When her son Waleed was born, Juanita Mega had the same wishes for him as for her two older kids – healthy children, laughter-filled milestones and a bright future. However, early signs pointed to a different path.
“He didn’t cry when he was born,” the 55-year-old recalled. “The initial struggles were a blur – not being able to hold him when he arrived and I felt numb seeing him with tubes at the Neonatal Intensive Care Unit [NICU] at 1.25kg.
“He was perfect, yet so tiny and fragile.”
Juanita went into premature labour at 28 weeks and had an emergency Caesarean delivery. Waleed suffered intracranial bleeding, known as intraventricular haemorrhage (IVH).
IVH is most common in premature babies born less than 35 weeks or who are less than 1.5kg at birth. It happens because the blood vessels in premature babies’ brains aren’t fully developed and are, therefore, fragile.
Waleed went home after 101 days in the NICU. By the time he was 18 months old, he had had two operations to deal with the brain bleed and one more to reshape his skull.
The operations took a huge toll on Waleed’s body and the aftercare was critical. He was in pain and his parents were stunned, numb, sad and found it hard to cope.
“The tubes, the lines, his crying, not wanting to eat at times,” Juanita recalled. “There was a lot of trauma on his body and he became afraid of even a little finger prick.”
When her son was born, Juanita hoped he would get better but had “a moment of awakening” when he was two, that caregiving would become a central part of her life. (Photo: Juanita Mega)
Juanita was the main caregiver as her husband travelled often for work. Although she had a helper, she did most tasks, such as giving him medication and staying up with him if he had a fever.
“I found it hard to let go too as he was fragile,” she said.
She was also looking after her other son, who is a year older than Waleed, as well as a daughter.
Over the years, there have been check-ups, hospital stays, as well as runs to the emergency department. Because he was a premature baby, Waleed was more susceptible to getting infections. When he was younger, he also had febrile seizures for about a year.
When he was three, Waleed was diagnosed with global developmental delay, a condition that presents with below-average intellectual functioning as well as impairment in several areas of development.
Juanita dreams of inclusive spaces where her son can thrive, contribute and be celebrated for how far he has come. (Photo: Juanita Mega)
Waleed is now 17. His learning, writing and motor skills have been affected. For example, he still can’t tie his shoelaces. And, because the bleed was on the left side of his brain, the right side of his body was affected.
“When you look at him at a glance, apart from walking with a slight limp, he looks alright,” Juanita told CNA Women. “He can chat with others and take the bus home but he cannot focus on certain tasks for too long.”
Juanita had to cope with her enormous caregiving responsibility. She felt lonely and had “a sense of emotional desolation which I did not know how to describe”.
‘One day at a time’ was the mantra she lived by.
There were also many moments when she felt invisible, as systems failed to see the caregiver behind the child.
“The doctors, therapists and counsellors were focused on him and I don’t remember anyone asking how I was doing, besides the cursory ‘how are you’ and ‘you have been doing amazing as a mum’,” she revealed. “I put on a brave front and even my immediate family members didn’t know exactly what I was going through.”
It was only when Juanita experienced caregiver burnout in 2018, when Waleed was 10, that she finally spoke out and asked for help.
This was the culmination of a decade of struggling with the load of physical and emotional labour without much help. She admitted that her marriage was strained as the couple handled the stress of their special-needs son in their own way.
Worrying about Waleed “haunted” her for years. She didn’t sleep well as she was anxious he’d have a seizure. On top of her son’s numerous doctors’ appointments, Juanita also had to deal with him struggling at school.
“I kept to myself even more, burying myself in work; thankfully I did fine on that front,” she said. “I felt alone and I started to get angry. I resented this position we were in and questioned God.”
Juanita has had “earth angels” throughout her caregiving journey, such as her current helper (top left). (Photo: Juanita Mega)
Once she reached out to others, her closest friends provided the initial support and shoulder to cry on. She later shared more with her immediate family and this lessened the weight of her burden. She has a daughter from her first marriage, who is now 27, as well as a 29-year-old stepdaughter.
Juanita admitted she also had to recalibrate her expectations and reshape them with a sense of responsibility, love and resilience. This morphed into advocacy over time, especially when it came to Waleed’s education.
For example, she needed Waleed’s teachers to understand that while he had his challenges, he shouldn’t be written off. At one kindergarten, Waleed was called out at a parent-teacher conference for not being able to cut along a straight line with scissors. It took longer for him to learn this but he could do it as he grew older.
Talking to her immediate family, such as her daughter (middle) and stepdaughter (right), helped to lessen the weight of her caregiving burden. (Photo: Juanita Mega)
Juanita said she would skip these conferences as “they were disheartening and certainly not meaningful in helping my kid level up”.
Waleed eventually settled in a mainstream kindergarten which had other special-needs children in the class, with trained special-needs teachers. He is now studying in a vocational school.
Juanita worked in the education and training space, and her career suffered because of her caregiving responsibilities. She has worked part-time for well over a decade. Additionally, she’d always wanted to further her studies but couldn’t do so as she “did not have the mind space” for it.
“I also felt incredibly guilty if I did all these things for myself and something happened to Waleed – how would I answer to myself?”
Juanita’s family (from left): Waleed, with Juanita’s other son and daughter, and nine-month-old granddaughter. (Photo: Juanita Mega)
Over the years, she missed so many social gatherings that some acquaintances eventually stopped asking her to join them.
“I feel like I have forgotten myself, my identity,” she said. “I’ve hardly had any personal time to truly relax and feel free. I felt guilty for spending less time with my older son and daughter. And my marriage took a back seat.”
However, she admitted that, as she looks back, she has gained something profound in the process – a sense of purpose, a deeper empathy and a connection with her son that transcends words.
“There are moments of frustration, of course, but caregiving reshaped my identity,” she said. “Not as a loss but as a redefinition of what success and fulfilment mean to me. This process was a journey in itself.”
Juanita found strength in faith. Her mother also helped out when she could and there were “earth angels” such as nurses, doctors, counsellors, therapists and co-workers who stepped in when she needed extra support.
Kindness also arrived in the form of David Harrison, the then-CEO of global financial training provider Intuition, who let her work one day a week from home around 2009, so she could watch her kids. He advised her against resigning and to stay in touch with the business world.
“The short work week helped me to shift focus,” said Juanita. “I slowly worked up from one day a week, to two days then three days, over time.”
Juanita has found strength in her son’s spirit and especially his resilience and laughter. He is pictured here with his niece. (Photo: Juanita Mega)
Her son’s spirit was also an inspiration. “His joy, his resilience and laughter – he has a funny bone and the family bursts into laughter when he says something witty or humorous at the least expected times. We’ve had some hilarious moments.”
Juanita now wants to spread the word about caregiving and the difficult journeys that caregivers go on. She described it as not just a duty or a responsibility but a vocation.
She noted that caregivers often live in dual worlds – one of fierce advocacy as they speak up for their loved ones and fight for a better life for them in the future, and one of quiet surrender to what they have been presented with.
“I wish more people could see and appreciate the invisible labour, the emotional toll and the strength it takes to show up every day with love, putting on a brave face,” said Juanita.
As for Waleed, she dreams of inclusive spaces where he can thrive, contribute and be celebrated for how far he has come. She wants him to live a life of dignity, joy and connection, as well as to keep healthy.
“I do worry about him still and I wonder who will take care of him when I’m gone,” Juanita said. “I’ve done my best in preparing his siblings to help him too. They’re good kids and I leave the rest to God.
“My dreams for Waleed are rooted in possibility, not perfection. I’ve learned to honour his unique self, his strengths and the rhythm he operates in.”
CNA Women is a section on CNA Lifestyle that seeks to inform, empower and inspire the modern woman. If you have women-related news, issues and ideas to share with us, email CNAWomen [at] mediacorp.com.sg.
Continue reading...
“He didn’t cry when he was born,” the 55-year-old recalled. “The initial struggles were a blur – not being able to hold him when he arrived and I felt numb seeing him with tubes at the Neonatal Intensive Care Unit [NICU] at 1.25kg.
“He was perfect, yet so tiny and fragile.”
Juanita went into premature labour at 28 weeks and had an emergency Caesarean delivery. Waleed suffered intracranial bleeding, known as intraventricular haemorrhage (IVH).
IVH is most common in premature babies born less than 35 weeks or who are less than 1.5kg at birth. It happens because the blood vessels in premature babies’ brains aren’t fully developed and are, therefore, fragile.
Waleed went home after 101 days in the NICU. By the time he was 18 months old, he had had two operations to deal with the brain bleed and one more to reshape his skull.
The operations took a huge toll on Waleed’s body and the aftercare was critical. He was in pain and his parents were stunned, numb, sad and found it hard to cope.
“The tubes, the lines, his crying, not wanting to eat at times,” Juanita recalled. “There was a lot of trauma on his body and he became afraid of even a little finger prick.”
When her son was born, Juanita hoped he would get better but had “a moment of awakening” when he was two, that caregiving would become a central part of her life. (Photo: Juanita Mega)
Juanita was the main caregiver as her husband travelled often for work. Although she had a helper, she did most tasks, such as giving him medication and staying up with him if he had a fever.
“I found it hard to let go too as he was fragile,” she said.
She was also looking after her other son, who is a year older than Waleed, as well as a daughter.
Over the years, there have been check-ups, hospital stays, as well as runs to the emergency department. Because he was a premature baby, Waleed was more susceptible to getting infections. When he was younger, he also had febrile seizures for about a year.
When he was three, Waleed was diagnosed with global developmental delay, a condition that presents with below-average intellectual functioning as well as impairment in several areas of development.
Juanita dreams of inclusive spaces where her son can thrive, contribute and be celebrated for how far he has come. (Photo: Juanita Mega)
Waleed is now 17. His learning, writing and motor skills have been affected. For example, he still can’t tie his shoelaces. And, because the bleed was on the left side of his brain, the right side of his body was affected.
“When you look at him at a glance, apart from walking with a slight limp, he looks alright,” Juanita told CNA Women. “He can chat with others and take the bus home but he cannot focus on certain tasks for too long.”
BECOMING A STRONG ADVOCATE FOR HER SON
Juanita had to cope with her enormous caregiving responsibility. She felt lonely and had “a sense of emotional desolation which I did not know how to describe”.
‘One day at a time’ was the mantra she lived by.
There were also many moments when she felt invisible, as systems failed to see the caregiver behind the child.
“The doctors, therapists and counsellors were focused on him and I don’t remember anyone asking how I was doing, besides the cursory ‘how are you’ and ‘you have been doing amazing as a mum’,” she revealed. “I put on a brave front and even my immediate family members didn’t know exactly what I was going through.”
It was only when Juanita experienced caregiver burnout in 2018, when Waleed was 10, that she finally spoke out and asked for help.
This was the culmination of a decade of struggling with the load of physical and emotional labour without much help. She admitted that her marriage was strained as the couple handled the stress of their special-needs son in their own way.
Worrying about Waleed “haunted” her for years. She didn’t sleep well as she was anxious he’d have a seizure. On top of her son’s numerous doctors’ appointments, Juanita also had to deal with him struggling at school.
“I kept to myself even more, burying myself in work; thankfully I did fine on that front,” she said. “I felt alone and I started to get angry. I resented this position we were in and questioned God.”
Juanita has had “earth angels” throughout her caregiving journey, such as her current helper (top left). (Photo: Juanita Mega)
Once she reached out to others, her closest friends provided the initial support and shoulder to cry on. She later shared more with her immediate family and this lessened the weight of her burden. She has a daughter from her first marriage, who is now 27, as well as a 29-year-old stepdaughter.
Juanita admitted she also had to recalibrate her expectations and reshape them with a sense of responsibility, love and resilience. This morphed into advocacy over time, especially when it came to Waleed’s education.
For example, she needed Waleed’s teachers to understand that while he had his challenges, he shouldn’t be written off. At one kindergarten, Waleed was called out at a parent-teacher conference for not being able to cut along a straight line with scissors. It took longer for him to learn this but he could do it as he grew older.
Talking to her immediate family, such as her daughter (middle) and stepdaughter (right), helped to lessen the weight of her caregiving burden. (Photo: Juanita Mega)
Juanita said she would skip these conferences as “they were disheartening and certainly not meaningful in helping my kid level up”.
Waleed eventually settled in a mainstream kindergarten which had other special-needs children in the class, with trained special-needs teachers. He is now studying in a vocational school.
‘CAREGIVING RESHAPED MY IDENTITY’
Juanita worked in the education and training space, and her career suffered because of her caregiving responsibilities. She has worked part-time for well over a decade. Additionally, she’d always wanted to further her studies but couldn’t do so as she “did not have the mind space” for it.
“I also felt incredibly guilty if I did all these things for myself and something happened to Waleed – how would I answer to myself?”
Juanita’s family (from left): Waleed, with Juanita’s other son and daughter, and nine-month-old granddaughter. (Photo: Juanita Mega)
Over the years, she missed so many social gatherings that some acquaintances eventually stopped asking her to join them.
“I feel like I have forgotten myself, my identity,” she said. “I’ve hardly had any personal time to truly relax and feel free. I felt guilty for spending less time with my older son and daughter. And my marriage took a back seat.”
However, she admitted that, as she looks back, she has gained something profound in the process – a sense of purpose, a deeper empathy and a connection with her son that transcends words.
“There are moments of frustration, of course, but caregiving reshaped my identity,” she said. “Not as a loss but as a redefinition of what success and fulfilment mean to me. This process was a journey in itself.”
THE INVISIBLE LABOUR OF CAREGIVERS
Juanita found strength in faith. Her mother also helped out when she could and there were “earth angels” such as nurses, doctors, counsellors, therapists and co-workers who stepped in when she needed extra support.
Kindness also arrived in the form of David Harrison, the then-CEO of global financial training provider Intuition, who let her work one day a week from home around 2009, so she could watch her kids. He advised her against resigning and to stay in touch with the business world.
“The short work week helped me to shift focus,” said Juanita. “I slowly worked up from one day a week, to two days then three days, over time.”
Juanita has found strength in her son’s spirit and especially his resilience and laughter. He is pictured here with his niece. (Photo: Juanita Mega)
Her son’s spirit was also an inspiration. “His joy, his resilience and laughter – he has a funny bone and the family bursts into laughter when he says something witty or humorous at the least expected times. We’ve had some hilarious moments.”
Juanita now wants to spread the word about caregiving and the difficult journeys that caregivers go on. She described it as not just a duty or a responsibility but a vocation.
She noted that caregivers often live in dual worlds – one of fierce advocacy as they speak up for their loved ones and fight for a better life for them in the future, and one of quiet surrender to what they have been presented with.
“I wish more people could see and appreciate the invisible labour, the emotional toll and the strength it takes to show up every day with love, putting on a brave face,” said Juanita.
As for Waleed, she dreams of inclusive spaces where he can thrive, contribute and be celebrated for how far he has come. She wants him to live a life of dignity, joy and connection, as well as to keep healthy.
“I do worry about him still and I wonder who will take care of him when I’m gone,” Juanita said. “I’ve done my best in preparing his siblings to help him too. They’re good kids and I leave the rest to God.
“My dreams for Waleed are rooted in possibility, not perfection. I’ve learned to honour his unique self, his strengths and the rhythm he operates in.”
CNA Women is a section on CNA Lifestyle that seeks to inform, empower and inspire the modern woman. If you have women-related news, issues and ideas to share with us, email CNAWomen [at] mediacorp.com.sg.
Continue reading...