SILVER SPRING, Md. – “My baby was born normal, but at eleven months she started getting ill,” says Pauline Moyo, 34, of her nine-year-old daughter Michelle who began having an inexplicable high fever. Concerned for her child, Pauline brought her to a local hospital in Zimbabwe’s capital Harare where she received troubling news: meningitis.
Knowing how this event would affect their lives did not become entirely apparent at the time, but rather over several months and years. While Michelle survived the ordeal, her nervous system suffered the brunt of the infection, leaving her with life-long cognitive impairment, explains Pauline during a meeting of an ADRA-sponsored support group for mothers with disabled children.
“Although she’s nine-years old, she remains a baby,” says Pauline. “I have to change her diapers and carry her on my back because I don’t have a wheelchair.”
The effect of Michelle’s illness has been far reaching, more than Pauline would have ever imagined.
“People look down on us. They look down on the disabled,” she says.
At her small rented home, where she shares water access—and costs—with her neighbors, she has received numerous complaints about her use of water. What they don’t know, or refuse to understand, she says, is that she has to continually wash Michelle’s diapers by hand—everyday, all the time. She was already forced to move once for the very same reason, and is not sure if she will have to leave again.
The situation has also strained the relationship with her husband and in-laws who blame her and her family for Michelle’s condition. She receives no emotional or financial support from her husband who works as a cleaner. In addition, his family has already said they will not take care of the girl. Worst of all, Pauline can’t imagine who would look after her daughter in case she can no longer assist her.
“I worry about that all the time,” says Pauline. “If I die first, who will care for my daughter?”
She has good reason to be concerned. Sensing her husband was being promiscuous, she got tested for HIV in 2005. When the results came back, she was devastated to learn she was infected with the HIV virus. Pauline is now unsure how long she will remain healthy, because she has not yet been able to access a treatment course of antiretroviral therapy.
Tsitsi Simanaga, 24, has endured her share of challenges as well. Also a member of the ADRA support group, she talks about caring for her disabled 3-year-old boy Samuel and her 3-month-old baby.
Although Samuel was born healthy, by the age of two months there were some indications that something was not entirely right, says Tsitsi. He underwent surgery for a hernia. But at the hospital, a physician indicated that the boy could also have meningitis. In order to rule it out he would need to do a lumbar puncture to test the cerebral spinal fluid.
By the time Samuel turned eight months, Tsitsi grew concerned that his motor skills were not making any progress.
“I started to notice that Samuel could not sit,” she says.
All she could think about was the lumbar puncture the physician had performed months earlier. Could the procedure have been botched? Was this the reason for Samuel’s lack of development? she wondered.
“There was no blame game,” she said, referring to the way her husband’s family reacted to the situation. In fact, as her workload increased after the birth of her second child, her mother-in-law stepped in to help.
“I now have two babies,” says Tsitsi. “It can become overwhelming. He’s completely dependent on me. He can’t eat or talk. And he needs to be supported.”
Samuel, however, has made some improvements. Although he does not have significant control over his own body, he has good hearing and responds to music. And he makes sounds that can be interpreted, says his mother.
“With the right assistance he will be able to do some things,” adds Tsitsi. “If he gets enough care, it will be helpful. We can’t afford a wheelchair, but I know he will need it.”
Mothers like Pauline and Tsitsi often remain largely invisible within Zimbabwe’s society. While they attempt to provide care for their disabled children, they often face discrimination and abandonment even at the hands of their own families. It is believed that in these cases that involve disabled children at least 80 percent of the time fathers abandon their families. As a result, mothers must raise their children alone, without any physical, emotional, economic, or medical support.
To assist them, ADRA will provide support groups with much needed counseling, literacy training, and vocational training in different areas, such as making peanut butter, candles, and soap. For a $140 contribution to the 2011 Really Useful Catalog, a Zimbabwean mother will have access to these activities, which in turn will increase her ability to meet the needs of her family. Click here to give to this project.
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Author: Hearly G. Mayr, ADRA International