Having children as a UC sufferer adds a layer to the whole experience. First and foremost is the constant need to suppress the head-voice that likes to remind you that most "current research points to UC being of some sort of genetic origin and therefore likely to be a family trait...". The last thing I want to do is foist my anxieties on my boys (particularly as I'm currently working on the premise that dark mental forces may be at work here), but likewise one never can stop oneself from surreptitiously checking that all is well in the toilet. Boy 2 has concerned us, on occasion, when complaining of stomach pains etc (as every child does of course), and also because he goes through periods of immence flatulence (he enjoys telling tales of unidentified trouser-coughs he drops at school, then stands back and watches as the chaos ensues...), though these are mainly linked to dietry factors (my greatest fear is that, like me, fish and chips mark him fart like a foghorn - of course he eats stuff like that rarely, and I never touch em anymore. My guess is it is the oil they fry in).
However, I have always been pretty upfront with them about what is wrong with me. Naturally I have spared them the gory details, but they often ask me UC related Q's and I answer as frankly as I can. Boy 2 is also very aware of the blog. When I pick him up from school, after our inevitable daily trip to Tesco (how much bread can one family eat?!), we get home and his first port of call is the PC to spend time on ClubPenguin. This is a social-networking site for primary school age kids - its very well run and monitored (though I recently found out, to my horror, it's a offshoot of the evil Disney corp), the kids are little penguin characters and they roam around the vast penguin world chatting to other penguins - no names are allowed and their conversations are limited to stock phrases - playing games and other penguiny stuff. Anyway, he likes to get on it straight away as he is not allowed on the computer after 6pm. Unfortunately for him, once the PC is on I have to put in a password before they can access the web (thus neither gets on without my knowledge - aha!), which often means I say to him "you can go on after I've checked my blog and emails...". And so he is often stood at my shoulder when I check the blog early evening. So...
The other evening I was sat at the table with him when I noticed a far off look in his eyes. Hello, he's thinking about something, I thought:
"You alright son?"
"Yeah. You know your blog?"
"Can anybody read it?"
"Yes, it's on the internet so anybody can look at it."
"Do the kids at school read it?"
"Oh blimey! No. They don't read it..."
"Haven't you told them about it?"
"No. I wouldn't tell them about it (heaven forbid!). I don't really tell anyone about it. It's kind of anonymous - I don't really put my name on it - no one would know it was me that wrote it"
"How do people find it?"
"Well, you could search for it."
"Wouldn't the kids at school find it?"
"No, because you would have to do a very specific search, not my name for instance. You'd have to be searching about the illness or something."
"Like on Google?"
"Yeah, that's it"
"So, you could search on Google for your illness and your blog might come up?"
"Riiiiiiiight. So I'd just have to type cerebal palsy into Google search and I could find your blog...?"
That's when I spat tea across the table. God alone knows what he has been telling the kids at school, or his teacher...
Rituals of Loss
3 months ago