What Are You Staring At?

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

WHAT ARE YOU STARING AT?

Today I had one of those moments that creep up on you from nowhere. You know, when you are going about your usual business but you catch your breath as you realise how grown up your child suddenly looks.

A few people have mentioned to me that Seb has had a growth spurt, he’s just had his hair cut and as a result I saw it in a split second as we walked from school.

The day after Seb was born and we were told he had Down’s I was gripped with fear. I was frightened of every single second of every day, from that very moment onwards. Our lives stretched out before us and the enormity was like an actual, physical weight. As the fog began to lift and the label smaller, I started to fall madly in love with the little boy that shone out so much harder than his diagnosis. I finally realised he was my boy, not a page in a leaflet or text book.

But once I found this inner peace and began to relish motherhood, I moved the goal posts. I started to fear the day he was no longer a cute pre-schooler. I dreaded the day that people would start to stare or feel pity or sorry for me.

He started school, and as my first child, it opened a whole new world…..and set of emotions. Pride, worry, protectiveness, joy, stress – the same emotions all parents experience when their children start school.

Just the other day I started watching the incredible documentary based on the life of Neil Baldwin, it happened to be a day I had started feeling sick about the future again. Seb going into Juniors next year, the academic gap getting wider, then Seniors, then hopefully work and independent living. I’d also begun to have the horrendous thoughts that consume me about what will happen to Seb when I leave this earth. As morbid, and maybe as selfish, as it sounds I wish he could come with me. At the very least I wish to live to a million years so I can watch over him, see him grow up and protect him forever.

But suddenly there, in that one instant, as we were walking out of school, Seb was there. He was the little boy I had once dreaded. The boy I feared. The boy I knew I couldn’t cope with. But really? Really, what did I feel? Overwhelming love and pride. A mother, looking at her son, taken aback by his beautiful face and beautiful soul, thinking how grown up he looked. That’s it. No fear, no dread. Not one single dot. Don’t get me wrong there are still times when I think I can’t cope, but i live by the mantra “if it was easy, it wouldn’t be worth it” and that fits with all my kids. Hard, relentless work but so worth every struggle.

And it’s not to say I don’t still feel a huge amount of anxiety about when Seb is a teenager and beyond but I know, I know I will still feel that huge maternal swell of love and bond and pride. It won’t be taken away. And with that, I have faith that everything will be all ok….we will grow together one step at a time, just like my mum promised me we would 6 and a half years ago!

And if anyone stares, I reckon it’s because he is so blinking handsome

*takes mummy goggles off and places them on the table*

OCTOBER 2014

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