THE "RELATIVE" DRAGON - first post

I wasn't sure what I could possibly blog about that would be of any interest to anyone else (half the time the stuff rattling around in my head isn't even interesting to me).  That of course isn't to say I don't have opinions about things... I have those aplenty.  I just didn't consider my life any more or less interesting than anyone else's.   I barely have time to live my life, never mind write about it.  How do people have time to live their lives and read about other people's lives, especially people they have never met?!  And quite frankly, who the hell cares?!  Through conversations with friends though, I began to understand blogging a little better.  It isn't that anyone's life is more or less interesting.  It's about finding one another through commonalities.  My life is filled with as many dragons as everybody else.  I chose the dragon theme because of the unchartedness of life.  Life throws these dragons in your path and you've got to figure out a way of dealing with them - getting away from them, entrancing them, riding them or slaying them.  Thus far in my 45 years, the biggest dragon I have encountered in my life is my daughter's cerebral palsy.

A new friend and I were talking about "raising different children" (hers has diabetes and mine cerebral palsy) and she said, "oh there must be lots of blogs out there on C.P. just as there are about diabetes! they're so helpful!"  Apparently, in addition to the many blogs, the parent organization for children with diabetes does an amazing job - they send out packages to newly diagnosed families with teddy bears with patches where kids may have to have shots, brochures and informational pamphlets and links to helpful information.  In short, people with diabetes are not alone.  Quite unlike my experience (and every single parent of a child with cerebral palsy I have spoken to in the last 9 years) with United Cerebral Palsy.  When my daughter was diagnosed at 20 months old I called UCP.  I was put on hold twice even though I was sobbing loudly. I choked out the words through snotslurping snuffles, "hi, my name is hali and my daughter has cerebral palsy".  And the monotone response, "Yeah, sure, hold please."  There was no one available to talk to me that day so she took my name, phone number and pertinent information - without so much as acknowledging the fact that I was in a puddle at the other end of the line - and told me that someone would get back to me soon.  6 months later when I called UCP to ask a question (back in the day when I was naive enough to think I could get anything from them, even the answer to a simple question), the same woman answered the phone and recognized my name (not because she cared but because my name is so unusual) and said, "oh gee, did anyone ever get in touch with you?"  Not that she apologized when I said no.  

So anyway, Sarah and I proceeded to pore over the internet, finding a whopping 2 blogs about children with cerebral palsy and neither of them reflected mine or my daughter's experience.  This of course made Sarah sure that I should begin to blog.  Sure, why not?  I'd had her alternately in stitches and in tears with my descriptions of adventures with c.p.  Why not share those stories with others who may have similar experiences? Or at least with people who either need a good laugh or a good cry.

The thing is that I have been hesitant to write about my real feelings (even though I am quite verbose about them in other ways).  Because, well... what if my daughter should ever happen across this blog?  How would she read my words, words so carefully hidden from her?  So, I want to begin with a disclaimer:

My daughter has cerebral palsy.  I love my daughter more than I ever thought it was humanly possible to love.  She is unquestionably one of the absolute best things that has ever come into my life and I think she is one of the most amazing people I have ever encountered.  My feelings about her c.p. are confusing, even to me.  I loathe her disability.  And yet, her disability has helped to form the most brave, funny, thoughtful, spiritual, passionate, willful, determined, charismatic, compassionate (I could go on and on) person I have ever met.  So how can I loathe it?  I loathe the fact that she moves at what my friend Valerie refers to as a "glacial pace", slower than hair and nails grow, snails slither circles around her.  Yet in that glacial pace she expends more energy than it would take most people to move a small mountain.  I am sad for her that she will never hop, skip, jump, run through a field with wind blowing through her hair, dash to the end of a diving board, leaping with all her might, hitting it with the force of her weight so that she can fly through the air for that exhilarating moment while her belly does a flip flop just in those few seconds before she plunges into icy cool water.  I watch her awkwardly lunge about a playground, so out of sync with the other children who are so effortlessly and gracefully running, laughing, climbing, playing, and my heart breaks.  And I loathe her disability.

Let me be clear, my daughter has MILD cerebral palsy.  And let me also be clear that "mild" is a relative term.  I would not even consider sharing these words, these feelings, with parents of children who are in wheelchairs, who cannot move at all of their own volition.  They would laugh at me in the ways I laugh at the parents of able-bodied children who tell me that all 4th graders are slow in the morning.  They would say to me what I say to those other parents, "let me know when you have a clue... talk to me after you've walked a mile (or from the front porch to the car) in my shoes."  And yet, the downward comparison doesn't make me feel any better.  Her life, and therefore mine, are so exponentially different than any able-bodied person that they can barely be compared.  Even though she is considered "mildly" handicapped, we still struggle day by day, minute by minute and every accomplishment is gold medal worthy.