Thursday, February 16, 2012

It's about the parents...

There's no therapist, no doctor that knows more about what to do about my disability than my mother. When I was a child she almost found the perfect mix of exercises, movement, massage study and fun to turn into a daily routine. We went through a number of methods and approaches when I was little, there was nothing we wouldn't try to make me better (or more functional, which essentially was the same goal) and she was able to combine and take from them things she felt would keep me moving, keep me sweating, keep me challenged. She quit her job when I was diagnosed to oversee my development while my dad took extra shift. There was an exercise mat in our living room and a gym stall and grab bars in the hall. Everything thought of so I would exercise, stretch even when I was by myself.

My mom was 27 when she had me, much younger than I am today. It's hard for me to understand what they've been through, what they had to give up. How you raise to the occasion  when you find you have a child with disability,  a more than likely lifetime commitment. Can you imagine the shock, when your child is born prematurely, when you're told it might not make it and when it does, when you think everything will be fine you're told  it's just the beginning?

 And then you learn. You learn what to do to be a normal family despite everything and you learn and you dedicate your time, you sacrifice your career to help your child thrive. I always talk about my parents when I'm asked to give a speech about my struggles with Cerebral Palsy. I am where I am today because they decided to go against the system. And they stayed strong for as long as they did. You didn't see people in wheelchairs attending regular schools, going to museums, galleries, they we're present in the public scene. The communist government preferred to  have them put away. My parents refused to have individually schooled or sent to a special institution. That wasn't easy. Nothing really was wheelchair accessible and for years and years they would carry me up the stairs to class every day. At first unofficially as an agreement with the teachers to avoid problems. But I grew bigger and heavier and they got weaker and weaker. Their backs suffered, their health declined, but there was one goal- for me to get an education. A lot of other parents with CP kids followed suit by pulling their kids out of special schools. Many didn't last in that decision. They got weaker, older  and discouraged as the kids loose enthusiasm for both learning and exercising. Not a day goes by without my thinking how I'm a product of favorable circumstances. How easily it could've gone the other way. I don't think it makes me unique, that I am who I am. It's my parents' strength and determination. There's no reason I should be special. For that reason if I can inspire kids and parents to reach further and try harder, I will.

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