Wednesday, March 25, 2015

CP Celebrity

It's Cerebral Palsy Awareness Day! (I didn't even know we had a day 'til last year...)

I got a Flat Stanley letter in the mail yesterday, it's from a sweet little girl who has Cerebral Palsy and she sent it to me because I'm her awesome cousin who also has Cerebral Palsy. I've never been a famous before, but being admired for having CP is a very sweet thing for me.....

As soon as I was old enough to realize I was different, I was sworn to secrecy. Mom thought if people knew what made me different had a name, they'd judge me or maybe it's that she feared the judgment... I have never quite figured that out.

Regardless Cerebral Palsy was the elephant in the room....

I spent most of kindergarten in casts and in a wheelchair. They were trying to manually turn my pigeon toed feet to a normal position, every few weeks changing the angle of each cast. That lasted almost a year and accomplished nothing. "What's wrong with you?" Kids would say.  I wasn't aloud to tell them.

While most kids took swimming or dance after school, I was in therapy three nights a week. Hoping again to loosen my constantly pulling muscles. The therapists were nice and the playground had this awesome purple dinosaur slide....

My left foot was two sizes smaller than my right and my left leg 2 inches shorter, The only place we could special order my shoes was the VANS factory in Orange County, I was cool before my time.

School was tough. I remember peeing my pants often, once in front of my third grade class, giving a book report. I could never quite keep up in PE either and was always picked last for every team. A lap of the track too me twice as long as it took everyone else and I fell often. I read slower than everyone else because my eyes struggled to stay on the same line... But I wasn't allowed to tell them why...

In fourth grade my mobility was getting far worse and I was falling constantly, so they decided to reconstruct both feet...cutting the muscle in the arch and then removing the curved portion of each heel bone, fastening the bone back together...I can still remember the pain I was in when I woke up from surgery. Mom had me back at school in four days. I spent months in casts and in a wheelchair.

I vividly remember the orthopedic surgeon removing my casts and grabbing the drill and removing the screws...somebody could have at least warned me.

Several more months in walking casts then...

For the first time in my life my feet were the same size and my toes pointed forward without effort. Flat feet were a worthy trade off...

I still was told never to talk about it, "People won't understand, Robin" mom would say.

Mom had stayed in California 5 years after my parents split up, so that I could continue to receive the best medical care available at the time, but once we moved to Canada my CP was almost never mentioned and therapy did not continue.

So yeah, 30 years later, I still have and gravity don't get along, zero depth perception, the balance of a well-intentioned drunk person and the bladder control of a puppy and my muscles often feel like I've run a marathon...but now I can talk about it and its just as much apart of me as my love of the ocean or addiction love of Dr. Pepper.

It has taught me much.

I would never ask a child to hid something the way my mom did. But it is a much different time now. I'm not sure an explanation would have saved me from torment or added  to it. But I have learned that information usually leads to compassion and understanding.

My elementary school years were tough, but I have no bitterness, it made me funny and resilient and kind in away nothing else could have.

Yes I have to do things a little differently, sometimes...but my life is a great one.

Thanks for the Flat Stanley, Claira. We're going on adventure this weekend, just for you. Love, Robin.



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