Something different

Something more unusual today: two different creations both designed to raise a little more awareness of MPS in the wider world.

Firstly, Melissa Hogan, the mother of another boy with Hunter Syndrome has co-written a song that perfectly describes what our lives are like. The song called ‘Alive’ has reached the final of an international competition (Country category) and it needs your vote. You can vote here every day until the 15th April. The video is on Youtube and has lots of pictures of other Hunters boys – you may see some resemblances between them and Pudding.

Second, some of you may have seen this already, but I sometimes enter a writing competition called Hour of Writes where you have an hour to respond to a particular prompt each week. I have been doing my best to write about something other than MPS! However, a couple of months back the theme was Youth of Today and I couldn’t avoid it. This entry was fairly well-received:

I see them
Loping along in packs
Long legs eating up the asphalt.

I see flocks of them
Swooping across the road on two wheels
Heedless of oncoming traffic.

I scowl and want to shout Take more care!
Life is more precious than they realise.

I see them
Huddling on a freezing corner
Dragging on a cigarette
Hurling insults and obscenities at each other.

I see them
Prowling their territory
Preening and edging around the other sex.

I warm to these signs of frailty
The first fumbling steps in the courtship dance.

I see them
Moving aside for our buggy
Glancing at my son
as he gabbles an incomprehensible greeting.

Do they see his otherness
A simple mistake in tangles of DNA that has diverted his future
Waste products building up in this body I love so much
Grinding his brain to a halt?

I wish I could see further
See him strutting with the other lads
Being teased by a girl.

I wish I could see a woman like me
watching him with disapproval and tutting
Muttering under her breath, ‘Youth of today…!’


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