Here now, this isn’t right.

Howya. I’m Jacob. Seems this website’s all about me. Well that’s just fine and dandy but nobody asked my say-so. Did anybody come and ask me to write anything? No they did not. I see plenty of pictures of me up around here and I don’t remember giving any permission for any of them. I’m six months old and I have rights, or did nobody tell that misguided pair of ‘guardians’ I seem to have ended up with? There was definitely a mix-up in the hospital there, but nobody will listen to me. Anyway, that’s for another day.

Here, I’m not in favour of this at all.

Now I’m not sayin it’s their fault entirely. It could have happened last week when things got a bit mad. There was some drink taken, ok? I admit it. But I turned half a year old, you see. Well it’s a big deal for me, alright? I’ve been waitin all my life to be a half year old. It does bring certain benefits, as you will see.

Now where was I? Yeah. Last week. Three mad things happened at once. Number one was, I had this forty Rothmans cough on me. There was a chesty dose doin the rounds, and if I’m bein totally honest this was after about a week of bein fairly much ignored by Yer Man and Herself. The two smaller ones weren’t up to much either. Mostly fightin among themselves, breakin off occasionally to annoy me. (I’m goin to have me work cut out for me there, I can tell. Seems fairly apparent in general that I’m goin to have to look after myself around here.)

Anyway, as I was sayin, I had this hack of a cough and eventually, EVENTUALLY they decided to get me an antibiotic. Nearly had to call the medics meself. But the good news is that when you’re my size, there’s a great kick off that yellow stuff. Sugar hit that’d knock spots off a dog.

Ok, so that’s the first thing. Second is solids. They put me on solids. Jayz but that rice is great stuff. I’m lashin into it. One of the benefits of hittin the old six month mark. If I keep this up I’ll have a good extra stone more on me before I squeeze into me Speedos for the summer. I’ll have Yer Man’s back out in no time. That might knock some of the big moon face goo-goo gaa-gaa out of him.

Anyway. I’m already buzzin from the antibiotic. I’m full as a tic from the solids AND the bottle. Wha-hey! Party time! Then, wait till you hear this one, then they have me in a DIY ‘steam room’ that Yer Man and Herself made up out of their own heads, God bless them. A special medical piece of equipment to assist with my breathing. High-end stuff now, years of research and development from a joint team at Wyeth and Pfizer and Elan. Yeah, as if. Wait for it… a poxy one-man tent and the bottle steriliser! Jayz but didn’t I land on me feet with Mr and Mrs No-expenses-spent-for-our-precious-special-one (that’s me by the way)? This tent will not be comin with me to any Electric Picnic in the near future or the far future either, let me assure you now. You wouldn’t keep a sick cat in it. That had a sight impediment. And was in a box with a lid on it.

But anyway. What I’m gettin around to sayin is that the combination of a feed of milk and lovely, lovely rice, on top of that yellow stuff from the chemist, and a good blast of sauna steam, well it went straight to me head. Basically I was fairly much out of me tree. I could’ve agreed to let them do a website I suppose. I can’t remember much about it. But that does NOT make it right. And it’s certainly not right either that I have to sneak up the stairs and hack into the bloody thing meself if there’s ever goin to be anything truthful said from my side!

You can bet your bottom dollar they’ll be trying to get it out of me this evenin. Tryin to get me to talk. But I’m not as thick as the ones their mammies and daddies had. I’ll look up at the big heads on them and their big funny round eyes and throw an odd laugh out of me and I’ll have them eatin out of me hand before teatime.

But mark my words, there’s more to be said from my side around here. I know me rights. This ain’t over. Here, there’s someone comin’ up the stairs. Where’s the off button on this thing?

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Meet Dan Drinker

Last night I was sent a blog address for brothers Will and Dan Drinker from Pennsylvania, and it’s really stirred some things up. Dan is 22 or 23, and he’s got stuff to say about the US presidential race.

This is, God willing, a little peep into the future for someone like Jacob. Dan seems to be a thoroughly well balanced type, with his own views and his own perfectly sound criteria for judging things and people. His brother Will is an amazing influence in the background.

Part of me rejoices at Dan’s togetherness, purely for his sake. Another part hopes that my own youngest son can share this level of development. And some of me is saddened to see the differences of being a ‘Downsey’ realised. I know that it brings positive differences as well, but there is no doubt that it brings struggle. If you go to the youtube site where the video clip is posted you’ll be able to see dozens of responses to Dan’s Obama endorsement. The vast majority are positive. But there are some bone-headed idiots in there too, and that’s something I can easily overlook with our six month old baby. I won’t always be able to ignore it though, as discrimination will absolutely feature on Jacob’s journey. So right now I’m pondering that imponderable.

You could drive yourself mad trying to protect against every eventuality, but ultimately you won’t be able to do it. Life’s a terminal condition anyway. It’s supposed to get used up, not stored away, so we might as well get on with it. There’s a whole lot of good stuff to be doing, as Dan and Will show on their video diaries, which are really worth watching if you happen to find yourself in the human race.

A big thank you to Naomi for the link. Dan’s the man.

I am angered

It is late at night and I am tired. Never a good idea to try to rationalise your anger when you’re tired, but it’s too late for that now. I have just read a statistic in a newspaper article that has made me want to abandon forty years of laid-back liberalism and start swinging an axe. How can I continue to live and let live? 98% of positive Down syndrome amniocentesis tests in the UK end in termination.

Did you get that? I think I need to say it a bit louder.

Out of every 100 babies conceived in the UK with Down Syndrome, 98 are killed.

Termination is a cop-out non-word. You’re dealing with the ending of organic life. I’ll call it what it is. Killing. You wouldn’t terminate a chicken. There’s another word too that is hovering dangerously close to my fingertips.

I’m sorry. I can’t deal with this right now. Jacob’s hearing test in Crumlin this week shows that he’s likely to have impaired hearing and that was annoying me greatly there. Then some pictures of great kids on the Nigerian Downs Assoc website made me smile so that was nice. But all that’s kicked into a cocked hat because in the UK in this age of enlightenment and sensitivity to the planet they kill babies who have Down Syndrome. Beautiful, beautiful people, misunderstood by those who know better before they have a fucking chance to introduce themselves. Here I am, terrified of the political incorrectness of calling Jacob my Down Syndrome son (when he’s actually my son with Down Syndrome if you don’t mind), but who gives a flying crap? What the hell does that matter? In the UK they kill babies with Down Syndrome, and it’s legal and quite apparently the done thing. NEVER DO THE GOD-DAMNED DONE THING!

Aah, I am hanging my head in shame for my fellow humans and crying quietly into this night and I am trying to be gracious and pray for them at the same time because I do not think that they know what they do. I have a beautiful boy whose every cell is graced with forty seven chromosomes, 23 from me and 23 from his mother and one little bugger that slipped in just to spice things up a bit. Could I have considered ending him for that, had I known his status before his arrival? Not while breath moves through me. Could I find forgiveness for someone who would make that choice, someone for whom Down Syndrome would be reason enough? Could I? Forgive me instead Lord, I fear I could not.

It is late, and I’ve already said that it’s a bad idea to try to rationalise emotions when it’s past bed time, but right now I don’t think I could trust myself around that kind of decision-making person. No. It’d be safer to be somewhere else.

‘God has a knack for choosing great parents’

Anyone who has a kid with Downs will tell you that they hear some pretty outstanding things, and surprisingly often from people who they’d expect to have more cop on. I’m getting a business card made up. I’ll carry a dozen in my pocket, and when somebody says a crass or ridiculous thing I’ll hand it out. It will say Ensure that the circuitry between your mouth and your brain is regularly checked by a fully licensed professional. This consultation has cost you €1. Have a nice day. I’m also going to have a version that says Because I know you and didn’t expect such stupidity from you of all people, this consultation has cost you €2.

All proceeds will go towards the registered charity of me, for having to put up with such drivel. I fully expect to be in a position to retire within six months at the outside.

I’m sure it’s not deliberate or nasty on the part of those people who say silly things, but it is thoughtless. And we’re all smart enough at this stage not to need to be thoughtless. I’m far from the perfect gentleman myself, but by now even I have learned NEVER to assume that the bump that lady is carrying is indeed pregnancy related. ‘When is it due?’ is not a question you’ll hear from my lips, no siree. What’s more, I know that attempting to truthfully answer the ‘What age would you say I am’ question is a mug’s game. And irrespective of how hideous the outfit is, I will not ruin the entire wedding by needlessly speaking the truth to the foolish person who thought that such a coma-inducing get-up was a good idea.

I have learned, you see. I know that the good Lord will overlook these things on Judgement Day, because I do not doubt that even the good Lord has fibbed on occasion. Aha! But not so those well-meaning people who say those well-meaning things like ‘I couldn’t think of anyone better than you to be a parent to an angel.’ (You couldn’t? You COULDN’T? But surely you’d like a shot at it yourself? No?) Course you can’t say that. You can only think it. Because the chances are that it’s coming from the mouth of someone you actually do like and respect. That’s part of the killer. This person is letting you down and will never even know it! AAAGH!!!

Here’s another one. ‘I think that this will be the making of you.’ Oh you do, do you? Well God bless your infinite font of universal wisdom, you jackass. I’m not a bloody flan. The ‘making of me’ didn’t necessarily require 6 lbs 14 oz of baby with extra chromosome, did it? Only I never actually got the recipe.

Here’s an even better one. Not strictly in the same department, but worth the admission price. I know someone whose stock refrain to any moan about kids was the classic ‘It’d be worse if they had Downs.’ I never even used to hear it, it was so worn out. In fact, like the annoying buzz of next door’s lawn mower too early on Saturday morning, I only really heard it when it stopped. It stopped six months ago. Can any of you guess why? Huh? Can you?

Oh don’t mind me. Some days I just want to let off steam. Some days I just want people to use that nicely non-committal ‘And how are you with that?’ line. It’s worked for generations of therapists wearing comfy shoes and cardigans and it bloody well works for me. (Ok, I’m entirely guessing about the therapists bit, but it might be true.) Some days that’s good enough. Today that’s good enough. But enough of my yakking. I must go off now and be the parent of an angel. I think it will be the making of me. And let’s face it, wouldn’t it be worse if he had Downs? 😀 😀 😀 😀