Raising a child with cerebral palsy
Nnasaretha Kgamanyane | Monday March 28, 2022 06:00
Now 29-years old, Mysi Badenhorst had her daughter, Ame when she was 18-years old, but suffered birth complications. The young mother experienced eclampsia that led to her daughter having severe birth apxsia (brain damage). This was not easy for the young mother, as she was clueless about motherhood let alone how to take care of her special newborn.
“The doctor told me not to expect much,” she recalls.
“I was told she would not be able to reach full potential like other children.
“I was also told she would not live for long.
“I was 18 years old and confused.
“Having a baby was hard enough but a child with brain damage?
“At that time I was also recovering from the trauma of the birth.
“I was in a coma for three weeks and we both stayed in ICU for a couple of months before later being sent home.”
When the young mother and daughter were eventually released to go home, Badenhorst still did not understand what was happening and did not want to accept her new situation. At the time, she was grateful for life because they both risked death. However, having been given a chance to live, Badenhorst became motivated by the fact that they could have both died but had survived. Her attitude changed and she started learning and asking questions.
Two years later doctors delivered another diagnosis. Her young daughter had severe cerebral palsy.
Rather than sink into demoralisation, Badenhorst decided to read every article online with the word cerebral palsy in it. She then understood that her daughter had a disability and nothing could change this. She, however, decided to make things better as a mother.
Things weren’t easy, but she kept on going. Badenhorst remembers that simply going out in public with her child invited horrible stares and sometimes bad service. Simple things like getting a wheelchair proved a hassle.
“I would describe it as being thrown in the deep end of a pool with sharks in it.
“I started an association, Cerebral Palsy Botswana, to make things better for parents and children with cerebral palsy.
“I had the greatest support from my mother hence I could now help others.
“It all began as an information hub with basic knowledge on cerebral palsy for parents in Botswana.
“How to get a wheelchair, acceptance and social welfare help.
“What I went through with my daughter was hell and I would not even wish it on my worst enemy.”
She continues: “Support from government is very minimal. The UN convention ratification will definitely change things for the better, but it will take time to domesticate the new policies.
“We still struggle to get basic health care and support. Assistive devices are a luxury in Botswana.
“A great number of children with disabilities are not going to school.
“In fact, people with disabilities in Botswana are generally sidelined.”
Moreover, she points out that most parents of children with cerebral palsy cannot work because they are the primary caregivers to their children. They do not get any support from the government. Badenhorst wishes the government would support them by at least by taking the children to school, which could help parents find jobs to work and earn incomes. Meanwhile, her organisation continues with its mandate of awareness and advocacy. Part of this is lobbying government to know that such mothers and their children exist and to provide support for them. She also says parents need to come out and work together to help their children.
Badenhorst’s philosophy is that God chose them to parent these special children because He could not give just anyone a child with special needs.
“And He will never give you anything you cannot handle,” she says.
“We get to see God’s wonders and miracles first hand.
“I was told my daughter would not make it to five years and she is now 11 years old.
“Every day is a gift.
“Enjoy what you have. Do not compare your child to any other child. They are special in their own way.”
March is Cerebral Palsy Awareness month and Badenhorst urges the public to join Cerebral Palsy Botswana on March 25. Members of the public can wear green for Cerebral Palsy, take a picture and tag the organisation on its Facebook page.