The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

Watching And Waiting

You might see me with Hugh, chat to us, see me walking to the shops and think everything is normal, fine, relaxed. Have you ever seen me hold his hand while I talk to you? This is not just to give him comfort that I'm there (he's severely visually impaired) but also so that I can spot instantly if he has a seizure even if I'm not looking directly at him. I'm constantly watching Hugh - his fingertips, the end of his nose, the way his toes wriggle or his eyes move. Fingertips, nose and earlobes are the first to turn blue if he stops breathing. Hugh might be happily facing away from me whilst I chat, but I'll be glancing at his fingers or the way his legs are moving without you even knowing. 

At one point all we did was wait for the next seizure. They dominated our lives entirely. I couldn't leave Hugh alone, not for a second, just in case. I couldn't pop into the kitchen, or upstairs to the bathroom without taking him with me. I'd been caught out before- he'd turned blue in my absence, so I didn't leave his side. I couldn't toilet train Sean- it would mean leaving Hugh. And when things got really bad, we were confined to the house- the very realistic fear of resuscitating him in public, whilst trying to look after a willfull 2 year old Sean was just too much for me to manage. With the help of friends and neighbours Sean was taken to nursery a few times a week and Hugh and I lived as virtual prisoners. During that time I spent my days and nights waiting for the next big seizure. Sometimes it'd be hours later, sometimes days. If we got past 7 days I became anxious, knowing the next one was sure to hit soon. The worry was always- would he recover from this one, or would this be the one that takes him? Perversely there was almost a sense of relief when the seizure had happened- at least it was over and he was ok.

Living like that was exhausting. Being constantly on high alert, never sleeping just dosing. I slept holding Hugh's hand either through the bars of his cot or with him in the bed next to us so I'd know if he stopped breathing. We had no monitors then, no oxygen, no bag and mask. Just Stephen and I giving mouth to mouth to our baby at all hours of the day and night. 

The SATs monitor gave us some relief knowing that if we were too exhausted for our seizure-sixth-sense to kick in it would alarm when his oxygen levels plummeted. Then we were provided with a bag and mask and oxygen to resuscitate him, which felt more calm and controlled than giving mouth to mouth. 

As the gap between the seizures grew, thanks to the ketogenic diet, the danger seemed less imminent. As month after month passed without Hugh turning blue or needing mouth-to-mouth the adrenaline eased and whilst I wasn't quite poised at the starting line, ready to dash at the gunshot I was still hovering, waiting, watching. 
I always feel like someone is watching me!

Hugh continues to have seizures about 3-4 times a week, mostly at night. They tend to just involve some teeth grinding and odd movements. He continues to breathe throughout, they don't upset him so we just let them pass naturally. We had a huge period of 9 months where he hadn't stopped breathing but lately they've been creeping back in. Illness is always a worry, it's a well known trigger for seizures and this has certainly proved to be true for Hugh. It doesn't have to be a significant illness either, simple coughs and colds can send Hugh's brain activity into overdrive and before we know it he's being blue-lighted to the nearest hospital. He's been very ill and not had bad seizures though and he's been fine and had horrendous ones. He's a little conundrum. The unpredictability of it is unsettling. It could literally happen at any time, with no warning.

So we watch and we wait.

The events of the last few months have thrown me a bit. I'd kind of hoped he'd grown out of the scary type of seizure, but if anything they have returned with a vengeance. Instead of being controlled with rescue medication in the house, he's needed hospital admissions and IV drugs to bring him round. The past still haunts me and I dread the day we ever return to living like that. I hope and pray it won't come to that though. We're back at the stage where our reactions to the SATs monitor alarm are lightening bolt, whereas previously I'd amble in fairly confident it was set off by a wriggly toe. I'm constantly checking him in the mirror while driving and keeping him close at all times. It's been just over a week since he last stopped breathing so it'll be a while before I'll be ready to relax a bit. In the meantime Hugh continues to be his happy cheeky smiley little self, oblivious to the extra worry he causes. 

Comments