Abu Dhabi: Mothers are special. And so is motherhood. But for some women, motherhood is extraordinarily special. Having a child with special needs means their motherhood is an ever demanding, challenging and lifetime occupation.
On the occasion of Mother’s Day, XPRESS speaks to some of these special mums with special children, and brings you their stories of awe-inspiring devotion and selfless care.
Shehnaz Parker, 50
When her first baby girl was born, Shehnaz - like any young mother - was all excited to start a new journey with daughter Saaima. But along with a bundle of joy, came one-too-many medical complications: Within a few hours of her birth, she had her first cardiac arrest. She underwent two heart surgeries before she turned one. She had a hole in her heart; she was diagnosed with Down’s Syndrome and ADHD (Attention Deficit Hyperactive Syndrome).
Today, 11-year-old, Saaima’s condition has not improved much. She constantly needs medication, her motor skills are not developed, she has scoliosis (curving of the spine) and she’s not even potty trained.
“It has been a tough journey. But God gives you lots of strength to go on,” Shehnaz, 50, from South Africa told XPRESS. A nuclear medicine technologist in Abu Dhabi, Shehnaz manages a full time job, while ensuring her daughter is cared for.
“I have no choice but to work so I could meet the increasing expenses of her treatment and also employ full time nanny to take care of Saaima,” said Shehnaz who has a younger son Shuaib, 10. Bringing up a special needs child, she said, has taught her to be patient and accept God’s will.
“She is part of our life. She is a gift from God. So what is abnormal for someone outside is normal for us. For instance, Saaima does not sleep at night because of ADHD. I am so accustomed to sleeping five hours after a long day at work,” she said.
Shehnaz is also candid in admitting to moments of frustration. “But now I have learned the frustration stems when I don’t understand Saaima, and when she does not understand me. Now our bond is so close, we know exactly what is in each other’s minds.”
Help and support from her husband and other family members always came in handy, she added.
Saaima’s younger son Shuaib also needs her as much Saaima does. “You often make the mistake of neglecting a normal child and focusing all your attention on the special one. I make sure I spend quality time with Shuaib, take him out for bowling and making him feel that he is equally special,” said Shehnaz.
Reham Sami Gad, 40
For Egyptian American, Reham Sami Gad, motherhood began in a state of denial. “It took me a while to accept that my elder son Saif was not normal. I was in denial when doctors told me he is a cerebral palsy child,” Reham,40, told XPRESS.
Three days after Sami was born, he had a bacterial infection that spread to his brain. It was when he was three months old, his parents noticed he was different from other babies.
“We took him to many doctors hoping the first diagnosis could be wrong. We put him through physiotherapy. But after a while, reality sank in,” said Reham who is a homemaker and mother of three.
Today, Reham says there is nothing in this world that she would exchange him for. “Saif is a special gift and I thank God everyday for giving him to me.”
She says the biggest challenge while bringing up Saif was his inability to communicate. “Sometimes I used to get confused as what he wanted. That was frustrating and depressing at times. But there was no giving up. You get up, and start again,” said Reham.
Now even by looking at Saif, his mother knows he is thirsty or wants a change of clothes. “That is the level of closeness we share. We don’t need words to communicate,” she said.
Saif is currently enrolled at Dubai Centre for Special Needs and Reham said the attention and coaching he is getting there has made all the difference.
But new challenges keep cropping up.
Six years later, when she had her second child Yassin, Reham said she had to deal with Saif’s insecurity. “That was really tough. But my husband Mazen was with me through thick and thin.”
Today Saif’s brothers Yassin, 10, and Rayan, 5, are his best friends. “I have taught the boys to integrate Saif into their lives completely. He is part of everything they do. And when I am gone, I know he is in safe hands,” said Reham.
Marilyn Pascual, 58
If there is love and understanding in a family, no obstacles are hard enough to break you. That is the life lesson Marilyn Pascual, a 58-year-old medical nurse from the Philippines, has preached and practised all her life.
With five grown-up children, and the youngest and only daughter Angela being a special needs child, Marilyn says she always believed in love while facing the challenges of motherhood.
“Angela, now 16, is my only daughter. I was praying hard to have a baby girl after having four sons. And it was indeed a struggle when we knew our angel was not a normal child,” said Marilyn, who has been working in Abu Dhabi for the past 14 years.
“A day after she was born, the midwife dropped hints and asked me to show Angela to the doctor. I felt depressed when she was diagnosed with Down’s Syndrome,” said Marilyn.
But then Marilyn knew motherhood was not always a cake walk. “It was a challenge. But so what? She was my daughter, and I had to give her the best,” she said.
When her daughter was four, Marilyn said she convinced her husband to leave his job and come to Abu Dhabi to take care of their daughter.
“There were ups and downs. Today I am proud my daughter is an active and self-sufficient girl who even helps me in my household chores. She is loved and respected by her brothers.”
But outside her family, things were not always easy. “Though I was constantly worried for her, I treated her as normal. But what hurt me is when others don’t. We had to pull her out of a normal school and put her in a special needs school because others could not understand why she should be like any normal child,” said Marilyn.
As Marilyn grows older, she’s worried. “I keep thinking of a time when I am not around for her. So my challenge is to make her as independent as possible,” she said.
