Four months into marriage, Yaayaa (not the real name) realized she was pregnant, her joy knew no bounds as she had always wanted to experience being a mom.
Yaayaa worked in one of the prestigious banks in Ghana and
she had her plan drawn out, how she was going to juggle being a mom and being a
career woman.
She was also progressing steadily in her job which gave her
a lot of satisfaction. Nine months came so quickly and soon it was time for
baby to come.
Everything went as expected with the childbirth, it was a
baby boy, but somehow the baby didn’t cry after birth. It looked like something
was wrong, but the medics could not point out exactly what was wrong.
The baby was taken to the neonatal intensive care unit
(NICU) of the hospital, while in NICU the baby even developed neonatal
jaundice.
After about two weeks, Yaayaa and her baby were discharged
from the hospital. In Yaayaa’s mind everything was alright.
Baby seemed to be growing well and it was all joy, soon it
was time for Yaayaa to resume official work and she happily did, but her work
was no longer going to be the same.
It was one challenge after the other, almost every week
ended with her at the hospital with the baby, after a lot of hospital visits
and not being sure what was particularly wrong with the child, doctors told
her, her child may be having cerebral palsy.
Cerebral Palsy
Cerebral palsy is a neurological condition that affects the
movement and sometimes the speech of a growing child. It is caused by an injury
to a child developing brain, this injury could happen either during pregnancy,
during childbirth or shortly after birth.
Cerebral palsy is the number cause of physical disability in
childhood, and it has no cure.
Looking for Solution
Yaayaa did not know how to take the news of her child’s
diagnosis, it was time to look for a solution, she told herself.
The months that followed her child’s diagnosis was uncertain
or unstable, she found herself either consulting a herbalist, a pastor, a
fetish or one medical doctor or another.
It also became a life of hopping from one pastor to another
seeking solutions to her child’s challenge.
At work, Yaayaa was always full of excuses, she always came
in with one excuse or the other her child was constantly sick, and she needed
help.
After about four years into her child’s diagnosis, she
decided to resign from her official work and concentrate fully on taking care
of her son.
Her son was growing but there was no improvement in his
condition, at age seven, Yaayaa’s son could still not sit, crawl, or do
anything independently.
Yaayaa had been taking her child for physical therapy
sessions as doctors recommended and yet there seemed to be no improvement at
all.
Complicated Challenges
But that was not the end of Yaayaa’s problems, her husband
also started developing some strange attitude, her once lovely husband will now
stay so late at work, wasn’t supporting her at home at all and worse of all
stopped providing for the home.
Before Yaayaa could understand what was happening to her
husband, she got to know that her husband now had a mistress and had even had a
child with his mistress.
Yaayaa became a single mother to her son with cerebral palsy
because her husband eventually left her. She resorted to all kinds of jobs to
make ends meet.
Maintaining her son who was growing in age but not growing
in skills was very expensive. At age 14, her son was still using diapers since
he couldn’t achieve toilet training. Yaayaa had to be there to feed her son,
attend to his toilet needs, bathe him and do just anything thing for him. Her
son could not achieve any independent living skills.
Sometimes, she would leave her son alone in the room and go
and sell or go and wash peoples clothing to enable her to earn an income.
Yaayaa told the media that she did all kinds of jobs
sometimes neglecting her son to be able to survive for one more day.
The Parents Support Group
When her son was 19 years old, someone introduced her to a
parents support group, the Special Mothers Project. There she met other
parents; they shared ideas and experiences as well as offered physical support
to one another.
The Special Mothers Project apart from engaging in advocacy
on issues affecting children with cerebral palsy and their families also
connect parents with the limited but available support systems in Ghana.
It was during one of the regular discussions on their
WhatsApp platform that Yaayaa shared her story with her 19-year-old son.
The other parents on the platform touched by her story
decided to contribute money to support one of their own. The platform realized
quite a substantial amount of money for Yaayaa and helped her set up a grocery
shop to enable her to earn some steady income and have time to take care of her
son.
A year went by and Yaayaa was doing so well with her shop,
she reported back to the group.
Support Systems
She told the media that even though she is in a much better
place and can support her son, there are no formalized support systems in Ghana
to support persons like her or families of children with disabilities.
“There is no place, I can take my now 20-year-old son for
recreation or even rehabilitation, I couldn’t even take him to a formal school
because Public schools and facilities that take care of the needs of children
and adults with cerebral palsy do not exist in Ghana.”
Yaayaa said “I am in a better place than I use to be, I am
happier, my son is happier but there is one thing I wish and pray for: My child must die before me.”
“If I die who will take care of my son, who? She asked,
there are no facilities, there are no institutions with trained caregivers on
how to manage a person with moderate to severe cerebral palsy in Ghana,” she
said.
Usually, the burden of care is on the family especially the
mother, sometimes even family members shun taking care of persons with moderate
to severe cerebral palsy, that is why we need the government to put in place,
programmes and policies that would facilitate the care of children with
cerebral palsy outside of the nuclear family.
Yaayaa called on the government to pay attention especially
to the needs of children or persons with cerebral palsy and their families in
Ghana, since they have been excluded for so long.
PS: Even though it is a true story, the names and
situation in this article have been changed to protect the identity of the
people involved.
