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Raising a child with Epilepsy


On 29 August 1991, a then 26 year old Santa Abiria Tuape got into labour. Her second child was ready to get out of the comfort of her womb’s amniotic fluid. The baby, Christopher, found its way out, albeit 15 hours after that labour kicked in. It took a miracle for him to be born. But the effect of that delay left an indelible damage to his brain.

Santa sat with her first born, Ernest Jacob Tuape, at her dining table for an interview on mothering Christopher while a rooster that survived being slaughtered for a meal on Easter crowed outside the house.



Let’s go back to the days before you became a mother. What did you envision motherhood to be like for yourself?

[Silence. Pause. Deep thought.]

I wanted to be a mother and to have four children. I didn’t have the four.


You have half that number.

[Laughter]

I only got two. Here’s how I had planned it. I wanted my first born to be a boy then the second one a girl, the third one a boy and the last one a girl. Two girls and two boys. Did I get them? No.

I got the two boys, yes.

I loved to have children. I wanted to have a stable family. I wanted to have one spouse. It’s unfortunate I couldn’t have him as long as I had wanted. It’s sad I lost him [He passed on in August 1993]. I wanted to have children with only one man and to live in that marriage for the rest of my life until God decided that we part. It didn’t happen the way I planned. I thank God for everything though.

So as you can see, I have the two of you. You and Christopher.


How was Christopher’s pregnancy?

Oh my! It wasn’t an easy one. During the time of my pregnancy with Chris, I was stressed. And I think that stress affected him. I worked and stayed in a place called Panyimur, which was over 30Km away from home in Pakwach. I would ride a motorcycle out to the field and come back in evening. It became like a long distance marriage for us, which had its own challenges. At one of my antenatal visits, they suspected I had a breech pregnancy.

I was advised to deliver from a hospital where a doctor could attend to me.


And did you do so?

When I requested for transport [from my workplace] to bring me home, I was told the programmes were too tight and they couldn’t release a vehicle to pick me up. This was two weeks before my labour started.

I couldn’t ride on a motorcycle because you [me, her son] were with me. I was heavy. I had the maid with me. I couldn’t ride home. So I decided to stay.


And the labour?

On the evening when I got into labour, I had just returned from the field. It was about 5:00pm.

The nearest health centre in Panyimur was about 7 miles (11Km) away. And when labour started, I couldn’t help myself. I needed someone to help me. There was no public means, no cars, no telephones, no neighbours and no one nearby who could ride a motorcycle.

I depended on myself yet I just couldn’t help myself. I surrendered all to God. God in his goodness brought one of the casual labourers who used to help us at our workplace. He came at around 8:00pm. When he saw my situation, he picked his bicycle and rode to look for vehicle. He did all he could. What he found was a lorry that had come to pick fish. He brought the lorry to pick me up at about 3:00am.


What? 3:00am?

Yeah. From 5:00pm when my labour started, to 8:00pm when the young man found me, it was at about 3:00am that the vehicle he went to look for came. I was helped onto the lorry and taken to the health centre. I believe if I was at the health centre early, I would’ve given birth by that time. Or I would’ve been taken to hospital where there was a doctor.

And here I was at this health facility. There was no doctor and no ambulance. There was a very good midwife. She helped me. She told me to push but she noticed the baby’s hand was on the chin and had blocked the passage.

Then she told me, “We needed to take you to the hospital. You need an emergency operation. But now, we are going to depend on God because there is no one else to help us here. So let’s pray.”

We stopped and she prayed. That midwife was a very prayerful woman.


How where you feeling at that point?

A lot of pain. There was a lot of pain. I was desperate. It was between life and death. So either I would’ve passed on with him or he would’ve passed on. But that midwife just told me, “Our only refuge is God. Our only help right now comes from God.”


Do you remember the midwife’s name?

I can’t remember her name now. Her son was called er… Is it Jimmy? Jimmy, I think.


And after the prayers?

So as soon as we finished the prayers, she pressed my abdomen and told me to push. I pushed and the baby came out, unconscious. He lost oxygen completely. He was purple. And he didn’t cry. It was now about 9:00am. This was the time I gave birth to your brother.

I remember she told me, ‘I’ve got to make sure this baby survives. I can come back to stitch you but this boy has to survive. This life has to go on.’

She turned the boy upside down, slapped his bums, and poured cold water on his back. For the mucus which was in his nostrils, she used some gauze and pulled it out. And the boy cried. When Chris cried, she was relieved. She put him to rest and then attended to me.


And the pain you were feeling?

The pain all went when Chris came out. Everything seemed okay after he’d cried and rested but in the evening of that day, at about 8:00pm, he cried uncontrollably up to about 8:00am the next day. I told the midwife what happened. She gave him a sedative which allowed him to sleep again. And that’s when she broke it to me.

She told me my baby got "brain damage".


How did you take that news?

I didn’t understand what brain damage really meant at that time. I thought it was a short term thing and it would change. I thought his brain would rebuild itself but… [Silence. Shoulder drops. Sigh.]


What do you think the role of workplaces are in maternal health?

Workplaces need to support their staff to promote maternal health and health generally. Look, my workplace had a policy for supporting their staff, their spouses, and their immediate family in case of any health related issues.

So I think for me, it was a case of negligence on my boss’ part. Because if he’d given me the vehicle, which I requested for and I was entitled to, maybe the situation would have been different. He later regretted that decision when he saw my boy’s condition. And he apologized for it.


What lessons have you learnt from mothering Christopher?

God’s ways are not our ways. You may want something. But God can choose to give you something else. As a mother, accept and appreciate whatever He gives you.

With children like Chris, you need to understand and be patient with them because their learning capability is not like that of regular children. Chris has a very sharp mind. But because he doesn’t talk, he can’t express himself verbally. He uses his own sign language which I’ve learnt to understand. And I appreciate him the way he is.

Always show love to all your children regardless of what they are like because they are human. They are a gift from God.

And it’s important to take such children for physiotherapy and to get support from the hospital, from the mental health clinic. Through my experience with Chris, I’ve been able to support a few other mothers who have children with disabilities.


What keeps you grounded?

[Pause]

I think it’s the grace of God. I think God has given me some level of grace to handle Christopher’s situation. I wouldn’t have managed on my own.

In addition to grace, I also think God has given me the gift of prayer which helps me a lot. Because when the situation becomes too hard, I get down on my knees and pray. He always helps.


You’ve talked about prayer. What’s that one thing you’ve consistently been praying for for Chris?

You know he’s epileptic.





Yes.

He gets a lot of fits. With the cerebral palsy, he has been consuming drugs like food. And my prayer has always been, “Jesus, [long pause], help him get out of the epileptic condition.” That has been it.

Those fits weaken him.

And I’m also afraid the drugs he’s been taking for all these years might be having an impact on his health. Also, sometimes when he’s about to get the fits, he becomes too destructive. He becomes violent. So I pray to God to make him humble such that he doesn’t keep being destructive and violent.

I’ve been praying that God gives him humility. The people he lives with need that humility in him. They need his patience. They need his cooperation. If he doesn’t cooperate with them, if he destroys things, then it becomes a difficult for his caretakers to handle him.


And to young mothers, what advice would you give?

First, accept whatever child you have been blessed with. I wouldn’t wish for anyone to have a child with any form of disability or mental illness but if God gives you one, accept and look after this child just like you would any other regular child. Love this child. Care for this child.

If you get a child with special needs, that shouldn’t stop you from having other children. One of the reasons I didn’t remarry and have other children was because I thought the next man I would get might probably not love my son the way his father would’ve loved him. And I thought, if I got other children, then I probably wouldn’t have been able to provide or care for them as much [because of the kind of attention Chris would need]. Otherwise, maybe I would’ve remarried and had other children.

But for you, if you get a child with this kind of condition, don’t give up on having other children. Look after them. Surrender them to God. Pray for them. Take them to church. Take them to school.




You took Chris to school, right?

Chris’ situation was different. I took him to a number of schools in Arua, Masindi, Seeta, and Kampala. When I took him to the last school [which was said to be an inclusive school], he was there for a year.

In his second year there, some parents complained that he was hugging too much and they didn’t like it. Christopher hugs everyone. He loves to hug. Those parents thought I had spoilt him. They weren’t comfortable with him hugging them and their children. They complained to the school administration. Christopher was sent away from that school. This happened just after I had paid his tuition.


That pained me so much. I cried.


I told those people, “You’re sending this boy away, you’re denying him access to education which is a basic right. You’re denying him the right to associate with others.” All they told me was to take him and home-school him because they couldn’t handle him anymore.

It became really difficult for me. But I tried what I could.


So I’d say for the others, if you have such children, take them to school, let them start early enough. Do your best. And always take them for regular medical care.


Videos from Next Media Uganda, Uganda Epilepsy Society and Epilepsy Action


About the interviewer: Ernest’ Jacob Tuape's day job is with a company on Rwenzori House that has a bunch of folks that crunch numbers for a living. He plays guitar and watches Formula One. He’s passionate about writing and children’s literacy. He volunteers with Sooo Many Stories and supports Forty Smiles over Forty Days Foundation whenever he can. And he loves to tell stories.

He blogs at this link I Am Tuape.



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