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Cerebral palsy: One mother's journey

By Amy Wilde

For the Deseret News

Published: Sunday, Aug. 14 2011 3:00 p.m. MDT

Melanie Grimaud poses with son Crew, who has cerebral palsy.

Grimaud family

Melanie Grimaud straps on her running shoes and gets ready for her daily dose of self-therapy.

As a mother caring for a child who has a disability, running is her sanity. She uses each step, each mile and each marathon as a way to nurture herself so that she can stand ready to help her son day after day.

Her strength comes from endurance, and the endurance builds patience.

“He is our little miracle,” Grimaud says of her son Crew, who seven years ago suffered a traumatic birth in which he was deprived of precious and critical oxygen for an extended period of time, resulting in cerebral palsy.

According to the Centers for Disease Control and Prevention, 10,000 babies per year in the U.S. will develop cerebral palsy, or two to three per 1,000 births.

“As I was expecting him, I planned to right every wrong I had made with the first two kids,” said Grimaud, who is from Perry and has three boys.

“This time around, I would make sure he was well taught educationally and well-mannered. Not that the other two weren’t, but I was really hard on myself and thought I could improve my mothering skills.”

From the moment he was born, Grimaud knew her son needed her in a way she never could have imagined before.

Crew is non-verbal, hard of hearing, has microcephaly, seizure disorders and needs help sitting, standing and walking.

“Caring for Crew has empowered me. I never thought I would be the one in these shoes, and now that this is my life, I’ve had to learn and grow in ways I never thought possible,” Grimaud said.

“This has taught me so much about people, life and most importantly myself.” Grimaud is a mother who matters. Her days are spent lifting her son in and out of his chair, making him comfortable and working with him over and over on alternative communication methods.

There are days filled with challenge as she tries to explain to him in a language he can understand that the legs he wants to use for running do not work. His little mind cannot yet comprehend the limitations of his body.

“The communication barrier is very frustrating, not only to Crew but to the entire family. Most of the time at home is spent caring for Crew, which can be very physically and emotionally draining,” Grimaud said. “If there was ever a time in this journey where I felt pushed beyond my limits, I would have to say those long winter months this past year were it. We started to feel like we lost our happy little boy and it was very hard and exhausting to watch him change despite our efforts to do everything we could to make him comfortable and happy.”

An article, “The Health and Well-Being of Caregivers of Children with Cerebral Palsy,” published by the Pediatric Journal, says, “Although caregiving is a normal part of being the parent of a young child, this role takes on an entirely different significance when a child experiences functional limitations and possible long-term dependence. One of the main challenges for parents is to manage their child’s chronic health problems effectively and juggle this role with the requirements of everyday living.”

A long time ago, Grimaud came to terms with Crew’s disability, and now her heart grows when she sees others help her son with acts of kindness.

“Those who care for Crew in any way are my best friends.” Family members, neighbors, speech pathologists and teachers have all become a square in the quilt of Crew’s life, but the thread that continues to hold him together is always his mother, who daily finds the silver lining.

“At the end of the day, regardless of whatever we’ve been through, I can always count on his arms around my neck, his hugs and kisses,” Grimaud says of her son, who has taught her so much about love.

“I always rock him to sleep, and holding his little sleeping body in my arms is priceless.”

Amy Wilde is a writer living in Brigham City, Utah. You can read her blog at http://amywildeatmosphere.blogspot.com/, follow her on twitter at wildeatmosphere or e-mail her at wilde.amy@gmail.com.

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