to, mainly because Umaira does not like wearing masks. It is quite risky for Umaira as her immunity is not strong, and she can easily get sick. We try to avoid malls and crowded places and keep adhering to the safe distancing guidelines and monitoring our health. We will keep praying for good health and safety. 

4. How is it like for Umaira to be a part of Club Rainbow?

I want to thank my social worker Janeth from Club Rainbow, for her great help. She has helped us a lot ever since we joined Club Rainbow. Through Janeth, we have been able to seek speech therapy, physiotherapy and play therapy for Umaira, and I can see that the therapy sessions have been greatly beneficial to Umaira. Janeth has also helped us with food rations, getting diapers and applying for bursaries for Umaira. This has helped us a lot as Umaira is usually in a wheelchair, and it has been easy to communicate with drivers on this. I feel blessed and am thankful for Club Rainbow for bringing colour and sunshine into Umaira’s life.

Thank you, Janeth, for being so thoughtful and showing concern for Umaira and my family all these years.

---

Rachel Kok

a marketing university student in Singapore who loves bubble tea and coffee more than anything. She also enjoys music and film, and tries her best to read as much as she can.

As a language lover, she is proficient in English, Mandarin and Japanese, and enjoys the occasional debate about the areas these 3 languages have in common, especially when it comes to dissecting song lyrics.

Rachel identifies her purpose in life as engaging with like-minded people and bringing joy to others through her words.