Today is Cerebral Palsy Awareness Day. According to recent research by the Centers for Disease Control, one in 278 children is affected by cerebral palsy and it’s the most common cause of motor disability in childhood. While most people have heard of cerebral palsy, very few know anything true about it, and most adults don’t have much experience with people with cerebral palsy. Until about twenty years ago, parents were persuaded to put children with physical disabilities away in institutions, so they were rarely seen in normal everyday life. Fortunately for all of us, this has changed. Children with CP grow up with their families and often are able to live relatively independently. And this means that we have the privilege of interacting with these amazing people much more often.
People with cerebral palsy are overcomers. They are inspiring and strong and can teach us a lot about a word we rarely hear about these days: perseverance. According to www.dictionary.com, perseverance means “steady persistence in a course of action, a purpose, a state, etc., esp. in spite of difficulties, obstacles, or discouragement.”
Difficulties, obstacles, and discouragement characterize life with CP all too well. But so does steady persistence.
I’ve always struggled to finish what I start. Then I met my daughter. She encountered more obstacles than anyone I’ve ever met, and she overcame many of them. She was born with a severely-deformed heart and received four open-heart surgeries in her first three years of life. She fought back from devastating setbacks again and again, never letting doctors tell her what she could and could not do. She delighted in being unpredictable right to the very end, when she passed away quietly and suddenly at age eight and a half.
Her spunk could only go so far, though. She was a normal girl on the inside, but she was trapped inside a body that wouldn’t cooperate with her. Even after eight years of steady therapy, stretching, surgery, and specialists, she was still unable to sit, roll over, crawl, feed herself, or bring a cup to her mouth on her own. The difficulties she faced were significant.
But I was the one who got discouraged, not her. My daughter was indomitable. She persevered, always with her trademark grin. She understood everything we said, belly-laughed at our antics, and learned to use a communication device so she could tell us jokes when she wasn’t harassing us for something she wanted. She lived on music, loved watching certain favorite DVDs, and always knew when we were hiding something from her. One morning I was getting her ready for school and then taking her younger siblings to the zoo. I never said the word “zoo,” but she saw my preparations, figured it out, and called me out!
While I wouldn’t trade having my daughter in our home for the world, caring for a person with CP is not easy. So in honor of CP Awareness Day, I’m calling for increased support for families who want to keep their loved ones in their homes. We need insurance companies to cover preventative healthcare – the treatments and equipment that stop or slow the deterioration of a body that doesn’t function right. We need an extra pair of hands to help us care for our loved ones in our homes. We need high quality research studies to identify and verify effective treatments and therapies, and the ones that aren’t. And we need schools with the financial resources, trained and enthusiastic staff, and moral resolve to actually educate our children, not just babysit them all day.
Let’s work together to make this happen.
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Joy Bennett is a writer, mother of four, wife to the same man for nearly twelve jam-packed years, spiritual seeker, lover of rich soil and music and sunshine, bereaved, learner, advocate, thinker, doer… in no particular order. She works part-time at Cincinnati Children’s Hospital Medical Center as a parent coordinator, representing family interests and experiences on teams of health care providers, and finding/training/placing family advisors on teams as well. She tweets as @reesespbc and blogs at www.joyinthisjourney.com.
