By LARRY ANDREW
CHILDREN with special needs are not sent to special parents; they make parents special.
Author Evah Loloh Kuamin says so – and why. Her book My Love -Natugu, is a love story of a mother’s (her own) response to the parental challenges in caring for a special-needs child in vastly different ways.
The book was launched on July 17 in Lae International by Digicel Foundation chief executive officer Serena Sasingian and EMTV Lae bureau chief Scott Waide.
My Love -Natugu is about self-consciousness, sentimentality and even plain doggedness. It is meant to get the message across, through the story of a special-needs child, that has the capacity to move even the stoniest and coldest of hearts. Kuamin wrote the book about her journey with her daughter Sarah who was six when she succumbed to illness that resulted in disability.
Sarah, now 12 years old, from Central and East New Britain parents, had been bedridden and hadn’t able to walk for almost seven years now. She has lost the ability to walk, talk and do things that others in her age group can do.
Amazingly, Sarah has fought off the disease in the sense that she seems to be getting better every day.
The message of the book is particularly to parents and caregivers of special-needs people (children and adults) to continue to be who they are for their special persons and never give up.
But it is certainly not easy.
“It is a very tiring task to be a parent or caregiver of a special needs person,” says Kuamin.
What has driven her as a mother and a writer is to encourage parents and caregivers that they are not alone. And despite various differences in experience, what holds true is that children with special needs make their parents special.
And this is what the East New Britain woman had to say about her tedious journey with her little princess Sarah through thick and thin in the last seven years.
“In Papua New Guinea today, I wonder why there has been little on this topic. There was the odd story in a collection of books, newspapers, a few poems, Facebook pages and blogs that I remember reading some time back,” the author says.
“In today’s world there are thousands of ways people share stories of relationships from every possible angle. But for me, I noticed that the relationship that has been conspicuously missing has been that of a special need child and his or her parents.
“You see, human relationships are the staple of literature. Lovers write about their partners, husbands about their wives, grown-up children about their mothers and fathers and the list goes on and on. But it ends somewhere before we get to the peculiarly uncomfortable topic of how a special needs parent feels about their child.
“Of course there are plenty of special needs books, manuals, research papers, guides, handbooks, psychology guides, hospital care, magazines, special-needs parenting guide books to help parents of special needs children in caring for them
“But all this literature, as valuable as they may be in their different ways, do not tell the real story of what it is like to be caring and managing a child with special needs. The real story of what it is like, living in a country like Papua New Guinea and parenting a child with special needs. It involves a lot more blood, dreams, tears, screams, seizure attacks and emotions than the authorities and experts prepare to reveal.
“The complexities of having to raise and manage a child with special needs is a very compelling topic. For me, the instinct to write about my daughter Sarah has been the most compelling experience of my life. It is immensely strong.
“So what is the real story about caring for a child with special needs? And can this book offer it? Well, for a start whatever the real story might be, My Love – Natugu shows that despite my eagerness for knowledge (and despite the information gleaned from all those special needs books), after this event (launching of the book) a special-needs parent comes to understand that she knows nothing.
“Because no one has talked about how it could be a love affair. The maternal bond has often been mentioned, but no one has explained just how that bond is; how it is in those first few week or months of your special needs-child’s condition. It has been literally impossible for a mother to be away from her child. How she has to carry her from room to room, and refuse to go out and leave her side.
“All she wanted between the feeding, the washing, seizure attacks has been to be beside her special child, hold her, smell her, and gaze adoringly at the person who is the flesh of her flesh and blood of her blood.
“No one explained to me what I would expect from Sarah’s condition — her complicated sleeping pattern, her loss of senses, and her excruciating pain exerted in her brain and entire body from her seizure attacks.
“No one told me what diet was good for her condition, that she shouldn’t be placed under extremely bright light or loud sounds, and the very few that did – I embraced wholeheartedly and put that into action. It feels so great to be needed. No so terrifying.
“Being a parent of a special-needs child is an amazing thing. It has challenged me and brought out the best of my entire being.
“Ordinarily, I feel that we don’t feel the need to talk about it, or educate the next generation into supporting the cause. Yet, every special-needs parent or carer’s experience is unique. The birth or sudden thrust of a child into a special needs condition is a phenomenon. Every mark of their birth is a different shape or texture. And every special-needs individual, even in the womb or born, is an absolute miracle.
“In a Papua New Guinea context, despite the utter commonness of my experience with Sarah, it is still in certain contexts, taboo, to discuss certain aspects of caring for special-needs children, even to acknowledge their existence. Stigma and discrimination do exist for this group of people.
“The task I set out writing this book was because I felt it was time, time to break some of these taboos. If it was indulgent or thought to draw sympathy, I really didn’t care. If it was emotional and soppy, even better. Let’s get emotional for a change. Let me indulge you with this special-needs story, some description of fierce, powerful special-needs child worship. And like a Tolai aigir dish, it is spiced up with a bit of blood and guts to care, leavened with a touch of humour.
“Some of the pieces in this book describe the apocalyptic intensity of the pain and the impossibility of forgetting. So the real story, as My Love-Natugu shows, is as diverse as it is powerful, as confronting as it is compelling. It is as I said, about the blood and guts in caring for a special-needs child.
“The disappointments, the fears, the confusion, the sense of betrayal, even the horror. It’s really about how bad the pain a parent feels; like cutting off your own leg, being blown apart, having a knife thrust deep in your ear, or erupting – like Mt Tavurvur resides inside of you.
“The story above all, is a continuing one. I hope that my book gives you the immense pleasure to read through the different chapters, again and again and to know acceptance. It is all okay. You can manage. And every fragment of this entire book put together has its own special story.
“This book is from the heart of a mother and written from the instinct that we call motherly love. Thank you and may you be inspired and encouraged to continue caring and loving special-needs children.
“I leave you all with this phrase from L. Robert Keck: “But I do know this: Love can be an incredible powerful healing force and its scope, its capabilities and its mystery far exceed what our left brain can comprehend. We would be foolish to underestimate the healing power of human connectedness, fueled by the energy of love. After all, the power of love itself is itself a miracle.”
EMTV’s Scott Waide, in congratulating Kuamin said, “Evah is a very powerful writer and what she writes will pull out everything inside of you and force you to go to places you don’t want to go and makes you confront your emotions. Before I even knew Evah, reading what she writes in her Facebook page, I encourage her to write more and eventually she began to do that.
“It’s going to be challenge reading that book; it’s going to be challenge reading that book. I’ve read bits and pieces that she posted online. Sarah is a classic example of a child that has come into a mother’s life and brought out the best in her.
“And if Sarah didn’t happen Evah wouldn’t have written the book, if Sarah didn’t happen Evah wouldn’t be here to inspire a generation of Papua New Guineans,” said Waide.
Serena Sasingian said Digicel Foundation was especially focused on children with special needs and through the chairman Dennis O’Brian, they were was passionately supporting efforts targeting them.
She made a commitment on the foundation’s behalf to help in getting the story out and looked forward to supporting the cause.
By LARRY ANDREW