• Ali Isaac


Carys at 2 months old, pre-surgery. The haemangioma was to double in size over the next 2 months. You can see here it's already starting to push down on her eye lid.

Carys at 2 months old, pre-surgery. The haemangioma was to double in size over the next 2 months. You can see here it’s already starting to push down on her eye lid.

The birth of a child with a rare syndrome like Carys is truly a lesson in human nature, your own as much as anyone else’s. It’s like taking a trip into the dark side of your soul. It’s not somewhere you want to get lost.

On this journey, we discover many ugly emotions lurking beneath our skins on a scale we never thought ourselves capable of; anger, despair, jealousy, shame, sorrow, confusion, self-pity and depression, to name but a few. And worst of all?


For the strangers, who treat us like freaks. For the professionals, who treat us like an exhibit. For the friends who treat us like we’re made of china, whilst trying to hide their normal, perfect lives and normal, perfect children. For family, who aren’t there when they’re needed.

But all that is understandable, forgiveable. What’s not, is the hate directed at the child, that sweet, smiling, innocent cause of it all.

Confessing is so very hard to do. I don’t want to hear myself say it, because that makes it real. It makes me a monster, not a mother. Not even remotely human.

But it’s true. And here’s why; all I can see is a lifetime of changing nappies, mashing food, coping with tantrums, singing nursery rhymes to an adult child who keeps patting her head for yet another performance of ‘head shoulders knees and toes’, caring for a baby who never grows up in the true sense of the word, despite getting bigger.

And I wonder, will I ever climb a mountain again, hitch-hike across South America, stay out late drinking wine with friends, and not worry that I have to stay sober in case Carys goes into heart failure during the night and I have to get her to hospital? Will I ever feel weightless and carefree again?

Probably not.

And then I feel guilty for being so selfish. The hate creeps back in, suffocates me with self loathing, and that mocking, disdainful inner voice tells me I don’t deserve a child like Carys. In my blindness, I don’t even know which way to read that statement.

That dark side of me is relentless. It haunts me, never leaves me. It has become my cruel, faithful shadow, waiting eagerly to enfold and absorb me when times are tough. It reveals to me what true ugliness is, and it terrifies me that such a parasite can lie coiled up so tightly within me. Sometimes I get lost, and then it senses my vulnerability, it pounces and makes me do things I never normally would do.

So it was that one night, I almost deliberately ended it all. It was dark, I was driving, and the headlights of an oncoming truck were dazzling, mesmerising. It occurred to me how easy it would be just to swerve across the road into its path, just a tiny twitch of the steering wheel was all it would take, and then the deed would be done. Peace. No hatred, no grief, just nothing.

I didn’t do it, because in the dark, I’m a coward. But even over-riding my cowardice, my love for my children and my husband was stronger. I couldn’t do it to them, couldn’t leave them. The truth is, if you haven’t guessed by now, I love them far more than I love myself. And that’s how it should be; it’s the shining beacon which always leads me safely home, abandoning my trusty dark side and ugliness at the front door.

Shortly before Carys had surgery to remove the haemangioma, the birthmark which had bloomed on her forehead in the days following her birth, I took her shopping at our local mall. I was used to people gawping in her buggy as if it contained something they’d scrape off their shoe. Being used to it didn’t make it any easier to bear, but my choice was to tolerate or hibernate. I hadn’t expected to be hounded around the shopping centre by a group of children old enough to know better, quite frankly, who laughingly pointed out her deformity (just in case anyone happened to miss it), and exclaimed loudly, amid mock puking, how ugly my daughter was. I think the exact terminology went like this, “It’s (not she) disgusting!”

Instantly, hatred and anger flared and went to war inside me, using my soul as their battlefield.

But I think we can all see the real ugliness here. It has nothing to do with facial disfigurement. In fact, it has nothing to do with physical appearance at all.  Like it’s polar opposite, beauty, it’s something which can only be truly found on the inside of a person.

That’s why Carys has nothing to hide.

#CFC #delayeddevelopment #fate #raresyndrome #depression #specialneeds #motherhood #emotion #haemangioma #mothering #anxiety #anger #stress #CFCInternational #hate #disability #disabled #CardiofaciocutaneousSyndrome

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