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.

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.