health, Lifestyle, Parenting

Raising a child with cerebral palsy

Cerebral Palsy is known as a neurological disorder that usually occurs in early childhood and can permanently affect body movement and muscle coordination.

I too was unaware of this condition, until Zainab Huzefa Hajee, a mother of two, based in Houston, USA messaged me on Facebook to narrate her story of bringing up her 11-year old daughter Umme Salama who suffers from the condition.

“When Umme Salama was born, she was like any other normal baby. I had a normal delivery, but Umme Salama looked blue when she came out of me. Being the fighter that she was, her condition was soon stabilized,” said Zainab, while narrating her daughter’s birth story.

Oblivious of her daughter’s condition when she was born, Zainab reminisced how at first she thought her stiffness was instead a sign of strength. “Every time, I would massage her tiny body, she won’t let me stretch her. I admired her strength, and thought she was resisting me.”

It was not until Zainab went to see a doctor, just a few months after Umme Salama was born that the doctor noticed there was something wrong with her baby.

“I was in Tanzania, when I went to see a pediatrician as Umme Salama had an eye infection. But the doctor noticed there was something not right with my daughter. He told me, there was probably something suspicious about her health and we should get her examined for cerebral palsy.”

Disheartened to hear the news, Zainab went into severe depression until Umme Salama was a year old.

“Watching kids her age, effortlessly meet their milestones, deeply disappointed me,” she said. “That first year was extremely hard on me, I wasn’t ready to accept her the way she was, and this affected my mental health as well.”

Nevertheless, the Hajee family, then living in Toronto, began her physiotherapy and other treatments.

“My biggest strength during this time was my husband, and my son, Mohammed. They never saw anything wrong with Umme Salama’s condition, and gave me the courage to accept it, and fight with my daughter for her normal childhood,” said Zainab.

Zainab recalled her mother once told her, ‘Never let anyone have pity on you.’ That statement, she claimed became the turning point in her life as a mother.

It is said, sometimes a single phrase can change a person’s perspective. That’s exactly what happened with Zainab. She wiped her tears, and came out of the solitude of her home to show the world that there is nothing wrong with disability. She took her daughter, then two years old, for every social gathering that kids her age attended.

Zainab says, “If today a parent of a special child decides to sit at home, thinking their child is not ready to go out and socialize, the society will feel the same way, and they will not be ready to accept them. I realized this at the right time, and made sure Umme Salama was seen everywhere, and spoke to everyone she met. A lot of times, people would come and greet everyone but ignore Umme Salama. This made me very upset, and I would make Umme Salama shake hands with them to make them realize that she does exist.”

“This practice did work. Next time, these same people would come and greet her first,” added Zainab.

Zainab told me that despite her disabilities, Umme Salama is a happy child today. “She loves socializing, she loves swimming (with help), and meeting new people,” Zainab exclaimed.

“Many a times, when I as a mother feel certain activities won’t be possible with Umme Salama, my husband makes me realize nothing should be seen as a hurdle for her. Our friends usually plan hiking trips, and often the trails are inaccessible for someone on a wheelchair, but my husband makes sure Umme Salama is with us. He makes her walk, and join the group. Although, they make it at a slow pace, but never has my husband made Umme Salama feel that there’s anything in this world that she cannot do,” Zainab spoke about the support Umme Salama receives from her father.

Speaking about the bond that Umme Salama shares with her elder brother, Mohammed, she said, “Mohammed is a young teenager yet he never feels ashamed of his sister. He has been a supportive brother throughout, and would confidently take his sister and introduce her to all of his friends. For Umme Salama, her brother comes first too, and he has been her favourite since she was a toddler.”

Today, every little milestone that Umme Salama reaches, becomes a special celebration for the family. Although Zainab admits there are some moments when she feels weak and exhausted, but Umme Salama’s spirit to keep moving despite so many odds, is what helps her keep her head high.

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