What was I thinking?

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


Last night as I got the children out of the bath and made my way into my bedroom to get them dressed, I had a bit of a moan at Seb who had found a box under my bed and scattered photographs all over the place and made my, up-until-then tidy, bedroom untidy.

I am largely guilty of keeping photos in digital form these days and so as I was collecting them up off the floor I couldn’t help stop and look.

The majority of photos were of Seb’s brother as a newborn. Unrecognisable almost, he doesn’t bear much resemblance to the little boy he is now. Dark haired and enormous, with small, wide set eyes – and clearly doted on by Seb.

Then I found this one. It really did force me to stop. For quite a while.

I can vaguely remember the day it was taken. We were in the bathroom but I haven’t seen it for years, it’s never struck me as a special photo really…..until now.

I love so much how I am looking at Seb, who was just a few weeks old, and I wonder what I was thinking.

Was I looking at his “upslanting eyes” and wishing they were horizontal? Was I looking at his “flat features” and wishing they were fuller? Was I feeling his “hypotonia” and fearing he may never walk? Was I full of a heavy heart and feeling the burden of a lifetime of difference and being on the outskirts? Was I looking at “downs syndrome”?. Was I consumed and overwhelmed with all the information I was dealing with the the new path I didn’t want to be on?

Or was I looking deep into his beautiful almond eyes, that now make my heart skip a beat when they look up to me with such warmth and sincerity? Was I looking at his delicate button nose and thinking how cute it would be when he has to continually push his glasses up? Was I feeling his floppiness and thinking how incredible it would be to watch him playing football with his friends, riding his scooter in the playground, scaling the climbing frame in the park and running rings around his friends? Was I feeling the magic and mischief of this little boy who would be so full of energy, would soak up every experience with a lust for life like no other and would become the centre of our (very typical) universe? Was I looking at a boy, an individual, my son who would be defined by his likes and dislikes and his personality, and not his chromosomes? Did I realise how much this journey would teach me about equality, humanity and priority?

I won’t ever remember what I was thinking at that precise moment the photo was taken, but I know that I wish I could be given the chance again to pull those soft, round cheeks to my own, kiss his delicate face, sniff his soft, fluffy hair and know what I know now.

Instead I’ll happily settle for a squish and kiss before he zooms off into his classroom this morning….if he’ll let me!

2 thoughts on “What was I thinking?”

  1. Tracey Cook says:

    i think you are the lucky one. to experince such love and joy every day from your Seb. I have worked with adults with disabilities for the last 19 years and they have been an absolute ball. I wouldnt change a day.


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