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Anna Kennedy needs you to complete this very important survey: Who will look after my sons when I am no longer around?
Click here to sign and show your support.

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After We Have Gone – an article by our Charity Champions Dawn and Keith Avery

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As I write this blog it is nearing a special birthday.  Not for us but for our son, he is nearing his 30th.  It should be a time of joy and celebration, and of course it will be.

However as with every momentous moment it is marred with a darkness, a worry that has been there from the moment we received his diagnosis. Like every other parent I am sure, who has a child with additional needs you try to not look too far forward.  For us we have not been able to stop thinking about the inevitable.

We have spent our entire lives supporting him and encouraging him, in the hope that he can manage life independently.  With realism we think our hopes of him living completely independent are evident, he will always need support. Sadly, and with a heavy heart that will not always be able to be from us.

We do have an elder son, who, to his credit has always insisted he will become a full-time carer, if anything should happen to us.  As much as we love the thought of this it is also unrealistic, our elder son has a wife and family of his own now. All be it we have no illusions he will monitor his brother’s wellbeing, the worry of him taking on such a task is another fear.  We could not put that onto him or to his beautiful family, it would not be fair.

With every passing year the fears arise to haunt us, who will keep him clean and tidy, who will encourage him to change his colostomy bag? Who can ever love and cherish him as we do ourselves? Tears are burning my eyes as we talk this over, for the zillionth time. We have an annual discussion with his social worker, the question arises, let us talk supported living? Up until now our son will not consider a life without mum and dad beside him.  I am not even sure he has the capacity to see that in his mindset.

He is comfortable and has accomplished so much with our support, he is a good man with a lot to give but given this he still needs us supporting this.  He needs prompts to do the most menial tasks in everyday living. We may take these things for granted because his way of life and routine is ours, we accepted this way back when.  Would anyone else consider giving their own wants and wishes away to cater for the needs of another adult fully?

Our lives from the moment he was diagnosed has been engulfed with his needs.  We very much doubt others would commit as we have, which is why we live in fear of what the future holds. Our aspirations are different to others, we want him to be loved by someone as we love him, to be cared for as we care for him.  Sadly, our fears are thus of many.

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Who will care for him when we are gone …? We will go to sleep tonight with that very question remaining embedded in our hearts!

We lay in bed and ponder, of what the future holds

Of when our time will come to pass, of when our fears unfold

Every waking hour, we hope to find the peace

Of knowing he is cared for, and our worries they may cease

From the point of diagnosis and every day there in

We fear of when we have to leave and who will care for him

He has a loving brother who will try to see him right

But fearing he has to give so much, for us another fright

Who will love him as we do? Who will hold him dear?

Sadly, we can’t answer this and so continue with our fear

Who will love him when we are gone, who will care as we?

Sadly, we can’t answer this so for now its still us three!

By our charity Champions Dawn and Keith Avery

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