DRAGON-EXES - THE MOST HIDEOUS SORT

Hey, I can't bitch about my kid's cp all the time.  I've got lots of other things to bitch about, way too many dragons, to restrict this blog to just one.  I think the worst, most hideous, irritating, irrational and obnoxious dragon I am forced to deal with is my ex.  Yech, I just threw up a little in my mouth thinking of her!  If you have one and you think yours is bad, I can guarantee that in a side by side comparison, mine is more obnoxious hands down.  She is a gaping asshole.  A psychotic malevolent mean-spirited bully. And those, I assure you, are her good qualities.  


So now I've been told that my kid needs surgery... and guess who that means I'm going to have to deal with?! Yep, you guessed it. The duchess of douche as Valerie lovingly refers to her. Last time my daughter had surgery I thought I was going to kill this broad. If she pushed the wheelchair, she muttered loudly under her breath that she was nothing but the sherpa. If I pushed the wheelchair, she muttered loudly under her breath that I was excluding her. There is just no winning with her. At least at that time she didn't have custody - because she didn't want custody... because at most she wanted to be a "distant aunt" (her words) because she wanted to go drinking, partying and dating (she clearly entertained fantasies that someone would be interested in dating her) and she didn't want a kid cramping her style(sic). See, I told you she was hideous! I bet she even makes you throw up a little in your mouth.  3 years after we broke up she only wanted custody because I started dating. It was her way of inflicting pain on me. Anyway, for the past few years she's had half custody, something that still sticks in my craw and irritates me every time I think about it. Thankfully, because of the schedule the lawyers devised, I don't have to have any contact with her, as all pick ups and drop offs happen at school.  But because she now has half custody, she feels entitled to make decisions and shoot her mouth off about my child's care and this upcoming surgery. As if I want this malicious psychopath to be making decisions that require more than a scintilla of empathy about the medical experience, pain and feelings of a human being. Really, humans are a whole other species here. The surgery is a month and a half away and we're already beginning to duke it out about who gets how much time and how things should be done. She's emailing, texting and calling me several times daily with questions, comments and whatever drivel pops into her head... clearly enjoying all this access to me. Yippee! Shoot me now.

DRAGON LORE

I don't need to reinvent the wheel. Believe me, I've got plenty to do.  I think this woman says it best, so I'm simply cutting and pasting.  Enjoy

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Emily Perl Kingsley  1987

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.

why now

why not.  as pema chodron would say, "start where you are".  so that's what I'm doing.  why this title? well, from one of my favorite books by a favorite author - "here be dragons" by sharon kay penman.  and as she explains, the phrase has its roots in the common practice of medieval cartographers; when a mapmaker had drawn upon all of his or her geographical knowledge, they would neatly letter across the void beyond: here be dragons.  "here be dragons" denotes uncharted territory... and so is life... uncharted territory.  this is mine...