Parenting a child with a limb difference

Jennifer Ajok moves slowly towards her mother in their sparsely furnished sitting room. Because her left leg is longer than her right leg, the 39-year-old woman cannot walk. Instead, using her buttocks as leverage, she pushes her body forward. She does not have arms.

“I use my long leg for writing. I write very slowly, though. My leg is like an arm because I use it to eat, brush my teeth, and even comb my hair,” she says.

Sitting in a chair, her mother, Evaster Auma, patiently waits for her. Her calm demeanour is reflected in the numerous pictures of the Virgin Mary hanging on the walls. Even a casual observer can see that Auma is a deeply religious woman.

And who can blame her? For 39 years, she has dedicated her life to taking care of her daughter who is severely disabled. They live alone in Angwetangwet B Cell, East Division, in Lira City. Her child’s condition has tied her down. She cannot go anywhere because she has to wash Ajok’s clothes and bathe her.

“My mother had one friend who used to bathe me when she was not at home. Unfortunately, that friend died. Now, I am not comfortable with anyone else bathing me,” Ajok says.

In 1985, Ajok was born with a limb difference at Lira Regional Referral Hospital, about a kilometre from their home. Limb difference is a condition where limbs are not the same size, shape or structure as a typical limb.

Congenital limb difference occurs at birth while acquired limb difference develops after birth. However, both can cause mobility impairments that range from minor to severe.

Abandoned in the labour suite

Auma says she was constantly ill when she was pregnant with Ajok and almost died. However, she says, she never used contraceptives before she conceived.

“When I delivered the baby, the nurses abandoned her on the delivery bed. Only the placenta was removed; they did not even cut the umbilical cord because they thought the baby was going to die. They only took care of me and returned me to the ward,” she says.

Auma gave birth at midday, but it was only after her mother visited the hospital a few hours later that the midwife remembered the baby she had abandoned in the labour suite.

“She asked me where the child was and I told her I did not know. I told her to ask the midwife. My mother rushed to the labour suite and found the baby unattended but alive. She was struggling and almost falling off the delivery bed,” she adds.

When Auma’s mother confronted the midwife for her intentional negligence, she panicked, thinking that the old woman was going to report her to the head of the hospital.

“The midwife was scared that the child had died so they rushed to the labour suite and my mother is the one who cut the umbilical cord. She brought the child to me. She was a big baby and strangely, she was silent,” Auma adds.

Unlike other newborns, Ajok did not cry until after nine hours. She had a long and folded leg while the other one was short. She did not have arms. Instead, she had two fingers on her left shoulder, which she kept flexing.

“I saw that the child was abnormal. The nurses accused me of using a lot of contraceptives before conception but I had never used any family planning product before. The baby’s father saw the child and walked away,” Auma says.

She adds that her boyfriend at the time was poor but when he saw the child he said she was useless, without a future. He was a married man and he never supported the hapless mother and child. He is now deceased.

“Any other baby would have put her fingers in the mouth to suck them, but Ajok did not have fingers. Instead, she began sucking her lips. I did not know what to do. Fortunately, the other women in the ward advised me to give her the breast,” the mother says.

Plunging into life

Because she did not have limbs, Auma fed her daughter until she was seven years old. She constantly prayed to God to intervene in her child’s life because she still believed in a miracle.

“Ajok was growing up while lying down. She could not move or turn herself. I was doing everything for her. A friend taught me how to say the rosary and I began praying to St Philomena through the Virgin Mary, every day,” she says.

In the Catholic faith, St Philomena is the patron saint of infants, babies, and youth.

Her prayers paid off years later when her child was seven. One morning, Ajok placed her daughter on a mat under a tree and walked to the market, intending to return in time to prepare the midday meal. However, it rained and she was delayed.

“When I returned home, I did not find her under the tree. I looked for her everywhere, in vain. I began panicking. That is when I heard a voice calling to me from the house. It was my daughter. I asked who had carried her into the house and she told me she had moved on her own,” the woman says.

When it began raining, Ajok had found the strength to roll on the ground until she reached the verandah. When her mother went to their outdoor kitchen to prepare the meal, Ajok rolled behind her.

“She was rolling while pulling the bed sheet I wrapped her in with one leg. From that day, she began making her bed using the long leg and hoisting herself up to lie in it. I continued with my prayers,” Auma adds.

Helping hand

Ajok began attending school two years later courtesy of a European who lived in Malawi. A local council member who represented people living with disability had introduced the family to the Good Samaritan.

She was a pupil at Ikwera Negri Primary School in Aduku Town Council, present-day Kwania District. Her mother used to put her on a wheelbarrow and push her to Lira Bus Park. There, she would board any public means to the school.

“The councillor sent Ajok’s pictures to the white woman and she felt pity and agreed to pay her school fees. However, when the girl was in Primary Three, the Good Samaritan was killed in a car crash. We were lucky because another white woman took on Ajok’s education,” Auma says.

However, she is bitter, claiming that her daughter’s pictures were sent all over the world by unscrupulous people soliciting funds to educate her. The funds were sent but Auma never received a coin.

Secondly, the head teacher of the school was not happy with the disabled girl’s progress.

“The headteacher complained that the school was wasting resources on feeding Ajok and keeping her in school. She claimed there were school fees arrears yet I know people were sending money to the school. She kept asking what help my daughter’s education would be to us,” Auma adds.

Ajok did not enjoy her experience at the school, although she managed to learn how to write with the foot on her long leg.

“When I got my periods, the teachers said I was going to give the other children a disease. When the other older girls tried to help me, they were stopped. I dropped out in Primary Six because I could not bear the stigma anymore,” she recalls.

Leaning on God

Elizabeth Alyano, a former probation and social welfare officer in Lira District and Ajok’s cousin, says there are lessons to be drawn from this poor family’s situation.

“Auma is a rare mother. Consider the age at which she gave birth to that child. If she had been any other woman, she would have abandoned the child and gone into another relationship. However, she decided to stay without men, which other people think is impossible,” says Alyano.

Alyano adds that the congregation in Auma’s former church at some point rejected the child. Every Sunday, the church would collect an offering and hand it over to Auma to take care of her child.

“When Auma took the deformed baby to the church to show her off, the members of the congregation were touched and donated clothes and food to support her. A woman stood up and made a statement, asking why people were collecting money for a useless child, who is going to die anyway,” she says.

In pain, Auma ran away from the Anglican Church and moved to the Catholic Church. She says the support she got from her new church gave her the motivation and courage to carry on.

“Parents with special needs children should treat them equally as the other children. They should also turn to God because He is the only one who can give you the strength to live one day at a time,” she says.

Auma says their biggest problem is food. They mostly eat beans and greens because she does not have the money to buy better table fare.

“Watching her struggles throughout her childhood, I did not know Ajok would reach this age. But she made it. I do not believe I am going to die soon. I believe God will keep me alive to take care of her. And should I die, God will provide someone to look after her,” Auma says.

The elderly single mother was blessed with three children but one of them passed on after a long illness a few years ago. Treatment options for limb differences include prosthetic limbs, surgery, rehabilitation, and physical therapies.