4 months ago
39
Lagos-based pap seller, Muminat Lamidi, whose son is suffering from cerebral palsy, tells TEMITOPE ADETUNJI how challenging it has been raising him
Can you narrate the challenging journey of your son
My name is Muminat Opeyemi Lamidi; I am from the Ayedire Local Government Area of Osun State; I am 32 years old. Five months after my son Demilade was born, this fever started, and we thought it was the normal teething that occurs in babies.
I took him to the primary health centre and he was treated for malaria, and the nurses gave him an injection for three days. I succumbed to the assumption that it was a teething symptom. The fever became more severe after a week; I wasn’t knowledgeable, and I was just 23 years old and very naïve.
It all started in the evening after he finished sucking; he started vomiting, and he couldn’t eat because he kept on throwing up. I discovered that his neck had become stiff and shifted to one side, and I became extremely worried.
The next day, a close nurse who stays in my area came around and when she saw my son, she discovered that he was also having convulsions. I didn’t notice that because I thought convulsion had to do with when a child is jerking and there was nothing of such. She advised that we take him to the hospital, so we went to a private children’s hospital in FESTAC, but on our way to the hospital, I noticed that he finally lost control of the neck and to date, the neck hasn’t adjusted to normal.
When we got to the hospital, they rushed him to the ICU, and he wasn’t responding to treatment. After spending three or four days in the ICU, we were referred to LUTH (Lagos University Teaching Hospital) because we needed to carry out some brain scans in 2015. We’ve been battling with this for eight years, and Demilade will be nine years old in May.
So what happened after he was referred to LUTH
When we got to LUTH, he did a brain scan and they discovered that he had non-communicating hydrocephalus as a complication of meningitis. So it was at the Lagos State Teaching Hospital that he had surgery for hydrocephalus; it was also discovered that he had brain damage, and we carried out all the necessary scans and tests.
After the surgery, we have been managing the situation; the situation can only be managed because it has to do with the brain, the milestones for walking, sitting, and doing all developmental stuff might be regained slowly or he might not regain them; we were advised to be hopeful, that we should just keep making use of the medications prescribed for us; we were placed on so many drugs. They discharged us after seven weeks and it’s been challenging.
What are the challenges you’ve faced
I stay in the Ojo Local Government Area of Lagos, and it is far from LUTH; it has not been easy conveying him to the hospital every week for therapy; we are not mobile, we don’t have a car, and we can’t afford it; he is using a wheelchair. The best place where his condition can be managed is a teaching hospital because we have to see specialists, and coming from where I stay to LUTH is very challenging.
The physiotherapy is supposed to be at least three times a week but due to the stress, I can’t afford to do that and due to the number of patients in the teaching hospital, three times in a week is impossible.
So, the hospital has to put that into consideration and ask us to be coming once time in a week. We also have other therapies for him and the days are not always the same.
At one point, I started feeling very tired because as he grows older, I have to carry him on my back to the hospital. At one point, we moved to another hospital in Oshodi in 2018 so that we could have access to physiotherapy and other therapies in one day, but last year, we had to move back to LUTH.
There is a particular drug we normally buy, it was N1,500 in 2015, but around 2017, it increased to N2,000; after the COVID-19 pandemic, it started increasing and last year, everything changed drastically from N6,000 to N10,000 and my son is taking a bottle in a week; he was asked to use 10ml in the morning, 10ml at night, and a bottle is 100ml.
It was said that he must not miss a dose; the drug is over N10,000 and we must buy one in a week and he is not the only child, we must take care of others too; it is not that we earn that much, sometimes I have to go to Facebook to beg for funds from people, but sometimes when you keep begging for something you will feel reluctant to keep asking.
Whenever he feels down, I try as much as possible to encourage him; he used to go to school with his younger brother and now whenever he sees only his younger brother going to school, he does feel bad about it; sometimes he cries, and sometimes he becomes so moody. Communication with him is another challenge; sometimes when he wants to communicate and tries to pass a message and we don’t get what he is trying to say, he becomes frustrated and angry.
What do you do for a living
I was selling building materials but due to the challenges of raising my son, I stopped running the business to take care of him; we’ve spent so much that I can’t afford to fund the business, and I have to leave my rented apartment for my husband’s family house so that we can both look after him and I can have little time for myself too
So I became a pap seller to be able to focus on my child and also support my husband as he doesn’t earn much from what he does; I am also a part-time student at the Lagos State University, where I am studying Psychology.
What does your husband do
He is a newspaper vendor and he also engages in some menial jobs.
How do you manage schooling while nursing a child suffering from cerebral palsy
Raising a child with cerebral palsy who relies on me for everything has been extremely tough; I am lucky to also have the support of my neighbour and his aunt who always assist me in feeding my son his lunch, which I always prepare before I leave for school. My class schedule is challenging, I go to school on Fridays, Saturdays, and Sundays; taking care of my child and juggling my studies are very demanding, and he is not my only child, I have to take care of the others too.
How many children do you have
They are three boys; Demilade is the first child.
How have your family and friends been supporting you to cope with the challenges
My family members are not here, they support me with the little they can; last year when I needed someone to follow me to the hospital, my elder sister followed me because my husband had to go to work to provide for us.
Have you encountered any obstacles or discrimination over the condition of your son
Yes, some would stare at him funnily, and some would even call him an evil child in Yoruba; they believe that once a pregnant woman starts walking in the sun or at a particular time when she is not supposed to go out, they believe that she will give birth to an evil child. I have heard people call him ‘Agbana’, meaning a child who wastes the resources of his parents. Another form of discrimination is the fact that in society, there are no provisions for children or people living with disabilities; we can’t move them freely on the road; there are no places that are accessible for children or people living with disabilities.
Imagine if I am going to LUTH from Iyana Iba, I will have to board three buses, and when I get to Mile 2, I will have to climb the overhead bridge to get to where I will get another bus, backing an almost nine-year-old child; that is another challenge.
Assuming that we have a road that is easily accessible, I will just have to easily wheel him, get a bus, and take him to the hospital. I am still managing to do the things I do for him by enduring the pains, I am his mother and I have to do these things. Imagine how difficult it will be by the time he gets to 20 years old.
Has he been able to attend school
Because of his condition, he has not been able to go to school; he can’t walk, and he can’t move his hands freely. I put him in his younger brother’s school earlier, but that school doesn’t have provisions for children living with disabilities. I learned that there is a public school in our area, and I was told that they have a special unit; I want to try that for him.
How do you maintain love among your children
They are still young but his immediate younger brother is a bit understanding, he is six years old. I remembered an incident that happened last month. Demilade had a convulsion and was admitted to the hospital; I forgot that day was his immediate younger brother’s inter-house sports; he was chosen as the king of a particular house, I already bought him everything needed; it was when we got to the hospital after few hours that I received a call from my sister-in-law asking me where the clothes and shoes were, and that was when I remembered the inter-house-sports.
I couldn’t attend the inter-house sports; after the whole thing, he asked me a sober question about why I didn’t come to his inter-house-sports; I explained to him that I had to be in the hospital; he added that he cried that day because I wasn’t even available to take his pictures.
I felt so bad about what he said, and it made me so emotional and I was moved to tears; I wasn’t available for him, but I was available for his elder brother and I just prayed to God for wisdom; I don’t want it to be as if I love one more than the other.
What kind of help do you need
We need empowerment and financial help to be able to cater to his medications and even food as things are becoming more expensive. I feel reluctant to talk about this because it is as if I am putting my responsibilities out there, but we need help.
There were times when my eyes would just become blurry whenever I bent down maybe due to the stress; I went to the hospital and the doctor told me that the stress of making pap was making my blood pressure to be low, so I just stopped taking orders online, but some customers still patronise me.
I have to reduce the production quantity, so the money I make from it is not much. I told you that I am also a student of LASU (Lagos State University), so sometimes I sell petty things like pens, etc to my fellow students.
Is there anything that makes you happy whenever you see your son
Yes, I see his life full of miracles because when we had the surgery, he couldn’t see and the doctor said that it was possible that he might not be able to see anymore but after six months, he started seeing and that is a miracle.
English (US) ·