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.



2 thoughts on “How fragile is this life?

  1. A tragic, wonderful post – saying everything that I think every day. My 15yo SWAN stopped being a SWAN a couple of month ago when we got our diagnosis – a day that was incredible but also left me devastated and crying for days. He’s been a Swan for 15 years – it feels beyond bizarre that he’s not part of your community – our community – anymore. And so we’ve joined ‘Unique’ instead (there are 45 cases of his syndrome known worldwide). Different children, with different diagnoses. But still they die. Getting a name, a diagnosis, doesn’t get a cure. At his school, a good year is where only one child dies. In a bad year, four or five of the children may become angels. And it never gets easier. All we do is hold on to our kids and hold on to each other.

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