Interview with Christine Elizabeth Staple-Ebanks

Raising Nathan: Every Life Has a Story is your first published work. How do you feel right now?
Happy, fulfilled, excited, grateful and looking forward to wonderful possibilities!
When did you first start writing?
I have always believed myself to be a writer. From as far back as I can remember, I have always wanted to write, thought I had thought that my first work would have been fiction.
What motivated you to write this book - Raising Nathan: Every Life Has a Story?
My son Nathan was diagnosed with cerebral palsy at the age of nine months old. The specialist dropped the ‘bomb’ on me in such a clinical and heartless way, totally oblivious to my shock and despair with the news. I was terrified. In retrospect, what terrified me it wasn’t the diagnosis, it was the fact that I did not understand what the condition was, what to expect for my child as he developed, if he developed… or what I could do as a mother to help my child. I felt lost, depressed, and alone. What made it worst was the how of how the specialist presented the ‘death sentence’. He told me what my son would never, never do… though my child was only months old. One specialist even told me that I “shouldn’t raise my hope for this one (my child), as he may not even survive childhood’. This was delivered in a fait accompli way.

For the first 2 ½ years, I lived with a dark cloud of doom and gloom over my head. I wanted to understand just want we were up against. I wanted to talk to someone who had been there to think out loud about the swilling of emotions which consumed me my every waking and sleeping minute… About the headache and panic that I lived with every day since the diagnosis. Grasping at hope, after a while, I started searching for answers… any information. I read everything I could find on the internet and in doing so came across some great books which helped me significant. Then I came across a book entitled ‘Children with Cerebral Palsy: A Parent’s Guide” edited by Elaine Geralis, the parent of a young adult with cerebral palsy. Elaine shared her Journey with her son Robert and how her son inspired her to become an advocate for persons with disabilities. She inspired me!

Suddenly, my son’s circumstances made more sense to me. I started journaling in earnest when Nathan was about a year old. Then at 2 ½ years old, we fundraised and took him to a rehabilitation facility in the United States where he received his first interdisciplinary assessment, and I my first parent training. I request second copies of everything and wrote down everything. I didn’t then have a plan for the information, but I knew that I needed to document my experiences. Through this experience, the clouds of drought and fear began to abate and I felt a stirring of hope begin to take shape.

Bit by bit, I started to see things through the eyes of my child. Like when I am going somewhere new for the first time, my mind would scan the space to see how Nathan would gain access or if he would be comfortable and safe. I learned how to cope. I became expert in spotting illnesses without being a helicopter parent. Whilst in Florida, I saw through the eyes of parents who had access to the services and support they and their child need. These cemented the idea that I needed to establish something like I saw there here in Jamaica. I saw purpose.

As purpose became the dominant thought, I stopped feeling sorry for myself and my child. I saw him as a child of hope, of tremendous courage and as a light to shine into the darkness of how we had come as a nation to obscure our citizens with disabilities. I saw the need for the stories to be told to shine the spotlight into these situations.

So why did I write this book? I wrote the book because I had to. I was experiencing this tremendous enlightenment through my son… Seeing things from a different perspective. I no long saw the dis all I saw was ability. I saw opportunity to do things differently. I saw my son and I wanted to unveil him to the world to give a face to disability. I saw that persons with disabilities are just like you and me, human beings who are otherwise whole, who came into the world to teach us about ourselves and how to treat others. My journey as a mother parenting a child with dis-abilities has given me a different perspective on life. Nathan has unlocked potential within me that I didn’t even know was there! He has deepen my capacity for love, strengthen my faith and belief in the infallible wisdom of God. His journey and my connecting at my heart string to this journey has anchored me in my commitment as a citizen of Jamaica to rely upon my eternal father to ‘strengthen me the meek to cherish’ and to ‘give us (me) us vision less we perish’. This has been my saving grace.

Through Nathan, I was connected with scores of children and families of this ‘invisible population’, which I have discovered in a very large population. For instance, whilst in the United States on one of our trips, I met a young man who was born without a brain who at twenty four years of age could walk, talk and sing even though the presentation of his body and organs (mouth etc.) did not line up with what conventional therapist told me needed to be in place for my son to accomplish the developments of speech or mobility for example. These stories gave me hope to reach and to stretch despite the ‘prognosis’.
What do you hope to accomplish through the Book?
I wrote Raising Nathan: Every life has a story as a collection of my and Nathan stories, infused with the stories of others we have met along our journey. The book is a biography, a reference and tool for hope and for change. Raising Nathan: Every life has a story gives voice, story, and power to families of children with disabilities in Jamaica, and all over the world. The book offer a detailed examination of my family's life in learning how to include, love and support our son and each other. Through this work, I wish to inspire other parents at different stages of their journey.

I also want to give voice to persons with disabilities and the issues of disability in a raw and uncensored way, so that others may catch a glimpse of the lived lives of persons with dis-abilities. I wanted to speak to practitioners – doctors, specialists, teachers, policy-makers that every life has value and every life matters! I wanted to deliver the message that my son came here in his broke body to give… it is a message of hope, love, faith, community, brotherhood, servanthood and nationhood. I wrote the book because I wanted to unlock my son’s voice and through him the voices of every boy, girl, man and woman with a dis-ability, lending all our voices to usher in the change, so that together we will “stand up for Justice, Brotherhood and Peace, … work diligently and creatively, … think generously and honestly, so that Jamaica may, under God, increase in beauty, fellowship and prosperity, and play her part in advancing the welfare of the whole human race”.

Such is my pledge before God and all mankind as a daughter of the this soil… Jamaica land we love.
What is the greatest joy of writing for you?
The healing that I get from sharing my story... to hear the testimonials of how my book is making a difference for others.
Published 2016-06-19.
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