How I found my footing while raising my cerebral palsy son

Ednah Mokeira and her son, Michael Shujaa, during an interview at her home in Kasarani, Nairobi Countyon April 26, 2023. Shujaa was diagnosed with cerebral palsy a few months after birth. Photo | Kennedy Amungo

What you need to know:

Her experience has transformed her outlook on life, and she is regaining her footing through her newfound cake-making business 

When she got pregnant with her son, like any other mother-to-be, Ednah Mokeira, 35, was looking forward to holding her healthy baby, nine months later. But that was not to be. Her son, Michael Shujaa, now aged three, was diagnosed with cerebral palsy, a condition that completely interrupted her life tossing her into uncertainty. Her experience has transformed her outlook on life, and she is regaining her footing through her newfound cake-making business 

“I did not have any challenges during pregnancy, except that when my labour pains started on October 19, 2019, they lasted for over 12 hours.

I didn’t dilate fully and had to undergo an emergency caesarian. The operation would last less than an hour, and the next day baby Shujaa was born.

My joy was however short-lived because I started suspecting that all was not well. He didn’t cry and was never put on oxygen or nursery immediately, as would be the norm. He also only started suckling after one week.

However, being a new mother, there were things I didn’t know, and so, I never bothered to inquire further. But then the next, I noticed his eyes were turning yellow and rolling, and he had convulsions.

After consulting, we decided to seek a second opinion and transferred him to another hospital.

Immediately after we arrived, he was put on oxygen and medication. 

After two days, I was told he had jaundice and he was put on treatment. He still wasn’t breastfeeding and was being tube fed.

Three weeks later, we were discharged from the hospital, but I had my suspicions about my son’s well-being. I had some knowledge about the health implications of a baby who doesn’t cry at birth.

I would notice that his right hand and leg were twitching, and after three months, he still didn’t have head control. The doctors would brush my worries away with an assurance that children attain milestones differently.

At six months, he still didn’t have head control and couldn’t sit, and I had to seek another option from a different doctor who prescribed therapy, and it was in one of the sessions that Shujaa was officially diagnosed with cerebral palsy.

Even after therapy, Shujaa had not attained control and could not sit for one year. 

After turning one, he convulsed and we had to be admitted. It is here that the doctor suggested that we should see a neurologist so he could prescribe anti-convulsing medicine.

Our journey with the neurologist and also the medication hasn’t been easy, because of the huge expense. My son has to be seen by the neurologist every month, meaning I have to pay consultation fees, and also buy drugs.

In a month, I part with up to Sh4000 for the neurologist and around sh6000 for his medication. For now, he goes for occupational therapy and hydrotherapy sessions twice a week. I pay Sh500 per session and if I am forced to have an in-house service, I have to part with at least Sh1000.

At times I take him to the Kenya Institute of Special Education (KISE), where I pay Sh100 per therapy. We are only allowed one-day session a week because there are many children in need.

Before I gave birth I was working as a merchandiser, but due to my son’s complications after birth, I couldn’t go back to work immediately. I was forced to quit my job after I failed to get a flexible work schedule.

In order to survive, I started offering laundry services thrice a week. I preferred this because I could go to work with my child.

When Shujaa turned two I started doing some small business, selling shoes and bags, and anything else I could afford to buy from the market. The small profit I would get, plus the support from family and friends, kept us going.

But this wasn’t enough. I needed more. So last year I decided to take a chance and came out publicly about my son’s condition. On the Facebook group; Africa Leading Women, I decided to share my challenges and that I desperately needed a job as a single mother raising a child with special needs. I even posted my academic qualifications indicating that I have a diploma in community development.

Interestingly, that very day I got a response from this certain lady who offered me sponsorship in baking beginner classes. I took the two-week lessons which were flexible enough to allow me to take care of my son.

I managed to complete the classes, and the same woman who had financed me offered me equipment and materials to start my baking business. Ever since then, slowly but surely I’ve been penetrating the market.

I do all kinds of cakes and flavours like vanilla, passion, red velvet, white or black forest. My clients are normally my friends, people from Facebook, and sometimes referrals.

In a good week, I can get between two to four orders.

Still, I haven’t reached the level that I can confidently say I am very comfortable because a special child has many needs like diapers, medicine, and doctors. I also have challenges doing deliveries because I have to do it with him on my back since he still cannot walk.

The face of humanity knocked on my doorstep again last month after I got a sponsorship for a four-day full course to perfect my baking skills, from Freli bakers in Kasarani. This opportunity came after I advertised my work in the Let’s Cook Kenyan Meals group on Facebook.

I also have been lucky to have a very supportive family. They accepted and love my son, ever ready to take care of him when I’m not around.

But I wouldn’t lie that it has been easy. There is stigma attached to cerebral palsy. Some consider it a curse, or something that the mother did or didn’t do culturally.

It was hard for my family to comprehend, but with time, they accepted it. And I wouldn’t blame them because even for me, as his mother, I struggled with acceptance. 

I hope to be an encouragement and inspiration to other parents raising children with special needs. This is so they can understand that their children are not handicapped, but instead abled differently.”