...and beyond.
When she was
born, I held her, cradled her in my arms and wept over her
twisted
limbs, her struggles for breath.
We expected her to be
dead before morning.
But against the odds, she
continued to breathe. Nurses fed her with a
gavage and against all expectations, she began to grow. We watched her,
day after day,
week after week, expecting every day, every breath to be her last.
But she grew.
We called her
Madeline, and she was both
treasure and
trial for us. Her tiny face was a vision of
perfect beauty; golden curls and
sapphire blue eyes. But the eyes were flat,
unanimated and the tiny, twisted body stayed almost still in the beautifully decorated
crib in the corner of our bedroom.
She grew.
She did ... almost
nothing else.
I never went back to work. We couldn't afford the cost of a constant carer, and I wanted to spend every
precious moment with this amazing creature who we still expected to be taken from us.
We sat for hours together, her cuddled on my lap, warm body against my skin, my tears
falling into her golden hair.
I talked to her.
Sang to her. Shouted, sometimes, demanded she become
normal.
Her
response never changed from
nothing.
She was
deaf, our Madeline. And
blind. She was
crippled, and
brain damaged beyond any hope of
communication.
I
loved her.
I
hated her.
I wished she'd never been born.
I never wanted to be apart from her.
But in the end we couldn't cope anymore with watching her lie
motionless and
drooling, with her
angelic face and her
monstrous body both growing and growing.
The night she turned two I spent in weeping.
And in the morning I made the
phonecalls.
And after
far too long, and
not nearly long enough a place was found for her.
Madeline lives in a Constant Care Centre now, looked after 24 hours a day, seven days a week by people who are not
exhausted by the emotion of seeing their precious daughter in such a
dire position. People who go home to their
families, their whole children, their husbands not gone silent and withdrawn and filled with blame, when the guilt leaves a moment's
respite.
My daughter will indeed remain
chaste until menopause. And beyond. Even unto her grave.
Nodeshell Challenge and Work of Fiction