The following poem is from a collection of 41 written by me to try describing Huntington’s Disease (HD).
Because of the constant drains on sufferers and carers the need for respite care is very important. However, there are very few places for families with HD to go to where the special equipment and knowledge of the illness is available.
Here I have tried to imagine a family actually being able to find such a place that will take them as a family unit. Even then, I can’t imagine the wife in this case will have been funded or accepted without a fight to get there.
The Normality
The children playing on the beach,
The mother taking sun.
The father too on holiday,
A family having fun.
A common scene you’d like to think,
But look again, you’ll see;
The father in a wheelchair,
One child with JHD.
They’re at a special Centre,
But the wife has had to fight.
Resources are so scarce it’s sad,
They are not there by right.
For one week only of this year,
They block out their HD,
And feel the thing they long to have,
That thing..? Normality!
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