And what of the future?

My fishin pole’s broke, the creek is full of sand
My woman run away with another man
No matter how I struggle and strive
I’ll never get out of this world alive.

Hank Williams

Bear with me here while I wander off the path for a moment, here where there’s a lake by the bend in the road. Yes, I know you’re busy. We’re all busy. But it’s almost May and the leaves are starting to shout a bit. Hadn’t you noticed? Park the car and walk this way.

The thoughts in my mind just now are different. Who knows how long I am here for? What can I possibly hope to achieve? Can I keep going without questioning this burden?

Whether we make it a vale of tears or a place filled with the laughter of children is, I think, ultimately down to each one of us, and to exactly how long we peer into our own reflection, here in the mirrored surface of the lake. Or I suppose more properly how deeply we peer.

Jacob is lying spreadeagled on the bed beside me as I write and one part of me thinks Wow, there’s contentment. Another part of me thinks No, he’s too quiet and he doesn’t complain the way his brothers did at his age and that’s a poor sign for his ultimate survival instinct. He could be hungry and he’d not complain, and if either his mother or I were feeling extra tired we could take advantage of that fact, sleep on a little bit ourselves, warmed in the good intentions of feeding him extra a little bit later.

So what now? Do I spend the rest of my forties wondering about what’s going to happen in my seventies, if, Allah be praised, I see them? Or do I try to reach some accommodation with my more physical animal and just give thanks for each day as it comes? There’s a balancing act between the pension plan and dinner time, a high wire that I’m going to try my best to stay on. It’s not everybody’s way, but since I’ve already owned up, at least internally, to the fact that I cannot control much of anything then it strikes me as probably the sanest way to approach this whole set-up.

Hank Williams in his infinite wisdom sang about being a man who was gettin’ kinda mad in I’ll never get out of this world alive. As is frequently the case with country songs, the truth comes out when you’re crying in your beer. Not that I’m crying, let me hasten to add. I feel blessed in what I have been given. But the nugget of truth is there. We have a short span, and if we’re lucky enough to be given the option – and not everybody is – then we ought to grasp it and make something of the time we’ve got. So next time the car is too hot and you’re in a hurry to get there and there are a million reasons why you can’t stop and the lake looks too cold and too dirty and too wet and you haven’t got swimming gear anyway, stop and jump in will ya?

Today the mailman delivered a little bit of good news. We’ve qualified for Domiciliary Care Allowance. Yet another aspect of little Ireland that I was unaware of a short while back. What does it mean? In short, it means that Jacob’s status entitles us to €300 per month in state assistance because Dee is staying at home and forfeiting, for now, the joys of going to work. All part of the graft, because frankly I wouldn’t need it if my local newsagent didn’t keep selling me shoddy lottery numbers.

But I digress. Do you ever stop to think about how society is a wonderful thing? This big, sprawling machine that is, ultimately, well intentioned? I do, all the time. You can’t take for granted the fact that your bins are collected and you have water in your tap and your local shop sells onions, but we expect these things all the time, and we whine plenty when any one of our privileges is halted for half a minute. It’s not a divine right at all, any of it, and in many, many places in this little world it’s never going to happen.

I’m going to say a little prayer of thanks to The Boss tonight for our Domiciliary Care Allowance. We’re getting it because Jacob’s chromosomes arbitrarily decided at conception to dance to their own tune, and because we’re terribly lucky to live where we are when we do. Nobody owes it to us, but it’s happening nonetheless. I think that is somehow enlightened. And so tonight I give thanks, and I cheekily ask that others less fortunate than us may enjoy the same privilege.

Amen.

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Thanksgiving

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.

Is it ok to laugh now?

If you don’t laugh you’ll end up crying. A cliché only gets to be one because it’s true. And this Down Syndrome business is serious enough to need a good laugh. Other people need wheelchair-accessible cars or guide dogs or have chronic asthma or a million other circumstances to mark them out as special, but to them it’s just life. Downs is a reality in my family’s life. And laughter is still needed.

One of the small ways that humour pops up for me, totally uncontrollably, is when other people, who have no abnormalities to deal with and no real experience of special needs, put their foot in it. It’s not their fault if they inadvertently give thanks to God (and to me) that all their children are ‘normal’ and then realise that our Jacob isn’t quite the same, but a tiny smile will crease my face when they do. It’s not being mean, not really. It’s just that Downs isn’t a bogey word for me. I have a grip on it, if only in the last four months. People don’t need to blush and want to apologise for their faux pas. It’s ok. I’d do the same, I think.

But laughter can stir up plenty of heated debate. Take Tommy Tiernan’s most recent stage set, Bovinity. Tiernan is an observational comedian who has had his fair share of controversy over the years. He also does great work for Down Syndrome Ireland, but when he used that experience in his stand-up routine oh boy did he get a backlash. Here’s Ed Power, writing on November 27th, 2007 in The Irish Independent.

The most uncomfortable moment, though, is at the end, when he impersonates a person with Down’s Syndrome. Introducing the segment, Tiernan explains that he participates in charity work for Down Syndrome Ireland — apparently he believes this gives him licence to laugh at disabled children. What follows is crude, cruel and, above all, unfunny. If Tiernan’s purpose is to jolt his fan-base out of its Friday night comfort-zone he has certainly succeeded.

Now you’ll have to find out for yourselves if this kind of thing offends you. I had a look at his comments on the DVD copy Dee got me for Christmas. He does indeed affect a Downs voice. He talks about how direct Downs people are, makes a joke based around the old name of Snickers (he was running the marathon in aid of DSI), goes close to the edge when suggesting that people who have DS would make great drug smugglers and generally confronts the visible reality of Down Syndrome. I can understand the anger that some people feel, and it is entirely legitimate, especially as they rise to defend someone who may not be able to defend themselves on the same platform. Yet TT doesn’t strike me as condescending or cheap. There are easier ways to get cheap laughs that making people take painful looks at themselves and their reactions. Anyway, draw your own conclusion. Suffice to say that it got a smile out of me but ultimately, I’ve heard better material from you, Tommy. I’m still enjoying more the fumblings of the people who put their foot in it and try to back out, but I’m certainly not going to pillory a comedian who shines an objective light on any group in our society, Down Syndrome included. Keep on truckin’, Tommy.

Tommy Tiernan and friend at rev-up for DSI ’07. Photo Gerry Casey.Tommy Tiernan and friend at Rev-up4DSI '07. Photo Gerry Casey.

Things the meeja said:

The Irish Independent

Sky News

RTE Liveline