A Short Dance with Duchenne
by Deborah Robins

For forty full phases of the moon, he knew God.

He wriggled happily like a maggot child in a marsupial pouch,

And dreamed to a slow bass drum that made him forget

His own quick pulse....his separateness.

He could have stayed forever there,

But they said he was late;

That they needed the bright white room

And the funny little bed with only boards for mother's legs,

For other women.

He did not like the bitter sap that stung her soft walls and

Pushed him away,

And he cried for equilibrium lost.

Auf Wiedersehen sweet belly.

For five short years, he knew a carefree life.

He grew like a plump peach and belonged to the race of children

Who ran and swam and called over their shoulders to him.

He would have stayed for longer but the spaces grew wider.

Angry faces said, "Hurry up. We are always waiting for you."

He stumbled in the races so that he didn't have to finish.

He grew sly and found more tricks

That would save the hot flush of his face.

The doctor said, "Now hop....now skip...now get up from the floor...

That's fine.... That's very good". Was he blind?

But his mother and father cried for days.

And there were more games with doctors and less with friends.

None of them asked him to dance.

His father sold his bike and he felt his mother's body often in his bed.

Auf Wiedersehen brief childhood.

When a hundred yards seemed like a merciless wasteland, And a flight of stairs like a mountain,

And his voice grew hoarse from shouting at the backs

Of diminishing youths..... he surrendered.

He was strangely grateful for the gleaming wheels

Which catapulted him back and forth.

And for a time, it was grand to call over his shoulder to them!

But there were still mountains...and medicines... and treatments...

And a breathlessness without the dancing.

The hum of motors invaded even his sleep

Until he was too tired to wake...even for mother's crinkling eyes,

Even to return his father's taunts,

Which were the leather scented upholstery

Over a hard board of love.

At nineteen, they buried my nephew

In a deep belly, between two ninety-year-olds.

In the wind whipped distance, I thought I saw a toddler with white hair,

Thrusting his hips oddly and writhing in pleasure to phantom strains.

Auf Wiedersehen Duchenne

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This article is from Living For Today, Preparing For Tomorrow. From Parents. To Parents. A Parent's Guide to Living with Duchenne Muscular Dystrophy

This book is dedicated to the parents and guardians who battle against their worries, who must prepare for tomorrow and yet grab hold of today, striving to make today the best day for their children and family.

 "Do not worry about tomorrow for tomorrow will worry about itself.
Each day has enough trouble of its own."     MATTHEW 6:34 NIV

© Copyright 2001-2002, Rich Clingman, All Rights Reserved - www.LivingForToday.org/copyright.htm
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