Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.

My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous…

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.