• Ali Isaac

The Art of Coughing

Updated: Mar 11, 2020


It was a rough night. It’s hard caring for another sick person when you aren’t feeling so great yourself. Carys has a cold. That’s all it is, just a cold. But even the common cold can be dangerous to someone with little or no immunity.

I hate to say it, but when I was finally able to put Carys to bed last night, it was with a guilty sense of relief. She had been hard work all day; the poor little thing was so congested, she had had trouble eating, refused to drink, and I had the stress of trying to get all her routine meds into her, along with paracetamol and cough medicine. She cried a lot. She wanted to be held, yet pushed me away.

The coughing is always worse at night. Some of Carys’s reflexes are not very well developed; orally, she can’t suck or chew, and swallowing  and coughing are weak.

I was anxious, because I was expecting it. At 11pm, just as I was making the decision to go to bed, the coughing fit started. A couple of big coughs, followed by a rapid succession of decreasingly smaller ones coming so fast, one on top of the other, she couldn’t draw breath in between.

I rushed into her room, but I couldn’t move quickly enough. Everything had slowed except the thudding of my heart and Carys’s coughing. I was shaking so much, I could barely unzip her bed tent to get into her. She was all tangled up in her blanket. I grabbed her and hauled her into a sitting position. She was just so heavy.

And that’s a give away sign, isn’t it? When a person becomes unconscious, they become unbelievably heavy, as their body loses control of its internal support system. She was completely unresponsive by now, and limp.

I was panicking, because this had happened too often before. Every time, I fear I may not be so lucky in getting her back.

I lifted her as well as I could and tipped her forward. I pounded between her shoulder blades, and rubbed her back, calling her name. And after what felt like the space of eternity, she stopped those lethal little coughs and began wailing weakly.

I held her for a while, and she drifted into sleep. She was breathing peacefully and regularly, so I lay her back in her bed, and went next door to my own. I was afraid to sleep in case it happened again and I might not wake to help her. I tried reading some of your blog posts, but I couldn’t concentrate. I tried typing comments, but I was still trembling too much, I kept pressing all the wrong keys, so I soon gave that up.

I lay down and just listened. Eventually, stress and exhaustion took hold, and the next thing I knew, I was waking to a silent house. The light was still on. My phone, still in my hand, told me it was 230am. I got up and padded to Carys’s bedroom door. She was still breathing. I went back to bed and slept till 6am.

Carys has so many serious medical conditions. We know one day, one of them will most likely take her from us. Our tiny CFC community has lost too many precious children in the past year. But often, deaths arise through complications borne of common ailments which the rest of us can easily fight off.

Coughs are annoying, and unpleasant, but they serve a purpose; they clear phlegm and mucous from our air passages, ensuring that we can continue to breathe and thus supporting our basic life functions. So coughing is good. Its a natural reflex we take for granted.

But the art of coughing is not something Carys ever mastered, and although she is growing bigger and stronger, I don’t think she ever will.

#CFC #raresyndrome #specialneeds #coughing #unconscious #cold #breathing #infection #mothering #disability #cough #CardiofaciocutaneousSyndrome #commoncold #Carys

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