When it all changed

8 years ago today my world changed.

Up until then I had a gut feeling that Brody wasn’t developing typically but no one agreed with me.

For 21 months I was alone in my thoughts and felt like I was losing my mind worrying.

Other kids his age walked around with ease, climbed things, ate without difficulty, clapped and pointed. They didn’t vomit all the time. Some even spoke sentences, let alone words.

It felt like the differences between Brody and his peers were constantly in my face – particularly at baby and toddler classes.

And then that horrible red book, filled with never reached milestones.

How could no one see?

Was I overthinking? (As usual).

Then on the 5th October 2013, we put Brody down for a nap and the axis shifted. His arm started twitching for a few minutes. Bobbing up and down. We thought perhaps it was a trapped nerve.

He was fine all day until dinner time when our burglar alarm went off and his arm started to do it again. Like it had a mind if it’s own.

From that point I remember everything so vividly.

The panic.

The alarm ringing (house and brain).

We quickly decided we needed to go to A&E and in a hurry I blew out a candle, blowing its wax all up the wall.

My dad met us rushing out the door just as he was about to pop in (we’d just moved in).

Brody was fine by the time we got to the hospital and after a quick check we were sent home with the ward number.

And then just as we were nearly home, his arm started doing it again. We drove back and I lifted him out of his car seat, which was conflicting for my head because, you know – it’s not what you do.

I remember his neck was stiff and he couldn’t relax into me. I said “it feels like he’s having a seizure”. My other half disagreed – but he couldn’t see or feel what I could.

Again it stopped by the time we arrived but they decided to keep us on a ward. “Pull the alarm if anything happens” they said. And we sat for a few hours, not knowing what the fuck was going on. First time parents. Full of nerves.

After a while, Brody had a huge bout of laughter and when we turned to look at him he started convulsing. My brain went blank and I just shouted for help.

From there we stood by the end of his bed feeling completely helpless. A feeling that to this day is sometimes hard to shift when times are trickier.

It happened one more time that night and then Brody didn’t have another seizure for nearly a year.

I don’t think I’ve slept properly since.

The 5th October 2013 cemented for me that my gut was right. I should be worried.

I remember the next day a paediatrician – that we later came to know well – was doing a ward round and asked us questions about Brody’s development. I asked him if it was normal and he said no.

That was a first. And it winded me.

I can still feel the fear in my stomach. The complete overwhelm that perhaps the life I envisaged for my baby when I first saw two pink lines on a stick wasn’t to be.

There’s no way to describe that realisation. It’s just fucking hard.

But I can say that after that – although we faced new challenges (never because of Brody but because of the world we live in) – a weight was slowly lifted.

You see, at the start of this journey you question yourself a lot. You worry a lot. And you’re in a shitty limbo.

And whilst Brody having a rare undiagnosed genetic syndrome is still a life in somewhat limbo, it’s not the same as those first few years just not knowing anything.

Not knowing is hard.

When you do know, you can accept. And acceptance is vital.

Because with acceptance you can adapt. With acceptance you can focus on what’s important, which to be honest is really quite simple – living, appreciating the little things and being happy. Something our children teach us tenfold.

You know, there is so much truth in the Van Gogh quote…

“Normality is a paved road. It’s comfortable to walk on but no flowers grow on it”.

Vincent Van gogh

I may still be a worrier – but I wish I could go back in time and tell myself that.


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