Friday, January 5, 2018
Birth of a Book
Is it right to spend millions of dollars to save the life of someone who will never contribute back to society?
Is it ever okay to deny life-saving surgery? If so, when, exactly?
Where do you draw the line on the use of experimental medication?
When is it okay to consider euthanasia?
These are questions that are very uncomfortable to discuss and are often avoided. These are just a few of the ethical dilemmas, however, that are hurled - typically most unexpectedly - at special needs parents. The uncertainty, anxiety and pain they can cause are a few of the reasons I began writing therapeutically when I was faced with them.
Our family is far from alone in facing such situations and decisions. The fact that most families feel isolated when they find themselves grappling with them is the reason therapists, nurses, friends and family suggested I share what I wrote with the world.
I hesitated. Ethical predicaments are not just perplexing and unpleasant; they are deeply personal, as well. When ethical dilemmas can loosely be defined as questions there "are no right answer to", you can be left feeling like you're making nothing but wrong choices when you're forced to actually live with them. For instance:
Where [exactly] is the line between the importance of a relationship between a [non-custodial] parent and his/her child and safety from verbal and emotional abuse for that child?
Where [exactly] is the line that defines unacceptable incompetence of paid caregivers (specifically when properly trained caregivers are extremely difficult to find)?
There is no exact line that answers either of those questions. So you stumble your way to your own answers, second-guessing yourself the entire time (and long afterward, as well). I had been honest in my writings about our experiences. Brutally honest. I hesitated at the suggestion to publish, because I feared judgement over the scrambles, missteps and mistakes I had openly admitted to.
Over the years, however, the potential benefit of support to families finding themselves in similar circumstances outweighed the potential criticism I imagined, so I set our story free. With Angel's Wings was born.
For the "general population" reader it is there to offer a "peek in the window" of a family living a life likely very different from their own. When the reader sees a mentally fragile child on the street, maybe that child will be looked upon with more admiration for his/her strength, rather than pity. Maybe if the reader comes across an autistic child, he/she will be a little more patient and a little less judgmental toward both the child and the parent. It can also be just plain interesting to read about others facing challenges we aren't. It's the little details that make you say, "Oh yeah...I never even thought of that being an issue!"
For readers within the special needs community, With Angel's Wings is there to offer hope that if I could find the light at the end of my tunnel, you can, too. It is there to hopefully offer companionship by way of admission to my own doubts, frustrations, struggles and screw-ups. I hope that a fellow special needs parent will understand this book is me saying, "You are not alone. You are not wrong for the way you feel. This, too, shall pass. And you are stronger than you know. You can do this."
Should you be interested in getting a copy of With Angel's Wings, seeing the chapter pictures, reading the epilogue or finding some comic relief: