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The angel of Angelman syndrome

Anonymous
Conditions
June 30, 2021
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If they had asked me to make a wish before I met him, it might have very possibly been for eternal happiness. I’d wish for happiness that floods the air with endless melodies and makes the soul sing, just like how a Disney princess. But I had met him first, and he redefined some of the heart’s most beloved concepts.

His eyes were flickering the way golden rays. His giggle sounded like the tune of a bird. He was lying there in a room white room, looking lively and laughing hard. He was happy. Happiness makes me smile. Happy people make me feel good. The sound of laughter tickles my soul. It’s more than a simple smile reflex many have.

I stood there admiring this little angel flapping his hands so cheerfully. He awoke the inner voice inside my head: “So eternal happiness really does exist. He must be so lucky to be doomed in happiness rather than anything else. His mother must be blessed to be caring for a child diseased with laughter rather than a child in pain.”

Happiness fills the heart with contentment. Laughter is contagious. She must be happy too.

I glimpsed at the mother with the corner of my eyes. She looked anything but happy. Instead, she was looking at him in expressive silence. I frowned. Her look revealed a lot. It answered my unspoken questions. It crushed my confident assumptions.

Her sadness was real; the boy’s happiness was not.

I looked back at the young angel. Sitting there like a little puppet, being manipulated by his genes. He was not living in the same world we live in. He was in a show of his own. He had finished his first bout of laughter and just started another.

I didn’t smile.

It wasn’t cute anymore.

It no longer made me happy.

It was actually painful, very painful. He’s doomed in a world of unreal happiness and has no way out. He might have been screaming his voice out at that very moment. He might have been sinking in depression all alone.

But there he lay, laughing non-stop, without control. All he could show was happiness. All he was allowed to show was happiness. A tear escaped from his eyes into mine. It must have been seeking liberty for so long. It must have found some connection between us two. Sadly, I suppressed it too. I, too, couldn’t just simply let it out. It’s part of the job. In the role I was playing, showing weakness is not allowed.

There I stood, and there he lay, both of us forced to mask our inner truth with illusive expressions. And I never knew how to say goodbye. Should I smile and wave as if I couldn’t see through? Or should I hold his flapping hand, look deep into his flickering eyes and give an understanding look?

I didn’t know what I was supposed to do, so I retreated silently. I left behind an old concept that was proven wrong. I walked back outside to the real world, deeply changed from the inside. And then they asked me to make a wish. If I hadn’t met the boy, I think I know what I might have probably wished for. But I had met him, and I no longer knew what I wanted.

The author is an anonymous physician.

Image credit: Shutterstock.com

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