LIFE OF COURAGE
Parents of children with Cerebral Palsy need support
Parenting a child with special needs can be equally terrifying and terrific. But most of all, Refilwe Pheto (35) says it takes a village. “You can’t do it without support. You need someone to take over when you are exhausted. You need people you can talk to and share experiences without having to over explain yourself, who can understand this journey we are on,” said Pheto.
Her daughter Larona was diagnosed with Cerebral Palsy, a paralyzing disability that comes from brain damage. CP is the single-largest cause of disability in children worldwide and, according to international statistics, it occurs in about one in every 400 births. CP symptoms include, seizures, lack of spontaneous movement, stiff muscles and difficulty with fine movements, such as picking up small objects amongst others.
Pheto says she had a normal pregnancy until eight months when she was diagnosed with high blood pressure and immediately got booked to give birth via Cesarean delivery (C-section). “Everything seemingly went well and the baby and I were both given clean bills of health. It was her grandmother who noticed that something was not quite right around five months when Larona was not hitting some of the developmental milestones. The diagnosis was made when Larona was eight months old. Now, at six years old, she is unable to walk, talk, or eat on her own. To get around, she has to be carried.
“I remember feeling an overwhelming sense of loss when we first got the diagnosis. In my mind, I felt her
life was as good as over. I was hopeless and thought it meant she won’t be able to do anything for herself for the rest of her life,” Pheto shared in an interview recently.
While Pheto admits the responsibility of taking care of a child with disabilities can be stressful, she is grateful she has a great support in Larona’s father and her grandmother who cares for her when
Pheto is at work. “Our lives revolve around Larona. We don’t have much of social lives because it is honestly hard for some friends to be accommodating to why you might need to miss some social engagements. When we go out with her (Larona), you are bombarded with endless stares and questions. At first I used to answer and explain but it gets a bit much and overwhelming sometimes,” she said.
It is one of the reasons Cerebral Palsy day, celebrated every year on the 6th October is such a special day for her. “It is literally one of the highlights of the year for me as Larona and I get to interact with parents and children like us. It’s effortless and gives me moral support to carry on being the best I can be and to love my child as she is. Larona, and the community we are in has literally a new sense of appreciation for life”.
During this year’s commemorations, Pheto says, she met a young man with CP who is currently studying at tertiary level. My heart is filled with joy and hope even for Larona, because even as it seems we are raising children in a society not built for them, they can thrive.
Founder of Cerebral Palsy Botswana (CPB), Mysie Badenhorst said Cerebral Palsy day is always exciting because caregivers of children with CP get to meet with professionals to learn and share their experiences. “It’s always good to be with people that are going through the same struggle as you.
We get to joke about it but most importantly we get to offload. I have seen a lot of parents leaving empowered, ready for the world ahead of them,” she explained.
Badenhorst said the goal of CPB is to grow a solid parent network across the country so that parents can unite in one voice for change and better support systems for their children.