Friday, October 4, 2013

C freakin' P

For World Cerebral Palsy Awareness Day I figured I would add to the interwebs' collective store of knowledge about CP but it turned out I learned far more reading other people's posts. How is it possible that I didn't know that no one does CP research? Go figure.

We are lucky, because CP doesn't really hold Hannah back that much. She is in a regular class, doesn't have identifiable barriers to learning that the school can assist with (they adapt when she uses scissors, etc., as needed), and as far as I know she has no cognitive impact (she does think farts are super funny but somehow I think that has nothing to do with CP). She is clever and smart and beautiful and sometimes quite winsome and sweet, and sometimes hisses at me like a feral cat (probably more related to being five, having her father commit suicide and about 90 days later mom went off to do forty five days in rehab, again not so much CP related behavior). Mostly she navigates her world incognito, and maybe is perceived as young in her peer group, which is actually true.  However, despite her success, when we were at a park playground near our home and ran into a family with a child in her kindergarten class who is very active and able bodied, that child asked me why Hannah needed help to navigate a tricky monkey bar feature and proceeded to show far more interest in Hannah's big sister.  Every now and then she drools a little when she concentrates. We still end up at Shriners all the time for OT and PT, use stretching braces at night and continue to get conflicting advice about the benefits of using AFOs (proof there oughtta be more research right there, since the conflict comes from two parts of the same hospital so what is a mother to do??)  I don't, at this time, teach Hannah that she has special needs and the word disabled is never used here. I think she would tell you her Righty doesn't work all the time, or that it gets tired, I don't even know that she knows she has CP although she might be able to say she had a stroke, I dunno, I'd have to ask her.  It is not ruining our lives but it is a drag.

I wish I could be a little more grateful, as some moms sound when they tell how they love their child and CP is part of who that child is. I guess I still don't have that level of acceptance. If I could wave a magic wand and take CP away from Hannah, I would do it quick like a bunny and never look back, because I hate that she can still be a doctor but perhaps not a surgeon who needs two strong steady hands to operate, or when and if she has kids her not quite as able hand won't be as handy to hold her baby or a million other things that will be harder for her than they would be without CP.  She is indeed the child I wanted and she doesn't disappoint me but I do wish I could smooth her path down to the regular rocky path of life from birth to adulthood.  I do wish she didn't have to spend time at a clinic where the Cozy Coupe cars weren't specially built with IV stands and stickers that say "cancer fears me" but yet I am grateful to have such a facility available to my family so she gets the necessary help to be able to do the most she is capable to do.

1 comment:

  1. Hi! Found you through the linkup...and so glad I did. My son has mild CP too (also the right side) and I have to agree with you. I'm grateful it's not worse (we call him best-case-scenario) but I certainly would have opted out of the cp if given a choice. When he was younger, he once told me to "cut righty off because it's useless anyway." He's over that now and he actually uses it quite well as a support to his dominant left side, but still...

    Glad to have stumbled by your blog. I'll be back!