Thus endeth a poxy summer

Today I didn’t run the Dublin City Marathon. I didn’t come in under four hours. I’m not bruised and sore. I didn’t get the endorphin rush that comes with scraping over the line and I didn’t raise a shedload of cash for Down Syndrome Ireland and St Michael’s House. Gah! I didn’t get to look like this bundle of pent-up energy from four years back. And what an unstoppable force he is. Coiled tight like a… like a dishrag.

So no marathon 08. The writing was put on the wall back in summer. Tuesday 22nd July, while I was visiting my father in hospital, I got a phone call. He’d just had a quadruple bypass. Last thing he needed to hear was how my employer of fourteen years was closing down and laying all the staff off. I didn’t especially need to hear it myself. Luckily (for Pops at least) my guardian angel had conveniently arranged for me to leave my phone on the driver’s seat of the car on a dodgy side street, in full view of every pigeon-necked shoe-shuffling skanger in Dublin 7.

Well done Archangel Nokia. Because of you Dad didn’t get to have a pained reaction and wander off towards the light as he watched me take that phone call. And it also meant that I had a car seat under my ass when I got to hear the news.

We were given six weeks.

It’s hard to quantify the feeling. It felt like a chasm had opened up beneath me. No, not opened up. Revealed itself. A big, grinning maw of spikes and jagged rocks far below that had always been there, but fourteen good years on the front tit kept me from seeing it. Well it was there now, and it would never not be there again. The grip of friendships felt suddenly tenuous. The long cycle up the road to home (our suddenly threatened home) made me feel that every single neighbour knew my shame and inadequacy, and was secretly indifferent. Nobody had any idea, but that didn’t stop me from feeling intensely watched. First there’s a paralysis, then there’s a frantic burst of misdirected energy and all the while there’s a feeling like the world has gently fallen away and you’ve got too much caffeine in your system. We’ll lose the house! What the hell’s going to happen with the kids? They’re babies! Jacob can’t look after himself HE CAN’T LOOK AFTER HIMSELF!!

It takes a lot to make me lose sleep. But I lost sleep. With spectacular timing the builders had just started the attic conversion, so we were all homeless vagabonds crashing in the houses of whichever family members were on holiday right then. Jacob had just been discharged from hospital, Dad was starting the slow road to discovery and I was standing on a tightrope high above it all. So marathon training kinda came undone at that point.

My apologies to those who pledged and gave cash and to those who offered me such good encouragement. A plan is being formulated and the roads will not be safe from me for much longer. And the rest of this story is already on the boil.


Life has speeded up

There’s too much going on. I desperately want to find the pause button. I glimpsed it yesterday but it scurried away. I’m aware that the present tense is all that we have but I’m still unable to enjoy that because right now I can’t find the pause button. I glimpsed it yesterday but it scurried away. I’m aware that the present tense is all that we have but I’m still unable to enjoy that because right now there is too much going on and I can’t find the pause button.

Thanks to orpees for finding the image. Which isn’t actually a thing either.

Cyberlove. All of the fun. None of the Kleenex.

I have to say thank you tonight to four great people. I’ve not had the pleasure of meeting Nan P, Cathal’s Mammy, Sesame and Hammie, but I know a lot about a little of each of them. In the last week or so they have all separately named Our Jacob as a site that they like, so obviously they’re particularly discerning and highly intelligent individuals.

Initially, being the rejectionist that I am (actually I’m not) I thought ‘Oh, here we go, another piece of shiny bloggerbait.’ (I’m a bit too precious like that sometimes: Stick with the mission, Nick. It’s about Jacob, his difference, his impact, his effect on us, our coping, our adapting, our stress and all the rest of it. That’s the reason why I don’t list any of the other wonderful and nourishing blogs that I read and contribute to on a regular basis. My links are to people or places with special needs relevance or crossover.)

But now I realise something else. The four people who passed this outreach to me are special and, by no small coincidence, they are all very close to people who deal with stuff in ways that the majority of us don’t have to even consider. They share some genes with people who don’t share some other genes with most people. And here we all are, with our special needs on our sometimes turbulent but mostly cheerful ship of specialness, scuttering away across seas of- oh for sweet Jesus’s sake get on with it, windbag!

Kay. I want to say a big thanks to all four of you, for thinking of this journal as something that has relevance for you. I’m glad it does, and yours all certainly do for me. I hope others who read this end up linking and learning. Now on with this chain mail, about which I am absolutely not cynical, Hammie. No, I swear!

Les règles du jeu:

1. The nominated may put the picture on their blogs.
2. Please link to the person who awarded you.
3. Then annoy nominate seven other people and link to them.
4. Leave a message on those people’s blog to make them aware that they’re nominated.

My annoyminees:

South Dublin Dad is Ava Charlotte’s dad and makes me consider important stuff that I hadn’t considered. A good thing.

Wellied on Life ALWAYS has an alternative weather report, and she never fails to stimulate my grey matter.

The Muse. Noah’s dad writes good, and gives me the comfort of strength in numbers. I’m not the only joker in this pack!

Mothering by the seat of my pants. Chris does a lot of wondering aloud. But it’s never idle and it’s usually challenging.

Bock the Robber. I’m giving this to Bock in honour of his long-range opinions and his sublime crankiness. A beautiful award like this will probably add to the latter.

The Voyage. Sharon’s the centurion at the gate, advocating for autism in a beautifully written way. But watch out – she knows kung fu.

Narrow Ridge. Tom, another downsdad, always delights me with his pics and thinks through things before speaking. Clever.

Play the game or some or none of it – all up to you guys. I won’t be offended. I include you all because you’re worth it and you all stay on my Reader, not that I think you’re clever or anything…


Action for autism

As a parent of a downie, I get to take a lot of state and social assistance for granted. Within reason, of course, but I’m very thankful for it. To a significant degree, it allows us in Downsyndromeland to get on with managing and providing for the special needs of our affected family members. It wasn’t always that way, and I’m acutely conscious of the efforts of a generation of parents before us who hacked a clearing for us.

To my uneducated eye, it seems that the current generation of parents of autistic kids are engaged right now in that titanic struggle.

I hope this post can help to drum up some support for them. If you can take moment to visit O2’s website here it will tell you about their initiative with Irish Autism Action to raise the (inevitably named) much needed funds. This from O2:

October sees the launch of a new initiative by O2, in partnership with Irish Autism Action. It is called the Irish Autism Action Affinity. This offer is open to both prepay and post-pay O2 customers and the message is simple – Text the key word ‘AUTISM’ to 50308 and 5% of your O2 monthly spend will go towards autism services in your community.

Ok, you got that? If you’re an O2 customer, text AUTISM to 50308 and O2 will donate 5% of your monthly spend to autism facilities. That’s money that you’ll be spending anyway. And if you have no connection with anyone with autism, you might end up never having a clue as to the extent of the wonderful a thing you’ve done.

But I’m telling you now.

It’ll be a wonderful thing.

Unfortunately my esteemed readers outside of the Republic of Ireland won’t be able to take part. We’ll get Hammie to get to work on that. I believe world dominion is part of her plan for November. I know too that I have one or two readers who fall outside the special needs carers category. Guys, your help would be appreciated by some seriously overstretched people.

God bless.