Could I have a lift…?

‘I’m not sure how much longer I can carry him. And that makes me sad’.

This is a conversation we have at home frequently.

At just over 20kg Small is way over the limit of safe lifting and at just over 104cm high he’s also way over the limit of safety full stop. Sometimes it’s all I can do to contain him in my arms when my little boy starts to have an excited flap as we go downstairs for breakfast… Food, Mummy? Daddy? Woohoo!

At school – as he was at nursery – he is hoisted everywhere and by all accounts thoroughly enjoys the experience and, naturally, it protects the backs and the knees of the staff. And I know it’s brewing – for all the right reasons – at home as well. I have knocked it back on quite a few occasions, but it’s time…

We have had the people in to measure up our stairs for the stairlift, the ceilings for the track for the hoist and the bathroom for the most overly engineered bath in the world ever. There is a changing mat on top, which then lowers the bath-ee into the water, and then the bath itself raises up on hydraulics so the carer – Mummy?? – can wash the bath-ee in comfort. Bath-ee is a word, right? It is quite staggering. And thank you to whoever invented it as it means our small bathroom can accommodate it.

But my house is about to fill up with more Stuff. More Things. And it’s really In Your Face Disabled Stuff this time. It’s not a brightly coloured therapy mat or a gently re-designed high chair it’s a lot of quite ugly plastic that I never asked for. I know get over myself, but… I didn’t picture all this gear in my house when we decided to have children, it really wasn’t part of the Plan and so permit me a moment to shout that It’s Not Fair. And then, Pollyanna style, I can move on.

There is however a further thought that lurks in my mind. As Small is not verbal the relationship we have with him is, naturally, a very physical one. We can’t debate the finer points of Octonauts, or decide whether we prefer red cars to blue or even whether green foods are good for us, but we can tickle him to make him laugh, play music that makes him stop and smile and rough and tumble him all over the floor. He loves physical interaction – he reaches out for proper big hugs, he wants to be picked up… dear God… he loves being picked up. We pick him up to carry him from place to place, we pick him up to show him a different view, dance with him around the kitchen, we pick him up to comfort him when he’s sad. What happens when I really, truly cannot do that any more? Every parent wants to pick up their child, sit them on their lap, it’s the most natural thing in the world… and it will be hard to lose that. Equally, how do we replace it?

So, hooray that this equipment will be coming to practically ‘manage’ my son, my four year old child, but I’m hoping that before that arrives we can find some creative solutions to the emotional challenges to come – how to continue that physical bond with my little boy…

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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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