Incantation

Tonight I want to be a witch, a shaman, a voodoo priestess or God. I have been writing incantations on my mind's tired, blank pages...Waters churn. Moon beam. Sun burn. Earth rise. Time turn....I want to howl in a clearing and sacrifice bureaucrats. I want to speak in tongues and rail at planets, rattle bones and spit blood. I want tsunamis, earthquakes, infernos and eclipses. I want an almighty crescendo so awesome that the word is never misused again and in its release...my son will sit up from his bed, walk to the bathroom and brush his own teeth.

I am on the moon.

Can you imagine that feeling of isolation?
Your only human contact is the sound of your own breath and the voice in your ear, belonging to someone who has no idea how this isolation feels and there's not even a 1 in 9 billion chance that they ever will.

I am not on the moon.

But I can't find one fucking chat site about living with and loving a child with dystonic cerebral palsy.

Incomplete post of vital importance.

The following is the post that I never finished and never posted (until now). It's a mess, but I can't bring myself to edit or complete.  I wrote it 2 months ago as I was emerging from one of my darker, dark patches. I'm posting it now, in all its incomplete glory, because of its profound significance. I'll talk about that when I don't have to rush to the pharmacy.

I have been in the bell jar. Walking the black dog. Seduced by the dark side. Imagining another mouth under my chin. After last week's therapy session, I started limping my way back to the light, but then came the crawling, swarming, omnipresent blackness...

Last night, as usual, I had things that had to be achieved - school lunches made, dishwasher emptied, dinner planned, 10 minutes spent swapping positive comments with my husband, two week dry-spell broken, at least 6 of 24 fondant puppy dog cupcake toppers made to insure deadline is met. But instead of achieving my daily goal of Sufficient-Woman!, I had to eradicate a mind-fuck of ants from my baking drawer and every inch around it.

Two weeks ago, when the problem first crawled in, I allowed my landlord to convince me that an exterminator was unnecessary and that his bait would suffice, but the result was me chucking out hundreds of dollars worth of accumulated cake decorating shit, not to mention a precious night of accomplishments. As I charged through the dining room,  where my husband was working, brandishing ant-shrouds, the rabid,wild thing burning rubber in my brain, I venomously spat; "That's the last time I listen to a fucking man".

My husband responded reasonably, which allowed my brain to take its foot off the accelerator. It dipped its toe on the dark side and found a few bad boyfriends (nothing significant there) and then the male obstetrician who gave my son his disability. I felt that familiar feeling of being punched in the gut. I was folded double in PTSD pain - which is real and not real in equal parts. I heaved with tears. Then I heard the gentle tones of another voice in my head, not the rabid wild thing, but the wandering sage. She told me to stop. She gently talked my heart rate down and then she talked me through some logic.

Yes, it was a man who got it wrong with the ants.
Yes, it was a man who changed the course of you and your son's life.
But it was young girls who fucked you up all of those years ago, robbing you of your ability to deal constructively with anything as big as death or as small as ants.
And who were your only ally's back then?
The boys.
Then she gave me the same challenge that she's been whispering in my ear for years:
If you fix the biggest crack first, the smaller pieces will know where they fit.

Whinge

  I was just interviewed as part of a baby psychologist's thesis on "self-care of parents raising a disabled child". It is her objective to specialise in the psychological well being of "disabled families" - this is a phrase I use but there's got to be a better term???  She divulged that there is no specialist care, in general psychology, of people with this particular brand of "fucked", at least none that she has discovered thus far. And if she, who is researching in this area, can't find it, how would a newly born disabled family fare whilst high on denial or so low they can't shit?
  I'm inspired to write a handbook to be available, straight out of the operating theatre, to all parents who've just found out that their new baby is destined for disability. "What to expect when the unexpected happens"? Something to guide people like me through the unguideable. Step one: Find a psychologist that specialises in disabled families, but if indeed you discover that they don't exist, welcome to the world of disability where nothing was built with you in mind.
 This will be a fun project to start while I'm sitting beside the local pool watching my husband climb 50 stairs, 25 times to the top of the hydroslide - my son's favourite thing in his tiny, inaccessible world.

Lemonade

I have just returned from L's Individualised Education Program meeting.  These occur each school term and involve the people responsible for L's education and development: physiotherapist, occupational therapist, speech therapist, child psychologist, individualised needs co-ordinator, school principal, teacher aide, Mummy, Daddy and 18 cupcakes made by L and I over the weekend.

For one hour, four times per year, I sit and talk about my son with a group of people who are paid to care, who lose crucial funding if they don't and give us every reason to believe that they actually, sincerely do. We leave feeling that we're not alone in our love and admiration for L or our passion for his achievement and then we get to watch as changes are made and results unfold.

This is a privilege that parents of typically developing children generally don't get to enjoy.  I don't recommend hobbling your child for the privilege - I wish this good feeling wasn't so hard earned or even necessary, but, as we say down here; I'm shining a turd.
 
It's disabled parking in December at St Luke's Shopping Centre, the bitter-sweet redundancy of child-proofing, the fail-proof excuse when you don't want to attend and the government paying you to be an at-home parent. It's lemonade from lemons.

The Two-Headed Monster

Ever since L was 6 weeks old, there's been a two-headed monster in his room at night.
It followed him when we moved houses and cities. It finds him in hospitals and other temporary homes.

He noticed it long before I did. All I noticed were his eyes fixating, then fascinating, then smiling.
Last year, on a motel wall, I saw it. It's always been there behind me, in front of L, finally captured by me thanks to a well-placed mirror. Now I look for it every night, or I look for L watching it. I watch for his relationship changing with it.

I never see fear in L's eyes, even though the appearance of it could be deemed "scary". Its body is blob-like. One head is bigger than the other and most nights, they are so close together that the two heads could be mistaken for one monstrous, malformed melon. It has no discernible arms, although, some nights I have seen what could be small fingers protruding like a swallowed child escaping.

On other nights, you can make out legs. If I dress formally, in a skirt say, it'll only show me two, but on casual pants nights, we both get to see all four; two long, framing a frighteningly skinny pair.  L loves pants nights because, if the light is just right, he can see the monster wiggling its toes.

I've noticed it mimics our movement; swaying along to the song I sing:
"See the pyramids along the Nile.
Watch the sunrise on a tropic isle.
Just remember darling all the while...
You belong to me."

I've grown to love this monster as L has grown nonchalant. He's 6 now, at school all day and far too busy for monster-watching at night when his sleep is so crucial. Very soon, there will come a night when he'll finally be too tall and too heavy to see the monster at all and then it'll be gone forever. I will see it replaced by other monsters with different heads and mechanical arms, but I won't even bother mentioning them to L. I know I will be too heart-broken.

Take a seat...

  2 days ago, I published my first post in 4 years. I deleted it the next day. It was inauthentic, poorly written crap. My heart and voice weren't in it.  I can get away with the deletion because no one is reading, but I can't get away with it existing, because I'm reading. Of course, it means this blog will be lacking some explanation for my absence, but me, myself and I know where we've been and I'm just not ready to recap.

  So, today, after my second emotionally explosive morning in a row, I'm fairly sure I've identified the object of my ire - my son's new piece of equipment.

 This feat of ingenuity is a "lazy boy" for the disabled. It can be tilted, in various ways, to accommodate prone laziness, supine laziness, side-lying laziness and even upright semi-laziness. It is "the best" available, though I suspect it's "the best available" in my country or at the right price.

In most homes, this is nothing more than a fucking ugly chair. In my home, this is post-traumatic stress disorder incarnate.

1) It screams "I'm disabled!".
2) It screams "I'm disabled and I have to put up with whatever shit they throw at me!".
3) It is the same colour and of similar appearance to a NICU feeding chair, therefore it screams "Death!".
No one wants screaming, lethal arseholes in their home!

On putting "L" in this chair, he forms a solid plank of wood until he manages to angle himself out of it. Not quite the lazy boy the designers had in mind. So what the fuck did they have in mind!?
When will disability furniture be designed for people with disabilities instead of disabilities?
 Disabilities don't give a fuck about aesthetics or mental health, but then, since the birth of my son, I'm yet to see a disability sitting in a chair.