By CONNIE TABBERT
Editor
WHITEWATER REGION (Cobden) — Julie Keon is anxiously awaiting the arrival of the revised edition of What I would Tell You … One Mother’s Adventure with Medical Fragility.
First published in May 2015, the revised edition has 12 new chapters and many of the original chapters have been revised.
While Ms. Keon is preparing to launch her second book, she feels as if this is her first book.
“I made every decision for this book,” she said while sitting in her newly renovated office at her Cobden home. “I published it myself. Every decision was mine, the type of paper, the font, the cover, everything.”
The cover of the book is a photo of Meredith’s hands taken by her father, Tim Graham, while the family “spent a memorable day at Bonnechere (Provincial) Park.” This cover is much more inspiring than the cover of the first book.
With the book launch just a week away, she said, “Now I’m nearing the end.
“It will be hugely gratifying to hold this one,” she said adding with a laugh, “When I hold it, I can say I did it my way.”
Explaining, she noted for the first book she worked with a publisher, who has the control. As a self-publisher, Ms. Keon has the control.
Looking back to how this all began, Ms. Keon said her daughter, Meredith, unexpectedly suffered complications at birth resulting in a significant brain injury. This book is a collection of the wisdom she has gained over the first 14 years of Meredith’s life. Meredith will be 14 on December 5. This family’s journey is a beacon of hope for those just starting this adventure. Ms. Keon’s words offer guidance not only to weary parents raising a child with extra needs and medical fragility but also to the professionals who care for them.
In the revised edition, a new section is preparing for the death of a medically fragile child — What I Would Tell You About Preparing for the Inevitable.
“It’s on a lot of parents’ minds who have children who are medically fragile,” Ms. Keon said. “Death is in the shadows, it’s always lurking around.”
Meredith is considered palliative, and so, like other parents, Ms. Keon and Mr. Graham have to consider quality versus quality.
“When is it time to let nature take its course,” she questioned.
Ms. Keon is also an older parent now and there have been changes over time.
“Meredith’s health status is changing,” she said. “Things could start to go downhill and we’ve had to have these conversations ourselves.”
Chapters in the new book include Savouring the Moment and Plans and Practicality. Ms. Keon said when a child dies suddenly, parents are not in a mental state of mind of what to do. Preparing for it, while something many people don’t want to do, is important.
Ms. Keon remembers when she decided to do a revised edition. Throughout the summer of 2017, she was poking away at various chapters and in September decided to publish it before the end of the year. Contacting a printer, she was advised the digital copy needed to be at the company by October 27.
“I got down to business and hammered it out in a number of weeks,” she said.
Dr. Peter Humphreys, a CHEO neurologist and a professor in pediatrics at the University of Ottawa, wrote the foreward. She noted he has stated that not only do parents and caregivers need to read her book, but so do professionals, those dealing with medically fragile children.
What I would Tell You is full of life lessons and it’s something anyone will get something out of reading it, she said.
Vania Oliveira, neonatal nurse and researcher, London, U.K , was one of the professionals who wrote a review of the book after reading it — “Some things just cannot be learned through medical books or research papers. Beautiful and brave, Julie’s sagacity has perfectly blended with high levels of emotional intelligence to create an enlightening and very inspiring book. A rare must read for families going through this journey and a promising reference for healthcare professionals.”
The author/publisher said, “Writing a book is akin to giving birth.”
The pregnancy itself is when you are writing; labour begins while you wait for the arrival of it; the birth is when you are finally holding the book in your hands, she explained.
The ‘baby’ arrives on the day when Purolator delivers 40 boxes of books and Ms. Keon can open one of them and all the decisions she made will come true.
The launch of the revised edition of What I Would Tell You is in Cobden on Thursday, Nov. 30 from 7 to 9 p.m. at St. Paul’s Anglican Church Hall on Crawford Street. She said the launch date was actually the due date of Meredith.
There is also a launch in Ottawa the following day from 7 to 9 p.m. at Singing Pebbles Books, 7 to 9 p.m. The store is located at 206 Main St., Ottawa.
Along with signing the book, Ms. Keon will do a reading from the book. She encourages everyone to come out, even if they aren’t going to purchase a book that evening.
