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Julie Keon is used to strangers watching her 11-year-old daughter Meredith, but a woman’s gaze at a hospital four years ago ignited more inspiration than irritation.
Meredith suffered from a lack of oxygen during birth and as a result has severe cerebral palsy. The medical term is hypoxic-ischemic encephalopathy. No one knows why it happens during some deliveries and not others, but it’s Meredith’s reality, as it is for thousands of other medically fragile children.
Meredith’s condition required that she be held 15 hours a day, and Keon and her husband did that for more than eight years. She was doing that when she made eye contact with the stranger at CHEO.
“I took Meredith to a dentist appointment where I was sitting with her in the waiting room at CHEO, and I could feel this woman staring at me,” said Keon. “And I looked over at her and I thought, ‘Oh, somebody else watching us (again).'”
Only as she got up did she notice the woman had a baby in her arms who was just like Meredith when she was that age, with a feeding tube in her stomach. She knew that woman was scared and that seeing Meredith was a window into their future.
As Keon left with her arching and flailing daughter in her arms she smiled at the woman, and later wished she had taken a moment to talk to her.
“I remember being the mom with the baby in the waiting room at CHEO and remember seeing maybe a 15-year-old boy in a wheelchair and thinking, ‘That’s my future,’ and I panicked.”
When Keon arrived home, she felt compelled to write an essay, which she posted on her blog. It reached parents around the world. When a mother from rural Nebraska wrote her to thank her sharing her story, it inspired her to write her What I Would Tell You: One Mother’s Adventure with Medical Fragility.
Julie Keon with husband Tim Graham and daughter Meredith Graham, 12, has written a book about caring for their daughter with cerebral palsy.
“I want all those moms and dads to know that they aren’t alone,” said Keon, 43. “And to know their thoughts aren’t strange or weird or awful and bad and not to feel guilty about all the things that you think about.”
In the book, Keon describes how she and her husband Tim Graham, 44, waded into uncharted territory, at least for them. From receiving the initial diagnosis to meeting countless medical professionals — some with better people skills than others — it was a scary and murky start to their first journey into parenthood. She sees her book as a manual for new parents facing the same challenges, and a source for family, friends and medical professionals to understand their world.
“I think people are nervous around people with disabilities, people that are different,” says Keon, who wrote a chapter called Things to not say to parents like me.
“People say all kinds of things that they think are helpful, which they’re not. Like, ‘Everything happens for a reason’, and ‘God will only give you what you can handle.'”
There are 32 chapters that succinctly cover everything from feelings of isolation, fear and guilt to laughter, hope and self-care. In the chapter Befriending Grief, Keon writes about accepting “losses” such as her dream of having a healthy child and breastfeeding her baby. But also the less obvious ones like watching her daughter walk down the aisle or dance at her wedding.
Her friend Donna Thomson, a mother, author and caregiver advocate, wrote the foreword and described how the book will help to empower families.
“No parent is prepared for the birth of a child with complex disabilities or serious health challenges,” writes Thomson. “But mothers and fathers don’t need to feel quite so lonely. They don’t have to look away from their child’s eyes. ‘What I Would Tell You’ will make sure of that.”
The book launch will take place at Singing Pebble Books on May 7 from 7 to 9 p.m.
The book is available through Keon’s website.
查看原文...
Meredith suffered from a lack of oxygen during birth and as a result has severe cerebral palsy. The medical term is hypoxic-ischemic encephalopathy. No one knows why it happens during some deliveries and not others, but it’s Meredith’s reality, as it is for thousands of other medically fragile children.
Meredith’s condition required that she be held 15 hours a day, and Keon and her husband did that for more than eight years. She was doing that when she made eye contact with the stranger at CHEO.
“I took Meredith to a dentist appointment where I was sitting with her in the waiting room at CHEO, and I could feel this woman staring at me,” said Keon. “And I looked over at her and I thought, ‘Oh, somebody else watching us (again).'”
Only as she got up did she notice the woman had a baby in her arms who was just like Meredith when she was that age, with a feeding tube in her stomach. She knew that woman was scared and that seeing Meredith was a window into their future.
As Keon left with her arching and flailing daughter in her arms she smiled at the woman, and later wished she had taken a moment to talk to her.
“I remember being the mom with the baby in the waiting room at CHEO and remember seeing maybe a 15-year-old boy in a wheelchair and thinking, ‘That’s my future,’ and I panicked.”
When Keon arrived home, she felt compelled to write an essay, which she posted on her blog. It reached parents around the world. When a mother from rural Nebraska wrote her to thank her sharing her story, it inspired her to write her What I Would Tell You: One Mother’s Adventure with Medical Fragility.
Julie Keon with husband Tim Graham and daughter Meredith Graham, 12, has written a book about caring for their daughter with cerebral palsy.
“I want all those moms and dads to know that they aren’t alone,” said Keon, 43. “And to know their thoughts aren’t strange or weird or awful and bad and not to feel guilty about all the things that you think about.”
In the book, Keon describes how she and her husband Tim Graham, 44, waded into uncharted territory, at least for them. From receiving the initial diagnosis to meeting countless medical professionals — some with better people skills than others — it was a scary and murky start to their first journey into parenthood. She sees her book as a manual for new parents facing the same challenges, and a source for family, friends and medical professionals to understand their world.
“I think people are nervous around people with disabilities, people that are different,” says Keon, who wrote a chapter called Things to not say to parents like me.
“People say all kinds of things that they think are helpful, which they’re not. Like, ‘Everything happens for a reason’, and ‘God will only give you what you can handle.'”
There are 32 chapters that succinctly cover everything from feelings of isolation, fear and guilt to laughter, hope and self-care. In the chapter Befriending Grief, Keon writes about accepting “losses” such as her dream of having a healthy child and breastfeeding her baby. But also the less obvious ones like watching her daughter walk down the aisle or dance at her wedding.
Her friend Donna Thomson, a mother, author and caregiver advocate, wrote the foreword and described how the book will help to empower families.
“No parent is prepared for the birth of a child with complex disabilities or serious health challenges,” writes Thomson. “But mothers and fathers don’t need to feel quite so lonely. They don’t have to look away from their child’s eyes. ‘What I Would Tell You’ will make sure of that.”
The book launch will take place at Singing Pebble Books on May 7 from 7 to 9 p.m.
The book is available through Keon’s website.
查看原文...
