Families

[Guest guest]

As a child whenever I had a hospital appointment my younger sister had to

come too. For a while we lived in the North East of England and in the winter we

were often snowed in but we still had to keep hospital appointments. My mother

all my life has reminded me of the hardships both she and my little sister had

to endure i.e waiting for delayed buses in the snow etc.

When I discovered I had CMT at the beginning of the year a woman I knew

vaguely offered me councelling for which I am eternally grateful to her for

because she's helping me to try and get my head round the whole thing - I don't

think ever shall but.

However we talked through my families attitudes etc and on the 21 February

this year I wrote a poem. Forgive me I'm not a poet but it sums up how I feel

about my family. Its called 21 February 2000.

Today - the ghosts that haunted my able body

are freed from my disabled frame.

The guilt, the anguish that has been part of me

is fleeing, thank God things will never be the same.

I was born with this terrible disease

I didn't choose it, so why should I pay

for the trips to the hospital when knee deep in snow

when all the time I didn't have a say.

Choosing to become parents is a gamble

we all dream of the perfect baby

but, I arrived, my feet twisted and deformed

it wasn't my fault you know that, but maybe...

You can stand back and consider my loss and pain

and realise we can never be parent and child again.

Sue XXXX