Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

Looking for Patterns

When Hugh was little we tried to work out why his seizures were happening, what was causing them. Sometimes we attributed them to illness- an underlying chest infection, brewing chicken pox, sickness and diarrhoea. Other times it seemed to be pain related- teething seemed to bring them on. But often, and increasingly so as he got older, there was no obvious trigger, nothing we could pinpoint that was the cause. They just seemed to happen. So instead we looked for patterns, attempting to find order, to give ourselves a sense of control over something which we really had no control over at all.

Recently our pattern appeared to be about every three months Hugh would have a big-not-breathing seizure. He'd invariably be hospitalised and more often than not require IV drugs to stop the pattern. We'd have 3 bad days- he'd need resuscitating anywhere between 6 and 20 times over that 3 day period. He'd be out of sorts for a couple of days, extra sleepy or with lots of other types of seizures- ones where he was at least breathing but were still really horrible to watch. Sometimes the gap between his not breathing episodes would be longer than three months- we'd be delighted of course, but I'd be looking out for them from three months on, half waiting for them to happen. 

There was some comfort in that partial predictability. It wasn't clockwork, far from it, but I sort of accepted that every three months or so we'd hit a bad patch. Maybe comfort isn't quite the right word, but after a hospital admission, once the horrors had dissipated, I'd feel like we'd be in a 'safe' period. The E monster had been, we'd defeated him thankfully, he'd be back of course, but for now we could live again without his shadow looming over us. 

Lately though, that's gone. There is no pattern to cling to and therefore no 'safer' period. There's no rhyme or reason to them at all. In the last six months, the longest gap between big seizures has been 8 weeks, the shortest 10 days. They've happened in the morning, mid afternoon and in the dead of night. Sometimes he's awake, sometimes he's asleep. There's even been completely isolated incidents which haven't progressed into 3 day affairs- something that hasn't happened for years. Sometimes they've even stopped by themselves- he's still needed resuscitating but they've stopped before the rescue medication was given- he's not done that since he was about 1! 

Hugh had a big seizure this morning. He wasn't breathing for about 4 minutes. When the midazolam wore off and he woke up he seemed fine. 18 hours later and there's been no more. Under the old rules I know he would be in hospital by now or we'd be heading there later tonight. The hospital bag is packed and ready for that scenario, just in case. But he's been really, really well today- happy, smiling, no sign at all that anything has happened and going by recent incidents, this could be a completely isolated event. In which case, there's actually no reason why he can't go back to school tomorrow. 

So I've got his hospital bag ready and his school uniform out. 

And I genuinely have no idea which way it will go.