How fragile is this life?

I’ve felt the frailty of human life more keenly this past week. I suspect I’m not the only one.

Our Swan community has taken a battering of late. With our community ever growing and some of these beautiful children with more complex medical needs, it was possibly naive to assume bad news wouldn’t come our way but. Still. We are losing our children.

Losing? We haven’t lost, mislaid them. They are dying. These children, so young, so beginning on their paths, are dying. It is heartbreaking.

We share our downs as well as ups, which is what makes our band of Swan families so amazing. The warmth that floods out in times of true need is quite uplifting. But it is also heartbreaking. And occasionally I find I have to look away, if only in order to preserve my sense of self. To maintain my core. To not dissolve. I’m not proud of that.

You could say – if you were not in our situation – if you were looking in, unfettered by children with needs, that it was a blessing. That they have been released from their life (what life? you might say) and that their family can get back to some kind of normality now without the constant strain put on life by the child, the lack of sleep, the constant hospital visits… But it is not a blessing.
This is our normal.

When our children were born with their unique-nesses, their differences, their very swan-ness that makes them who they are, we grieved once. We grieved for the child they would never become and the life they would never lead and the family picture in our mind’s eye we had to alter. This grief has no timescale, it is there and it takes time to work through. On some level, it never leaves. But we adjust, we accommodate and we see the child they are, the life we think they will lead and the family life we will grow to have. And these are good and wonderful things.

No one should have to grieve twice.

And as with all things awful, we turn them, guiltily, on our own lives and we are grateful for our children, our life not ripped apart. And I look at my shadow, my constant companion, Small, in all his unique wonderfulness, and I watch him every day unfurl into my little boy… I am not blind to his difficulties, I am not blind to the time he takes up, the emotional capacity he leaches from me – the sheer intensity of it sometimes leaving me unable to give Big all she needs – I see how sometimes he looks like a little old man and I wish I could see into his future. A little Flash Forward moment. But this is not how life works.

So instead.

I just hope.

We all hope.

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Listen…

Small is talking.

Not actually talking you understand otherwise, yes, you’d be right in thinking I’ve skipped a few stages in the telling. But we are hearing proper babble. It crept up on us on holiday. He was ‘singing’ more. You know the Clangers? Suddenly there was one living in our house…. ‘Ooh ooh… Loo… Loo…ooh’. It’s beautiful to hear. It might not be to the outside world, but to us? Oh my goodness.

And then. Proper sounds. Suddenly we have ‘Bbbbb…’, ‘Yyyyy…’, ‘Ddddd…’ And these in turn run into M’s and Muh’s and lovely giggly Guh’s… And suddenly we see a developmental stage just slipping in there, under the door. I can hear his voice.

I have to repeat that sentence: I can hear his voice.

And it was only when I realised that I could, that I saw how much that actually meant to me. This is how pre-schooler Small sounds. And it is a sweet sweet sound.

Sometimes he even directs the right sound at me, his father or his sister, but he’s equally likely to direct it at his favourite toy (it’s a ladybird), the coloured glass panels on the front door or the lovely lady in Sainsbury’s who always comes over to say hello. (She’s clocked him, this too big to be sitting in a trolley boy, and she’s so lovely to him). But we don’t mind. It’s just so nice to have both my children talking to me from the backseat of the car and there are moments – when Big can no longer be distracted from talking about the intricacies of Minecraft – that they make as much sense as each other :-). But it’s how it should be. Both children making themselves heard.

Last week, in a bid to add more process to our lives, Big suggested that every time Small made a sound we should give him a toy, to encourage more sounds (sound = toy, must make more sounds…?) I explained that current thinking was that you should mirror the sound back – so Small knows that his making a sound encourages you to make a sound, so you are concentrating on and encouraging him.

And she did.

And then Small knocked on the car window and so did Big and then Small kicked his feet on the car seat and so did Big and all of a suddenly there were my children… Interacting and giggling. Just like I’d always hoped they would, but had never been sure they could.

There’s that normal again.

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Oh yay, swimming again! No Mummy, it’s not too cold!!