Monday, February 6, 2012

I'm on Fear Factor...

I wondered about the consequences of bringing it back. Now I think I understand.

No, I didn’t have to drink anything ooky that came from the nether regions of a donkey. However, what has gone on this week has filled me with the same foreboding that I imagine the contestants on that show feel.

Last week, we had the ‘mental collapse’ brought on by blood tests. This week, it was a whole new box and dice (box of dice?)

On Sunday morning at 6:14am, Billy was sleeping beside me (have I ever talked about the co-sleeping, bedtime tango?). At 6:15am, I heard a really odd grunting sound. I thought it might be the dog dreaming, but it wasn’t.

It was Billy. His whole body was tense. He was jerking all over and the grunts matched the jerks in tempo and intensity. His eyes were fixed to some spot somewhere between himself and the North Pole.

He looked exactly like one of those cartoons where someone has been plugged into an electrical socket. But a little more gentle and without the spiky lines around him for emphasis.

I called out for Billy’s Dad to come in from Billy’s room, and through the jerks, Billy was able to say, ‘I… don’t… think… he… can… hear… you…’

I fumbled for my phone, to try and video what was going on, but of course, it was one of those iPhone moments when the camera takes forever to open. By the time it opened, Billy was still.

He tried to move, but he couldn’t. He tried to talk but the words came out all jumbled. He slumped back onto his pillow and fell into a deep sleep.

He barely moved for the next 3 hours.

A seizure.

So that’s what they look like.

The rest of Sunday was spent in the Emergency Room, among kids with mysterious joint infections, inflamed appendixes (appendices?) and heavy dependence on vomit bags.

Billy was chirpy as a lorikeet, if a little tired. They checked his neuro signs, they checked his blood levels and sent us home. We were given instructions on how to book an EEG and how to handle future seizures.

We have officially entered ‘the early days’, from what we understand. Every doctor, nurse and receptionist is clearly used to dealing with the anxieties of parents with seizing kids. They all use the phrase – ‘The Early Days’. It sounds vaguely colonial, or primary coloured, almost charming.

We watch, we wonder and we wait. Actually, we wait quite a bit. For EEGs, for appointments with neurologists, for more seizures or no more seizures or something that resembles a pattern that may form a part of our future.

And that’s why I feel a bit like a contestant on Fear Factor.

It’s not so much that I am actually worried about what might actually happen, though I clearly am, but that I am almost certain there’s something even more disgustingly confronting around the corner.

I did not expect this one. I did not want this one. I am one step further away from the chance to flick my stylishly cut hair around and bitch about how Billy doesn’t get enough game time in soccer. And I’m not thrilled about it.

I know it could be worse. I know he is fine right now. I know, I know… but really. Enough.

I feel like the producers of my life have decided I just might be the contestant that can take the cockroaches on the face, or the poo sandwich.

If anyone has their number, could you please tell them I actually can’t? I’m not up for it.  I’m quite happy to be the one who flies under the radar and ends up semi-sweatily hanging on the coattails of some real competitor.

I am afraid.

Of pretty much everything.

I’m afraid that my child who struggled so with vaccines in the first year of his life is carrying a real burden. I’m afraid that my child who got hit with a gigantic auto-immune hammer in his 4th year on earth is struggling more than we know. I’m afraid that the odd drug reactions and the twitching after living next to a pool full of Roundup are signs that worse is to come.

I am also afraid of kittens and puppies and lollipops. Why not? Stranger things have happened. My perfectly beautiful child is being assaulted by the world around him and no-one outside of the special needs community seems even vaguely concerned about it.

‘No’, they say, ‘There’s no evidence of that drug reaction’. Really…? Here’s evidence. His name is Billy.

‘We’ve never seen a child have seizures after coming in contact with that substance’, they say. Really…? Here’s one. His name is Billy.

‘We don’t believe there’s a link between those vaccines and any neurological changes’, they insist. Really…? Because we don’t want to believe it, but we live with it. Actually, he does. His name is Billy.

I don’t like being afraid. I do not need any more practice at being afraid. I am naturally quite good at it.

I’m sure we can suck up the idea of seizures and move forward. We did it with autism. We did it with Transverse Myelitis. But I’m also definitely sure that we don’t want to.

Just like I have no interest in eating equine testicles.

Enough already. Roll credits and move on to an episode of Parenthood. Those usually end well, right?


Valerie's increasingly random ramblings can be found at Jump on the Rollercoaster.


  1. Hey Valerie,
    We personally know how scary it is to have that first seizure. One of our students who never had a seizure had one while diving into the swimming pool. It's one of those moment when you just feel helpless and sometimes hopeless. Keep your head up and best of luck.

  2. Heart is breaking for you darling Valerie and sending u so many many many many hugs

  3. Our son, 11yrs, had his first seizure Friday. It's definitely an "out of my control" feeling. He's had some precursor signs but now, now we know. I do blog, but about everything. I've not yet put this ne to words. Soon, but not yet. The EEG was today, the neurologist, next month. After readi g this, I will start my draft. Thanks for sharing. DS#5 was diagnosed with Aspergers Symdrome, finally, 2 years ago. Some of that struggle, I have blog posts about. Now, the additional saga begins...