This week saw us enter into a whole new world, all be it is a lot less magical than that of a Disney movie. Although the excitement of 6 paramedics and two ambulances at 7.30am on the first day of half term was more than enough to keep the toddler happy! ‘You come in my room for a tea party’ (she loves a good tea party) Luckily she was completely oblivious to the fact they were all here as I had walked in on her brother having a pretty spectacular epileptic fit. He likes to do things properly that one and made sure his first was a right blinder. Anyway cue a day trip to hospital for the little man and me transport curtesy of the NHS.
Although we have recently had the initial Epilepsy diagnoses his seizures have only ever presented themselves as absences before and I guess we just hoped that was that. But nope, now we find ourselves in a whole new world of yet another medical minefield. We are now all set with an emergency care plan for next time but apart from that it’s just a waiting game and at the moment that’s a game I’m not much keen on. I’ve made my peace with the Cerebral Palsy and Nystagmus, I’ve accepted them as part of who we are and they are now familiar and something I’m comfortable with. Epilepsy however is a stranger and one that right now I do not welcome. I don’t like it, I don’t want it to be part of us and I want it to leave my little boy alone. Unfortunately Epilepsy doesn’t give a shit what I want so will carry on regardless and we’ll all just have to suck it up and get on with it. Which we will and I’m sure with time it too will no longer be stranger and I will feel more at ease with how it affects my little boy. Hopefully we’ll have a slightly better idea of this when his super cool hi-tech seizure watch monitor thingy arrives (yes thats definitely the proper name). I think my husband is actually quite excited about the prospect of a new toy but with my lack of technological competence successfully changing the TV channel is something to be proud of. (Seriously why do we even have three handsets!?) So figuring this out will be a mile stone of its own. Meanwhile until our hi -tech watch seizure monitor thingy arrives (and if I can ever figure out how it works) I am our slightly lower tech seizure watch and am camping out in Little Holland’s room at night to keep an eye on what he’s up to. He just thinks that we are ‘having a sleep over’ every night which is as far as he’s concerned the coolest thing ever. It is of course a total blessing that he has no idea of the severity of what is going on just as he didn't when he finally fully recovered at the hospital ‘Look I’m having breakfast at hospital, that’s funny. Why are we at the hospital? I’m fine’ And he was, he really was. By midday he was haring round the ward playing, meanwhile was sat there looking like a boiled egg really wishing I’d got my arse out of bed 5 minutes earlier and slapped on a bit of mascara and some eyebrows. Don't get me wrong I obviously couldn’t have cared less about what I looked like when we were off to hospital in the back of an ambulance but I’d be lying if I said I wasn’t a little self conscious when it would appear to an outsider from my child’s behaviour that we’d just rocked up for an outpatient appointment and I’d sort of perhaps forgotten to get dressed. I’d also be slightly lying if I said this whole experience has been totally shit, it mostly has, but I am absolutely loving waking up every morning and seeing my Little Holland grinning at me as he says ‘I love you mummy, I love you all the way to the moon’ And I tell him I love him all the way to the moon and back, and I do I really do.
I would just like to shout out to every single member of NHS staff involved in my Little Holland’s care who have been absolutely fantastic and are a credit to a brilliant team of people we have in this country who go to work and make a real difference to people’s lives.
If anyone is living with Epilepsy or has a child who has been diagnosed I am happy to hear any tips on how to 'welcome' it into our lives. Also if anyone would like a tea party I have a toddler who would be more than happy to oblige.
