Sleep well, little Sorcha

A long drive to Tipperary today. A funeral. My friend and her partner walking down the aisle, carrying a small white coffin. Their fifteen day old daughter, Sorcha. They wrote some beautiful, hope-filled words for the priest to speak on their behalf, words that wrapped little Sorcha’s spirit in feather-light love as it lifted away into the embrace of light above.

It’s hard to find the hope in all this. Not for beautiful little Sorcha, who left this world as unblemished as any soul could ever hope to, but for the rest of us. As her parents carried her insufferably tiny little coffin down the aisle, all I could see was the empty little trestle left behind. All I could see was the place where she used to be.

The slow shuffle of feet to the exit. The open doors made a hole of sky in the darkness at the back of the church. And maybe I heard her laughing gurgle as she led us out. I hope I did. I know I swore at God on the long drive back to Dublin. I know that.

Sunday’s papers, Tuesday’s Child and Wednesday’s sign language course.

Everyone’s away at a six year old friend’s sugar-fuelled birthday party across town. So I’ve just cheekily scoffed five Fig Rolls. I know it’s Lent and all, but Fig Rolls aren’t properly biscuits, are they? Not really. They’re more of a kind of healthy mulch food, a sort of veggie energy bar like you might find in a farmers’ market, where teensie women swing by in Range Rovers, wearing multicoloured wellies and carrying hessian bags with celery stalks peeking out. I mightn’t make it through this post without them. (The Fig Rolls, not the teensie women.) They’re possibly tax deductable. Must check.

What a beauty

Over the course of my Figfest, I read an article on journalist Kathy Evans, who has just published Tuesday’s Child, her story documenting the birth of her third daughter Caoimhe. It charts her journey, the shock, anger and grief she felt along the way, and the acceptance she now enjoys. Caoimhe (pronounced Kee-va, non-Celts) is five and a half and quite a little stunner. I grabbed this quote from one of the articles in the Irish Independent. It certainly sang to me.

Since Caoimhe’s birth I am gentler, on myself and on other people. Her vulnerability has taught me compassion; her learning difficulties have given me patience. If I slow down enough I can share her joy at things which I long ago stopped noticing. The way the sun melts at bedtime still surprises and delights her; watching the stars poke holes in the sky together elicits shouts of delight and not all of them hers.

I hope Caoimhe continues to teach the Evans clan such wondrous things.

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Meanwhile, the fight against prejudice goes on elsewhere. I’m always encouraged to know that some of the people in the trenches actually have a good grasp on what they’re talking about. Dominic Lawson in The Sunday Times sure as hell does. I don’t uniformly agree with him, but I always respect him, and when he writes about those ‘suffering’ with Down syndrome, he nails it on the head. He writes with insight: one of his own children has Ds. Last weekend he spoke about the death from cerebral palsy of Ivan Cameron, the six year old son of British Tory David Cameron.

…if the Tory leader’s exposure of his son was part of a campaign, it was a campaign about something much more important than politics. The message was that he and his wife were not ashamed or embarrassed to have a child with such profound disabilities – and, by extension, neither should anyone else be, in the same situation.

I certainly respect the Camerons for behaving as normally as possible in the abnormal situation they find themselves in. Media glare, I mean. I sympathise too for their horrible loss.

As to Lawson’s point above, we’re never out of the woods, not by a long way, when it comes to external prejudice. I’ve made my personal peace with that, and will fight when a loud enough loudmouth needs a smackdown. I’m not even going to try to be on constant battle alert, but when the opportunity to shout out some positivity comes along, I’ll try to jump in there too. People like Kathy and Dominic, as journalists, are in a good position to do this. I’m thankful that they are actively helping anyone who is ‘afflicted’ with this ‘challenging’ ‘disease’ by just being normal. It certainly adds to my reservoir of faith.

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lamhHere’s something else that helps: Lámh. What what, you ask? Sign language, I reply. Myself and Jacob’s Mammy started a three week course last Wednesday at St Michael’s House. Lámh (means hand, non-Celts, and rhymes with mauve, kind of) has a 600-word sign vocabulary and is the standard language used across Ireland for people with learning difficulties. Being in a room with 30 others who want to give their kids every possible break that they can is a very warm and fuzzy place to be. Can’t wait for next week.

Of course we need those breaks now more than ever, with the scythe that’s swinging its way through services for those with disability generally. Like it or not, we’re a marginal group, and people on the margins have to shout louder in order not to be left behind. The lack of proper speech therapy now in SMH is a case in point. It’s a basic need for anyone with a young child with Down syndrome. It has far-reaching implications for them. I’ll be coming back to this point, but it’s not something that we can afford to ignore.

Right. I’m worn out after that rant. Possible time for another fig roll…