Recently I was at a friends house and I entered into a deep conversation with her father. We started to talk about children. He told me about his three wonderful kids and how well they were doing and then asked me about mine.
I told him that I was the single parent of an adorable little 9 year old boy and that he had Cerebral Palsy and was severely disabled. I instantly received a look of shock and then a sympathetic pat on the back followed by ‘that’s really bad luck’.
I paused for a moment to consider my response. A few seconds later, I replied, “…thank you, but actually he is my greatest blessing…”.
To be fair, I didn’t hold this against him, because I do understand that it’s difficult for some people to know how to react when they hear my story. I have also come to realise that if you have not experienced disability first hand, or are directly linked to it in some way, it’s almost impossible to understand how it feels.
However, I would be lying if I said I wasn’t thoughtful, reflective and contemplative on the drive home. I revisted the last 9 years of my life with Eshan and relived them. I remembered once again, those moments when things went wrong all of a sudden, during the birthing process. I recall being told that our son had lacked 17 minutes of oxygen, received a severe brain injury and was very likely to be a ‘vegetable’ all his life.
So, was it really ‘bad luck’ that this happened to Eshan?
If Eshan didn’t have the last minute birthing complication… I would have probably continued to work in my city job making rich people even richer and chasing my own financially driven goals and dreams. We would have had to look for a house in the right school catchment area and would have entered into the rat race of what the best private school for our child was. We would have probably planned Eshan’s life up until 21 and thereafter planned his marriage!
However, after Eshan was born with the severe complications that he had… I experienced a phrase that I had only once heard before: ‘the sound of silence’. I was surrounded by the same world and the same people making the same noises…but I could hear absolutely nothing. There was just ‘silence’. Nothing resonated to me any more and suddenly I felt like I was in another world. I had money… but in an instant it had no currency or value because I couldn’t buy back the most important thing I wanted in the world… my son’s good health.
My perspective on life changed in an instant and I recall feeling like I was all alone on another planet. Suddenly I realised what we all take for granted. The simplest things like the fact that most of us can walk, talk, eat, swallow, touch, feel, express, think and most of all, be independent.
Try being fully dependent and not being able to walk, or talk, or eat by yourself, or touch or express how you are feeling. Imagine wanting to scratch when you have an itch, but you are not able to… or wanting to rub your eyes when soap is in them, but not being able to… or spit out the toothpaste in your mouth after you brush your teeth, but having to swallow it instead. Imagine wanting to kiss your daddy or mummy and telling them that you love them, but not being able to….
Welcome to Eshan’s world.
Yet… through his ‘disability’ and ‘inability’ he has opened up my eyes to a world of ‘ability’ that I did not know existed.
Herein comes the ‘Good Fortune’…
I am a better person today, than I was before Eshan was born. I now have an appreciation and adoration for the ‘real’ beauty and ‘essence’ of life, in a way I didn’t before.
The word humility, has a totally new meaning to me and I am delighted with the smallest of milestones. Rather than being excited when Eshan passes his GCSE’s with 9 A stars, I’m just happy when he has a good day that is full of belly laughs and smiles from his heart, as opposed to epileptic fits. His smile and laughter is truly infectious and affects me like the best chocolate high I could ever imagine!
Through Eshan’s eyes and through my experiences with him, I set up Kaleidoscope Investments, a company that is dedicated to helping disabled people to start their own businesses. I was able to see the communication challenges that people with disabilities face yet appreciate the potential they had.
In the last year alone I have met over 300 disabled people that want to start businesses and I have learnt the true meaning of the word talent, determination and resilience. Many of the ideas I have heard are quite simply amazing and the market of investing in disability is virtually non-existence.
This, is where I can honestly say that I have found my place in life. I know what our good Lord created me to do now. Work with people with disabilities and help them to realise their career related dreams, be it finding the perfect job, or self employment via starting their own business.
And all this… because of Eshan…
There was a time when Eshan was young, when I used to look at fathers shopping in Sainsbury’s on a Saturday morning, with their little boys holding their finger. I often wondered what that would feel like and I would often feel sad. I sometimes wondered what it would feel like talking to your son and having some form of feedback or noise over the phone instead of feeling like you are having a conversation with yourself. I have been often asked if I was ever angry or resentful because of what happened to him. The honest answer is that this has been the toughest journey of my existence. I have had to dig very deep to find an inner strength and purpose to give my life meaning again and my faith has been pivotal to this. I recall one verse in the Book of John (9:3) that helped to change my perspective: ‘It was not that this man sinned, or his parents, but that the works of God might be displayed in him.’
I have accepted that Eshan is simply perfect in my eyes and I could ask for no more. My greatest joy is watching him happy and smiling and knowing that through him, other disabled people will benefit from what both I and kaleidoscope can do, to make their dreams real.
So from my personal perspective, being disabled may on the outside of it, seem like ‘bad luck’ to some people, but if you dig beneath the surface, you will find there are some treasures of ‘good fortune’ tucked away. It’s just a matter of having the right perspective and looking past what initially meets the eye.
