Still Learning

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additional needs, down syndrome, down's syndrome, equality, family, inclusion


A couple of days ago I was holding my baby daughter in my arms and something happened that literally took my breath away. I glanced down at her and was struck by how much she looked like her oldest brother. It could have been him in my arms. On the face of it, this is nothing unusual, it must happen to parents everywhere, every day. After all, pure siblings share the same genetic make up.

The same thing happened the day she was born. She was handed to me, wrapped in a towel and the standard issue smurf hat, and my first overwhelming thought was how like Seb she was. Such was my surprise, I spent the first 24 hours of her life wondering whether she had an extra chromosome. From my own experience I know what to look for and deep down I knew that everything was as it should be.

I am really ashamed of these thoughts now. I didn’t consciously think them, they just appeared, but as someone who tries to educate that people with Down’s syndrome are more like their families, their brothers and sisters, their parents and their cousins, than they are like each other, I should have known better. Five and a half years on and it seems I am still learning.

Seeing Polly as Seb was a bittersweet moment. It made me realise how I missed out on Seb’s precious baby days. I couldn’t see a baby. I just saw Down’s syndrome. Every time I looked at my boy my heart shattered into a million tiny pieces as I made a mental checklist of all the features I had read about in all the literature I had been given. His almond eyes, his small ears, his button nose. I failed to see beyond. I vividly remember one day bouncing him in his chair, sobbing my heart out, and he looked right into my eyes and beamed me the biggest smile. Just. Like. Polly. Does.

I also remember wondering what Seb would look like without his extra chromosome, photoshopping his beautiful little face in my mind. Making him longer, leaner, ‘normal’. Yet all I really needed to do was to stop seeing him as a syndrome and see the person that he was.

Yes. I am still learning. Bear with me.

SEPT 2013

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