They say it's not over until the fat lady sings and my post about Joey's epilepsy on Saturday was horribly premature. It was a dress rehearsal for the shit storm that greeted us early on Sunday morning.
When Joey is away from his residential college he wears a little sensor round his ankle at night which measures his heart rate (his BPM) and this is linked to an information screen and an alarm. On Sunday morning at ten to seven the thing started to bleep and I jumped out of bed and rushed upstairs. The poor lad had pissed himself and was trying to take off his pyjamas, but the seizures were kicking in and he was all over the place. I had managed to get his top off and his pyjamas trousers had fallen round his ankles, when the full on status epilepticus kicked in. Still in my boxers and teeshirt I struggled desperately to shift him back onto his bed but failed miserably. I glanced over his shoulder at the screen and his BPM was at 140 something (about twice as fast as it should be) and in all this mayhem I got an image of the dead Christ being taken down from the cross: pure naked agony, with me as some kind of hopeless cross, his pyjama trousers as a slipped loin cloth. Once a Catholic, I suppose, but he was certainly in real trouble.
So I shouted to G who came rushing upstairs with the emergency meds and together we just about managed to drag him onto the bed. She then squirted the first round into his mouth as I held his head back and his mouth open. We then started to count the minutes as he shook and shook and shook. This isn't just upper body seizures, it's everything, all over right through to his toes and feet all bent out of shape, grotesque in its twists and contortions. Seven, eight, nine, ten minutes and still he was thrashing. And so we give him the second round and, as attentive readers of my last post will know, called for an ambulance. But still the seizures went on, for something like half an hour, maybe 40 minutes. Typical of Joey, they stopped just before the ambulance crew turned up and we were able to give him his full medication and ourselves a cup of tea. He very slowly returned to normal, smiling shyly and licking my hand. Joey was finally back.
But this time, of course, he had to go into hospital and after careful discussion (including on the phone with a brilliant out of hours GP), Joey and I went off in the ambulance through the beautiful early Spring Norfolk sunshine. As we drove past Holkham Beach I remembered that we'd promised Joey that we'd walk to the sea. But instead, here he was drugged up to the eyes, asleep on a stretcher. The hospital in Norwich was great and eventually he was discharged and we managed to get him back to his college in one piece and they tell me that today he's fine. God save the NHS and let's keep it free at the point of delivery was my conclusion on Saturday, and the same is true today.
But I found myself thinking about something else too, and I really don't want this to sound self-indulgent or self-pitying. But a severely disabled child has a huge impact on his family, on the people who love him and everyone who comes into contact with him. And that, believe me, can be seriously bloody hard. I spent half the night lying next to Joe on Saturday worried that he was going to have another clusterfuck of seizures and that the alarm wouldn't work. G and I are completely knackered and found it hard to get back to work today, and I ended up shouting at poor little Bea (8), Joey's half sister, in exhaustion and, of course, grief and delayed shock. It's hardly surprising that there's such a high incidence of divorce, nervous breakdowns and poverty among families with severely disabled kids and the impact can be huge.
And we all have to recognise that there are no miracle cures for a kid like Joey, and the thousands of others like him. This ain't no movie, no West End show, there are no simple happy endings or consolations. And, no, epilepsy isn't a punishment from God for my many misdeeds, nor are the angels speaking through him when he has seizures. It's just hard and frightening stuff. Shit certainly happens.
But there are some brilliant organisations which help us get through. I'm the insufferably proud Chairman of KIDS, a national charity which offers an amazing range of services. Imagine, for example, being a couple looking after a profoundly disabled child 24 hours a day, and once a month your child is taken somewhere where he's looked after, given a great time and is totally safe, while you can give your marriage another chance. A short break like that is sometimes the one thing that stands between having a decent life and total bloody chaos. Or imagine being a parent of a disabled baby and feeling completely confused by the whole situation (I was that) but getting the chance to talk to, and learn from, parents who've done it before. This stuff makes a difference. Really it does.
Support KIDS if you can, and other charities like them: Joey will thank you, probably with a tickle, but, if you're really, really lucky, with a head lick too. He's that kind of guy.