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‘My Perfect Son Has Cerebral Palsy’ offers personal story as a roadmap
For Marie and Chooch Kennedy, raising their son Jimmy has been a journey filled with joy and pride.
Jimmy, now 18, has won awards for his prowess in the subject of science, volunteers regularly, dabbled in sports broadcasting and published poetry.
But in 1995, when Jimmy was first diagnosed with Cerebral Palsy shortly after his first birthday, the Kennedys, who had been married for only two years, were overwhelmed by the diagnosis. They faced the issues most parents face after a child receives a diagnosis of Cerebral Palsy; they had several questions, most of which appeared to have no clear answer: What was the prognosis for Jimmy? What caused Jimmy’s Cerebral Palsy? What would Jimmy’s future be like, and how would the young couple and their son cope as a family?
To help provide parents with some direction and advice, Marie Kennedy self-published her book, “My Perfect Son Has Cerebral Palsy: A Mother’s Guide of Helpful Hints,” in 1999. The 96-page book explains in detail the trials – and triumphs – the Kennedy’s experience during Jimmy’s first five years, and shares tips on how parents can more effectively advocate on behalf of their child.
“Our son James Blair Kennedy III, was born seven weeks early and came home from the hospital after nine days with a heart monitor,” remembers Marie, who lives with her husband and son in Indianapolis. “I kept notes and journals on everything he ate and did to be sure I was doing it right.
“After he was diagnosed with Cerebral Palsy, I continued to write in my journal daily,” said Marie. “Many suggested I write a book…I wanted to share the happiness, joy and importance of hope that is often overlooked. There are helpful tips, but it is really a love story.”
Marie and Chooch were a young couple who were married less than a year when they found out they were going to be new parents. Overjoyed at the prospect of becoming new parents, the couple’s happiness was soon overshadowed by the fact that Marie went into labor early.
Chooch and Marie welcomed Jimmy into their lives two months premature.
“We knew we would have to learn how to use a heart apnea monitor before we could take him home, and we were both a little afraid,” Marie wrote. “Actually, I was more than a little afraid. I was scared to dress, feed, or hold him—he was so tiny.”
For a while, it seemed that Jimmy would have few, if any physical issues. It was at Jimmy’s first birthday party when his parents became concerned that Jimmy was not developing on schedule.
“I remember being at my parent’s house and my dad having tears in his eyes as he watched Jimmy,” she said. “The next day, I asked my mom about it. She suggested that I take Jimmy to a different doctor. I agreed and felt confident that he would say that everything was fine.” Perhaps his mobility was just a little delayed. Instead, they received the diagnosis of Cerebral Palsy.
The couple was then referred to a neurologist. An MRI and further investigation revealed that Jimmy has spastic diplegia, which means his leg muscles have excess tone and are often tight.
Both Chooch and Marie were devastated. But once the shock wore off, the couple quickly realized they would need to actively advocate for Jimmy. That, however, can be difficult when information about medical care, social services, education and other factors were hard to come by.
Why not me?
“I try not to think, ‘why me?’ I think, ‘why not me?’ Would I rather my brother, sister, stranger or friend?” Marie wrote. “We will do whatever it takes to raise our son to be happy, strong and confident.”
Marie hopes “My Perfect Son” can be the roadmap that was missing when Jimmy was diagnosed.
“The response has been great,” she said. “My family and friends are proud of my book and our story. I have received the sweetest emails and letters from parents, doctors, therapists and others that appreciate the emotion and photos shared in the book.
“Many include phrases like, ‘I felt the exact same way,’ and ‘your book gave us hope and made us want to share the diagnosis with our family to have a cheering team for our child.’” Marie added. “That is so powerful to me, and it’s one of the things I am most proud of.”
Among Marie’s tips for parents she advocates asking questions of all individuals that will come into contact with your child; aggressively investigate all resources; seek help when needed; and take part in therapy to ensure that your child is benefiting from their medical treatment.
“Our son James Blair Kennedy III, was born seven weeks early and came home from the hospital after nine days with a heart monitor, I kept notes and journals on everything he ate and did to be sure I was doing it right.”
– Marie Kennedy
“After he was diagnosed with Cerebral Palsy, I continued to write in my journal daily. Many suggested I write a book…I wanted to share the happiness, joy and importance of hope that is often overlooked. There are helpful tips, but it is really a love story.”
– Marie Kennedy
Jimmy is five years old, he’s boisterous and bright. He took his first steps with the help of crutches when he was two years old. He participated in several modes of therapy. Through treatment and his family’s dedication to commitment, he continues to grow stronger and independent.
Yet, there were challenges, and sometimes, they were created by other people.
Marie tells the story of when a woman in line with her at a local mall turned her grandchildren’s heads away from Jimmy so they would not have to see him.
“She should keep him at home,” the woman said. Marie was mortified; Jimmy was working so hard on his mobility.
Marie confronted the woman. She said she is not ashamed of her son, and that she and Jimmy had as much right to be there as she and her grandchildren did.
Yesterday and Today
To date, the Kennedy family continues to thrive. Chooch is still a singer and musician, and Marie continues to write. Both parents continue to speak to parents and community groups about the effects of disability on children and families.
Jimmy is also doing well. He made the honor roll at Creekside Middle School and is about to graduate from Carmel High School in 2013. He will enter the University of Indianapolis with a $30,000 scholarship. He is studying broadcasting and hopes to have a career in sports broadcasting and motivational speaking.
He’s also been recognized for his achievements. He received the 2007 Prudential Spirit of Community Award in Washington, D.C. along with 100 other youth volunteers from across the United States. Jimmy received a $1,000 cash award as well as personal congratulations from Indianapolis Colts quarterback and Super Bowl MVP Peyton Manning.
Additionally, he participated in annual wrestling matches.
Jimmy also cares about disability issues. He served as a “volunteer patient” at the University of Indianapolis for nearly a decade. The program helped students learn about Cerebral Palsy. He also advocated for the addition of handrails at his high school’s football stadium, which were added in 2012.
Marie continues to receive letters from all over the world, sometimes from as far away as Greece, China, India, Africa, and the United Kingdom. When she’s not speaking, she still writes, and in 2000, an incredible opportunity presented itself.
A short story Marie penned called “Jimmy’s New Shoes” was included in the immensely popular “Chicken Soup for the Mother’s Soul II.” She also penned other articles that were featured in the periodical “Woman’s World Magazine,” and other parenting and disability publications.
Marie said that the focus of Chooch’s life will always be their son.
“We are so proud of him, his endurance, perseverance, and example and we are excited to see what he will accomplish next,” Marie said.
About Marie Kennedy
Marie Kennedy, the author of ‘My Perfect Son Has Cerebral Palsy’ is a wife, mother, motivational speaker, event planner and freelance writer. She speaks at hospitals, child advocacy conventions and at university medical school presentations. Her published articles include “Jimmy’s New Shoes” in the “Chicken Soup for the Mother’s Soul II” series, and “The Boy Who was Born Happy” for the “Woman’s World Magazine.”
To purchase ‘My Perfect Son’ and to learn more about the Kennedy’s, call 1-800-839-8640 or visit:
A child’s smile is enough to brighten anyone’s day. For parents of a child with Cerebral Palsy – even when non-verbal – all of those firsts – whether reading, writing, or hearing a child say “I love you” are not only possible, they’re probable. More so than ever children are re-conceiving how they can participate and interact with others.