The Cross Pirate (who lived in a bubble).

Today, Mummy is a cross pirate, and a sad pirate. Today, Mummy cannot figure out whether she is a homicidal pirate, a suicidal pirate, or is just really, really sick of all your shit. What the hell am I talking about? Well, it’s like this …

Freddie’s teacher has introduced a ‘Feelings Board’ to the classroom wall, to help the children learn about emotions. This term’s topic is ‘Pirates’, so everything has a pirate theme. The board has a number of pirate faces, each one with an expression corresponding to an emotion. The children can choose which one best fits how they are feeling that day/moment. But I doubt if the board offers anything that corresponds with the way I’m feeling today, because I’m struggling to put a name, or an expression to it myself.

Jean Paul Satre was right, you know: Hell really is other people. And the seventh, most torturous circle of hell is family. Except, of course, for my children, who are a little slice of heaven that I would never want to change or be without. But today, and on many other days, the rest of them can happily sod off to blaze (or Bentilee at the very least, that’ll learn ’em).

Yesterday, Daddy Bear teetered on the brink of a panic attack (yes, I really DO mean an actual, clinical panic attack) because someone had moved his porridge and he couldn’t find it and he was in a hurry because he was going to be lateandhecan’tgotoworkwithoutbreakfastandwherethehellisit. Mummy bear has simply taken it out of the microwave, and placed it on the worktop right next to the microwave, because it was done, and she needed to put something else in. An incident like that is bound to leave a mark even deeper than the bite marks on Mummy’s arm inflicted by Freddie because he sensed the suddenly and inexplicably fraught atmosphere and got into a bit of a flap himself. I won’t mention that he also headbutted me so hard that I’m surprised he didn’t hurt himself,because it was on my chest, and a lady doesn’t talk about that area (except when purchasing chicken from the butcher, when it is permissable to ask for ‘chicken bosom’ provided you don’t linger over the words).

He is also anxious (Daddy, that is), along with the rest of the family that I am planning to ‘waste my degree’. It has become quite a cause for concern, as I graduated way back in May, but I am not a millionaire yet, nor even installed behind a desk earning enough that my poor husband can retire.It is not envisaged that his retirement will involve him becoming a house husband – he will be doing a bit of consultancy work  and the like. When I mention childcare, the fact that it has to be paid for, and that in most childcare settings Freddie will require additonal one-to-one support, I get ‘that’s not my problem, that’s your department, you sort it out.’ Does stacking shelves in Lidl, largely just to pay the before/after school club fees, constitute a waste of a Creative Writing degree? Apparently not. Does working from home as a freelance writer , so that I don’t have to pay childcare fees? Very much so – because that’s not really work and you won’t earn enough (however, since I charge very reasonable rates for childcare, with free housework thrown in, anything I do earn can go straight into the family pot).

Of course, what is seen to be done is much more important than what is actually done. Why should I sit on my arse at home, having a whale of a time, while everybody else has to go out to work? I will admit that it has been both a pleasure and a priviledge to be able to spend so long at home with my children, bringing them up myself, helping them navigate the road to adulthood. I can see why they get pissed off about that, even a little jealous perhaps, because while they’ve been slaving away, I’ve been having a ball, didn’t even know I was born. It’s hilarious being the mum who’s shunned at the school gate because their kid is ‘weird (so you must be a very, very, bad parent). It’s a laugh a minute, going to pick your child up from school mid-morning, yet again, because the school can’t cope with his Autism, or the complaints from other parents that he frightens their little darlings with his oddness. I can’t tell you how many times I had tears rolling down my cheeks as I tried to calm him down and counsel him out of the terrible state that some other pupil had got him into, but who wasn’t in the leaast to blame because they were ‘normal’. The day when a group of parents planned to appraoch me, en masse, at the school gate, with the intention of ‘persuading’me to remove him from the school would have been an absolute hoot, if the headteacher hadn’t found out and put the kibosh on it. What? You didn’t know about that? No, you didn’t, because I dealt with it – no need for any of you to worry your pretty heads about it.

And when they’re not plagued with worry about all that, they’re fretting about how much time I waste writing a rubbish blog that nobody will want to read because there’s no struggle, no drama, everything is just too normal and ordinary. If my blog was a work of fiction I would agree – it needs far more conflict and struggle to make it a ripping yarn. But it isn’t fiction, it’s fact. And the fact is we haven’t faced many extra challenges because of Freddie’s Down’s syndrome. So far we have been fortunate to avoid the need for surgery, or the frequent bouts of ill health and hospital treatment that many others in our position face. I’m not going to invent hardships to make it more exciting. When Freddie was born, his diagnosis was enough excitement for me. What I wanted more than anything else was to cling to the comforting familiarity of the life I knew, which seemed in danger of disappearing over the horizon with it’s bum on fire. Luckily, for me it didn’t. And that’s the point. that’s why I write – not to prove what a fantastic mum I – believe me, I’ve been left under no illusion about what a shitty and use;ess mum and human being I am, but to reassure others. I write for the new parents sitting on a hospital bed, clutching their new baby, but looking forward with fear instead of hope. I write for the expectant mum sitting in a doctor’s office, hearing the message that her cherished foetus is defective, best doen away with now, so that she can try again, for a ‘proper’ baby, not the life-stealing monster the doctor thinks she is carrying. I write for all the parents to be who will join their number today, to let them know that, in all likelihood,  things will turn out much better than the physician’s doom-laden predictionswould have the world believe. I write to them know that you don’t have to be heroic, intrepid, or inspirational to give your child with Down’s Syndrome a good life; it’s perfectly possible to go on being an ordianry Joe and still do that.

Now, if you’ll excuse me, I have to go and knock a story into shape so that I can submit it to some journal that will give me a few quid for it. Or to enter it into a competition promising a decent cash prize. Then, if, when, it doesn’t win, I’ll just submit it to a journal that’ll giove me a few quid for it.

Or I might run away to sea, ntaking my three children with me, the only crew mates I want at the moment. We’ll procure ourselves a boat and set a course for the Seven Seas of Freedom from All Your Shit, where we can be happy pirates, ever after. The End.

 

 

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