Arlyn Smith

Some of Steve’s family

         Hope for  Childhood Cerebral Palsy: The Rainbow Beyond the Storm

The following is only my story. An example of the amazing life that is possible for any child born with cerebral palsy. I wanted to emphasize the fact that if my family hadn’t fought for me: God knows absolutely none of this would have happened. If the hadn’t given me that scooter. If they had listened to doctors who thought I was beyond help. If I had been placed in a home. I would have become another statistic in a textbook. The lengths that my mother went for me are priceless to me. Undoubtedly.

I want parents of children with CP to know something: the tears, exhaustion, the standing up for your child….is worth everything. Not to sound dramatic, but:

Your telling your child they “CAN”: your belief in your child as opposed to what is spoon-fed to you by doctors… can literally give your child a life.

 Parents are often told to believe their child is a waste of time and energy: the time spent caring for them is not fair to other family members. I’ll pose this question. How “fair” is it to a child to live their life feeling like they are a mistake as a human being… worthless and shameful?

Parents of children with CP are quick to focus on the negative: medical bills, stress, exhaustion. They are unaware of the possible light at the end of the tunnel. It takes a storm to create a rainbow. Childhood CP is definitely a storm. But the rainbow created later can be unbelievable. The following is another video  of childhood  CP hope outside the realm of stereotypical medical intervention: a combination of medicine with alternative functional rehabilitation beyond traditional thought. Valley boy diagnosed with cerebral palsy dreams to walk on his own – YouTube. Believe it reaches far beyond this artic

My Story

              I was diagnosed with cerebral palsy as a baby. My mother was told I was hopeless and should be placed in some sort of “home”. I am very certain those that attempted to condemn me to such a place for my entire time on earth would be surprised. I became a competitive bodybuilder. As mentioned in my previous article: my rise began with a tiny plastic scooter. Not surgery or a pill. A scooter: named Ollie.

My Miracle Ollie

Mother (Shirley Story):

According to my mother, at the time of my diagnosis, extraordinarily little was known about CP. This, in turn, led to them being unable to help me much and many dead ends were reached. My mother cried for an entire week post-diagnosis. Often, mothers simply want to be able to kiss their children: make them better. This was not possible. CP is not curable now. My mother found a doctor who was able to help me and my family (Dr. Bidwell: here in Franklin, VA). This doctor helped me and my family head in in the right direction. I will note that he was my PCP until his retirement, around 1996. My mother was stubborn (luckily). She would not accept the word “no” and was relentless in her pursuit of answers about my situation. She would not allow me to be denied the opportunities afforded other human beings. Often, she would become incensed: she knew simple solutions existed. She would become incredibly frustrated and unsure about why medical professionals were wholly unable. Remember Ollie?! She often broke down in tears; furious at the fact that she tried so damn hard while confused at why, seemingly, others simply did not. Then: I would make some sort of miraculous progress and a new fire and fresh resolve would re-ignite her weary spirit. My mother has always fought for what is mine: she has always believed me every bit as worthy as any human being in existence. Her fighting for me and supporting me has not been remotely easy. She has clearly said that she wouldn’t change a thing. She loves me. As I am: as her son, Steve. Not: her son who has CP. She thanks God for everyone who aided her in being one of if not my greatest supports during childhood.

Father (Henry Story):

My father had a similar experience: he is much more stoic and less talkative but has an enormously kind heart. He recalls being somewhat overwhelmed by the whole experience, as he was somewhat unsure of how it would all play out. He recalls me crawling prior to this ordeal. As I was using Ollie, he took note of my progress and came to believe: “This might just work!” He also says how proud he was of me: with every step I took; this pride swelled within his mind. He has always been proud of me. Both as a baby and as the man I’ve grown to become.

Sister (Darlene Nixon):

              My older sister Darlene said that she did not understand quite what “cerebral palsy” meant. This is not remotely surprising considering she was only a child at the time, herself. ( she is only 5 years my senior). She was furious with my family being told that I would never amount to anything. Like my mother: she would not accept it. She believed I could do it; that I would walk and be someone. She was right: I did become someone. Darlene remembers becoming absolutely incensed upon learning that one of my schoolmates had laughed at me as I walked. She also remembers being thoroughly protective of me and furious as she became aware of people gawking at me while we were out somewhere in public as children. Regarding Ollie: she considered that toy a miracle maker. Then she saw me walk for the first time: she then knew in her heart that I would be alright: that I would be ok. She said that if those doctors  could only see me now… they would bury their heads in the sand.

Sister (Christine Collier):

              Around age four, Christine became aware that something was very wrong. Perhaps a child’s intuition: picking up on subliminal adult conversations. Although too young to understand the ramifications of Cerebral Palsy (and what to expect of having a diagnosed sibling) she clearly knew something was amiss. Some of her earliest memories are of propping me up on a pillow so that I might be able to play with my siblings. She was aware of me needed extra help, but unsure of “why?”. Enter Ollie. Christine somehow knew, upon laying eyes on Ollie, that toy would work miracles. Oftentimes, a child’s innocent intuition is somehow more real than what is so often held in high regard and belief.

Hope For Those with a Cerebral Palsy Diagnosis

            My sister, Darlene, is absolutely correct. If those doctors who determined I was hopeless and should be confined to a “home” could see my life today: they would surely regret giving me and others with CP such a prognosis. I have been exercising at a gym since 2001. I spent 10 years doing basic exercise at the local YMCA. Around 2012: I decided to go all out. I began rigorous physical conditioning to become a competitive bodybuilder. It is now 2022: I am 48 years old. I have 13 competed in 13 bodybuilding shows and come home with a winning trophy for each. Except for one. I decided I had an opportunity to show the world not to judge physical disabilities, So I decided to compete in the “open” category: the category for those who are completely able-bodied. The term “disabled” is synonymous with “broken”, which I am not. I am keen about saying, “ I  MAY HAVE A DISABILITY, BUT I AM NOT DISABLED!” I live alone, drive on my own, have a serious girlfriend, and have quality relationships. I face challenges, yet lead a life typical of others my age. Competing in body building shows after age forty is probably not typical. I am including some pictures that may emphasize hope. This is me, I have Cerebral Palsy. May my story bring others hope and inspiration.

One of my articles. This is from Newsweek: ‘I Am a Body Builder With Cerebral Palsy’ (newsweek.com)