Thursday, October 10, 2013

More from World CP Day

C. last weekend
There's a wealth of relevant information circulating this week thanks to World CP Day (my October 6 post about that is here)

For instance, I was unaware how under-financed CP research is. A blog post enlightened me:
"...the National Institutes of Health devoted up to four times more funding for research and surveillance of muscular dystrophy, multiple sclerosis and Parkinson's, conditions that affect half as many people as those with CP." 
And while I knew I'm far from a trailblazer, I was surprised  to discover how huge a community there is of blogger-parents of children with disabilities. One that I hadn't heard of, Shasta, who blogs at this site, aptly pointed out that we parents, drowning in the financial and emotional demands of our children, are in no position to campaign for more research. Which would account for the dismal situation.

But some of the testimonies posted to mark this Day highlighted what a marginal minority our children are. It was painful, for instance, to read the "woes" of helping a child with CP do his homework, or watching her fall down and pick herself  up frequently, or worrying about a child who runs away from school.

I just thought: "If only!"

My CP-blog meanderings led to a post that particularly resonated with me. It deals with that frequently asked question "What do you do?" Prima facie, a perfectly benign question, right? Wrong.

Blogger Donna Thomson, a mother of a 23 year old son with severe CP+, explains how hurtful that question can be. I know I dread it. It never fails to throw me into apologetic mode. I rush to explain that I care for C. at home, cite her age and rattle off her list of disabilities. Desperate to convince the asker that while I don't work, I'm no lazy couch potato.

Usually I sense I've failed.

What deepens the frustration is that I am also frequently asked "Why do you keep C. at home?"

The implication is that keeping her at home is irrational, incomprehensible. And certainly no excuse for not working.

Needless to say, like other parents of children with profound disabilities there are no impressive achievements by C to showcase and to prove to the world that I am actually doing a worthwhile job.
Or to prove it to myself.

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