A Poem From A Parent Of A Rainbows Child "Sebby"
1st March 2009
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Thanks to Steve for sharing this poem about him and his son Sebby

I feel as though I'm in the way but try to keep my poise
He's humming themes to drown the screams and making baby noise
This child's distressed and I see unrest, these cries are seismic league
He's just cradling him for comfort, and he's exhausted with fatigue

I look again and fists are clenched of both father and this lad
The vacant stare, going nowhere, but piercing into Dad
My prejudice turned upside down, and clarity is found
Both screaming out for moments' peace, but the adult makes no sound.

You see this child is spastic but the judges can not tell
A completely helpless victim in an oxygen absent hell,
His CPU and motherboard corrupted by a cyst
And nothing can be done for him, no doctor can assist

"His life will be quite limited, how so we're yet to tell
He's blind and quadriplegic, maybe epilepsy as well
A full life is quite possible, it just takes time to see effects
At this stage it's all potential, goodbye, good luck ..and NEXT!"

He's in and out of hospital with the victims in the dark
Endless examination room to see if brain will spark
And blue lights on the ambulance when breathing takes a pause
It's touch and go chest x-rays show, but shirks the role "lost cause"

A pump drips milk in rhythmic beat, as this child dreams out his pain
Induced by morphine cocktail in constipation game
He looks so like a baby and yet his eyes are aged with grace
And every early photograph has a tube taped to his face

So where find inspiration, the thing to grab your throat?
The ones who clutch your testicles the ones to float your boat?
Well this is not your movie star or charismatic best
Instead they're singing quietly, the ones I now address

If the carer dares feel glory, it's a warming or a glow
Every day that bit more difficult as human beings grow
Yet competition is fierce and real, the child might be their own
The boy just thinks they're playing and laughs loudly while they groan

The credit risk in caring is re-mortgaging their hearts
The payback is appalling, life expectancy only in parts
And yet they're found despite themselves, not turning on their backs
The Children hospice workers who can't avoid the facts

The boy's name is Sebastian named after the hero Coe
Born in tragic circumstance when twin brother failed to show
His holiday camp was Butlins, the hospital LRI
And Rainbows was the hospice where Sebby was to die

There were hundreds at the funeral touched by his little life
Drawn in uncontrollably, moths to the brightest light
Smiling, sharing stories, unashamed in their joy
They all had big investments contained within this boy

The nurses brought his rugby ball that Leicester Tigers signed
The hospice brought a music film, his singing clear, the bells he chimed
The nursery brought his nameplate for wheelchairs welcomed more
The "Sebastian Baby Unit" now displayed above their door

The last piece is from the family helped by all these gentle folk
Who gave themselves without regret to bringing light and hope
These are the inspirers, the ones with inner glow
They are the courageous who I'm privileged to know

The thing is this isn't glory, you're just the best that you can be
No winning badge, no medal won and there'll be no OBE
It's never really good enough, but be encouraged every day
A giggling boy who knows he's loved, blows everything else away

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Thebestof L

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