by Connie Tabbert
Editor
No one is lonelier than the parent of a newborn diagnosed with complex disabilities. Where there were dreams of birthday parties, senior proms, weddings and eventually grandchildren, there is instead a dark tunnel that is fraught with unknowable, life-threatening dangers.
Even the brightest and most compassionate medical professionals will not know what the future holds for the lives of families coping with the news of a severe disability or serious illness. For those parents who do survive the first days and years of family life with a complex baby, what will be the meanings they derive from their unique caregiving and desperate love? What wisdom will they gain with each crisis and recovery?
Julie Keon is not the only parent who has experienced a very different kind of love for her child, but she is the only one who has taken all she has learned and written it down. Parents may be handed instructions on how to operate a feeding pump and even lists of community resources for complex children. But until now, there has never been a book telling parents how to put one foot in front of the other, much less how to feel about that slow journey. The true story of parenting a child like my own Nicholas or Julie Keon’s Meredith is full of joy and pain, triumph and desperation, elation and exhaustion. Most of all though, and this is Julie’s message, it is a story of love.
—- a few lines from the foreword written by Donna Thomson in Julie Keon’s book … What I Would Tell You — One Mother’s Adventure in Medical Fragility
COBDEN — Sitting in a waiting lounge at Children’s Hospital of Eastern Ontario trying to hold daughter Meredith in her arms, mom Julie Keon was used to people staring at her.
When she looked around the lounge, it was no different when she noticed a woman was watching her.
“I thought she was just watching us because we’re interesting to look at,” she recalled. “When I stood up, I saw she was holding a baby and the baby looked a lot like Meredith did when she was a baby.
“I realized she was watching me because I was her future and I remembered being that new mother in that CHEO waiting lounge and seeing an older mom come in with a 14-year-old boy in a wheelchair and thinking ‘Oh my God, that’s my future’ and was feeling very panicky about it because at that time I had this little wee baby.”
Continuing, Ms. Keon said, “As I walked by her, I just looked at her and our eyes met and I smiled at her, and Meredith was arching over my shoulder, and I just walked by and smiled at her. It was like I wanted to give her that contact, ‘I know this is all crazy but it’s going to be OK,’ you know.
“When I walked outside the door of CHEO, this essay just came into my head…what I would tell you. If I had a chance to sit down with you, a new mother, this is what I would tell you about this path.”
Although not known at the time, that essay would be the tool Ms. Keon needed to write her book, which also goes by the same title as the essay — What I would Tell You…One Mother’s Adventure with Medical Fragility. She also noted following the essay, she wrote many blogs.
A Cobden resident most of her life, Ms. Keon and husband Tim, with the help of homecare employees, take care of their daughter Meredith, now 11, who was born with severe cerebral palsy.
The book has various parts, such as what I would tell you the early days, and another part is about family life, handling celebrations and holidays, how to stay married and how to help family members who have different ways of coping with a medically fragile child, Ms. Keon said.
“The book is an extension of the (original) essay,” she said. “It’s the raw reality of this lifestyle. It’s an expansion of the blog posts,” she said, noting, it’s not the blog posts just published.
However, Ms. Keon stressed, “It’s not our life story. People don’t want to read the memoir of my life.”
She’s hopeful this book will help those parents who receive the diagnosis their child has medical difficulties.
When Meredith was born, a book like this did not exist, she said.
“There was nothing to help me with Meredith, there wasn’t even social media,” Ms. Keon said. “CHEO had a book called You will Dream New Dreams and another book How to Raise Your Child Born with Cerebral Palsy.
“There were no raw emotions and the realities and the deep stuff, it wasn’t there.”
When Meredith was born, her life expectancy was seven to eight years old, Ms. Keon recalled.
“She’s now 11,” she said. “We’ve come to the place where where there is no thoughts of life expectancy, just her milestones.
“We see Meredith for who she is because we do know our time with her is limited.”
Ms. Keon said there is a journal about her first year of life with Merdith, which has been incorporated into the book at the end.
Ms.Keon has put into practice much of what she has written about.
She has learned many things, including that the family needs support and that the caregivers must take care of themselves.
“You have to be selfish and take care of yourself,” she caid. “As caregivers, we think you have to put their needs before us, but you can’t. You can’t be a martyr.”
However, Ms. Keon admitted, she did learn she must take care of herself when she was a doula, which is someone who takes care of a woman throughout her pregnancy, especially during the birth.
As for husband Tim, she said, “Tim fits in a big way. He’s as involved with Merdith’s care as I am.”
While he must go to work each day, he spends time with her when he’s at home.
It’s important the couple also maintain a healthy relationship, Ms. Keon said.
“I bet we’ve seen the inside of ever hotel in Renfrew County,” she said with a laugh.
With someone always in the home about 20 hours a day to help with Meredith’s care, she and Tim needed the privacy of a couple.
Ms. Keon says this book will help those parents who are in that first stage of shock of all of this.
Secondly, every person and professional who comes into contact with families with medically fragile children should read her book.
Ms. Keon recalls an email she received from a woman in rural Nebraska.
“She had four kids and the youngest has severe disabilities,” she said. “She was a single mom, living out in the middle of nowhere of Nebraska and somebody had sent her the essay and she said for the first time she didn’t feel alone.
“And I thought, I have to make this available to people and not just online. It has to be a book, something that people have contained in one…”
She said people can go online and go website to website, but with a book, it’s all contained and a person can read a chapter that they need at that moment, without going website to website to find what you are looking for.
Recalling the timeline for the book, Ms. Keon began writing it on the eve of Meredith’s 8th birthday. Three years later, she finished it, which was on Meredith’s 11th birthday. Then, it was editing and then time for review.
“This was an exciting and terrifying time for me,” she said.
There were a variety of people who reviewed the final version, including the mother of a medically fragile child, an aunt, father, neurology nurse, palliative care nurse, physician and a few others.
“All the reviews surprised me,” she said. “I started to bawl when I saw the first review. It was confirmation and validation.
“This book is as close as I’m going to get to giving birth to a second child,’ Ms. Keon said.
It was a lot of work and was very emotional and personal, she said.
It was sent to the printer April 6, the day before her own birthday.
The book will only be available once the three planned book launches are held. The launches are in Cobden, Ottawa and Toronto.
The book launch in Cobden will be held Wednesday, May 6 from 7 to 9 p.m. at the Whitewater Bromley Community Health Centre. Along with autographing books, Ms. Keon will be reading various passages.
The Ottawa book launch is Friday May 8, 7 to 9 p.m. at the Singing Pebble Books, 206 Main Street while the Toronto event is on May 9, 1 to 3 p.m., at the Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road.
The book is $24.95 plus tax and, after the three scheduled launches, will only be available through the publisher’s website, Four Pillar Books, which is an extension of iD2 Communications Inc. in British Columbia.
And before you wonder if Ms. Keon will write a second book, she said, “The second book is already starting to percolate.”
