The perfect gift

I thought of the perfect gift for you this year. I thought I might give you time. What could be more precious? Better yet, I had loads of it. ‘There’s no present like the time, so that is what I’ll do’, I vowed to myself. ‘I’ll do that right away, mark it in the diary for next Tuesday.’

But time’s a passing thing, and Tuesday came and went. So did March, and July and September, and 2010 and 11 too. I spent so much of it, in truth, that before I noticed, it had all flown. I didn’t have time to be concerned though. You were four now, and the things I’d written about you, just weeks earlier when you were two, were still barely dry on the page. I was sure I’d had time to spare, an endless supply, but each tick of the clock was a grain of sand, crashing to the bottom of an hourglass that nobody tells you is there.

I frittered it away, too many evenings, too many days, on the things we have to do to get to the things we want to do. Time is money, but money takes time, and between you and me it took a whole lot of mine.

I can see it now, great big heaps of it, all in the rear view mirror. Up ahead there’s fog, and I’ve no way of knowing how much time there is. More for you than for me, I suspect, and I rejoice in that, although it makes me uneasy too. Your knack of slowing things down, of making me look at things that nobody else sees, maybe next year I’ll learn how to do that.

Next year I’ll give you more time. Next year I’ll spend it on you.

Roses are blue. It's time to smell them.

Amazing pirates

Often it’s easy to spot heroes. The cameras and the biographies give it away. They represent something that I can look at and admire and then safely ignore. Ok, maybe I’ll make that donation or pledge that mile, and yeah, they’re amazing, but they’re not really like me, are they?

Then there are those other heroes. The ones who are going about their business with an awareness of their world, and a quiet generosity that is often more powerful. They’re not Gandhi or Geldof or Christina Noble or Paul Newman, but they just might end up having a bigger impact on me.

We met a bunch of them last week. A day of activities for families across the special needs spectrum had been organised by The Variety Club of Ireland (a hugely impressive organisation that I must confess I’ve always been aware of without really knowing the great work they do.) They called it the Boat for Hope event.

Our aim is to share a boating experience with children who have special needs, and to raise funds for their comfort and benefit. The day begins with our special young guests, dressed as mini-pirates, departing from Howth Marina for a private adventure on the high seas!

It was deceptively simple and unquestionably took a massive amount of organising, for which we can only say a massive Thank you. An awful lot of people put in a gargantuan effort to make it a special day for a lot of children and adults too.

Firstly, it was an awful lot of fun!

Our protectors attack.

A dodgy character and no mistake

Aaaaghh!

Full photo gallery from Barry O’Loughlin here. (I hope you don’t mind my reproducing some of the wonderful pics, Barry.)

Secondly, we met Seamus and crew

Seamus McAleese was our captain for the day, and any impressions I had about yachting clubs and posh posers was quickly blown out of the water by him and his crew. They took our entire family into their lives, were generous without ever being pushy, took great pains to tiptoe around a bunch of idiot landlubbers and explained everything in fantastic detail. The kids had a most amazing time, and so did Mum and I. The Seamuses (there were two, which caused a bit of confusion initially) answered every question I threw at them and they involved Jacob and his brothers in everything. We all took the wheel, the boys attacked a few other pirates with water cannon and another crew member Ron insisted on minding Jacob while we sat back and relaxed.

I’d had no great hopes for the day really. We only heard about it at the last minute. But it turned out to be a highlight of the year. The fantastic weather, the great spirit of everyone and the generosity of Howth Marina boat club all helped. The escapist beauty of Howth Head from the sea, and the gorgeousness of Ireland’s Eye all covered with nesting birds, were certainly an added bonus.

But if I’m to be honest, the one thing that makes this day one that will never be forgotten was the attitude of the people who took us sailing. We felt privileged to be taken by them, but they made it feel as though the privilege was all theirs. Nobody had The Look, nobody felt the need to avoid certain subjects, there were comfortable silences too (rare among strangers, no?), there was a genuine generosity on the part of people who did not know us from the man in the moon, and they were incredible. When they left us back at the marina, myself and Jacob’s mam were actually too choked by it to say anything at all.

I don’t think we’re the only ones who want to scream every so often when either of us sees yet another Normal caught unawares and looking at our beautiful youngest child with mild but undisguised revulsion. Any one of those glances can be dealt with, internalised, rationalised and packed off. But woe betide the Normal who lets that look slip out on the wrong day. It hasn’t happened yet, but once or twice I’ve come close.

I’m saying this because these wonderful people, our crew for the afternoon last Sunday, provided the most powerful antidote I have felt for that feeling. I did not expect it, I did not know them, but I know them now.

Captain Seamus is convinced that being out on his boat is the closest thing to Heaven that you can find on earth. Days like last Sunday make it easy to agree. All of them seemed to be relaxed and in the moment with each other. In among the water pistols and the sugary treasure and the attacks by other pirate vessels, we got to share some life stories that somehow managed to overstep the small chat section. Condensed goodness. And the best piece of advice I’ve heard in a long time came as a joke from Captain Seamus as we were pulling back into the harbour. He asked me with a smile if I knew how to make God laugh. The answer was to tell Him your plans.

Seamuses 1 and 2, Ron and Lisa, we think you are quiet heroes. Thank you.

Jacob's brother Andrew, sandwiched between wild Pirate Seamus and Captain Seamus

Aye Cap'n, ye makes another very good point.

The only pic I have of Lisa. Sorry it's so bad, L.

A cabin boy ponders his new career path.

Pirate Ron with some golden treasure. Ok, red treasure.

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.