Originally published in the Trinidad Express , January 22, 2018
In February 2009 my daughter, Kinaya-Joy was born, little did I know that she would come bearing a very special mission, a transformative, life-changing experience that would have a major effect on my entire family.
Along with my wife Patricia and my son Kevon, we were now on a trajectory we least expected at this stage. Situations come our way that are meant to adjust our character and thinking, but the birth of my daughter would particularly affect me, she was the signpost for a new path, a journey that would rewire my entire life.
Kinaya was born with Down syndrome, later diagnosed with Autism Spectrum Disorder (ASD) and since December 2014 battling Acute Lymphoblastic Leukemia, which is cancer of the blood. At first, I considered this situation a major crisis demanding all my attention and a long-term engagement that was considered socially embarrassing. There was nothing in my upbringing, learning and observation that prepared me for this level of fathering.
I had no intention of retreating or hiding in a cave, which goes against my faith in the Lord Jesus Christ. I anchored my heart upon principles and values built within, over years of journeying with God. This became the basis for new ways of functioning, a redefinition of roles appropriate for the situation.
So it didn’t take long to get over the initial shock, the reality that I was now a parent of a child with Down syndrome. The negative way in which society viewed children with Down syndrome contributed to the initial confusion, but my faith in God proved much stronger and allowed me to accept my daughter’s reality like a mission handed down from an army general.
The experience was internally transformative, crafting a posture for engaging life as never before. I knew that my daughter’s development was hinged on my development. She will go only as far as I was willing to go, so I had to remove all limitations and embedded traditional mindsets. I went against my personal comfort to create a home environment that needed to be stimulating, providing sensory impact. We also took our daughter wherever we went.
I vowed to carry the responsibility of nurturing and raising this beautiful girl equally with my wife. We shared the load and commitment. I destroyed the man-cave, setup my business at home and prayed with my wife often for God to give us strength, wisdom and knowledge to do what was right for Kinaya. My wife stood her ground as a nurturing committed warrior.
Over time I discovered that when you commit to doing something that is fitting, the right people will come alongside to help. Friends of Elijah Centre, our church community, rallied around us ready to support in any way.
Relatives visited offering words of encouragement. We partnered with doctors, nurses, paediatricians and teachers. Our daughter’s developmental therapist went beyond the call to equip us to be more effective parents. I also got involved with NGOs to play my part in advocacy for children with special needs.
In the early days of my daughter’s life we thought we would be dealing only with Down syndrome. She was quiet and such a loving child. My wife and I learnt a lot about the condition and how normal a life Kinaya can have once we continue to be active and engaging with her. We discovered that for every 800 births, a child with Down syndrome is born?
This means there is a large population of children with Down syndrome in Trinidad and Tobago. The question is, why are they not visible and not often seen in public? Have we as a society created an unpleasant space with such negative social pressure, that parents are afraid or embarrassed to bring their kids out in public? As a parent, I was determined to not live in the shadows and by so doing encourage the public to be more accepting.
After a long period of troubling seizures we noticed that Kinaya’s behaviour had drastically changed. She was unusually hyper and roaming the house like the energizer-bunny. We had her assessed and learned that she also had Autism Spectrum Disorder. So, again, we searched the internet to learn as much as we could about Autism, what to expect and how to effectively treat with the disorder.
Around the same time in 2014 Kinaya was having tremendous pain in her joints. It took months of visits to medical specialists who diagnosed Kinaya with 90% blasts Acute Lymphoblastic Leukemia. It was rare that one child should be diagnosed with three major debilitating conditions. This last diagnosis was a great shock for us and proved to be the most challenging crisis we would ever have to face.
We mustered everything from within to be able to walk through this period of treatment: chemotherapy, daily injections, monthly surgery, spending months at the Mt Hope Children’s Hospital – JBF Ward, holding her in our arms, wishing we could carry her pain so that she would not suffer. We never left her side, I bought a laptop to work at her bedside.
We have accumulated real life experiences along with many accounts of divine intervention. We can now testify that our Lord has never left our side and through the support and prayer of friends and family we have endured the onslaught of the initial period of cancer treatment.
he Lord had no plans of cutting the path short, instead he used this situation to create major internal transformation, to sanitise our minds of frivolity, reveal truths about suffering and sacrifice and to express His love by helping us at every stage of our journey. What an awesome experience. To God be all the Glory.
The production of the Lions segment of the Lioness Project series, highlighting the experiences of ten men in the disability field, is supported by the Cause an Effect Organisation, the Massy Foundation and A Very Special Disabilities Forum.