Monday, January 17, 2011

A moment of real realisation...

Shortly after Eilidh's diagnosis it was suggested that we apply for Disability Living Allowance (DLA) which is a tax-free, non-means tested, non-contributory benefit for the under 65s to help with aspects of personal care.

We were told to apply but to wait for help with the forms as they are known to be a minefield of questions :
A Social Work Care Assistant would help us...
But she was off sick...
We'd have to wait 6-8 weeks to see her...

I'm glad that we didn't wait...
It took 16 weeks for a Social Worker to contact us...
With a little bit of experience of filling out the forms I decided that I could do it without any help.

Yes, the form was quite frightening
BUT
it wasn't the form but the realisation that our futures had changed,
that SMA was part of our forever,
that we were carers,
that our beautiful little girl was
Disabled...
Disabled?
Disabled?
How can this be true?

Suddenly we had the certainty of diagnosis
But our future was so, so unfamiliar:
I had no idea what the future would hold...

I knew that Eilidh was going to be more dependent on us,
dependent on our family and on, to a certain extend, society too.
No matter how independent she would be, this would be achieved with the help of others...

My daughter is disabled...
We are her carers...
How can we do this?
Who will care for her when we are gone?

Filling out the DLA form was so much more about facing our fears and coming to terms with the realisation that Eilidh was disabled and that we needed help to care for her and to help her be the best that she could be. Not just financial help, but help emotionally and physically too...  We needed to believe in people... 




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