To Table of Contents in art where he entered and was placed 10th in a National Art Competition for children with special needs in Jamaica( 2017). However, due to the limited availability of rehabilitation therapies( Occupational, Speech and Physical) in Jamaica, and the low availability of equipment such as adaptive wheelchairs, augmented communication systems, at 16 years old, Nathan is not able to walk, feed himself or brush his teeth. He carries low weight and is adaptive skills are well below is capability.
Since mid-2020, we are living in the United States. Nathan has just started school and we are excited to see the possibilities when he is given the supports, he needs.
I have often shared that it was never Nathan’ s disability which challenged me the most. It was the not knowing. Not having the information earlier on that would have helped me to be more intentional in the things I did with him. It was the fact that the view of my son was obscured by the“ specialness of his needs”. It overwhelmed me for a while--- 2 ½ years to be exact. Time that I should have spent bonding with my son, was spent cowering in crippling fear that he would die. I didn’ t know at that time that cerebral was not a“ death sentence.” I had no one to turn to.
Each day I would look at my child and because I didn’ t understand what the disability meant or what I was seeing him do, it made me feel for a while that he was“ broken.” This eclipsed the joy of parenting a beautiful child, and I feel like I missed out on those early years. I guess that is partly why I am so passionate to talk parents, especially when they have just gotten the diagnosis. I wished someone had talked to me then. Since the day I learned to see him, to really see Nathan, he has brought me, our family and everyone who meet him so much joy. When he laughs, it is so infectious, that everyone laughs with him, even if the“ joke” was all that funny( smile). Today as I look back, the way I see it, 16 years ago when my son’ s Nathan was first diagnosed with a disability – cerebral palsy( CP), I thought my life was over. I thought that I would spend the rest of my days locked away caring for a“ disabled” child. I had never felt such pain, despondence, and hopelessness as I did then. It felt like wherever I looked all I could see was despair. I felt powerless. Back then, there was no one I could turn to help me make sense of this diagnosis. I didn’ t know how to pick up the pieces. Yet, somehow, my faith in God, my family and close friends and my village community of supporters saw me through.
Today, looking back I can see clearly how what came to my
family as“ tragedy” became a beacon of hope for so many children, families, and people with disabilities. My son’ s life has made a difference for thousands of children with disabilities and their families in Jamaica. He has inspired a movement to increase the participation, inclusion, and empowerment of people with disabilities in Jamaica and other countries that I have been to speak. He has taught me that every life matters! I am thankful for the gift of my son Nathan.
I have often shared that it was never Nathan’ s disability which challenged me the most. It was the not knowing.