Fears

The seizures have started. Just as the doctors told us they would. Stupid, I know, but the more time passed, the more I’d let myself hope that they were wrong. Since the first few frantic days of his life, we’d slipped into a nice gentle routine. We’d had only gradual, slow-burn issues to deal with: low weight gain, muscle tone, reflux, respiratory infections. No emergencies.

The fits are not hugely dramatic. They only last a few seconds. There’s no thrashing around on the floor, no breathing difficulties, no loss of consciousness. But they are sudden, unannounced, unpreventable.

I almost wish he weren’t conscious through them. It’s the fear in his eyes and in his new, angry cry that is so awful. I feel powerless; all I can do is hold him. I can’t make this better.

So we caught the train into town and traipsed across The Meadows in the wet snow, hunched over to try to keep Benjamin, in his carrier, dry. The Sick Kids is the only place full of children that I can look around and feel normal. The people here are kind, understanding, non-judgemental. Mostly they have too many of their own cares to worry about commenting on other people’s babies.

It could be just a reflex, the consultant said. Without a video, he can’t be sure it’s a seizure. But I’m sure. I’ve seen his eyes and heard his scream and my instinct tells me this is for real. It all happens so quickly, we said, there’s no time to take a video. That’s good, he tells us. For a seizure to do any damage to the brain it has to last minutes rather than seconds…

…In the next breath he asks us to start looking out for any regression in Benjamin’s abilities. That’s one of my greatest fears, that we might lose the abilities that Benjy has worked so hard for. That we might lose his beautiful smile. That this is the thin end of the wedge: that the seizures will become longer and more frequent; that he will be medicated and hospitalised; subjected to tests and more tests; that we will lose our beautiful boy.

And fear of what this might do to us? Until now, we’ve managed to carry on some semblance of normalcy. Will we now truly become a “special needs family”? People staring at us in the supermarket, children bullying Jackie at school. An endless round of therapists and social workers, benefits and campaigns.

And, if the doctors were right about this, were they were right in their other predictions? He won’t walk, he won’t talk, he will end up feeding through a tube until the end of his short little life. Who was I kidding he’d be some kind of “miracle baby”? Until now, none of this seemed real. Does the beginning of this fear mark the start of the end of hope?

 

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4 thoughts on “Fears

  1. That’s horrible for you all and such a blow when things seemed to be going so well. You seem to handle everything that happens so capably and thoughtfully. Benjy and Jackie have a lot to deal with but they are very lucky to have you and Ric as their parents.

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  2. I found your blog through Scope and am really enjoying your writing. I can empathise with you so much. The bottom dropped out of my world when I realised Ted was having seizures. I was waiting for the day but it still came as a huge blow. Six months. So tiny. So vulnerable. So many other problems to deal with. What did this mean for the rest of his life? He’s two now and we have been lucky. They were well controlled and seem to have subsided (for now!). But whether it’s a daily battle or a fleeting problem, it soon becomes your new normal. That’s not to trivialise it. It is horrible and scary and I’m so sorry you are going through this. Has he started medication yet? Is it helping?

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    • Hi Treatmentforted, thanks for following, reading, and for taking the time to comment. One of the best things about blogging is finding people who understand. So far, Benjamin’s seizures remain limited to seven over a 48-hour period, a couple of weeks ago now. I don’t know what that means – will that be it? Will we get a cluster every so often? Will they get more frequent? So, no treatment yet. We have an EEG tomorrow so we’ll see what that throws up I guess. Thanks again.

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