Lighting the Path: Leaning into a Hopeful Future as a Special Needs Parent by Marcia Nathai-Balkissoon
My rating: 5 of 5 stars

This book is an inspiring collection of experiences, thoughts, feelings and emotions centred around life with a special needs child. It is a life of struggle, hardship, ups and downs but overall rewards as you see them flourish despite their many challenges they face. Marcia Nathai-Balkisson talks about all these things and more, as she explores life before and after the birth of her second child Emma in Trinidad and Tobago, where she lives with her husband, Emma and her first born some Brian. She talks about the challenges she has faced and how she has overcome some and is working on overcoming the rest, as each chapter focuses on a different subject, it is a compendium of information, hints, tips, experiences, and advice, with a checklist at the end of the important things to be taken away from that particular chapter, but it is not just for those in the same situation as she is, there are things within this book that anyone can take on board and use in their own lives.

The book starts with the story of Emma’s birth and the defects they found which led to the need for open heart surgery as she grew and the complications which arose because of it, leaving her brain damaged, her mobility and motility reduced, as well as experiencing pain, spasms and a high sensitivity to touch. The book progresses through Emma’s life, explaining her challenges between that age and the age of nine when the book was written. It then moves on to explain how important it is to acknowledge what happened, acknowledge how it made you feel at the time and acknowledge what changes have had to be made and what needs to be done now. The next talks about coping with the situation and the need to take it day by day, task by task and finding what the single most important thing to achieve on that day is, how important self care is to staying healthy in order to be able to support your family and yourself, how to relieve stress and how essential it is to start the day in the right way, it also explains how these things can impact on the child and their stress levels if not done properly. There is also a section on planning for the future, both immediate and in the years ahead, this includes financially, personally and familially, some of which is expanded on further into the book.

One key thing is on how to recognise isolation and loneliness, how to recognise the signs of it and how to reduce it, it talks about relationships with family and friends, how they can grow and diminish, as well and what it takes to maintain them, how to deal with your feelings and how important connections can be, even if they are only on the internet and especially within support groups, as well as the importance of sharing your story with them. It also looks at how to create your vision for the future, how to connect it with your emotions and then the importance of looking back on it and updating it on a yearly basis to see just how far you have come, even if you don’t realise it at the time. The next section focuses on spirituality and how this can support you in your darkest times, as well as the need for research into what interventions can be done at home to improve the development of your child, as well as finding the right medical professionals and therapists who you can fully work with knowing they see things from your perspective, trusting your intuition and being your own advocate when you go to speak with them. Learn all you can about other children with the same medical and developmental issues, but don’t forget about any other children in the family and ensure that you still take time to show them you love them in the way best suited to them, keep looking at their development and help them as much as your special needs child and prepare for their future just as much as the other child too.
Another important thing is to keep your own and your families health at optimum levels and take the same care that you would with your child, look at nutrition, sleep and emotional resilience, as well as financial security and how to keep a balance between work, play, caring duties and your own physical and mental health, make shared decisions and compromise where you need to, do not neglect yourself or your partner and celebrate what you have achieved regularly. Make sure that the little milestones are recorded and acknowledged, celebrate how far you have come, this will help in the future when the challenging times rear their heads, which will happen.

All in all this book is full of useful information and experiences, but it does not replace medical or legal advice.

Reviewed by @roxsannel

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