On Life

The Struggle Of A Mother With A Special Needs Child – “I Can’t Always Be There”

Mother of a special needs child

In her second trimester, the gynae pointed out that there was a white dot on her baby’s heart. That meant that the baby, her third child, could be born with some kind of birth defect, or a genetic defect like Down syndrome. There were a few possibilities, but there was no way to confirm any of it until after the baby was born.

Like any mother, Apple had worried about such a possibility but nothing could truly prepare a mother for the amount of changes and anguish she would go through when she gave birth to a child with special needs.

Four months later, she gave birth to her baby girl, Li-Ann.

The scan did not lie: Li-Ann was born with Trisomy 21, a genetic disorder otherwise known as Down syndrome.

Bearing A Child Who’s Different

“We didn’t have time to worry about [Li-Ann having Down syndrome at first] because she had a more critical problem. She was born with an imperforate anus.”

It is a birth defect that rendered Li-Ann’s body incapable of eliminating faeces through her anus, and it was imminent for them to first address this.

It is painful to even think about undergoing complicated medical procedures or surgeries as an adult, and for Apple, the most heartbreaking part of it all was having to see this happen to her newborn baby.

Baby Li-Ann
Image Credit: Apple

“It was heartbreaking to see her poked so many times to have her blood taken at such a young age. I would tell [the doctors and nurses] to wait for me to walk far away before they begin the procedure. I cannot [bear to see or hear her cry.]”

After three surgeries in ten months and many trips to the hospital, Li-Ann was finally able to pass motion just like anyone else.

However, this was only the beginning of a long journey for Apple, as the reality of having a child with Down syndrome started to dawn on her.

A Complete Change In Family Dynamics

At home, the setbacks came in waves and the stress resulted in inevitable conflicts between Apple and her husband.

“Back then, my husband’s concerns were: How are we going to help her (Li-Ann)? How are we going to teach her?”

People with Down syndrome experience a range of developmental difficulties which include delayed motor and cognitive skills. What this meant for Apple was a major shift in her perspectives on education and parenting. More than that, it was going to take conscientious effort from every family member to create a supportive environment for Li-Ann.

“The way to teach her would have to be very different. When you teach kids something, they may get the concepts after you explain five times but for Li-Ann, you may need to explain 20 times. Sometimes, 20 times may not work either because she processes things differently from others.”

Looking back, Apple credited Li-Ann’s learning to their decision to homeschool their children even before Li-Ann was born. Their rationale was clear: they wanted to establish a home environment that would encourage the children to be curious and passionate about their learning. Through the time and interaction with her siblings from homeschooling together, Li-Ann had the benefit of observing the normative behaviour of her siblings and she modelled her behaviour and speech from them according to the best of her abilities

“Kids learn best from imitation, and because I have my kids at home with me, Li-Ann can learn from them as well. So my older kids have been instrumental in Li-Ann’s growth and development.”

Apple’s three children: Li-Ann, John, and Rebecca
Image Credit: Apple

The first couple of months were “really, really tough”, but Apple’s mental preparation and early acceptance helped a lot. And it was only a matter of time the family learnt to adapt to the changes at home.

Much later in our conversation, she shared, “when the parents are in denial [of their child’s condition], it’s very difficult,” referring to other parents of special needs children she has met.

Take for instance Mary Heng, who also has a daughter with Down syndrome and who is one of Apple’s friends—they had bonded over their similarities as mothers of children with Down syndrome

The Pain Of Denial

Acceptance didn’t come as easy for Mary, who struggled with her daughter’s diagnosis and broke down the moment she heard the news over the phone.

“I thought I was mentally ready for the diagnosis but the instant I put the phone down, I started crying inconsolably.”

“There was a feeling of emptiness in my heart, like I’ve lost someone.”

Nonetheless, abortion was not something Mary considered, as it was her flesh and blood after all. She started reading up to understand how to care for a baby with Down syndrome. The more knowledge she gained however, the more it broke her heart, as many of the websites she read only made her realise how many health issues her daughter could suffer from.

She blamed herself.

“I knew that the condition is a random occurrence, but I couldn’t help feeling that the random occurrence was due to some defect in my reproductive system. Each time I held this baby in my arms, she was so precious yet I just felt sad for the fact that she has Down syndrome.”

Even after her baby was born, she continued to struggle with the fact that her daughter has Down syndrome. She would cry every time she thought about it. There were also moments where she could not help but question why it had to be her.

It took a week of crying before Mary started to brace herself to take on whatever that comes—Down syndrome or not, her daughter is still her daughter.

Regardless of what a child is born with, it is how the parents look at it. As an active member in the local community of parents with special needs children, Apple stressed, “Sometimes the situation may not be as bad as it seems, but because of the parents’ denial, the children will have missed opportunities that are important for their growth.”

This isn’t to say that all was smooth-sailing for Apple and her husband. As the family settled in to their new phase of life with Li-Ann, Apple admitted that they did not always have the answers. There will always be problems and they will always find themselves facing new struggles along the way, but it all boils down to perseverance and lifelong commitment to the family.

The husband and wife’s will to make things work would later prove to be a major motivation to push on, because just one year after Li-Ann came along, Apple was diagnosed with breast cancer.

Still A Mother Despite Having Cancer

After her first surgery to remove the breast lumps, Apple had a few serious discussions with her husband as to whether they should continue homeschooling the kids.

“Among other things, my husband was also concerned whether Li-Ann would drag the other two down [if we continued homeschooling]. I told him they will not as they will continue to learn at their own pace.”

Her husband had wanted her to focus on her health and recovery, but she firmly believes that as parents, their primary responsibility is their children’s growth and learning.

The down-to-earth manner in which she recounted the story to me painted a picture of her as a modest woman, or one who has long accepted that her sacrifices are just a part of being a mother.

Regardless, her unwavering determination in caring for her children was distinct.

“I can’t always be there. But I strongly believe in building strong relationships among [my children] now, so they can help each other when they grow up.”

“I believe that we can give them whatever resources they need for their individual growth. The vision of home schooling is to find out the gifts of the children and to nurture them.”

A note Apple’s second child, Rebecca wrote
Image Credit: Apple’s blog

However, just four months after her first surgery, she found a lump in her underarm. She had to go for another surgery and undergo various treatments – chemotherapy, radiotherapy and hormonal therapy, for the next one and a half years.

At that point, she was struggling to come to terms with her circumstances and pondered over the possibility of her never recovering.

“These are things that I have to struggle with, and it’s something that is not within my control. So I know that whatever years I have [left] is to be here for them. My kids.”

Thankfully, Apple found support in her family, friends, and the doctors and nurses who attended to her. With a strong support system and her strong will, she soon bounced back to her role as the primary caregiver of her kids.

The Challenge Never Stops

As the family relationshipss got stronger, things became easier. Though for Apple, her responsibility as a mother remains an everyday challenge—any mother would attest to how exhausting it is to be a mother.

Knowing the journey she has gone through, I imagine it to be an extremely demanding one. Although, I have no idea how I will react if I knew my baby has Down syndrome. I cannot even envisage the kind of inner conflict I will struggle with, knowing that childbirth is supposed to be a celebratory event, yet I cannot be truly happy about it. And knowing the disadvantages my child will face for all his/her life, for s/he is born different.

Yet, even with all the feelings of turmoil and doubt that Apple would probably have had, I observed how all of her motivations seem to only revolve around her kids.

Apple's Family_Special Needs Child
Apple’s family
Image Credit: Apple

She answered matter of factly whenever I probed about her struggles, but spoke with a smile, and a tinge of excitement and pride in her voice whenever she talked about her children’s achievements.

As a third party who spent over two hours chatting with Apple at Northpoint City’s Kopitiam, I could sense her love for her family. As cliche as it is, she embodies what all mothers aim to be:  imperfect, but brave, strong-willed, and self-sacrificing.

In fact, she frequently related to me her children’s abilities and their personality quirks. I learnt that Li-Ann’s favourite story is Little House on the Prairie, how John is into video production, and how Rebecca loves music and singing.  

After I left, I couldn’t help but also reflect on how well-behaved Rebecca and Li-Ann was throughout my chat with Apple. They had sat at a separate table beside ours the entire time, keeping themselves busy and never complaining once. Somehow, I had the (ignorant) impression that a child with Down syndrome would have made noise at the one hour mark or so. Or that a place full of jarring distractions would be a place too chaotic for them.

Perhaps this is largely due to my lack of understanding that an individual with Down syndrome is just like any other person. When given the right resources and opportunities, which they need, they are equally capable of achieving whatever typical kids can achieve.

This, is what mothers like Apple and Mary hope for their children.

For them, they are also well aware of how their years ahead are limited, but there is still a long way for their daughters. Like all caregivers of children with special needs, their only hope as mothers is that they have done enough to prepare their children for life.

Also read: Two Abortions Later, I Decided To Become A Mother.

(Header Image Credit: Apple)

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