This blog’s SUPPOSED to be about me…

Seeing as nobody else is doing anything about bringing the glorious minute-by-minute news of me to you, my fashion-starved friends, I’ve once again had to take control of the the entire internet to update you all. The world is in imminent danger of economic ruin and unimaginable collapse, it’s true, so why not check out my big white boots?

Aren’t they cool? And has anyone ever shown a pair of dungarees how they should be worn more successfully than I do? That’s right, they have not.

I admire you for your intelligent and insightful analysis, all of you. I totally dominate the camera. And the catwalk. Not so much catwalk as crawl perhaps, but I wouldn’t be the first supermodel not to be able to hold themselves upright on a given day, would I? Heh heh. Oh listen to me! Who am I to fire cheap shots at a much maligned segment of society? Forgiveness!

And just in case you think I can’t act up with the best Naomi Campbells and Kate Mosses, check me out here after I fell off the bar stool at some after-show party in Kensington last week. (I’m posting it here because that way I have some degree of control over those infernal paparazzi, and because I can trust you good people not to tell everyone else.)

Ha ha ha hic! Shares in me are on the floor!

Ha! Fooled you. I hadn’t been drinking at all! I was just stress testing the furniture round these parts. Something tells me it’s going to get a lot of testing. And stress. What do you think of my mechanic chic?

Ooh… be two weeks before we get a replacement for this gasket, love.

Ok, enough of the small talk. I have actually been working too, you know. Apart from now pretty much owning the downstairs and forcing the Big Ones™ to actually sweep/clean the floors every so often, I have also started talking. Whole sentences. (Oh, have to tell you this one. Stubbleyman, in bed a couple of days back, was trying to squeeze those last 15 mins out of the cosy duvet, or comforter, for you up-and-at-em Yanks among my clearly superior and discerning fans. Normally I’d just be awake, wondering if they’d ever feed me again and yakking my stream of consciousness babble, right? But just to throw it out there, I decided to say I wanted to be fed and forthwith if you please, my good man. I think ‘More nam nams‘ was how it came out, or possibly even ‘Mah nam nam‘, but you catch the drift. Man! He was out of the bed like a ricocheting knife off Herself’s week-old lasagne. I think he dislocated his gossip bone in the race down the stairs to tell Herself about the genius they’re slowly realising that they got lucky with. Wish you coulda seen it. Oh yes, I have finally discovered the secret of the guilt trip, and by golly I’ll be exploiting it.)

I’ve also seen fit to let them know that I am fully aware of where their noses are. Well if they’re silly enough to ask, it would be rude of me not to answer by honking good and hard on said proboscis, no? I’m just about beginning to do the hug thing too, but I’m not sure they’re ready for it yet. Whaddya say, Elbog?

They’re also starting to annoy me with flash cards and repeating words over and over again. What a pain. If I say ‘Ball’ back to them do you think it’ll make them go away? Or will they just harrass me more? What should I do, gentle readers?

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Thanksgiving again

Thank you so bloody much for picking on me.
Thanks for that first terrifying moment when I saw his different eyes and the world fell away.
Thanks for that cold, dislocated feeling when the doctor said the chromosome test confirms it.
Thanks for the anger and resentment.
Thanks a lot for picking on me.

Thanks for all the new words I’ve had to learn.
Thanks for the glory of meiotic nondisjunction events.
Thanks for the single palmar fold.
Thanks for trisomy, mosaicism, epicanthal folds, hypothyroid, hypotonia and arrhythmia.
Thanks for that extra wide gap between the big toe and the rest.
Thanks for a life that was complicated already, and now this?
Thanks for the unannounced bouts of embarrassment.
Thanks for pitying looks and well-meant overcompensation.

Thank you so much for picking on me.
Thanks for Significant Life-Threatening Events and Near Misses.
Thanks for beeping monitors and oxygen tubes and cluster care.
Thanks for apnoea and last Christmas, Lord.
Thanks for these fears for the future.
Thanks for this uncertainty of the present.
Thanks for red tape and robot-voiced bureaucracy.
Thanks for all those forms I love to fill.
Thank you indeed for picking on me.

But then thank you for January and that first smile.

Thank you for almost but not quite taking back the gift I didn’t know you’d given.
Thank you for that rush of blood that makes my heart thump louder.
Thank you for the knowledge that I will protect him with my every breath.
Thank you for the help, along some dark steps, from caring strangers more qualified than I.
Thank you for neighbours who don’t hesitate.
Thank you for trisomy and mosaicism and epicanthal folds.
Thanks for hypothyroid and hypotonia and arrhythmia.
Thanks for Significant Life-Threatening Events and Near Misses.
Thanks for beeping monitors and oxygen tubes and cluster care.
Thank you for the love that swells up inside to hurting when I look at him.
Thank you for each one of our wonderful, imperfect family.
Thank you for that very first smile.
Thank you for that very first smile.
Thank you for that very first smile.

Thank you for Jacob.

Thank you for picking me.

This is not a new post, as some of my older journey mates will notice. But a year or more in, I have changed in a lot of ways. I repost it now, and I’m mostly glad at just how plain ornery No. 3 has since become in the family mix. I look to the future (just a little bit at a time) and I hope it always stays so, but we’ll live in the future one day, so I’ll wait for that one day before drawing too many firm conclusions. Enjoy your day, wherever you are.

Wills, won’ts and don’t-want-tos:Jacob and the future

Some people become paralysed by overriding concerns. With me, alas, concerns have never truly been able to override whatever it is that I’d rather be thinking about. I have the remarkable ability to face important issues and promptly park them on the least visited floor of my mental multi-storey. Often I lose the ticket altogether and have no idea what it was I parked, let alone where. A Fiat 500? A unicycle? Impending total kidney failure? Taxi!

Some might consider this a good thing. Others might view it as a fatal character flaw. I don’t know. I’ll think about it later.

In the last week or two however I’ve been caught unawares. Ambushed by thoughts of the long-range future, you could say.  One of these came about when I went to St Michael’s House for an evening’s light entertainment on the subject of making wills and provisions, specifically for children with disabilities. (This has been covered properly by South Dublin Dad last September.)

And just in case the subject matter wasn’t hitting its gothic quota, the Dublin 11 weather obliged as if it was doing a screen test for Wuthering Heights or maybe an Agatha Christie whodunnit. It was an extremely inhospitable, storm-lashed night. Winter-stripped branches lunged at us as we ran across the flooding car park. Rain barrelled down, drenching all and sundry in the dozen steps between their cars and the school assembly hall. Short of a few streaks of lightning and a creaky olde inn sign that read ‘The Last Will & Testament’, the scene was well and truly set for a powercut of an evening’s entertainment.

I expected a dozen people to be there maybe. Not 130 rapt parents in a warm and inviting assembly hall, listening intently to solicitor John Costello from the firm of Eugene F Collins as he gave thoughtful insights on the subject of providing for your disabled children after your death. He was clear, concise and gave excellent and unbiased advice. Legally unbiased, that is, in the sense of looking for your business. He wasn’t. He has other vested interests, both with St Michael’s House and in having an older sibling with disability.

So why did it rattle me? It’s not as if I haven’t thought about life for J after we’re gone. Well, in one soft-spoken piece of advice, Mr Costello said that you couldn’t expect a child’s siblings to be their primary care givers once you’d died.

That was all. Nothing earth-shattering. Unless, like me, you’d constructed a neat little rapid-fire solution for the future (the boys will take care of him) and then stuck it on the back burner of complacency.

You can’t expect a child’s siblings to be their primary care givers once you’ve died.

Simple. And of course, absolutely right bloody on. Jacob won’t be a baby forever, a hardly-any-burden-at-all bundle of joyfulness. He’ll be a grown man, well capable of offending his brothers’ wives’ in-laws. More capable of offending them, possibly, than the next man. I don’t know. How the hell am I supposed to know?

You think I want to be bothered with this? I had it all neatly stacked. The boys will take care of him. Mr Costello very kindly went right ahead and drove the stunt car through my deliciously neat stack of stunt cardboard boxes. You can’t expect a child’s siblings to be their primary care givers once you’ve died. Dammit.

Then last week, as if to reinforce all that, our young man uttered his first word. Aptly enough, it was More. My heart skipped a beat, as you do. He wasn’t asking for more food either. He wanted more Wheels on the Bus. Bouncing on my knee was ending too quickly, he felt obliged to tell me. Well we could sort that out. He ended up close to puking by the time the Wheels finally coasted to a stop. But he did keep asking for mah. So it was his fault really.

And now I have to think some mah for myself. Mostly around the area of a Discretionary Trust. Because, according to the man who pulled my head out of the sand, that’s the thing to do for someone with a disability of the learning type. It removes the issue of inheritance tax, it won’t affect the individual’s disability allowance the way ordinary inheritance would and it’s not means tested. And I can’t expect Jacob’s brothers, who God willing will have long lives and trajectories uniquely their own, to be responsible for him all his life. That would be the easy way out.

Put the kettle on! There’s visitors!

Seems that while we’ve been blogging, Jacob and I, the cyberbell has been ringing and a neat queue has formed at the door. The lovely India Knight has linked to us at The Times Online and now we’ve been caught napping.

This blog hasn’t had a lick of paint in forever, Jacob’s been hopeless at encouraging me to post new info, he hasn’t written a sodding thing himself since he turned fourteen months last week and now we’ll really have to organise our shoddy categories so people can muddle around in a vaguely not lost way. And as if that wasn’t embarrassing enough, these aren’t even my best y-fronts.

Ach so what! This is us, you’re most welcome to our place and don’t worry about the snow on your boots.

A winter eviction for Travellers with twin Down syndrome infants

From the Irish Times, Thursday 29th Jan:

LOCAL AUTHORITIES in Waterford last night evicted a couple and their three children, including twins suffering with Down syndrome, from their home at a city halting site.

And from the Independent, same day:

The O’Reillys said yesterday that they fear for the health of their children James (3) and twin girls Charmaine and Nikita (18 months), who both have Down Syndrome and bronchitis.

So here’s where the country has got to. I honestly didn’t think that recession included the receding of the warmth of human kindness. Have to rethink that one. But I’ve been wracking my brains as to how – on absolutely any level – the city of Waterford can actually be served by the actions of its council in the eviction of this young Traveller couple last week.

In this era of bad decisions and poor management, WCC has just made a monumentally memorable cock-up.

James & Helen O’Reilly with daughters Charmaine and Nikita

You can send your thoughts directly via email to Waterford City Council by clicking here.

Email: info@waterfordcity.ie

Their switchboard can be called at 051-309900.

Write directly to City Hall, The Mall, Waterford.

I suggest you mark your envelope ‘Thundering Clowns Competition.’

***********

Update: Feb 5th

Having sent an email to the Council last night, I received the reply below this a.m. To be commended on their speedy response time, if not their volume of info.

Joe Sullivan <jsullivan AT waterfordcity DOT ie> 5 February 2009 22:36
To: nmcgivney AT gmail DOT com

I refer to your email, and I understand your concerns for the family,
however I presume you have based your email on the elements of the case reported in the media, which do not in any way reflect the full context surrounding this case. The Judge considered the case fully and made his decision. I trust that this info is of assistance.

Joe Sullivan
Waterford City Council

—–Original Message—–
From: nmcgivney AT gmail DOT com
Sent: 04 February 2009 21:37

Subject: Council Business Traveller evictions

I only heard today about the decision to evict the O’Reilly family from their home. Appaling decision, whatever the reasons. This shames Waterford in the eyes of not just right thinking Waterford people, but the entire world. Is this the humanity that the wake of the economic boom has spawned in the Southeast? No alternative to this
fiasco could be found? And fiasco it is, on every conceivable level. I am father to an infant with Down syndrome, I know the hardship and difficulty it can bring. And I do not have to deal with Traveller bias OR twins. I’m judging it purely on these terms, and so should whoever made the appaling decision in the first place. Waterford, a town and county I have respect for and greatly admire, has lost standing.

Written with regret this 4th February 2009.

More to follow as the facts emerge.