The future’s bright, so the famous advert tells me. I’m not so sure – most days I can’t see it as my head is buried too far in the sand.
I find thinking about The Future far too stressful and upsetting to contemplate, so mostly I just pretend it doesn’t exist – I’ll cross that bridge when I come to it kind of thing. There was a time I didn’t think beyond the next hour; then just getting to the next morning was a miracle I daren’t hope for. As time progressed and Hugh outlived his initial prognosis of two years I could begin planning a little further ahead. But even now, while Hugh is relatively healthy I daren’t look further than a few months ahead. And if I do make any plans, or make mere suggestions of plans, the sentences are finished with a ‘please God’ or a ‘hopefully’ or a ‘If Hugh is well enough’.
That’s the difficulty of living with a life limited and life threatened child; I don’t know what’s around the corner. To some extent, that is the same for everyone – no one really knows what can happen and things can change in the blink of an eye. But for the majority of people that don’t live under the shadow that such a diagnosis casts, you can look ahead with a relative degree of confidence. You might plan next summer’s holiday, or your child’s transition to secondary school. You can think and daydream ahead to college and university choices and weddings, perhaps. With Hugh, I’m not afforded that luxury.
I’ve been asked many times what future I want for Hugh. The social worker asked during his core assessment and it’s been discussed at the Advanced Care Plan meetings. I’ve been asked many times what I see for Hugh, what I hope for in his future. Every time it catches me, and I have to swallow a hard lump in my throat and bite back the tears.
What I want is ...
I want there to be a future for Hugh.
I want him to be here.
And I want him to be happy.
The thought of a future without Hugh terrifies me. I daren’t think about it.
Yet there is just one thing that scares me more.
And that’s Hugh living in a future without us there to protect him.
It’s hard to type that, it’s hard to admit what that actually means. I can’t bear the thought of losing my son, yet I’m terrified at the prospect of him outliving me. Who would look after him if we weren’t here? Without us there as his voice who would know what he wanted? Who would comfort him when he was sad? Who would sit with him when he was sick? Who would hold his hand and sing to him and tell him everything would be alright while the seizures racked his brain?
Hugh's big brother has the future mapped out. He reckons he’s building a house in his garden for Hugh to live in. He has aspirations of being a footballer or a policeman or a fireman or a farmer, but more recently he’s said he wouldn’t get a job as he’d look after Hugh when I died. That’s the way he thinks you see; at just 6 years old. He knows, deep down, that his brother will need lifelong care. He assumes it’s his responsibility when we’re no longer here to do it. I’ve told him it’s not, but he says he wants to. I’ve assured him he can live his own life and that Hugh will be looked after. That everything will be ok, there’ll be people there to take care of Hugh.
But that’s not true.
Because unlike him, I can’t or rather won’t look to the future.
I’ve not put any plans in place.
I’ve not thought that far ahead.
Because I can’t.
Because I’m too scared.
Because the thought of it is too terrifying to contemplate.
And I just wouldn’t know where to start.
My short term plan is to remain invincible:
I can’t fall ill,
I won’t get cancer,
My back won’t give in,
I won’t be involved in an accident,
I won't get old.
It’s also my long term plan.
Which is no kind of plan at all really.
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The aim of this blog post was to stimulate a discussion about how Special Needs Carers plan for the future.
Have you made plans? How did you start? What plans did you make? What first prompted you to put those plans in place? Has having those plans given you some peace of mind? Or are you like me, still putting it off?
Please let me know your thoughts either in the comments below or perhaps sharing your own blog post about planning for the future. Remember to link back to here if you do. (If we get a few, I’ll set up a little linky for us too)
“Project Safe”, an initiative of St Loye’s Foundation, aims to provide a service to support people with special needs and give peace of mind to their carers. You can help shape this service and ensure it is the kind of service you and other carers want and need by visiting their website here.