My father, my hero

I first started having sight problems when I was 18, though my loss of sight happened over a few years.  It forced me to miss a part of high school as I attended treatment in the UK before coming back to Kenya to complete my studies and KCSE exams before returning for treatment.  The cause of the condition was never really determined, and it’s not something that occupies my mind anymore, but it led to multiple complications including inflammation and glaucoma that eventually resulted in my sight loss. The multiple surgeries and laser treatments were necessary to stabilise the condition, treat the resulting effects and reduce the likelihood of losing my sight, but also to control the pressure within the eyes.

But this story isn’t about me. It is about my dad. And other extraordinary dads -- those who have committed their lives to care and provide for millions of children living with disability, when the easier thing is to walk away without a backward glance. My father is one such man. 

My life changed when I lost my sight soon after high school. It was at that point that I learned the value of sacrifice and what it takes to move mountains for the child you brought into this world because it is your job as a father to do so.  I could have easily slipped into the vicious cycle of hopelessness if it weren’t for the amazing and difficult decisions dad made without hesitation. 

We had just been told that I was going to lose my sight. The questions were profound. What do we do? What happens after? How much will it cost us? Do we have the money? Dad was our rock at that time. Conscious that he had to be strong for mum, but more so for me. 

To this day, I still wonder how dad paid my college fees, my medical bills (I underwent five surgeries), my expensive rehabilitation and the enormous cost of my support through college which must have run into millions. What I’ve got to learn over the years from him was that he did what he had to do as a father and that was a duty that I should never feel responsible for. For one, he made sure I had the best treatment at the best eye hospital in the world. 

What makes the experiences with dad even more powerful is the role he played after I lost my sight.  A guiding hand, a rock and most of all, the best friend I have.  To him, the fact that he retired after making sure I was totally independent and able to take care of myself is one of the biggest achievements in his life.

The decision he made to ensure I went through the rehabilitation needed to prepare me for life as a blind person even before I lost my sight was very inspired. It wasn’t easy, especially knowing why I had to go through the rehabilitation, but like college, the very expensive cost of the rehabilitation was motivation enough to knuckle down and get on with it. In a lot of ways, I started doing everything like a blind person even before I completely lost my sight. To date, I still use those skills from moving around independently to cooking, from confidence-building social skills to focusing on specific talents that I have.

College was challenging but very interesting. I was one of the first in a cohort of students being supported in a mainstream college. This added a significant cost on top of tuition, accommodation, and the on-going medical attention I needed. At one point, dad suggested “splitting the baby”.  Since it was too expensive, why don’t I send my support worker to attend some classes on my behalf while I do extra work elsewhere for revision or to catch up?

When visiting me, he spent a lot of time meeting and talking to my friends, college mates and medical staff who took a liking to him, even convincing them of the determination he has to make sure I make it through. This is when you know the value of Guardian Angels because these very people went out of their way during school hours, in the evenings and weekends to volunteer their support. They read study material and text books on to tape for me, even turning up in hospital and taking turns with the nurses to help me revise or keep up while I was admitted in hospital for a couple of operations.

He did the job search for me

I experienced first-hand how good dad was at networking, striking a friendship with the gentleman who was in charge of special needs support. Soon enough, I found out the method to his madness because even before I finished my exams, the same guy offered me my first job, teaching ICT at a college he was moving to as the principal.  I started as a volunteer, but within five months I was on a full salary. I’m a quick study so naturally I used the skills I learned from him for career growth and in my personal life.   

A couple of decades on, these same skills have served me well as I became a capable and competent leader in the work I’ve done, and especially being an innovator and trail blazer in the use of technology for accessibility in the arts and creative enterprises, in education, health, development practice and in industry.  

Unfortunately, not many extraordinary dads have the same options my dad had, or the same I have for my son. For many, the biggest burden is financial. They have to pay for frequent therapy for their children, buy medicine which most children need for the rest of their lives, pay for special educational support and private transport, all in addition to taking care and keeping the roof over the heads of the rest of the family. Their daily struggles often go untold. For many, the hopelessness is excruciating, especially for those who are jobless or live in parts of the country without essential services.

At least 3.8 million Kenyans live with a disability, many of them children. If you’re an extraordinary dad reading this story, we want you to know that you’re not alone. The dads have come together as a peer support group determined to work together to find solutions that will support the well-being of our children and families now and in the future.

It’s a safe space for you to share, learn, network, explore and implement mutual solutions to address the challenges you have. We appreciate and celebrate all the extraordinary super mums who dedicate their lives to their differently talented children, and through this group, you will get to support them even better. 

A lot of people ask me what my greatest challenge has been so far. I would say that its two fold. Firstly, to learn how to live life all over again in my early 20’s and secondly, that every day is still a challenge. Everything you do is a reminder of the limitation of sight and most times, the objective is to get through the day.  If you can do that, it will have been a good day.

- Odumbe (@iodumbekute) is an author, thought leader, social justice activist, strategy consultant and political commentator.