Lighting the Path Leaning into a Hopeful Future as a Special Needs Parent
By Sue-Ann Wayow
CARING for a brain-damaged daughter from eight-months-old who is bed-ridden is no easy task for a mother.
Dr Marcia Nathai-Balkissoon is one such mother who wants to provide support for parents of special needs children.
As a lecturer at the University of the West Indies (UWI), Dr Nathai-Balkissoon is mostly drawn to the fields of health, safety and wellness, business and personal strategy and teaching and learning. She is a certified Parent Skills Master Trainer and enjoys working with her husband to adapt interventions for their daughter and helping other parents to do the same.
She went a step further recently with the publication of her first book Lighting the Path Leaning into a Hopeful Future as a Special Needs Parent, inspired by her daughter Emma sharing her pain, struggles and strategies.
The book focusses on issues such as helping special needs families to feel more connected, gain visibility, access, support, tapping into resilience, sharing experiences to boost inclusion and reducing isolation.
The book was hidden in Dr Nathai-Balkissoon’s mind for years but only in the latter part of last year did it “feel right” for her to begin writing and take approximately nine months to complete.
The preface introduces readers to Emma’s situation. She was born with a congenital heart issue which the parents were told had to worsen until surgery became unavoidable. When she was eight-months old, Emma began turning blue as her body was being undersupplied with oxygen.
Open-heart surgery was successful but while she was being taken off the ventilator, a mistake in the Intensive Care Unit caused her to bleed out and flat line.
She was severely brain damaged and lost all her senses and ability to suck and swallow.
Dr Nathai-Balkissoon said, “The book is written to hold the hand of parents whose children are born with special needs or develop special needs following some traumatic event later on in their childhood. It addresses several of the major concerns and pain points that arise for special needs families.”
In the preface she wrote, “Had I been watching this in a movie, I’d have been horrified, drawn to tears from feeling the pain of another mother and watching her baby’s future just crash in an instant. But this was my real life, and some supernatural force or innate ability was keeping my family upright.
“With nowhere left to turn, we held hands and prayed. ‘Lord,’ I remember saying, ‘I know I have always prayed for you to help me accept your will, but I can’t anymore. Please give us back our child.’ Immediately, Emma’s heart restarted. How could we have prayed for her to come back to us and then decide it was inconvenient to keep her in our life? With a dark future looming, we had decisions to make, and our first was that we absolutely wanted our girl! That is why I am writing this book. I don’t want another parent or guardian to ever have to face what we did alone. This book was written for every person who feels fear about something that has just happened to a loved one.”
The 11 chapters in the book deals with the actual situation, feelings about it, having a vision, the role of spirituality, planning strategies, dealing with other children and one’s love relationship, personal health and the health of the family, financial planning and resilience.
She told AZPNews.com, “My family and I were concerned about keeping Em safe during the pandemic and so were doing more to support Em at home. I was also supporting many of my students who were experiencing more isolation, apathy, demotivation, and fear. What they were feeling reflected aspects of what we had gone through on this special needs journey. So I felt that the pandemic was exactly the right time for this book.
“I feel hopeful and happy to have transferred to the page all these experiences and lessons brought to us by Emma. Despite her being so hurt, I believe her big purpose is to spread light, love and healing, and this book is one of the ways that is happening.”
Lighting the Path can be purchased on Amazon and other major retailers.