• Ali Isaac




I woke up suddenly. Something wasn’t right. I listened carefully to the sounds of the house all around me. Conor lay sleeping peacefully beside me. Vague noises from the telly room told me the boys were already up and playing X-box…before breakfast; we’d have to have words about that later. Something was missing, but what?

And then it hit me. Every morning I awoke to the sound of Carys’s voice, sometimes crying, sometimes whining because she wanted to be out of bed, sometimes gurgling and da-da-da-ing contentedly to herself, sometimes just to the music of her toys as she played in her cot. But always, I awoke to some notification of her existence.

This morning, she was silent.

The weight of her silence pressed down heavily upon me. Suddenly, all other sounds were blocked out by the dizzying, deafening roar of her absence. It was all I could hear.

I knew something must be very wrong. All my senses were screaming at me to jump out of bed and run to her room, but my body was paralysed. Fear had gripped me so tightly I could barely breathe, let alone move. I strained to hear the tiniest murmur, a rustle as she turned over in her sleep, a cough, anything to relieve this terror I could not shake off.


Now my thoughts were leaping with uncontrolled abandon around the confines of my brain. She would not be the first CFC child to have passed in her sleep. Her frail, swollen heart could fail at any time. She could have a massive seizure. She had vomited in her sleep on two previous occasions and not woken, although mercifully, she had been lying on her belly both times. Once I had found her with her blanket wrapped round and around her head whilst she lay on her back, arms flapping feebly at her sides, unable to free herself and too weak to cry out. And then there was the time she had passed out from coughing so much, she couldn’t pause long enough to draw breath. No wonder I was so afraid of what might be waiting for me. Sometimes, I don’t know how I manage to sleep at all. Oh…that’s right; sometimes I don’t.

A good parent would screw up every ounce of courage and rush to her child’s aid. Not me. I languished in my bed of misery, too afraid to confront the demons my imagination was conjuring up. Eventually, after what seemed an eternity of torment, I conquered them. I stumbled out of my room, and hesitated before her door. Upon it, her name was spelled out in bold, colourful letters. beneath her name, her chubby baby face peered at me from a favourite photo I had installed in a flower-shaped frame.

Taking a deep breath, heart palpitating so much I thought it would jump out of my chest and run around the floor with a life of its own, I pushed open the door.

It was dark in her room, but I didn’t switch on the light. I would know, even in the dark.

Carys was lying on her front, a petite, indistinct smear of soft colour against the white sheet. Her face was turned away from me toward the wall, her head a mass of tousled black curls in the shadows. I reached out and laid a tentative hand gently on her back.

She was breathing. I tip-toed quietly out.

#CFCSyndrome #worry #specialneeds #motherhood #mothering #disability #AuthorAliIsaac #lackofsleep #CardiofaciocutaneousSyndrome #fear #Carys

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